March 21, 2012 at 2:37 am #239
Over the last couple of weeks I have been discussing options with the breast team at my local hospital re undertaking surgery to reduce my breast cancer risk. Obviously this is a difficult decision for any cancer free women to make but when I look at the following facts I feel it is an option I must strongly consider
I am now mid forties and have a strong family history of breast cancer, in fact all of my female relations on the gene carrying side of the family had either passed away from breast cancer or had suffered breast cancer at my age. I must consider myself lucky still to be cancer free to date.
The latest information suggests that 49% of women with LFS will get breast cancer by the age of 60 making it the most common cancer in women with TP53 mutations.
The operation is available on the NHS along with breast reconstruction of your choice. The medical experts I have discussed bilateral mastectomy with all seem to feel it is a positive move to make in my position and at my age. I have been told that it will take away 90% of the risk of breast cancer however there is not a100% guarantee.
I must also take into account that screening will not reduce the risk of breast cancer, I can only hope it will pick up the cancer early and allow a good treatment outcome. There would however still be the need for treatment with all the nasty side effects and possible surgery.
I am now going to take a couple of months to decide to proceed or not as I do not want to rush into any decisions without being 100% certain.
I would be interested to hear any of your views on surgery and also from anyone who has had surgery to prevent breast cancer and your feelings on taking the step to go ahead.
KarenMarch 22, 2012 at 3:11 pm #240PanKeymaster
Did they offer you any alternatives to surgery? There have been numerous clinical trials looking at chemoprevention for women with a very high-risk breast cancer – not just LFS but BRCA1/BRCA2 or a familiy history of elevated risk. Drugs that have been used include things like statins (Lovastatin, specifically), Metformin, beta-blockers and more traditional drugs like Herceptin or Tamoxifen.
PanMarch 23, 2012 at 1:02 am #241
No, it was not discussed, it is a good point which I will look into further.
KarenMarch 30, 2012 at 3:27 pm #244SonjaParticipant
I am a 29 year old LFS positive from Germany (pls apologize language mistakes 😉 ).
I have had my bilateral mastectomy along with reconstruction 3 weeks ago. I am doing very well and feeling happy with my new breasts. They look very natural – even after 6 breast surgeries I had to go through in the last 5 years B) .
My decision was easy to take because I had had breast cancer at the age of 24 (right breast) and now again at the age of 29 (left breast), so I did not had much choice. Nevertheless, I am glad to have them removed and I can not see any big dissadventages…it looks good, I can already do sports like before…The surgery was not so hard, I could leave the hospital after 5 days, I even did not need any painkiller after the first week.
I think it is a very personnel decision and of course my situation was very different from yours. Removing healthy organs sounds kind of crazy. Nevertheless, I am considering to get my ovaries removed as well…having cystes from time to time and always scared that sooner or later a cyste will turn into something really bad. I did chemotherapy several times in my life (sarcoma when I was a child…, breast cancer…), and I do not want to have any of it again :sick: !!!!!
Regarding the drugs. I took Tamoxifen over 4 years, Herceptin over 1 year, Zometa over 3 years and now I am again on Zometa and (new) Femara. Personally, I would prefer a surgery instead of taking drugs over years. On one hand, surgery decreases the risk of any event more then drugs can do (my doctor was speaking about 95 – 98%!!!) and the side effects on life quality are from my personal point of view much higher taking drugs over years instead of having one surgery.
But still…it is a very personal choice and there is no “right or wrong” answer. What you decide, is always the right answer for you.
Wishing you the very best,
SonjaApril 10, 2012 at 1:32 am #252
Thank you for your comments, sorry for so long to reply back but I have been away on holiday.
I found it very useful to read your history and the fact that you are positive about the breast surgery. It really does help for me to hear from other women who have been through the procedure and how they found it.
I have contacted my genetics clinic re chemoprevention however the response does not seem very positive compared to surgery. The risk reduction is only around 50% and there are quite a few possible side effects including stroke, blood clots and increased risk of other cancers. I will keep you updated on the route I decide to take.
Wishing you all the best for the future.
KarenApril 19, 2012 at 6:22 pm #256shoonuParticipant
I am in exactly the same boat you are in. I just had a mass removes from my breast/chestwall and am waiting for pathology report. The answer would be simple if it was breast cancer, however it appears to be benign so far. I am 47 and have had 6 different cancers except for BC. It is a very difficult decision and nothing is 100%. I never want to repeat chemo if at all possible. Surgery is tuff but chemo is worse for me. BTW Hello to Sonja an Pan!April 20, 2012 at 9:11 pm #257PanKeymaster
[quote=”Shoonu” post=63]BTW Hello to Sonja an Pan![/quote]
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