Mastectomy or monitoring? How to decide?

I was diagnosed with extensive LCIS in summer 2007 and was referred to the Royal Marsden for a second opinion. I have been given an elevated risk of 3x base-line risk. Mr Gui suggests treating the highest risk breast with surgery and watching the other breast. I had more or less made up my mind that I would take this route and was beginning to come to terms with it. I have since had a discussion with my local consultant and came out of that appointment seriously considering a bilateral mastectomy. The consultant pointed out that I could have a mastectomy and there is no cancer found. My husband picked up on this point and feels that perhaps I am being railroaded into surgery. I feel totally confused and do not know how I am going to make a decision. I have written lists of pros and cons for each option (including the different options on reconstruction) but feel no nearer to making a decision. I don’t know anyone with LCIS and had never heard of it before. I wonder if anyone else has found this such a difficult decision to make? It is huge and I really don’t know what to do next.

Hi DeniseAnn,

Welcome to the forums where I am sure you will get lots of help and support from the many informed users of this site. It might help you if you give the BCC helpline a call, you will be able to discuss in confidence your thoughts and concerns with the staff here who are either breast care nurses or people who have experience of breast care issues. The lines are open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm, the number is 0808 800 6000 and the calls are free.

I have also given the link to one of our publications ‘LCIS’ which may help you understand your diagnosis a little more. You can either order a copy (free) or download one. The link is as follows:
breastcancercare.org.uk/content.php?page_id=5221

Hope this is of some help.

Kind regards
Jo (facilitator)

Hi Denise Ann, Im sorry to hear you have been recently diagnosed and I do know how difficult it must be for you at the moment. I was diagnosed with dcis in Oct 06 and was advised to have a mastectomy followed with an immediate recon, the decision was made to go for an implant. I had the mastectomy op in Nov 06 and can honestly say that the four weeks between dx and the op were the hardest for me, once the op was over I just got on with things.

You will have to make your decision on your own feelings at the end of the day, but sometimes I wish I had gone for a bi-lateral as I now have to have screenings on the good breast every 6months and at the present time am left with 2 breasts that do not match at all. I will probably have to end up having an implant in my good breast to try and even myself up, whereas if I had had the bi-lateral I would have ended up with matching breasts.

Have you asked what your medical team feel are the percentages of it invading your good breast, perhaps that might help you make the decision. Have you spoken to a breast care nurse, I have found mine excellent, and sometimes its easier to speak to someone outside of the family, they are usually very knowledgeable and experienced.

I wish you good luck with whatever decision you make, and remember too that there is life after mastectomy, albeit slightly altered, and afterall thats what we all want in the end.

Take care

Lilymayx

Hi Denise Ann, I was diagnosed with LCIS in Feb 2007 after having my milk ducts removed and was told that they would investigate further by doing some biopsies and then depending on what was found would offer me bilateral mastectomy.The thought of losing my breasts when no cancer was present devastated me. No biopsy was done but the removed ducts were sent to Sheffield and I was told that no cancer was present and that as long I was aware that my risk of breast cancer was higher than normal then nothing further needed to be done only extra monitoring. Only 3 months after receiving this letter I felt a thickening and went back to the clinic where my consultant said she would send me for a scan and do a core biopsy NOTHING showed up on scan and was told by the radiographer to feel reassured by this but biopsy revealed I had cancer in right breast so was sent for MRI breast scan which showed I had no cancer in left breast but 2 tumours in right breast. Offered mastectomy of right breast but decided to go for double which I had in October. Please bear in mind that LCIS does not always show up in the form of a lump but disguises itself as a thickening. I certainly accepted losing my breasts knowing i had cancer easier than when I didn’t and if I had known what was ahead of me then I would certainly have done it sooner. Also had another mammogram 3 days before operation and the cancer did not show up on that either. I don’t wish to scare you as many people with LCIS go on NEVER to develop cancer guess I was one of the unlucky ones. Just try to get as much information on this as you can. Good luck and best wishes to you in what ever decision you make.

Hi DeniseAnn,

I was diagnosed last Feb with b.c. I had extensive LCIS in both breasts. I had the left breast removed. Almost a year on I have opted to have the right breast removed as well since my risk is high of getting cancer again. Although I can still get bc, the risk will be greatly lessened. Hearing the words ‘I’m sorry but you have breast cancer’ changed my life forever, and even though I’ve been very positive throughout, I don’t want to hear them again.

I have never liked my breasts, so I’m not bothered that I’ll be without them. Having just one has been a bit of an emotional rollercoaster. But, like most things in life, it just takes getting used to. You could always have a reconstruction. The helpline here can put you in touch with someone who may have been in a similar situation to yours. It’s worth giving them a call. I’ve come away feeling better after having spoken to someone there.

