Wendy - you are such a star! Thanks so much for this -  it is a great relief to know this is possible.

Difficult to talk at the moment as my young children are around all the time on school holidays.  Just two quick questions if it is not too much trouble and I will ring you in due course to discuss further.

What would the process be - you say a genetic counselling session - do I/my relatives need to be tested first,
as I am not sure my sister/mum will go through with the test.  If they won't agree to testing, would they then refer me for the surgery if my history seems suitable?

Where would you normally recommend the surgery taking place - I know you have close links with the Genesis Centre?

I really can't thank you again for your kindness.

With very best wishes,

Nicola 

Wendy, and everyone at NHBC Helpline;

I want to say a great big thank you for giving my Mum some much need support from people who are able to advise her of the FULL range of choices she can make for her future. Thanks to you, we are now equipped with the knowledge, and support, to move forward and get some proper answers, from the right people. I don't think she would ever have been able to get true peace of mind without your help.

Thank you very very much!

-Emma (Kim's Daughter)

Dear Wendy,
It was lovely talking to you the other day. You are a truly wonderful person and deserve a multitude of awards for your tireless efforts.
Allyson

 Wendy 
After great advice, information and support off Lorraine I have finally made an appointment with my counsellor to discuss my options for a double mastectomy and reconstruction with implants. Although I have seen a surgeon before, the only options they gave me was reconstruction from the stomach or back which I was very anxious about due to problems occurring with family members who had had this. So, I decided against it. But after reading your website and talking to Lorraine I have asked them to give me some info on this option. I was just wondering before I meet with them is there anyone you can put me in touch with that has had this with implants that could maybe give me some advice please.
  Thanks  for your time
Dee x

I wanted to say a huge thank you to you personally for including me and my words in your book, it made me realise how far on my genetics journey I have come, mainly this is all down to you. After mum died and my aunty was diagnosed and the rest of my family history came to light, I was in such a “bad place”, a horrible, dark, isolated place where I felt so scared and alone.  I wouldn’t answer the phone in case it was more bad news from the geneticist or family history clinic and I used to dread the post lady bringing me more letters from hospitals about all the breast cancers, genetics talk, percentages etc etc.  The doom and gloom surrounding it all took over my life and it was a vile, horrible time, I’d just had my first child so it should have been very different.  Then I found you and your website and you just normalised everything for me, a stranger at the end of the phone but you completely understood my frustrations and fears and you just listened and talked everything through and just made me feel normal again.  And now a few years down the line, life is back on track and the prospect of surgery seems normal and I am talking to and helping others in similar situations, thank you Wendy for all you have done for me, you are an angel.
Anyway, off to bed now, let me know how you are when you have chance
Much love as always
Helen
XXXXXX

I am writing to express in the strongest terms my appreciation and high regard for the National Helpline for families at risk of breast cancer run by Wendy Watson.  I telephoned Wendy originally in February 2006 when my sister was diagnosed with ovarian cancer.  Wendy's advice was absolutely instrumental in helping me to get the help and advice I needed. I have since gone on to have prophylactic surgery and will be undergoing further procedures on the NHS.   Without Wendy's guidance I feel I would have been lost for months and months, perhaps even longer, trying to glean the information she was able to provide to me in one phone call.  She has the right combination of personal experience and breadth of knowledge that are perfect for such a service. I am convinced this helpline is an essential service for the public concerned about genetic risks for breast cancer. The advice provided was clear and concise, without being biased.

Karen (Blackpool) 

As a cancer patient undergoing gene testing for the risk of hereditary breast cancer, I have found this helpline of enormous value. The process of gene testing is highly stressful and there are complex factors to take into account in assessing any consequent action. General practitioners are not at all familiar with the issues and are coming across instances for the first time. My own , for example, explained he would need to read up on it before advising me. The cancer charities are of some help but do not have the specialist experience of dealing with the psychological impact and medical practicalities of hereditary breast cancer. It is rare in fact to find anyone in a position to understand what is involved from a patient perspective. The service provided by Wendy Watson through the helpline has been invaluable-informative, sensitive to individual situations, careful and supportive. People in this situation need a variety of support organizations and this one fulfills a unique  and crucial role

Inge (NE)

My younger sister, Suzanne was diagnosed with Breast Cancer at the age of 29 and died of metastasis to the Pleura and Brain just 2 years later at the age of 31, she worked for the NHS as a Medical Secretary at Leeds General Infirmary and St. James’s Hospital, Leeds, and had the best care at the time. Unknown to the Consultants at the time she carried the BRCA1 Faulty Gene which she inherited from my Dad ,we now know. Not only are we still in complete despair and shock of what happened the nightmare goes on!!!!  I am now currently waiting for the test.

I have to say, that up until the point of finding the phone number for the National Hereditary Breast Cancer Foundation I have not been able to  imagine a future since seeing Suzanne Die the way she did, the fear has been indescribable. Wendy and her daughter Becky have been there for me every step of the way, so far  with there guidance I am managing at last to dare think I can have a future. Not only have  they spent time giving me the information and help I need, they have supported my Mum and even given a life line to my Father who has been struck down with so much guilt since.  So in one family alone affected, this service is  helping many  members of the family!! Including, Auntie’s, Cousins, Uncles, etc…..

When I first went for Genetic Counselling, I felt so isolated and alone. The day I contacted Wendy I started to get my life back. Wendy could sense that I was not coping at all with the news of the BRCA1 gene fault in our family and went out of her way to provide lunch for myself and my mum to  discuss the important information and knowledge she has gathered over the years. This was INVALUABLE!  I have since met with other women in my area who have been through and are going through gene testing and just look at the Breast Cancer Forums! there is so many women in there 20’s ,30’s and 40’s all desperate for information about Gene faults running in there family’s and the one thing they all come back to is “How helpful and comforting it is to know that there is always somebody on the end of the phone to talk to regarding the Help line”   I had to be referred to the Psychosocial Oncology Team earlier this year to try and get me to the point of been able to take the test and “then do something about it” and I know that the Doctor I have been
seeing has taken great interest  In The National Hereditary Breast Cancer Foundation and has been able to pass on this information to help other patients.  I have managed to get to the point of testing myself with Wendy’s Support, therefore I now do not  need the resources of the Psychosocial Oncology Team.

