Mastectomy

I was diagnosed with breast cancer on 5th October 2010. Had lumpectomy 2 weeks later to remove 6 tumours, pathology report said triple negative grade 3 with spread to blood vessels & DCIS. I have just ha my 5th round of TC chemo with 1 more to go. I will be having a mastectomy with reconstruction in May. My question is should I have a double mastectomy? My surgeon says it's not necassary but can't help wondering if this would drastically help my chances of the beast not returning!! I had my 50th birthday last week.
kazzy1961

[OkieJess]

Happy 50th Kazzy! Congrats on your progress, You are SO CLOSE, only one more round to go!!! ;). I think the decision to go double is entirely yours, given there is no clinical (by your Dr's opinion) reason to to take both. Do you think you'll wake up regretting it if you don't? And will that regret lead to fear (rational or irrational, no one but you is going to live with it or understand how consuming it can be better than you). Are there any reasons you feel strongly for keeping the healthy breast?

[SueYoung55]

Absolutely get a bilateral done at the same time. Two reasons. First one is for symmetry on your newly reconstructed DIEP breasts. You get one shot at this going with DIEP so you really want them to match.

Secondly, you have triple negative cancer. ** tnbcfoundation.org is a website specifically dealing with triple negative cancers and I believe you will find the answers there to help you make this decision, which isn't an easy one. Depending on its stage of diagnosis, triple negative breast cancer can be extremely aggressive and more likely to recur and metastasize than other subtypes of breast cancer. I would have as much breast tissue removed as possible. Have you been tested for a BRCA mutation?

Please let us know how you're doing. Best wishes while you make decisions and remember, we'll be here when you need us.

[kazzie1961]

Hi Sue

Thanks so much for your comments. Yes, I realise how aggressive tnbc can be & from what my doctors are saying mine is very aggressive!! It's a big decision & my husband has said he will support whichever way I go - he also said he won't influence me either way.
One concern I have is having no feeling in both breasts if i go bilateral & I can't help thinking of the sexual part ot this!!
I'm also concerned about the symmetry if I go unilateral - so concerns either way!
No, I haven't been tested for the BRCA mutation (I have 2 daughters) both my surgeon & oncologist have said it is unlikely I carry it as I'm the first in the family to have cancer - still can't help wondering.
Did you go bilateral & if so was this by choice?
Thanks again, it's so nice to hear from other who have been through or are going through the same thing. Kazzy x

[kazzie1961]

Hi Jess

Thanks so much for your comments,
Yes, so close with one more chemo to go & absolutely can't wait till it's over!!
It has taken over my life & as much I'm not looking forward to mastectomy, need to get it over & done with to be able to move on.
I'm scared I might regret not having the bilateral & also scared I might regret having the bilaterlal - rational or irrational!!
Did you have bilateral & did you have reconstruction? If so, which type of reconstruction?

[SueYoung55]

I had a 10 cm mass in my right breast which was removed after 4 rounds of chemo. I then had 4 more rounds of chemo followed by radiation. A year & a half later I decided I wanted reconstruction and so I had the second breast removed at that time to reduce my risk as much as possible as my cancer tends to go bilateral. I had two lumps in remaining breast at the time I had it removed. Thankfully, both were benign.

My husband loves my new breasts and knows I can't "feel" all the touches but that doesn't bother him and it certainly doesn't bother me. His hand is so large that when he's going to it with them his hand is also touching areas I can feel with and it's still an attractive sensation, if you know what I mean :)  That and... there are so many other body parts that come alive at his touch... ones that aren't trying to kill me :)

Best wishes.