Radiotherapy or masectomy

Shiro

Hi, this is my first time online and hoping for some advice as to where to go next. I am a 56 year old female who was diagnosed with Her2 postive invasive breast cancer in July. Chemo was recommended straight away followed by surgery. Currently also on Herceptin for 12 months. Chemo was horrendous and if there was a side effect to have I ticked them all with several hospital visits. The good news was it was very effective and it destroyed all the invasive cells. Therefore instead of a mastectomy I only needed to have a wide local incision in 2 areas followed by radiation. Had surgery 3 weeks ago but results came back with DCIS high grade cells in the margins. Went back for further surgery last week and came back they found more DCIS and all removed but margins only clear by 1mm (2mm is the australian accepatbale margin). Surgeon is recommending that I still now follow up with radiation but due to small margin they are leaving the decision up to me if I have a mastectomy or radiation. I am not sure what to do, both are right decisions but what is best for me? Any advice from others who may have been in similar positions would be gladly appreciated. 

Afraser

Dear Shiro
Welcome. You sound as if you are due for some let up but you still have difficult choices ahead. I was not in that position as my choice was simply a full or partial mastectomy. I am sure someone else has faced the same difficult choice as you too and can advise more pertinently. But after a very hard time with chemo, a mastectomy is usually straightforward and relatively easy. No-one likes the idea of losing a breast, but I have been mono-boobed for five years, chose to have no reconstruction (which of course is an option for you) and don't find it a problem. I use a prosthesis, find it straightforward, no problem with clothes, swimming etc and don't mind my "battlescar"! Best wishes for whatever decision you make, the important thing is to make the one that feels right for you. 

kezmusc

HI Shiro.  Sorry to hear you had such a rough time with the chemo.  It does suck, however, excellent to hear the nasty stuff did what it was supposed to.  I had things done the other way Lumpectomy first.  Had to go back for re excision.  Margins only just on the 2mm. I had 5 nodes positive as well.  I was quite sure in my decision not to proceed to mastectomy and went with the radiation.  I have recently been for my 12mth mammo, ultrasound, mri, bone scan and got the all clear so I am happy with the decision that I made.  Unrortunately this is one of those things that only you can decide.  All the best for whichever way you go.  XOXOXO

onemargie

Hi there @Shiro I was diagnosed last year with triple neg breast cancer grade 3 stage 2a left side aged 43 all scans clear no lymph nodes involved either. I was given the choice of left mastectomy and chemo or left lumpectomy and chemo and rads I chose mastectomy and chemo only as I didn’t want both and also didn’t want more surgery in case the margins weren’t clear and glad I did as on the scan it said the tumor was 1.8cm and when it was removed it was actually 3 so  then I took the other boob off 6 months later by choice no regrets from me. On the very long recon wait list in qld now and I’m so sorry to hear you had such a shitty time with your chemo it’s bloody awful stuff isn’t it. But it’s relief it’s done it’s job. You’ve been really unlucky too with your surgery haven’t you. What a bugger that’s been as well . The decision is totally yours and only you know what’s best for you. My advice is to trust your gut. If it’s telling you to just take the bloody thing off and be done with all this back and forth for surgery and treatment and get on with life then do that. But if you got through the rads last time ok the doing it  again then well that’s ok too. And how do you feel about the mastectomy? Is recon an easy option for you? Are you ok with the prosthetics or do you want to save your boob no matter what these are a couple questions you can ask yourself . My boobs wouldnt of been able to do all that surgery as I was only a b cup and there wouldn’t be any boob left anyway! Hope this helps. Margie.  X

magicmum

That sucks, what a hard choice  
Only you know how you will feel about losing a breast - if I had needed to make that choice I would have in a blink. And like Afrasa I wouldn't have bothered with recon, prosthetics are so good these days.
I was also Her2+ but only a small tumour so a wide excision, chemo (yay, that was fun ) and radiation fixed me. Well, we are never actually completely fixed are we, it can come back to bite us at any time.
The best soltuion is the one that leaves YOU feeling that you have done everything you can to beat this, with advice from docs, oncs and surgeons. Some people think surgeons have no empathy, but mine was the nicest person.  Be advised by them, they will only suggest what they think is the best.
Take special care

primek

I chose a full mastectomy and started reconstruction. In fact I chose a bilateral mastectomy as my cancer was missed in a mammogram 5 weeks before I found a lump. I chose it due to fear of missing a recurrence or new primary and wanting to avoid radiotherapy if I could...knowing if nodes were positive I would need it anyway but they were clear. Whilst I miss my breasts I am happy with my decision. 

melclarity

Hi there, well 1st diagnosis in 2011 I had DCIS, lumpectomy radiation and tamoxifen for 4yrs...I had a recurrence in the same spot! this time IDC ER+ 2.5cm stage 2 grade 3, all in between my yearly visits. Whoa!! what a whirlwind, was horrific! I chose another lumpectomy, chemo and was put onto Arimidex in January 2016. Due to a recurrence a year after treatment in Feb 2017 I did a single mastectomy/diep flap reconstruction. I was petrified to do it, struggled mentally so so bad, but it was the best decision I ever made and in hindsight had I known how great the recon was, I should have done it in 2011 and avoided chemo in 2015 uuugh. But we travel the path we have, I just know now what I would do. Hugs M xo

Shorelle

I had clear margins and no lymph node involv. But before Radiation I asked myself the same questions. I went to my female surgeon and said Im worried it will come back in my beasts.  I said , you see this all the time, what would you do. Her answer was without hesitation and she said, mastectomy. She said I see it come back all too often.   I decided to also remove my healthy breast. Now recovering after immediate reconstruction.