(Jill)

Hello, i just wanted you to know what a worthwile job Wendy Watson does..The Helpline that I phoned yesterday and spoke to Wendy was fantastic..I am having to make huge decissions which could be life saving..and Wendy was there to listen to me ..she was very kind and friendly towards me and I came off the phone feeling like a weight had been lifted from my shoulders as there was someone I could talk to, and I know that if i want to I can phone Wendy whenever I need to talk.. Please let this remarkable woman continue to help women like me ..Thankyou..janet

Early this year I had an appointment with Wendy Watson at her home in Derbyshire, I arrived about 10.40 am I was a bit early for my 11.00 am appointment I had tried to phone Wendy on route but both her mobile and home phone were constantly engaged, I phoned again when I reached the house still the phones were engaged, I knocked on the door after some time I decided to let myself in, I could see Wendy in her office she was on the phone, there were two other phones ringing I asked if she would like me to answer the phones, I was given a pen and a pad for the next two and half hours I was answering the phones all the callers were requesting either information, advise or wished to talk to some about concerns for themselves or family members including males with concerns for their partners.

About 1.00 am Wendy's daughter Becky arrived she had been working at the local radio station Peak FM. Once again I was to witness further family commitment to the help line. Without a word she started to dial the numbers I had written on the note pad, the two of them gave each one of the callers advice, reassurance and carefully noted their contact details, I made them cups of tea I decided to abandon my meeting for another day, when I left I just felt guilty, I consider myself a charitable person but I could not match the perseverance of Wendy and Becky and the National |Hereditary Breast Cancer Helpline.

I have retold the above story many times of the day I met Wendy Watson; it is something I will never forget.

Martin (Derbyshire)

I just wanted to email and say thank you!
I saw your site advertised after watching Becky’s story on ITV a couple of weeks back. it was only a couple of weeks after my mother found she has the BRCA1 gene and she immediately called me not realizing I too had it on. I made a note of your web address and told myself to look at it at a later date, and I am so glad I did!

your site has given me the reality check I need before my appointment at the genetics clinic in London in a couple of weeks. its always been in my mind and I’ve always understood-but for the first time I saw some emotion around it and have now realized I really do need my mother and husbands support… something I didn't think I really needed till checking out your site.

its so good to hear Becky was taken seriously too as at 21 I’m finding a few hurdles, most recently with regards to arguing with a nurse over having a smear test as she booked an appointment then refused me, telling me new guidelines state I have to be 25 and if I have anything wrong I'll find out when entitled at 25!!!!. I’m so glad to have found support to go back and argue that I have the right, even though the BRCA1 is ovarian. Thankfully I turned to a helpful GP who can relate and is making sure I get regular checks and quickly had me referred to the genetics clinic....I will certainly be telling her of your site to forward others as well as telling many friends to raise awareness.

Keep up the good work in promoting your support lines and showing women the light at the end of the tunnel....Becky your story has really helped a confused 21 yr old and is helping me sort my life

Rachel (London)

Hi Wendy,

I spoke to you last year about my situation and the problems I had been having with my GP referring me. I promised to get back in touch with you and let you know what I have managed to get sorted, I know you speak with lots of people on a daily basis and hope you can remember me.

In brief: Lost my Mum to cancer in 1986 she was 40 and I was 11. Through the Oxford genetics centre managed to find out that her primary cancer, although it was never diagnosed or reported, was likely to be a breast cancer due to the details on the cancer registry and where it spread to. Lost my sister 5 years ago, she had breast cancer and was only 35 when she lost her fight.

I have been trying for about 8 years now to get someone to look at my case and help me. Growing up without a Mum was difficult and at times very depressing and now my nephews are going through the same thing. I also now have a little girl who is 6 months old and it is now very important that I get this resolved.
As there is no genetics test available for me and there is a risk of getting cancer from regular screening, I had decided a couple of years back that I needed to try and get someone to support me through pre-emptive surgery. I also knew that I would no longer need to worry about dying of cancer if I took this choice!

After pushing, a disappointing appointment was made with a genetics specialist who patronised me and told me to go and think about it some more, so I left it for a couple more years due to the further knock back.
When I got pregnant I panicked and went to my GP to talk to him about my history and requested if he could refer me to a doctor (specialist) who I had been told was really supportive on these matters, but again had a very hostile and negative response (Apparently he was having a bad day), so left feeling very upset and wondering if I would have to accept my fate.

This is where I was late last year when I called you for some advice. I would really like to say a big thank you. I had an appointment set up to go back and talk to him again and due to our conversation I went with a cool head and a new tactic. He was a different man this time and I now have an appointment to speak with a specialist based at a new local unit in Milton Keynes to talk about a double mastectomy.

I had intended to get back to you sooner, but my baby wakes up the moment I go upstairs, so have not been able to use the computer until we moved it downstairs last week.

My appointment it on 28th Feb., so will get in touch and let you know the outcome.

Thank you again for taking the time to talk to me. 

Carol (Oxford)

Dear Wendy

Following your huge support and advice during our telecom on Monday 12th February we feel enormously grateful to you for showing us the way forward in dealing with a whole avalanche of mixed emotions. As you can imagine, when faced with a positive test result following genetic testing for the BRACA 2 gene, the devastation to the family is dreadful. However, if it were not upsetting enough discovering the gene was present, but to then be told that potentially the follow up scanning may not be available due to lack of Trust funding was worse.  Your advice and calm reassurance pointed us in the right direction and was so informative that far from being afraid of potential difficulties that may lay ahead it enabled us to become proactive and feel empowered to ensure that we had the support we needed which I am pleased to say we do have in place now.

