Mastectomy

Hi I had a double mastectomy. Initially they were saying no. They were also refusing reconstruction. Then there was to be no op even though I still had a tumour. All complicated because it was during COVID. Anyway long story short I wrote to my MP, chief executive at hospital and I think PAls. Within days I had a call to say I would be scheduled for double mastectomy and sentinel  node biopsy -check of a couple of lymph nodes. I had very large breasts 44k and I argued I would be back with back problems if I was left so lopsided. On the whole I don't mind being flat but I am in my early 70s and I would mind if I was younger, but whatever age one swinging pendulum boob would not be on. I rarely wear prothesis except if doing aqua aerobics and then I wear knitted knickers which were free and which I recommend.That s my experience not sure if it helps but I would say you have a right to make your decision. BTW the op was easy I didn't even need drains but I did do all the exercises religiously for a few months. Good luck xxx

Hi 26withbreastcancer,

I was diagnosed with breast cancer in my right breast and lymph nodes and precancerous cells in my left breast. I was very much 'if they tell me I need a masectomy in one breast, I want both taken' as I thought one would look odd. I was recommended a masectomy in my right breast with a full lymph node clearance and a lumpectomy on the left breast.  I spoke to the surgeon regarding a double masectomy and he felt it was a waste to get rid of a healthy breast and couldn't understand why I would want to have a double masectomy. He listened to my views and we both agreed to a lumpectomy on the left breast. Surgery took place on 24th January so I am now now 12 days post surgery. I had one drain removed last Friday but the other one is still going strong. I am at physio tomorrow and seeing the breast cancer nurse on Friday with an update.

Surgery was very neat and I am surprised how little it hurts (I thought it would be really painful but neither was). I have not been wearing a bra but shirts that are front fastening. Today I worn something that was more clingy and made me realise I am 'one breast down' but it didn't bother me. Looking at myself, I don't find it odd having a flat side and a breast side. I am not planning on having any reconstruction work completed and will be happy to go flat or use my 'falsey. I am just glad to have had the cancer removed.

I will find out soon how many rounds of chemo I will have followed by radiotherapy. I turned 53 on the day of my surgery and have not started the menopause, so am expecting that to hit me in the face in the coming months- how more exciting could my year get ?

Ask the questions at your meeting as I was told my views would be taken into account.

Good luck x

Hi, your story is very similar to mine. I had cysts for a number of years and kept getting told they were fine.  The cancer was missed and it went into my lymph nodes. One minute I was told no cancer there was 3 lots and needed a single masectomy. Then got told something was showing on the MRI in the other breast, so prep your self for a double. I was happy with this as I suspected it was in the other breast as well. The following day an ultrasound took place and back to a single mastectomy. I write a massive email saying why I felt strongly why it should be removed. It was ignored and the single masectomy took place. This was July last year. Had chemo and radiotherapy but end of December I went back to my consultant as my one breast looked like it was extremely inverted. My consultant was flippant with it, and said this is just your age as 54 and all ladies get this. She said I needed a MRI to give me pice of mind, I told her nothing will give me peace of mind until it was removed. I relaxed and I have been feeling pretty good as finished chemo and radiotherapy. Had the MRI about 2 weeks ago.  I had a call Monday they needed to see me the following day, it was tricky in work so tried to rearrange not realising it was the results of the MRI. They told me it can not wait until March. So agreed to see them next Tuesday, I can only presume what they saw on the MRI last June was cancer but they can now see it. Go with your gut feeling and try your hardest to get both removed, as I potentially will have to go through it all again. Good luck and hope you get what you want not like me. Not even sure if this will classed as secondary or not. 

It is difficult waiting for the meeting.  Let me know how you get on x

Will do, definitely fingers crossed. x

I also requested a double as an quote large breasted and felt the difference would be tricky and I prefer to be flat both sides . I spent some time with consultant and looked at flat friends website . They felt that there was no medical reason to remove both and would consider later as I Defo did not want any reconciliation. I had a mascemtony at very start of Jan and am still recovering from the operation . At this date due to the pain I am pleased I only removed one . I am sure you can push it to go that and everyone is different . If I was to have pushed further it would have gone back to a team decision . I would still prefer to be flat chested but at this stage I think due to the recovery issues I am going to be a proud uni boober and have acquired a bra . 

Like ShoeW I asked for a double but was advised this would delay treatment as you need to speak to a physiologist first to make sure you are making an informed decision and this would take time. I didn’t want to delay so went ahead with a single and SO glad I did. I felt very incapacitated in the early days trying to do simple things like eating dinner, showering, even going to the loo! My left hand came in very handy. I’m 9 months post surgery and still have pain and swelling - it’s a long journey. 

Hi Shazzal

Apologies for being slow coming back it has been a busy couple of weeks in work. 

My mass in the left breast had changed, the mass last time was smooth which meant it was more likely to be benign. This time it is not which could be cancer. They told me remember you wanted the left breast removed so we are doing this as a risk reducing procedure for you. 
I think we all know after they were so adamant they did not want to remove it at all and said no way last July. They had agreed to move the left breast 18 months time to 2 years. I had written a massive email saying I felt very strong about it and it was ignored. 

Now it is being removed in April for me. 

It feel like they are trying to imply they are now doing me a favour. I can’t be bothered to argue the case anymore. I think they know I don’t believe what they are saying for one minute. 

Although last year I had the right breast moved and reconstructed straight away. 

One of my colleagues was on maturity leave and gave back in not knowing about the cancer, and was amazed she said she would never of guessed. 

I think it depends who you know. I have been told about a lady who worked in a local hospital who wanted a double mastectomy and it was done straight away. 

I found the op ok, so not nervous about the next, just shocked as it was only 9 months since the last. x