Single or double mastectomy

Belgrave14

Since being diagnosed with Stage 3 Inflammatory Breast Cancer in March I have been pretty clear that I want “a double mastectomy, no reconstruction and fab tattoos”. My breast surgeon is actually the guy who first broke the news to me when I ended up in hospital thinking I had an infection and I have seen him twice since. He has always said that having a double didn’t make recurrence less likely (I have a tumor in my right breast and there were some cancer cells in my lymph nodes) but that we will take about it nearer the time. Well, I see him next Friday prior to finishing  Chemo in 2 July and my oncology says surgery will be around three weeks after that so now it is time.

I know I am the only one who can decide but would love to hear from others who had to make the same decision. Lumpectomy is absolutely not an option, it’s one or both off. I am also wondering if choosing a double will have cost implications, I have found out about gap fees in the private system the hard way so if he says it’s not medically necessary is that the choice taken away from me as I certainly can’t fund it? I would be very grateful to hear what others did.

Belgrave14

Sorry about typos!

Glemmis

Hi @Belgrave14, I had a single mastectomy in 2016 & wanted a double but surgeon said it wasn’t necessary. I regretted that decision so in Feb this year had the other breast removed & double reconstruction and am very happy. I was always worried I would get cancer in the remaining breast & mammogram time was awful. I also have very dense breasts so that was a concern too. I hated being lopsided as well.  Doctors always go on statistics but I think you need to go with your gut feeling. I went private & the mastectomy part was mostly covered by Medicare & private insurance but you would need to check with your health fund. Good luck with your surgery & any decision you make. 

BlackWidow

Single or double ?  If I knew then what I know now I would have insisted on a double mastectomy (this had never been mentioned to me).  One reason is the reduction in worry.  Another reason is that even wearing a prosthesis I find the real boob pulls the fakie across my chest, no matter how tight I have the bra.
Remember that you can always negotiate with the surgeon re his costs.  Are you going public or private ?  I have found surgeons waive any gaps if I use private cover.
Hope that helps.  Good luck with your pathway going ahead.
Anne

onemargie

Hi there @Belgrave14. I had triple neg bc may 2016 left breast stage 2a grade 3 aged 43.  8 rounds of chemo, no lymph nodes involved and scans clear. I had cysty dense b cup  boobs and was never told having dense boobs could increase my risk until after treatment. I had the left boob off as I was told if I did I would only need chemo and no radiation so that was a no brainer for me. I had this done in the public system. This meant Less treatment plus avoided the logistical nightmare and costs  of getting to and from the Royal brisbane.

I took the other boob off as my guts told me too as a private  patient in the public system with the same surgeon  as he does both public and private which cost me $350 from memory  for the bed for the night and the rest was mostly bulk billed just a small out of pocket for the surgeon and I only had to pay the gap, nothing up front for him or the anaesthetist

. I haven’t had a recon, did consider it but decided I just simply didn’t want more surgery and  I would have to have four lots to get a good result and I am more than happy being flat and fabulous. I have no regrets with my decision.

 I work as a nurse and I never wear my prosthetics as I’m more than comfortable without them. Only pop them in if I’m going out somewhere. My surgeon said it’s not necessary either  to have a double but he also respected my decision. I would always be stressing  about the cysts etc. and wanted to avoid bloody mammograms.  I have a yearly chest wall and auxiliary ultrasound which I’m more than happy to do. This is my decision and was the right one for me. My advice is trust your guts no matter what.  All the best with whatever you decide. Big hug. Margie 💕

primek

I chose both breast to be removed and had reconstruction. It was my choice but suggested by my surgeon. I had dense breast tissue and had a clear mammogrsm only 5 weeks before i found a lump. My sister and niece had breadt cancer. My Aunts on my father side had either fied of ovarian o breast cancer...the last one died following breat, ovarian then another breast cancer. In my mind was always the thought if she'd had both she might still be alive. Whilst I have no gene like my Aunts, they believe my sister myself and niece probably have a yet undetected gene. 

So yes...removing the other breast does not reduce the risk of metastases, just the risk of a new primary breast cancer forming in the other breast.. I've miss my breasts but have never regretted the decision.

kmakm

I had both off, even though there was no cancer in it. I had a bad family history, the mammograms I had failed to see two areas of DCIS, one very large, and had already had a lumpectomy & a re-excision for margins because of one of the unseen areas of grade 3 DCIS. I'm raising my sister's young kids after she died from BC, so a BMX was on the cards from the start, my diagnosis appointment. My BS was very sensitive to this.