Thanks you so much again on behalf of my family and we will certainly ensure that anyone with similar anxieties is made fully aware of your organization and helpline details.

Many thanks again
With Kind Regards
Julie (Co Durham)

Dear Wendy,

I just wanted to thank you for your help and advice this morning.  You let me know that I wasn't just being silly and talking to someone who clearly understood my concerns and needs was fantastic.  I took your advice and contacted my father's consultant geneticist, and his department are going to either help me directly or ensure that I receive speedier treatment locally.

Either way a huge weight has been lifted off my mind not least because I no longer feel that I am in this alone.  I am so glad that I found your contact details on the cancerhelp.org.uk website, and that you were able to
talk to me immediately.

I look forward to updating you with positive news in future, but also know
that you'll be there if I need more help and advice.

Thank you!
Alison

Dear Wendy
I ve just discovered your site and found your story of you and your daughter. I have the BRCA 1 gene as well which I discovered about 18 months ago , though my 1st cancer was 14 years ago aged 27 and reoccurred 3 yrs later . Of course then the test wasnt available . With no family history it wasnt till my mum was diagnosed 4yrs ago and our jewish back ground we were offered the test .

I have two daughters 8yrs and 5 yrs and I am wondering how you dealt with telling your daughter and at what age.They both know I had something bad in my breasts and the doctors operated made me better (I have had double mast with recon) Ive never hidden my body from them and they are very accepting of that . and of course they know about  their nanny , though I haven't told them it was breast cancer, a girl in my eldest daughters class lost her mother to breast cancer last year and I dont want to scare them !

I have great support from my genetics team at the Marsden in London but would greatly appreciate your take and experience from a mothers point of view
I look forward to hearing from you
regards
Viv (London)

Hi Wendy

Thank you so much for talking to me just now, it really means a lot.

Cat (Derby)

Dear Wendy,

Just to say that it was extremely helpful speaking to you today. I already feel that I've got further along the path in deciding what steps I might want to take regarding my family history of breast cancer and, in addition, I now have a very good idea of where to go to to further research.

As you know, I've already had an appointment at the family history clinic at the Royal Marsden. Although they were extremely helpful, it has been invaluable to chat through things with you and has given me a great deal of additional background information that really is vital for my decision making process.

Many thanks,

Catherine

Hi,

My name's Jen, I'm soon to be 22 and work in the Cancer Research Institute at Christie's.  In a few weeks I will be having an elective double mastectomy similar to that Becky had last year after a genetic test by Prof Gareth Evans found me to have the breast cancer gene P53.

Just really wanted to drop an email to you to say that although I am nervous about the surgery, I do feel reassured by your stories and advice.

Thanks a lot and wish me luck!
Jen (Manchester)

Hi Wendy,

Thanks for taking the time to answer my questions about Breast Cancer, you were very helpful and I feel alot more reassured.

Siobhan (Leicester)

please if you can do not phone as my husband and my son think i am daft and so on for looking on the web and not waiting til the hospital comes back with the results..... i have been on the net all night as i said and you were the only one who was open 24 hours ....bless you and thank you for every thing ...... well good night and i hope to here from you in an e-mail ...
thank you

donna XXXXXXXX

Dear Wendy

Thank you so much for being at the end of the phone this morning. It was so good to have someone to talk things over with who understood and could explain in lay man's terms. I will take your advice and talk to my oncologist on Wednesday and will let you know the outcome.

Many thanks again

Eileen

Dear Wendy
Great speaking with you earlier today.  Thank you for your time and I really do admire your strength and determination in what you have done with awareness and help for hereditary breast cancer sufferers
Richard (Kent)

Hi Wendy

My name is Jemima & we had a long phone conversation almost 2 weeks ago now – I meant to write sooner but we’ve just got back from 10 days in Italy! 

I just wanted to thank you for talking about hereditary breast cancer & preventative surgery with me.  I have a very strong history of breast and ovarian cancer in my family.  My mother died from breast cancer 2 and a half years ago & neither her oncologist or doctor thought to save any of her blood for genetic testing!!

The advice that you gave me regarding various family difficulties & the possibility of testing without a comparative blood sample was invaluable.  I am now going to be seeing Dr Ross Eeles at the Marsden so I can pursue this ‘investigation’.  I don’t think I would have done this without your help & advice so many thanks again. 
Jemima (London)

Hello Wendy. Just a note to thank you for your hospitality and ideas yesterday morning. We had quite an enlightening time in Tutbury with a distant relative and discovered, rather to our consternation, that her sister had died of breast cancer when 50 around 1995. Unfortunately she has a son and daughter, both about Natasha's age. We are going to do some more research, and then probably contact them to talk about the possibility of their having a faulty gene. She was the only one, so far, that we have tracked, but it was still quite a surprise. Maybe see you again sometime. Regards. Andrew
Andrew (Nth Yorkshire)

Just a quick email to thank you very much for the help and advice you've given me.  I didn't know where to start and it's such a stressful and confusing time.  I'll be passing your helpline details to my sister and she'll definitely be in contact.

Warmest regards

Liz

I would like to thank you for your help and advice.  I was adopted as a baby and have only just found out my biological family medical background, unfortunately there is a stronge family link with breast cancer biological mother had it, 3 of her sister, a niece, her mum and grandmother. So I have a very strong chance of having breast cancer. sadly most of them have developed it before they are 40, and I am now 32.

I have seen a genetic counsellor/adviser at Guy`s hospital who have basically told me I have to think of two option 1)genetic screen or to 2)surgery.  Very confused etc about this but thank you to you and having someone to talk to things have become more clear for me.  I will let you know what happens. It`s a very scary situation to be in!

