Preventative mastectomy decision - young mum

SimB

Hello,
Are there any young mums out there, without BRCA, who have chosen to have a preventative mastectomy of the other side at the time of reconstruction? 

I am a young 34yo mum who was diagnosed with BC, stage 2-3, 30% Oestrogen and 100%HER Pos. This last year I have gone through chemo, surgery and radiation and as I gear up to having reconstruction I would also like to get a preventative mastectomy on my other breast. My surgeon isn't keen on me making this choice.  

My pros are I never want to go through this, or put my family through this again. My cancer was aggressive and only a few months old had spread to lymph nodes, so I consider myself extremely lucky it was caught. As I have large breasts even the surgeon could not feel the tumours when he knew where to look, which makes it impossible for me to catch BC early if it does develop it in the other breast. And what if I am not so lucky next time around. After genetic testing came back negative I was still given a 20% chance it will occur in the other breast. 1 in 5 seems too high for me to gamble with. And if I get the other breast done they will look somewhat the same... my husband is completely supportive of any choice I make. 

Cons for me are the risk of lymphoma and other complications in getting implants. Not knowing if I am cutting off a perfectly good breast that may never develop anything. 

Did anyone here make this choice and what has been your experience? Are you glad you proceeded or do you wish you waited..? Or is anyone else at the same stage as me and thinking this through? 

Thanks,
S

AllyJay

Another member asked a similar question under the post "It's up to you"...just a bit down the page. I gave her my response on that post, which would be easier for you to read there, rather than repeating myself again here. Please read all the other responses to that post by other members as well. It may answer some, or a part of your question.

SimB

Thanks so much @AllyJay ! I will go read through it now. While I joined up when I was diagnosed for some reason I haven't felt strong enough to come on here and post. So should have read through a bit before posting. Thank you. 

Sister

I also answered on that other post.  One thing you've said that struck me was about lymphoedema.  As far as I'm aware, that risk comes from removing the lymph nodes rather than the breast so I wouldn't have thought it a problem in this case.  I'd be interested to hear what other more knowledgeable members say.

AllyJay

No problem at all, I just thought that part of your question was addressed there, and that you might find it useful. Please feel free to join in on the forum, we discuss matters both deep and trivial, and many of us find that a good dose of very black humour keeps us somewhat sane. We are certainly a diverse bunch, but the thing is, we all "get" each other. Young and old, male and female (yes we have some blokes here too), rich and not so much, those from the Back of Beyond and those in The Big Smoke, we are all in this crapfest together. Sending a big cyber (((hug))).

Sister

And don't apologise for anything. It's all so much to take in - we know as we've been there.  Just glad that you found us.  You may wish to join the young women's group.

Afraser

There is no need to remove lymph nodes unless you have significant evidence that nodes are affected, which means that the cancer may have spread, to an extent. Preventative mastectomy therefore should not put you at risk of lymphoedema (bearing in mind that primary lymphoedema can be caused by other things). I have some comments on the other thread too. Best of luck, it's a bugger of a thing to decide about. 

kmakm

Hi @SimB. I have had a preventative double mastectomy. Click on my name to read my back story. Big boobs and unfeelable tumour here too!

I'm not a young mum like you, but I am a mum to 19, 15, 13 and 10yos, the latter being my sister's kids.

With the family history and my responsibilities a double mastectomy was on the cards from the beginning, something my breast surgeon was sensitive to from our very first meeting (diagnosis).

Without the family history I was a lumpectomy and radiation patient, but the oncologist felt it was worth going the extra mile so I did an oncotype test to see if chemo would be curative, which came back positive. So I had a lot of thinking time in the intervening time, and after a great deal of thought and debate and discussion, I went ahead and did it.

No lymphodema as no nodes removed other than one in my Sentinel Node Biopsy in the first operation to remove the tumour and check if the cancer had moved.

In the earlier second operation (a re-excision) for margins, they found 4cm of previously undetected high grade DCIS, and after the BMX, more was found. That right there felt good, adding another justification to my decision. There was nothing in my other breast, but my stat for getting BC again was at the 25 - 27% mark, one in four. No regrets.

Subsequently I've tested positive to the CHEK2 gene mutation, which my BS said this week, pushed me close to the BRCA zone for likelihood of BC. So more hindsight justification, of the highest order.

Absolutely no regrets here @SimB. Lots of sadness, and my goodness I miss my boobs, but the relief that I feel at knowing I've reduced my chances of getting it as much as I can, is profound. I will never have a mammogram again, a bittersweet freedom, but a freedom nonetheless.

I went straight to reconstruction, I didn't want to wake up flat, and used my belly in a DIEP. So my foobs are warm and part of me, though with no feeling past about a third of the way up.

You might like to contact Reclaim Your Curves to see if they have someone you can talk to who's in a similar position to you. This link could help.

https://www.reclaimyourcurves.org.au/connect.html

I'm not advocating that you should do it, or shouldn't. It's just about the most personal decision you'll ever have to make. There's no right or wrong; you 'just' have to make the right decision for you. Keep asking questions. If you'd like to chat offline, PM me here and we can connect. You can ask me anything, I'm an open book! All the very best, and a big hug darl. K xox

primek

Whilst not as young I had a bilateral mastectomy and reconstruction ...my tumor was found by chance after a clear mammogram 5 weeks before. I was terrified a new primary could be growing without being seen or felt and having a shitty family history my surgeon actually suggested it. Whilst I miss my breasts I'm happy with my decision. 

lgray3911

Hi @SimB I was 37 when diagnosed and my cancer was exactly the same as yours even down to the 30% oestrogen pos crazy! Anyway surgeon recommended single mastectomy but I insisted on having a double. They weren’t happy about doing it but I had to follow my gut and double mastectomy was the only option that made sense to me. Best decision I could have made for me. I have 2 small boys and like you I only plan on doing this once so threw everything at it. Chemo, radiation, herceptin etc... I’m not planning on going down the recon route at this stage. Couldn’t face another surgery at the moment and not sure why I would do it. My husband doesn’t care so not sure who I would be doing it for? I just want a healthy body and padded bras work a treat for me as was only an A cup before cancer! Good luck with your decision and just follow your gut! Xxx

Tracey2800

Hi @SimB,
I’m scheduled for a bilateral mastectomy once my chemo is finished, and like you my surgeon didn’t recommend this course of action, but it is what I want for a better peace of mind. 

Ive had 2 friends who had a single mastectomy and both said they wish they’d done both. Reasons included feeling lopsided, reconstruction doesn’t match properly, and worry about the breast. One of them went on to have the other breast removed 5 years after the first. 

At at the end of the day, make the decision that sits well for you xx