Decision time: bilateral mastectomy with recon OR radiotherapy

I was in a similar situation a month ago. It was a big struggle for me to make the decision between radiotherapy and mastectomy. My journey started with one lump in my right breast late 2016,  then second lump found during biopsy. I was 40 years old no family history. I had lumpectomy. They were invasive lobular carcinomas, and LCIS covered around the lumps. Clear margin and lymph nodes. I was offered radiotherapy or single mastectomy because of the LCIS. I felt it was the most difficult decision to make in my life. There were no text books to follow, No right or wrong, better or worse decisions. I felt I was trapped in somewhere. Initially I thought to choose mastectomy, but I changed my mind after I had an opportunity seen by another breast surgeon. As I was reading more about the LCIS, I was worried about my left breast. My breast surgeon listened my concerns and sent me for MRI and genetic testing. MRI found another lesion in my left breast, biopsy was negative. But a few radiologists have seen my MRI, they said my breasts were nightmares, very busy and dense. My breast surgeon basically said my only option was double mastectomy. I actually felt a big relief that I didn't need to make decisions anymore. I am getting ready for the double mastectomy with expanders reconstruction in 2 weeks. 

Like other girls said it's hard to make the decision, it's personal, you choose what is right for you. I think it's a good idea to have a second opinion from another breast surgeon. All the best to you. 

Xxx 

Hello.... I had stage 2 cancer HR positive HRT 2 negative diagnosis in feb this year.  Had lumpectomy with clear margins and was going to undertake 7 weeks of RT.  I had no genetic testing but decided to see surgeon and request bilateral mastectomy with reconstruction(public system). She agreed after I talked to a oncological psychologist and I had skin sparing nipple sparing procedure 3rd April and very happy with my decision.  I have 2 young children and felt that I wanted to do all I could possibly do to prevent a recurrence. Very happy with my decision.... recovering well with tissue expanders in place. Good luck with everything x

Not at all @Ad Lib :). Of course, everyone is different so I can only give you my story - but I couldn't be happier with the outcome of my DIEP Recon: it's natural, warm, soft and it's part of me.  Amazing xxxxx

Thank you ladies. It's so great to hear you don't regret your mastectomy. @nikkid @socoda @mum2jj

Hi Ad Lib....like Cath and Paula, I also had a mastectomy - the reason being that I had very early multifocal DCIS. Even on my first meeting with the breast surgeon, I was told that mastectomy would be the best (and really, only) option because of its multi-focality. I was devastated at first...but now, 12 months on (after a left vertical skin sparing mastectomy, insertion of an aeroform tissue expander and now 3 and a half weeks post DIEP Reconstruction surgery), I don't regret it for one minute. Mastectomy isn't pleasant, but it's also not as bad as I had expected. If you have any questions, we are here to help

Nikki x

Hi @ad lib, I am not triple negative, nor am I young,(50 when diagnosed) I had a single skin and nipple saving mastectomy. I was advised by the first surgeon I saw (breastscreen on day of biopsies) that my tumor which could be felt quite easily would take too much of my breast tissue to be able to have a lumpectomy and have my breast look normal under clothing. When my biopsies results  came back the second surgeon (diagnosis surgeon who I then chose to be referred to) said that there was a possible satellite cancer above my tumor. I was adamant I wanted mastectomy. My surgeon agreed due to the satellite. Pathology showed that the it was a benign lesion but I had and still have absolutely no regrets in having had my mastectomy. I figure that if I had cells that were changing - even if at that stage they were benign - I was and would continue to be aware of those cells and the possibility that they would turn rogue and attack :#. They were LURKING!!!!! I think once you have spoken to your surgeon and discussed the pro's and con's, what types of reconstruction (if you want it) you can have and when you can have it you will be in a much better position to make the decision that is totally right for you. You will know deep down which avenue is the path for you and will be satisfied that you have chosen that path. All the best with your decision and please let us know how you get on. Xx Cath

Ad Lib said:

I accidentally posted this is the wrong category. Can an admin help me move it into general discussion please? 

Thanks Ad Lib,  I have moved this over to the general discussion for you :)

Hi "Ad lib", I had triple negative aggressive 2.9cm tumour found 8 mths after clear mammogram.  I went on and had lumpectomy (clear margin...just) one positive node and next 6 clear.  I had chemo/radiation.  6 months after all treatment completed and a clear mammogram I had a recurrence.  It was about 2cm from original tumour. 3cm and very aggressive.  I decided then to have a double mastectomy as both my tumours were so soon after clear mammograms.  I like Kath had dense breasts.  I am happy to say I am almost 6 years cancer free now. Had I not had the recurrence I think I would not have had the mastectomies.  It was a no brainer for me afterwards.  I know my cancer may still return in the scar tissue or any breast tissue left behind, not to mention elsewhere.  I do feel that I have given it my best shot though with all my treatment (yes I did chemo again just 18mths after first diagnosis.)  I have no family history but have recently decided to get tested as I do have a daughter and two sisters.  One thing to consider is that your reconstruction options change once you have had radiation.  Implants are not always possible due to skin damage.  That was the case for me. However I did have a tissue transfer (from abdomen) TRAM flap reconstruction. There is much to consider.  Definitely check in with your surgeon and then it's a matter of pros and cons.  Whatever you decide will be the right thing for  you and you can always have a mastectomy at a later date if you choose radiation.
I hope I haven't confused you.
Paula xx

A mastectomy doesn't prevent metastases. It does however lower the risk of local recurrence in that breast (which can happen) or a new primary breast cancer in that or other breast . My Aunt ...BRAC1, had primary breast cancer, 2 diff types in 2 breasts and ovarian cancer. She died from the 2 bc, sadly after being treated effectively for her 1st bc and ovarian cancer. 

http://www.breastcancer.org/risk/factors/genetics

@Ad lib HI. I am triple negative and I have the bracken 2 gene.My father had breast cancer  On my surgeons advice I only had a lumpectomy .I had 4 Ac then 10 Taxol should have been 12 had to stop side effects. Then surgery then radiation.
I expected to have a double masectomy was told no need. I was told if the cancer came back it would not come back in the breast so what was the point of taking out the breast. This opinion was also backed up by my radiation oncologist.
I am far older than you makes a difference on decision and doctors advice.
It is such an important decision . I would even get an opinion from a second breast surgeon.