Thank you again for your support. I `m very grateful

Samantha

Just a line to say thank you for your help and support while my husband's twinsister  and her 2 daughters have both all had the BRCA2 gene detected and all will be having surgery. My husband has been tested and depending on results my daughter could have the test. Talking to someone in a practical way helps a lot. Thanks

Jo (Cheshire)

I went with my Mum to meet Wendy last week. It was just what we both needed. One of my concerns was how I will be able to dress following the operation. Wendy was very reassuring, and did a 'fashion show' for me and Mum. It completely changed my view about whether I could still wear skimpy tops, as Wendy looked great in hers. I suggested that Wendy put photos of herself on her website to reassure other women as well.

Helen (Greater Manchester)

Dear Wendy

Thank you so much for our recent phone conversation, your help line is brilliant. I think it is something that people should be made aware of at genetics appts as it would help so many people to speak to someone with first hand knowledge of inherited breast cancer.

A few years ago  i went to my local GP after seeing a documentary on the television about your family and the genetic risks of breast cancer . I told him i was concerned about my breast cancer risk as my mother died at age 59 from breast cancer and that she had her first cancer at the age of 48, had a mastectomy and radiotherapy.I then went on to tell him that she had breast cancer in the other breast at age 57 and had surgery to remove it and i think more radiotherapy. My mother died 18 months after this as the cancer then spread to her spine and quickly up to her brain. My doctors response to this was you are not old enough to have mamograms and you will be called in when you reach the right age.

It wasn't until a few years later i had the chance to talk to someone about this again when i saw a geneticist for my sons unrelated genetic condition of arthrogryposis. I mentioned to her about my family history of breast cancer and she kindly referred me to the genetics clinic in bristol. I was told that there is an 18 month wait just to see someone and i was sent a family history form to fill in. Through my own research  i discovered that my grandmother had died of ovarian cancer age 37 . I  was seen after 8 months but when i saw the geneticist i was told that i could not have any tests as i had no living relatives with breast cancer but that i was at a high risk of getting breast or ovarian cancer from looking at my family history. I was told that i could have yearly mamograms and there is a trial in the hospital for ovarian cancer that i would be able to join. I asked if it would be possible to have surgery to remove my breasts and reconstruct them and was told it might be possible but that she could not guarantee it as i could not have the genetic tests to prove i had the gene, but i would be referred as i may have a chance of them doing the surgery dependent on a psychologist report. I feel like i have two ticking bombs on my chest and had a sleepless night worrying about my situation as i am a single parent and there is nobody to look after my children if the worst were to happen.

This morning I went on-line and found your web site and spoke to you about my concerns. I now feel much more relaxed about my situation thanks to your advice and reassurance, although worried about the amount of time it takes in Bristol to see anyone about my treatment options,( I was told this is because it is not an illness only a worry about an illness). Now it's a waiting game for me i just hope it doesn't take too long.

Alison (Bristol)

Dear Wendy,
Thank you so much for your help this morning.  As explained, my sister, *******, has been having trouble getting advice, support and a referral from her doctors surgery in Dorset, Milton Abas. She has a strong family history of breast and ovarian cancer and despite advising her doctors surgery of this, we have not been successful in arranging for her to see a specialist. A recent lump, causing pain has meant I am keen to make sure something is done. I was keen to get some advice on what my sister is entitled to and where she can go for specialist advice. I must say I am extremely relived to have found your number and spoken this morning.  When you are not supported by yoru doctors surgery it is hard to know what to do next and if there is anything else that can be done.

I am feeling hopeful she will be able to see a genetisist now. I will perhaps get her to discuss again a referral, depending on the outcome of your call today to Southhampton.

Thank you again for your advice,
I look forward to hearing from you,
Kind regards,
Jemima

Dear Wendy. I wanted to thank you for the extremely helpful conversation we had today. I have to say that you are the only Helpline that I have found to really understand the particular situation I am in, as someone who is at high risk of developing breast cancer. I have not yet found someone in the area that I live, Harrow, Middx who has been able to advise me. I have called some of the cancer helplines but they really were not so well informed as I hoped they would be. You really helped me to think through the decision that I am trying to be able to make. I needed good information about how my risk would reduce with risk reducing breast surgery and exactly what is involved. I have since visited your excellent web site which explains all of this so well. It was so helpful to see images of women who have had the surgery. It seems to me that you are unique in supporting people in my particular situation. Thank you so much. Best wishes
Beverley (Harrow)

Dear Wendy,
As you know I contacted you one week ago after having been left confused and unsure as to how to proceed following the appointment my family and I had with my Oncologist, concerning a second diagnosis of triple negative breast cancer.  I wanted very much to discuss newer modalities of treatment and genetic detection and did not know where to turn to sort the wheat from the chaff.  Not only were you very kind and approachable at any time of day but you were also able to instantly contact people of relevance to my questioning and point me in the right direction to look for information for myself.  I have found your service invaluable to me and therefore it must be also to others in my position.  My journey is just beginning again and I feel sure I will be speaking to you many times yet where ever it may lead this time.  Bless you for your work.  You have certainly given me great comfort with your understanding.
Thank you,
K (Steyning West Sussex)

Good morning

I am writing after just speaking to the most wonderful lady. I started the call with so many worries the main one being fear of the future my futures and my three daughters.

I have a family history of breast and ovarian. My aunt died of breast cancer in 1975 my sister is very well after breast cancer in 2002 my Mum was diagnosed in 2004 with Ovarian. She too is well.
I was tested positive in 2005 with the BRAC1 gene and after a long 3 year emotional struggle I decided to have my ovaries removed in April 08.

I only wish I had seen Wendy’s web site and contacted Wendy then I would have saved my shelf from many months sleepless nights and anxiety.

My concern today was also lack of feeling after my surgery. Wendy was really supportive in which is a very delicate area I felt to talk about so thank you.