It still took a lot thinking, questions and self-examination to make the decision to do it. But ultimately I trusted my gut. It seemed like the right thing to do and afterwards, when it was discovered that I had a gene mutation that greatly increased my risk of developing a new cancer, I felt it confirmed that I'd made the right decision. I wish I hadn't had to, but I have no regrets  K xox

Belgrave14

Thank you all so much for sharing your stories, they really help x 

youngdogmum

Hi @Belgrave14; not in the exact situation but I too asked for both to be removed and was told the same re: risk. 
I will be pursuing the other one removed when I have reconstruction. My remaining boob is so lumpy I honestly don’t remember what’s normal anymore for that breast. Yes the research says the risk is minimal to have cancer in both breasts, but I think a lot of us just want that peace of mind. 

Belgrave14

Thanks youngdogmum. I am not doing reconstruction so the hope is to only have surgery once which is one of the reasons I am so keen on doing the double. It is interesting that most people have/intend to remove the second even if they start with a single.

Zoffiel

Hi @Belgrave14
Both off for me too. That was back in 2006 and I had to interview 4 surgeons before I found one who'd do them both at once. It was not a 'thing' in regional Victoria at the time (too stressful, apparently) so I had to go to Melbourne. I had immediate implant reconstructions since they were offered--if I'd been able to get the surgery I'd wanted up here, I'd probably not have bothered with the retreads but once they were on the table, so to speak, I thought it would be a good idea. I was 43..
As it turned out, the 'good' boob was also corrupt so I'm glad I did it. Even if it hadn't have been evil, I still didn't want it there--my breasts were no longer my friends. Weirdly, I felt that one lonely tit sitting on my chest would be so sad i couldn't contemplate it.
Everyone's relationship with their breasts is different. I had chemo before mastectomy and by the time my surgery arrived I thought of them as toxic lumps of fat and have never regretted getting rid of them.
It's a big decision. Follow your gut. Mxx

Blossom1961

Like @BlackWidow I only had one off but my real boob pulls everything on to it’s side and I constantly have to readjust.

TonyaM

Hi Belgrave14, I had a single mastectomy in 2010 so I’ve been lopsided since.To tell the truth,I’m sick of it.I’m compelled to wear a prosthesis which restricts clothing choices in summer eg.can’t wear halter necks,strapless or thin strap singlet tops or low necklines of any description. But I’m stuck with being unable to decide between taking the remaining one off,reconstruct one side or both. Because of previous radiation,I can’t have implants and could only have Diep where they construct boobs from your belly fat- HUGE surgery.My surgeon says I’m getting to an age where I only have a few more years to decide on such big surgery
(I’m 64 next month).She also said that each year brings a slight increase to bc occurring in the remaining breast- I’m not sure if she meant the general aging population or just us poor bc buggers.My bc wasn’t aggressive just hormone +ve. I think every bc decision is awful and also very personal.Intimacywise,I have one breast with feeling which is something to consider but then I don’t do naked in bed because of my embarrassment of lopsidedness.YES,even infront of my husband of 40yrs! Would I also be like that with no breasts? Don’t know.So there you go- my personal take on the lopsided life. Ultimately,go with your gut and know that any bc decision is an awful one!

Sister

I feel a bit like you @TonyaM I've had one off and did ask about whether it was a good idea to take the other at the same time.  I was assured that it didn't need to be done.  Since then, my surgeon has said that if anxiety is too much then he would take the other when I have reconstruction.  However, I am completely on the fence about reconstruction (and the skin is still too tight, anyway) as the idea of having major surgery is way too hard.  But I hate the bras I have to wear now and in summer, the clothes - so many things that I have picked up only to reject because the neckline is too low and I'm not talking major cleavage here. The surgeon has actually left me with a little bit of cleavage but there seems to be nothing on the market to take advantage of that.  Even most bathers seem to be what grandmas used to wear when I was a kid.  While I care what I look like dressed, I think the chest of the naked me just looks odd.  It's lost any interest or appeal for me at all, no matter which side I'm looking at.  

June1952

One flat (? well, bumpy ugly flat) side and one hanging her head in shame - not a good look here either !  As @BlackWidow said, it does not matter how tight the bra is, the real boob pulls the fake one across a bit.  Each year when time for the mammogram I decide that if there is any change at all I will not hesitate in saying to just chop it off.  I am hoping that at the time they can make the first mx look a bit better.  In the past my aim was to have a DIEP but for many reasons that is not going to be possible so 'flat and fabulous' I will be.  

Belgrave14

Well if I had any residual doubts you guys have definitely squashed them. Hopefully I will be flat and fabulous too. Will keep you posted after I see my surgeon on Friday.