My advice would be to take your time making your decision as there is no rush.
I wish you all the best, whatever you decide!

Jacki x

Hi DensieAnn

As Jacki has kindly suggested, you may find Breast Cancer Care’s peer support service helpful, the telephone service aims to quickly put you in touch with one of our trained peer supporters, who has had a personal experience of breast cancer.

Our peer supporters are from diverse backgrounds and ages and have experienced different types of breast cancer and treatments. They are ready to listen, offer skilled emotional support and share their experiences and understanding.

For more information about this and other support available to you telephone our helpline on 0808 800 6000 or email <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>.

Best wishes
Lucy

Hello DeniseAnn,
My case is a bit like Lilymay’s: I was diagnosed with DCIS in one breast in November 2005 and given three options: 1) removal of affected area followed by radio and hormones (I am postmenopausal) and regular checkups, or 2)mastectomy with no further treatment, or 3)mastectomy with recon and no other treatment. I was lucky in that my breast surgeon and the plastic surgeon were not only well known experts in their areas but also extremely sympathetic people. The bs suggested that, because a unilateral mast would end up with me having two completely different breasts, I could consider a bilateral mast with recon. Personally I could not deal with a the first choice (more treatment after surgery and the idea of waiting for checkups, and the possibility, even if low, of it happening in the other breast), so I went for a bilateral with immediate recon. I had implants. The op and recovery went well and I have not looked back since.
That’s my experience and if you would like more details I will be happy to help if possible. However I know that these decisions are intensely personal ones and as we are all different, what one of us prefers might not appeal to others. With regard to recon the different methods were also explained to me but I felt that the mastectomy was a big enough op and did not want to get other parts of me involved. That’s why I went for implants (of which there are many shapes and sizes!) but reading the mails in this forum I get the feeling I am in a minority. Maybe my age has something to do with my choice, who knows (63 at time of op)…
I hope you can get a good overview, as they say, from people’s reaction to your query in the forum, and that your medical advisors can also help you.
Best wishes, petitepart

hello deniseanne, i too had lobular cancer that didnt show up on the mammogram only through a biopsy, i had a 6 cm tumor when it came to my op. i had chemo both before and after surgery, only thing is im now worried about getting it in my other breast which with this type of cancer is likely to happen further down the road, my hospital did not offer me both breasts removal as surgeon said it may not happen, but im living everyday with the worry, and am going to see the oncologist next week with a suspicious sore patch in my other breast. so i think its really up to you and your surgeon as to what road you take . wish you well whatever you do take care lynn xx

Hi I had bilateral Mastectomies Sept 2006, having been diagnosed with DCIS and being at much higher risk due to Radiotherapy for Hodgkins when I was 17. I considered having just that part removed, but the thought of having to go back for check up’s and worrying it might appear and I’d have to have treatment (I also had chemo’ when I was 20) was a horrible thought. I opted for bilateral (it was advised because of my radiation treatment, so different to yourself). When they had removed both breasts they found that I had LCIS in the other one anyway. To say I’m glad I had both removed is probably not the right wording but I feel MUCH less inclined to worry about Cancer, it feels like a small ‘possibility’ rather than a ‘when’.

These are only my thoughts, it’s NOT an easy decision to make, I have days I regret it, or get frustrated (I had LD flap reconstruction and implants) that I’m a bit weaker than I was. In terms of the recon’ you cant know until you’ve had it done, and then you cant really change you options, depending on what you have. But fundamentally I feel safer and dont think about Cancer.

It’s impossible to say whether you’d go on to develop anything. I SO wish you luck with your decision and can only empathise with just how difficult it is!

Best Wishes, Yessie x

Hi DeniseAnn,

I was diagnosed in July 06 with lobular cancer after having a lumpectomy, after having a wle I was told I also had DCIS in the same breast and advised because of the higher risk of getting Lobular in the other breast that I have a bilateral mastectomy. I found it really difficult accepting thios harder than being told I had bc, I was happy with my body and the last thing I wanted was to be without my breasts, also I couldn’t have immediate recon as at that stage they didn’t know whether or not I would need chemo or rads. Luckily I didn’t need chemo or rads just on tamoxifen for five years and monthly zoladex injections for 2 years. After a very long nine months I had bilateral recon using the skin and muscle from my back and I am so happy with the results, I am due to have the nipples reconstructed in Feb then the tatooing in 4/6 months after that.

Although at the time I was devastated at loosing my breasts, with the support of a great partner, family and good friends I got throught it ok and now I couldn’t be happier.

It is a very difficult decision to make but I’m glad I did have the bilateral mastectomy and now have both boobs matching, as my breast surgeon said with having both removed the plastic surgeon has a blank canvas to work on.

Hope my story helps with your decision, please keep in touch and let us know how you are, sending you lots of love and hugs

Kaz
xxx