We also talked about speaking to my daughter about the risks and why I had had my operation which is something I have been very fearful of doing not wanting to worry them. But I can now move forward and feel the time is right to talk to them in a positive light. The subject is not going to go away and it is something we can live with in a positive light rather than in fear alone which is what I have been doing. I now realise this will help them and also me. I do not want them to live in the fear I have.

This phone call has changed my whole out look on preventive surgery from being a dreadful decision to a huge positive outcome something I could not see before.

With all best wishes

Jackie

Dear Wendy

I just wanted to e-mail you to say many thanks for the informative talk yesterday, about gene testing. As I am adopted, I do have concerns about my risks and my talk with you explained clearly the procedure gene testing follows.

As discussed with you,having last year having to go for an MRI scan was very frightening, and it was again helpful to discuss this with you.

If I decide to go down the route of gene testing I will call you again for more information.

I would like you to thankyou for all your help yesterday, it was very helpful to talk to you.

Regards

Carol (Sand Beds)

Dear Wendy,


There have been times during the last 2 years when I do not know what I would have done without your excellent advice, encouragement and continued support.

After testing positive to carrying the faulty breast cancer gene BRCA1, conflicting medical opinions left me frightened and confused.Your helpline was" invaluable". During my personal campaign to receive the necessary M.R.I mammography for myself and other women carrying the same gene mutation you are there with all relevant information, a listening ear and the vital encouragement needed.
You cover both England and Scotland with your 24 hr helpline,which you run single handed. I admire your hard work immensely and thank you for your dedication in helping women such as myself.

I am so grateful for all of your help.
" Many many thanks "

Lynn Wilson
Glendevon,
Scotland.

Hi Wendy,
 
Having visited your website on hereditary cancer and read some of the testimonials I would like to add my own.
 
I have recently been diagnosed with breast cancer and had my left breast removed on 30th Dec '08. Having had a family history of breast cancer it didn't really come as a surprise but I wasn't expecting it quite so early in my life. I am 46 and have elected for reconstructive surgery as my appearance is still very important to me. As you are aware my treatment is still ongoing and it will certainly be towards the end of this year before I start the reconstructive process.
 
During all the time of trying to establish a diagnosis from June '08 my thoughts have been on the percentage risk to my right breast. As I explained to you, if it wasn't for my dogged determination and inner sense that something was not quite right I would have not got to where I am now. I have discussed the removal of my right breast with the hospital but although they have acknowledged my feelings they are not prepared to visit it until they are ready!
 
I was aware of your website but never thought I would have to use it. How glad I am that I logged into it! I read you fact sheet and realised that there is a very strong argument for me to carry on insisting on further surgery. I went away and researched my family history and it was evident to me that there was a pattern emerging. My family has never been tested for the genetic link.
 
I then e-mailed your site on a Saturday morning and received a return e-mail within the hour telling me that you would call later. I was extremely grateful that you were taking the time to talk to me as this had become a very important issue to me. Following our conversation I was reassured that I was not only heading in the right direction but you have also empowered me to raise the matter again with my consultant. Whilst this may not be the answer for everybody I know that this is the right decision for me.
 
I can only say again, thank you for the help you have given me. Your website is informative and an important link to those many women out there going through all sorts of issues. Your quick response astounded me and I now know that when I need to talk to you again I will be listened to. I also took advantage of looking at the reconstructive images and again found them to be useful.
 
Please don't ever stop the good work you are doing, you are all inspirational.
 
Jane Poole

I shall be in touch.

Many thanks

Jaqui Simpson

Dear Wendy,
 
Hello Wendy,
Thank you very much for your advice this morning regarding  my great concerns that I had for my girlfriend and maybe future wife. I was worried that may be at a high risk of developing breast cancer as her mother had recently being diagnosed with this illness. I was so disappointed when I learned that my girlfriend’s mum had breast cancer, to the point that I was thinking to split up.
Your help through telephone conversation helped me decide not only to marry her but also, if my girlfriend has any symptoms of breast cancer, I can bring her to the UK and save her life.
 
Kind regards

Mr. X

Barnet/Enfield

I just wanted to say thank you for the advice you gave me this morning. It's always daunting delving into the unknown - not only dealing with a family member who has just been diagnosed with Breast Cancer but knowing where to seek advice and support from in order to help them. It was reassuring to get a quick response and to talk to someone who has had first hand experience of Breast Cancer. All my queries were answered with compassion, positivity, sensitivity and professionalism, no matter how small or insignificant my concerns were. It is vital and reassuring that a personal service like this exists. 

The website was also very useful and for your information, i googled 'Breast Cancer help line' and yours was either first/only in the list or indeed caught my eye!

Thank you again,

(Tamsin.)

Chichester, West Sussex.

Hi

I spoke to you earlier re the BRCA1 gene that my mother in law has and that my husband needs to be tested for.  Thanks for the information that you gave me regarding the law on insurance and that companies can't ask the GP till 2011 which is very good to know.

I look forward to any other information that you can provide me with.

Thanks again for taking the time to talk to me.

Kind regards.

Natalie   

Hi There, thanks for that.   .........    Must be me e-mailing skills or "lack of".     My previous e-mails mentioned how helpful i thought your web-site is and that my sister, niece and myself found your talk at Broomfield hospital most helpful . It is good to know that there is someone to talk too about such a "devastating" subject.    I have been through so many emotions that i never dreamed id have to go through, and iv spent alot of time trawling the internet to find an operation  that i can be "Happy" with.   I never realised that i could "survive" on such little sleep, the last 15months have been "hell" coming to terms with the "Gene" was hard enough but waiting over 6 months for the operation has put my life on hold.  Cant make any plans incase i get a date or worse still knowing that time is not on my side when it comes to the dreaded "C" word.  Hopefully i will have a date in Feb but meanwhile i would def like to see Mr Bailden for a private consultancy if at all possible, and maybe myself and my husband could meet up with you if we do get up to manchester.

