Recurrence and mastectomy

Gosh Karen that is really tough - so soon after your last experience. TNBC does have a high risk recurrence I know. I was wondering if you have had genetic testing? 

I was diagnosed with TNBC in December last year - small lump of 16mm, no lymph node involvement. My consultant advised me to have chemo first whilst genetic testing took place as this would inform surgery discussions. I have followed this route and now have 2 sessions left of chemo of 12. The genetic testing has come back and thrown up that I have a faulty gene PALB2 mutation. It’s rare and it does heighten my propensity to breast cancer in the first place as well as getting it again.

Now that this is confirmed I have been given the option of risk reducing surgery which is a double mastectomy. I am not sure if I would have been offered this without the PALB2 mutation. I might have been but I don’t think so.

Regardless, I have decided to take the surgery option as I want to reduce risk and actively choose life. For me it’s a no brainier but I know for other people it’s a huge deal. My surgeon recommends for me that I should have the current affected breast removed first - allow time for healing and then the second. She feels this is the right way as my body has been battered by chemo. I am seeing the surgeon in the next couple of weeks and will talk about surgery on the affected breast in August and the other 6 months or so later.

Some people choose intensive screening  instead I know. I feel however for me i would always be worrying.

In my mind for you I’m thinking about the genetic screening - any my hospital offered free if under 60. I just made it at 59! Without the screening i wouldn't have known and wouldn’t  have been offered what i see as ‘protective options’ for potentially future proofing my life.

no sure if any of that is helpful Karen but that’s my experience.

Jan x

ps I should mention that half way through chemo I had a complete response and the lump could not be found - my consultant was delighted I had such an excellent response! The added gene mutation however changes everything for me in terms of risk on top of TNBC, so in spite of an excellent response - I’m still choosing this route.

Thanks so much for your reply Jan.....your story is very similar to mine. My TNBC tumor was quite large so I had 8 rounds of Chemo first with really good results. By the time I had lumpectomy there was no tumor visible, so my surgeon took a large margin where the marker was.

This is why I am finding it hard to accept a recurrence so quickly. I have had BRCA testing and it came back negative. 

If I were in your position, I too would opt for double mastectomy, I am going in  for my op today and intend to ask my surgeon about future risk and having the other breast removed. My breast care nurse has said risk of getting it in the healthy breast is very low, however I think with TNBC there is still a lot they don't know.

I wish you well with the rest of your treatment, one step at a time isn't it....please stay in touch and thank you again for your support.

Karen X 

Aaaaah Karen I am going to hold you in mind today as a ‘sister on this road’. Glad you have had the genetic testing so at least you know the score on that.

Really really sending you all the love for your op today - let me know how you get on with that and your discussions re other breast.

Definitely is one step at a time - and you have just stepped another one!.

Jan x

I have tnbc myself and currently on xeolda for belt and braces ( after chemo, mastectomy and radio). I am however aware of a close friend they had tnbc and it reoccurred 11 months later in same breast. She was treated again with r and has been fine for 16 years! Best of luck.

Thank you for sharing yours and your friends story, it's really encouraging to hear good outcomes for people with the same type of BC. I hope you are keeping well, sending very best wishes to you.x