Masectomy

Hiya I’ve just had a single mastectomy last Thursday I asked for a double as not sure if mine is genetic yet but they said no until the gene test comes back. I’ve opted to stay flat as wanted a faster recovery and so far so good. I had the drain removed morning after op and fingers crossed hardly any swelling as yet. I’ve had lymph node removed and will find out results on the 7th Jan. Hopefully it comes back clear and radiotherapy is the next step. But if it’s not clear I’m guessing it may be chemo first. Sorry to hear your on the journey. I’m 40 and was a mega shock to me! But getting head around it  abit now. Sending hugs x

Hi, sorry you have had to join the club nobody wants to join.  I had a lumpectomy and sentinel node removal September 2022.  I was told if my margins weren’t clear I would need a mastectomy.  My margins weren’t clear they found DCIS in the margins.  I was given the option of a mastectomy or surgery to remove a further 1 cm.  I opted for surgery to remove another 1 cm.  My margins were clear the second time.  I think it depends on the size of your breast and suspected area whether they do further surgery to remove another area or a mastectomy.  I’ve also read they are not happy removing a healthy breast for those wanting a double mastectomy.  Best wishes for the next step in your journey.  Hugs x

Hi Debra66

I had a very large area of DCIS so had no option other than a mastectomy. I asked for a double at the time of diagnosis but was told this would delay surgery as I’d have to go through counselling first to ensure this is really what I wanted. I didn’t want to delay - I just wanted rid asap. I’ve found the recovery hard over the first few months with limited right hand side movement but managed to dress and look after myself which I honestly don’t think I could have done had I had the double mastectomy. In hindsight I’m glad I didn’t. I’m ALMOST back to normal, enjoying my holidays and the grandchildren. I’m 67.

Hi Marie, I had 3 surgeries last year, the margins weren`t clear each time so I had a mastectomy on the 21st of November, I`m still at home recovering and I have to go to the hospital weekly to have the fluid drained

I would have liked reconstruction same time but I was refused and told to lose weight first, I am not round but my BMI is high, no other health issues so I was gobsmacked.

Now I think I will ask for a mastectomy of the healthy breast and stay flat, I`m not going through all the pain and suffering again just to have boobs, I`m 51 soon so it doesn`t matter much to me.

I`m still waiting for the BRCA gene test results, I have no idea if I`ll ever do radiotherapy, I`ve been told I don`t benefit from chemo so now I`m just waiting for prosthetic fitting and mastectomy results next Wednesday and see what`s going to happen..

Good luck to you and Happy New Year :)

Hi I was given my results early via phone call and out of the 7 lymph nodes they removed 5 were bad so now my plan has changed and I’m waiting for a chemo appt which they said could take 2-4 months. Then they wanna do full auxiliary clearance and then radiotherapy followed by hormone. I had my heart set on not having chemo as all looked like it wouldn’t be needed. My nodes were clear on scan in October. Had oncotype test done and it came back at 6 so was looking like just radio. Really knocked be about can’t help but think if they had acted faster it wouldn’t have spread further but I guess that’s nhs for us they are so busy and looks like very under staffed to cope with all us patients. My gene test hasn’t come back either so that may throw a spanner in the works if that comes back positive. I decided to stay flat on the right as couldn’t be stressing over more recovery time and it’s not as bad as I expected so far. 

I would also be happy to be flat on the left. 

sending hugs let me know how you get on with your appt hope it’s good news for you xx

Hi Marie, so sorry to hear that :(

I really hope the treatment they give you will work and you will be clear very soon

I had 3 appointments 2 days ago, spent all day in the hospital with long waits, had the fluid drained first, then fitted with a soft gel prosthetic then got my results.

The consultant had to read my file as he didn`t know my ER8, PR8 and HER2 were negative, he said the results were clear (they found more precancerous cells inside the removed breast so it was the best decision).

I got prescribed Anastrozole pills for the next 5 years, and got a bone density scan appt, for the 29th as these pills affect the bones and joints and I`m waiting for a mammogram of the left breast as well.

I think all this is good news, I still don`t understand much, I`ll ask the nurse when I go next week for fluid extraction, hope she can translate the results for me

Take care and stay strong, keep us updated, please :)