Implications of triple negative bc

Thanks for all your responses ladies. It has been very helpful. I had my first oncology appointment yesterday and I will be having fortnightly chemo over 16wks. I am definitely not looking forward to that...

Hello Tarnya.  My name is Bel and I had Triple Negative Breast Cancer in 2012 diagnosed.  What a nightmare that was, the worry, the not knowing.  What I found was that there were very important people to ask certain questions, they were medical staff and I felt secure in what I was told.  The Breast Care Nurse was fantastic.  The staff at the Cancer Council fantastic!   Then there was BCNA and the friends I met and the emotional support I received.  It is just a type of Cancer, that is all, triple negative as you said.  But every one has a different situation revolving around their lump, where it is and what course of events follows that.  I never discovered any one in the Same situation as mine when I went through it 3 or so years back.  I did not have my breasts removed, just the lump and the 2 surgeries under my arm, as it occurred at the age of 47.  

I am currently being assessed for further gene analysis to determine whether there is a high risk of it returning.  Decision to remove the breasts is determined by the results of the faulty gene being present.

Good luck

Hi,

My first triple negative was in 2008 (age 53) - treated with 3 x lumpectomy to get clear margins. No node involvement. 56mm DCIS with 4mm invasive. Treatment was 30 x radiation visits.

Second tripple negative was in 2014 (age 59) in other breast - treated with 1 x lumpectomy - no node involvement - 16mm invasive - 20 x radiation visits.  

Was sent to geneticist in 2014 but at the time not enough family history for free testing (I believe it is over $2000 for testing privately).  Was offered chemo as it was the second time but after finding out the side effects and the extra 5% survival rate I declined chemo.

One year later, after another breast cancer in the family, I was suitable for genetic testing - results took 6 months and turned out to be negative (very pleased with that).

Just about time for my 2 year scans - hopefully all will go well with them.

Mastectomy and chemo seem not to guarantee you wont get it again.

There is an up side to getting it twice - you know what to expect - didn't seem as scary the second time.

I was a public patient both times and have had excellent care (without delay) and have had no medical expense at all.

I know it all seems overwhelming - one step at a time!

BJP

Sorry to hear of your diagnosis . I know what you mean about triple negative being confusing, as most BCs are hormonal and have a different treatment plan.

I was diagnosed with triple negative last year and also have the BRCA gene. I'm only 39 and we have no family history of cancer, so it was a big shock. No one else in the family has tested positive for the gene, so there's actually a chance I could be the first. It's rare but possible.

If you find out you have the BRCA gene, your medical team will advise a bilateral mastectomy and ovary removal. Ofcourse the choice is yours but I choose to have a bilateral mastectomy with immediate reconstruction straight after I finished chemo. I'm also booking ovary removal.

Now I've had my mastectomy, I feel a sense of freedom knowing I've done everything possible to eliminate a reoccurrence. Chemo was the pits , don't want that again!

It will be much easier for you to make decisions once your gene results come back. By the sounds of it, your surgeon is confident the lumpectomy was successful and you will just need to be monitored closely for the next few years.

My oncologist said that with triple negative, even though it is one of the hardest to treat, once you pass the 2 year mark all clear, chances of a reoccurrence hugely decrease (in comparison to hormonal BCs).

Good luck with the gene result . Fingers crossed for negative. They should fast track your results (because of your diagnosis), so you should find out in 2 weeks. Keep us posted . Sending hugs xo

Thanks Sherrill, it is hard for me to know what to expect because I do not know anything about my biological father or his family so to hear that my BC may be because of a family history has really thrown me a curve ball. My BC was like yours, clear margins and not found in nodes. I, like you too, would opt for double mastectomy and hysterectomy if I was given the news that the cancer could return.  Thanks you your info :)

**"of the cancer recurring" not the breast recurring...**

Hi

Sorry for your diagnosis of BC. I am also triple negative so I'll just explain what that meant for me.

My lumpectomy was successful, clear margins and no lymph node involvement. So my follow up treatment was just to be chemo followed by radiation and then just monitor my boobs regularly. That would have been that. Because of the triple negative, it meant that the cancer wasn't a hormone related one so hormone treatment following radiation wasn't on the cards.

However, triple negatives are more closely linked to the BRCA gene mutation than hormone related cancers. That doesn't mean 100% that you have the gene mutation but that would be why the doctor suggested it.

In my case, triple negative plus strong family history pointed in that direction. And yes, I tested positive for the BRCA2 mutation. That means my chances of the breast recurring in the other boob are much higher and my chances of ovarian cancer are also higher. I was given the option of just continual close monitoring or further surgery. I've chosen surgery. So now, instead of just leaving my treatment as is, I am currently planning a double mastectomy and later a hysterectomy.

But remember a triple negative doesn't automatically mean you have the genetic mutation. The chances are very small. But that's why they are suggesting you test for it.

I hope that helps.

Sherril