Many thanks for your help

Helen

Dear Wendy,
 
 
Thanks so much for the chat and listening that was very nice of you.  If I hadn't of watched the progamme 'My Breasts Could Kill Me' I would never have known that you even existed.  After reading some of your testimonials on your website I think you are both very inspirational individuals and it is clearly apparent that you help and give hope to women all over the UK. 

Like I said my mum was diagnosed in 2007 with it and she was one of the lucky ones who survived but I have never really spoken to anyone who has dealt with this in their family before and you have made me feel so much better.  I don't feel as anxious or worried now as I feel that sometimes this looms over me like a ticking timebomb. 

Once again, I really appreciate you listening to me and admire you both for doing what you did so you could lead happy lives.

Kind regards,

Natalie Koslover (the girl from Bushey, Hertfordshire!)

Just to say “thank you”. I really appreciated being able to talk through with you the possibility that there may be a genetic factor in my breast cancer.  

I am the 4th member of my father’s family to be diagnosed with breast cancer: one aunt possibly in her 40s (she died before I was born), one aunt and a cousin in their late 50s, and now me at 63 (my father himself died of lung cancer). Added to this: my mother and her only brother died, respectively, of ovarian and bile-duct cancer aged 81 and 80. Though I know their ages make this possibly a natural random occurrence, I am concerned about heredity, but had previously been advised it was unlikely.

Thanks to my conversation with you, however, I felt confident enough to raise the matter again with my specialist team and it is to be looked into. So I am very glad that I found your Helpline number listed on a web-site.

With many thanks,

Sally Varlow

Dear Wendy

Just a few lines to thank you very much for meeting up with me yesterday and giving me as much time as I needed to voice my anxieties and concerns.  It really did make abig difference.

You and your lovely daughter Becky were very understanding of my hestation to undergo preventative surgery and also my dilemma about informing my daughters. I can see things more clearly already.

I just wish I had found out about your helpline months ago.  It is invaluable to women in this predicament.  We should all be told about it when we get our genetic result. 

I would like to wish you both all the very best with your determined campaigning and unstinting efforts.  You are doing a grand job!

I will keep in touch

with great appreciation

Marta

Hi Wendy,
I want to thank you from the bottom of my heart for the help and advice you gave to me and my husband Tony, yesterday. As you know I lost my sister to breast cancer four years ago and my family are devastated. My sister was 27 when she was first diagnosed with breast cancer and she was extremely fit and healthy. She sadly lost her battle at the age of thirty. Everyone in my family are struggling to come to terms with the loss of my sister and the pain and suffering she went through. My Dad most of all is overwhelmed with guilt as it is through his side of the family that the faulty gene has been passed down. As you know my sister had a genetic test shortly before she died which reveiled she did not have either BRCA1 or 2 but but Prof Gareth Evans has said her cancer was due to an unknown faulty gene as other family members like my Dad's mum, died of breast cancer in her 30's. As it is an unknown gene I can't have any genetic testing and I'm in limbo.
I have two very young children and my ultimate fear is leaving my children motherless when I have the chance to do something about this. I have had a mammogram and I'm waiting for the MRI screening, so far everything is clear which is good but although screening can detect a cancer at an early stage it does not prevent it. As well as the sadness of loosing my sister both me and my family are frightened that the same thing could happen to me. For the last few years I have been thinking alot about having preventative surgery but both me and Tony had many questions and concerns.
When we met you yesterday, for the first time, I felt so at ease. You are such a kind and caring person that I feel I have known you a while. Both Tony and I felt really comfortable talking to you and you put our minds at rest. When I went home yesterday I was buzzing as you have no idea how much you have helped me. I've been into work today and I'm still buzzing!
One of my concerns about having surgery was how my Dad would deal with it and would he feel bad that this is what I'm going to do. As you suggested I spoke to my mum and dad when I got home and told them my decision. To have surgery and rid our family of this fear. Its my decision and I really want to do this. What can I say! My mum and dad feel such relief as we can look forward to living our lives as we should. I know there will always be a possible risk to my children but there will be at least 20 years before we need to worry. By that time they may have found our faulty family gene and cancer could be a thing of the past!!

As an NHS medical professional I explain facts and figures to patients,on a daily basis, to allow them to make an informed decision,( as we cannot influence a patient's decision). And although you did not influence my decisions, meeting you yesterday and looking at your website has helped me immensley. Not only have my family and I benefitted but I have a good friend who is a physio and treats alot of ladies who have had mastectomies, she has used your website alot to help her with the treatment of these ladies and been able to pass on the details of your helpline to many others. I'm sure without a doubt that many allied health professionals could benefit from meeting you and Becky and learning about the good work you both do.

Thank you once again, will keep in touch,
Sarah (north Manchester) x

Dear Wendy
It was lovely to talk to you last week and I want to thank you for giving me so much of your time. As a BRCA2 carrier but not cancer sufferrer, I have had little or no help with the difficult decisions that I now face. Until I watched the Dawn Porter programme on Sky One I didn't even know that you existed despite having been to Guys hospital to their genetics centre etc. The support and knowledge that you give is so much needed as more and more people are being diagnosed so I was further appalled to learn from you that Brighton & Hove PCT (for whom I work) does not help fund your helpline as other PCT's do. I have told my GP about this, she was unaware of your helpline either so hopefully between us we can change that in this part of the world!!
Since our conversation and your advice I am hopeful that I am now going to make some progress to finding the right surgeon etc and I would be grateful
if you could forward the pictures as we discussed. I am looking forward to meeting up when you come down for your visit to our windy seaside town
in August, until then
Kind regards
Mandy

Dear Wendy

I have just spoken with you having seen your details about your website via Macmillan Cancer Organisation.

I wanted to write and say thankyou so much for all the information you gave me. It was so helpful and informative to find out further about breast cancer and the risks - given my dads mum died of breast cancer and now my sister has had a mastectomy recently.

I have now made an appointment to see my doctor today. I had felt uncomfortable doing anything  at this stage prior to talking with you.  But now feel that it is potentially a significant risk given my family history and want to further investigate the situation regarding me/genetically.

It was also really helpful just to chat with you. I really apprectiated your manner and kind, helpful words. My sister is dealing with her breast cancer while living in a different country, so having discovered yours and macmillans helpline has been invaluable to me and my family.

many thanks and best wishes
Dawn

Brighton

Hi, Wendy and Becky

In relation to my telephone conversion last week, in which Wendy was so reassuring, I would love to speak to Becky at some length on Tuesday afternoon.  Is it possible to book some time when she is available?

Further contact…….

Hi, Wendy

Don't think I did hear from Dot.  Yes, I am from Manchester.  The lady who interviewed you was Dawn Porter, I think (after actress Nyree Dawn?)

Thanks again for visiting me in hospital back in 2006!

Kind regards.

Avril

Thanks for that Wendy
 
I enjoyed our little chat and found it very very useful talking to someone who didnt know anything about me or was personally involved. I do intend speaking again to the surgical team at my next appointment. I will keep you informed.
Many thanks once again
Mary

Hi Wendy

Just wanted to drop you an e-mail to say thank you for talking to me today and the information you gave me.  Also your reassurance that I wouldn't be wasting the GP's time if I go and ask him to investigate a change that I have noticed in my breast was much appreciated.

Regards

Sue

Dear Wendy

Thank you very much for your time this afternoon.  As I explained, I wanted to discuss the possibility of elective surgery with someone who understood my feelings.  Because your service deals with people in exactly the same situation as me I could feel confident I'd get advice and support relevant to me.  As someone who has been lived with breast cancer in the family I've got experience of the big cancer charities such as Macmillan, and they are good at what they do, but they don't specifically address the needs to someone like me who doesn't have cancer.  

It was just really great to speak with someone who I felt understood me straight away.  I have tried to discuss this with friends but they are close to useless really because they don't understand the background issues which are in my head, as they obviously were in yours when you made your choice.

Many thanks for your great work.

Kate

Dear Wendy,

Thank you very much for talking to me today about the dilemma I face in deciding whether to go ahead with having preventative double mastectomy. I also found it helpful to talk to you about my difficulty in telling my daughter that I have the RCA2 mutation, especially since your daughter also had the operation. I am grateful for your suggestion that I could talk to your daughter about this. I feel that, besides talking to the specialists, it is also very important to be able to talk to someone who is or has been in similar situation.

Thank you very much
Anna

Hello Wendy,

Many thanks for your advice and information. I will contact my uncle and ask him a few questions about my grandad's family (Watson) and get back in touch when I have some more information.

Wendy, just to say thank you so much for the discussion this morning. Sorry that you had such a traumatic start to the morning with the traffic, but nobody would have ever known from the discussion and  it made such a difference to hear about your experience and that of your caller.  We know that this kind of information item is really important to Woman's Hour listeners so it was good to hear it so clearly discussed.   I've included a link to your website on our programme page.

 
 Hi Wendy,
 
Thankyou for answering my email,i thanked Becky on her face-book today for sharing her experience,because it helped me towards making the decision,im now all booked in for the op now,2nd Nov at addenbrookes,theres no looking back now,the other reason im doing this is to show my three daughters theres nothing to fear.
 
Thanks again for youre website,it was very useful to me.
 
Kay

Dear Wendy,

I just wanted to thank you for taking the time to talk to me at the fashion show on Friday night. It was very helpful and also meeting Becky and the two twins that had also had the surgery. It was such a positive experience and made me feel I am doing the right thing.
I have decided that I definately want the surgery, I am worried that the consultant may not be prepared to do it but I suppose I will just have to wait and see what they say when I get my referral appointment.
Anyway I just wanted to let you know what a help you have been in me reaching my decision, I felt very alone before finding your website.

Lindsey Ford (Sutton)
Hi Wendy

Thank you so much for all your advice, it really is appreciated. I am trying to put together a family tree because it seems that there is a little more to it than I thought? Would this help?

I live just outside Manchester (near Oldham). I don't know if I mentioned my age but I am 25.

I come from a family predominently made up of girls.

I dont want to sound like a "stress head" but I think I will try and speak to my GP asap.
I will try and give you a ring soon, I am sorry, I have been really busy over the weekend.

I really am grateful for all your help.
Rachael

Dear Wendy
I just wanted to drop you a line to thank you for your time today.  It was such a relief to talk to someone about my situation and have an open discussion about the options and what the risks are.

As I said on the phone it is very difficult to navigate your way through the medical service for this sort of thing. Firstly there isn’t anything wrong with me – well not visibly as i don’t know if I have hereditary breast cancer or not.  I have tried the geneticist route and although they were trying to help they really couldn’t offer me any clear guidance as my mother has already died and therefore they cant compare my genes with hers!  So they turned me away without the answers I was seeking.

I really don’t want to trouble my GP as when I have raised it in the past I think he thought I was wasting his time with something that may or may not happen!  I have done lots of research on the internet and until I came upon your website I really didn’t know how to work my way through the different websites and advice.  All the advice seems to be for people with cancer and as I don’t have cancer I don’t want to waste people’s time or distract them from people who really need the attention and are properly sick.

I really appreciate your advice, you listening to my fears and hearing your experiences – it really is hugely helpful.  I look forward to hearing from you as I am eager to understand better if I have a chance to take the mastectomy option to the next stage.
Thanks again for your time
Best wishes
Becky

Dear Wendy,

Thank you so much for talking to me this morning. It has made me feel so much better about what I am going through. My mum died of breast cancer 10 years ago after first being diagnosed at 38. It returned in the other breast 5 years later. Genetic testing was mentioned to me then, but I was only 21 and did not want to face up to it. At 31 and now a mum myself I wish so much that I had had the test, and have since discovered that my mum also had two aunts that died of breast cancer in their thirties/fourties.

After finally facing up to the likelihood of me having the gene I have just been to see a genetics specialist who has put me in the high risk category. My biggest fear is my daughter having to watch me become ill and die, as I had to see my mum. I have been referred to a consultant to discuss the possibility of a double mastectomy as I feel this is the only thing that will enable me to get on with my life without the constant fear of cancer.

My family and friends find this idea very hard to comprehend and I was feeling very low and confused. Finding this helpline has already helped me feel more positive and realise lots of others go through this and come out of it the other side. I am now waiting to hear about an appointment date, and talking to you today has made me feel I am not being stupid in considering this.

Thanks again
Lindsey

I have just found out about your help line and website.  I heard about it on Woman’s Hour last week.

I was diagnosed with breast cancer in May this year.  As I have a family history I was offered a double mastectomy.  I only had a single mastectomy due to time restraints.
I felt that I was not given a lot of advice on the subject and have now found out from your helpline that I can talk to a geneticist. This may have been because I did not take in all the information I was given.

I feel that a 24 hour helpline is invaluable for patients in my position.  I wish that I had known about it earlier.  Many help lines that I did look at were only 9-5 on weekdays.  It is the other hours when you often need someone to talk to.  I would also like to point out that it would have been helpful to have been told about your helpline earlier.  I know the hospital have a lot of information to pass on to patients but this would have been a very useful site to have known about. 

Thank you for the advice I was given today.

Jane

Hello Wendy.
I have been in contact with your Daughter Becky a few times.
I am under the genetics hopsital with Proffessor Howell.
I am due to go and see the psychologist next week for possible preventive surgery.
I was wondering if you either get Becky to email me back at *********@********
Or you could yourself give me any advice.
I have read your website so many times and researched all about surgery and prevention.

You have been such an insperation to me both you and Becky. I think you are both wonderful and very brave women.
Thank you for taking the time in reading this message xx
Andrea

Dear Wendy,

It was lovely to speak to you today, thank you for taking the time to call me, I know you are an incredibly busy lady.

I was delighted to learn of your plans, through your helpline, to provide practical support for women like myself who are classed as at “moderate” risk of developing breast cancer.  This really was music to my ears, I couldn’t believe what you were saying, you completely understood my frustrations and understood why I was devastated to be classed as moderate risk.

I have seen a geneticist, who has calculated my lifetime risk of developing breast cancer as 27%.  (moderate risk).  This is despite my mum dying of bc (when my first born was 6 weeks old), my maternal nan and great aunt also had it.  My mum’s sister is currently terminally ill with bc and my mum’s cousin was diagnosed last year.  Shocking and chilling isn’t it.  The fear I feel when I look at my family tree is overwhelming.  

Incidentally, despite all these cancers, I was not entitled to a genes test on the NHS, I am one of the lucky ones, I paid privately to have one, I’m not a BRAC 1 or 2 carrier, but my geneticist thinks my family has another undiscovered gene in my family that’s causing all the cancers.

So I feel completely in no mans land, only moderate risk and not a BRAC carrier. Yet EVERYONE in my family is getting breast cancer.

I was actually devastated when classed as moderate risk, only 3% off high risk.  Having looked at the NICE guidelines, it seems that if you are high risk, doors open, more tests are available (MRI’s), and you are generally taken more seriously and are looked after.  I really wish I was high risk to have access to more support, you are one of the few who understand this.

This has been a life changing learning curve for myself.  I was shocked to discover that all there is available to me is an annual mammogram, which obviously I attend.  I have read that mammograms in someone my age (36) aren’t that effective, but it’s all that is on offer so I take it.  My geneticist is great, but she only gives me the computer generated stats, I’m not a statistic, I’m Helen, whose mum died when my little boy was 6 weeks old.  I will never recover from that experience.  Harry is now three and a half and I am now blessed with Daisy, 6 weeks old.

I do attend a local family history clinic annually, when I went last year, I was told I have a greater chance of not developing breast cancer than I do of developing it – that appointment was a waste of time, felt like I was banging my head against a brick wall.

There is no other support for someone like myself, no one to turn to, only your helpline.  To hear you are going to try to provide practical and emotional support to the tens of thousands of women in my position is wonderful.  It’s a support mechanism that is so sadly currently missing but yet so very badly needed.  Can I repeat, we are not statistics, but real women with husbands and children who are desperately trying to put a positive spin on our situation, but who sometimes need help.

Thank you for taking the time to read this, please do not hesitate to get in touch Wendy if I can help at all.

Helen Greaves xxxx

Hi Wendy
 
I just wanted to say thanks again for speaking with me earlier today, you were such a help.
 
I know its early days for me at the moment, having only found out I am a carrier of BRCA 1 on Friday, but it's just nice to know that the hundreds of thoughts & questions I have going round in my head are quite normal!  I came away from the genetics clinic Friday thinking, OK, what the hell happens now, if only I had been given your number then!  It took me hours of searching through things on the net to find your details, but I am so glad I did!
 
Its all very well being given advice by the genetic counsellor, and don't get me wrong she was very informative, but I wanted to speak to someone who had gone through this & could give me more than statistics.  I wanted to know real thoughts, fears etc, etc.  The fact that I was able to speak to you & hopefully in the future be put in contact with others at different stages of their journey, has made me feel a lot more at ease.
 
I am very lucky to have an amazingly supportive partner & family, so I feel now that I have all bases covered!  One of my younger two sisters also tested positive, so I hope in time, when she is ready, your helpline will also give her the support she needs.
 
Thank you once again, your service is invaluable, I will keep you updated on my journey, which I hope in turn helps someone else.
 
Lots of love
 
Heidi xxx