Triple Negative Stage I - positive reports of NO BC requested

Hi FernMF,

I was searching this site last week and came across a TNBC Survivor from 1987 original diagnosis.  She then had a 2nd TNBC in 2005.  Both were caught early and today she is doing great.  I wish I had written her screen name down.  I also know of another lady about a month ago who said she was 20+ years post TNBC and her Daughter was 5 years post TNBC. She had only been on this site once before I think, and she reminded us that many people (like herself and daughter) go on to live normal lives, but aren't on this site, so we aren't aware of all the many Survivors.  

Also, do you know about the Moonshot Project?  Aimed at getting advances for 8 cancers, 6 specialized teams and TNBC is one of them.  They are predicting this will make history and able to cut the death rate in half within only the first few years of a project slated to last 10 years.

Here is a link to one of the articles:

I'm 4.5 years out looking forward to 5 years in April!!

You'll do great!  Stage I is an excellent diagnosis and soon enough you'll be on here posting that you are 4.5 years out for another TN girl finishing treatment!

Take care!

Lorrie 

Fern: 

I am 3 years 8 months out from diagnose.  I was absolutely petrified when diagnosed with triple neg and thought three years out seemed like a lifetime away.  While we can never let our guard down with this sneaky disease called breast cancer (and er/pr positive appears just to be as sneaky as far as I can see from all the posts on this board and others), and I will look over my shoulder for the rest of my life, I am elated that I have made it to this point, and pray that it will continue.  Wishing you all the best and a HUGE congrats on finishing the dreaded chemo!

Hi FernMF:

CONGRATS on chemo completion! 

I am also getting the genetic testing done.  I was waiting until everything posted to my insurance, as I have reached my max out of pocket for the year.  I had the Oncotype DX test done 3 weeks ago, and insurance paid without issue. Even though that test is primarily to gauge chemo effectiveness for ER% patients, it was done to make a final determination if I'm Triple Negative. I'm very TNBC - we were looking for a determination of any ER% to give me the benefit of Tamoxifen.  But it turns out 'no' for Tamoxifen.

My DX is the same as yours and no family history of cancer.  There is some research between TNBC and the BRCA1/2. MD Anderson Moonshot Project announced 1 team that will specialize with both of these 2 cancers - TNBC breast and TNBC ovarian, because some researchers think that TNBC breast cancer is more genetically related to ovarian cancer than to other breast cancers themselves.

I google'd my insurance name and genetic testing and come across an insurance guideline that said they actually recommend it - especially with compensating factors - being under 45 was a green light for testing approval. But I think many companies are now covering it - and perhaps your doctor can write the referral in a way that says to determine hereditary risk or something.  

You sound really good today.  Tomorrow I go for my 2nd 90-day post treatment bloodwork.  

Hope you have a great 90 days.  Do you have a port in, and if so, when are you getting it out?

Congrats on completing chemo!

Although I am always looking over my shoulder, can't help it, I am 3 years and 7 months out from diagnosis.  As you can see from my siggy line, I did not do chemo or rads, so it has been an interesting "ride". No signs of recurrence and my surgeon said I am a "walking miracle".  I don't agree with that statement, but it was still shocking to hear. 

Although I have been under tremendous strain these past few months, I can't help but worry that it will "trigger" something, so I really need to get a better grip and a little perspective!  Ha!  Good luck with that I tell myself. 

I am enjoying excellent health (as far as I know), am more physically fit than I've ever been, no aches or pains to speak of, and very hopeful. 

Fern - I was diagnosed Triple Negative, midway between Stage 2 and Stage 3 and had a lumpectomy.  During surgery they did find a grape sized tumor in my sentinel lymph node so removed an additional 13 lymph nodes.  This was 6 1/2 years ago (May 2006).  Underwent 20 chemo infusions and radiation.  So far, so good. I am feeling well, active, working part-time.

You WILL be doing the fun stuff you refer to in no time. 

I had a BMX with chemo - no radiation.

My case was presented to the Medical Board and it was determined that I did not need radiation.  The subject came up again recently because I read my file and found out I had a narrow margin.  I sought a 2nd opinion, and my case was presented to a 2nd Medical Board. My narrow margin was within the range of not needing radiation according to the NCCN guidelines as well.  

Between the timeframes of Medical Board 1 and Medical Board 2 we retrieved an Operating Report (this is different from surgical/pathology report) from the hospital.  This report referenced that a small sliver of muscle was removed at tumor location (this added to the already documented margin).

The 2nd opinion RX Doctor had my slides assessed again at a 2nd lab.  This lab reported that a rim of fat surrounded my margin (adding more distance to the already documented margin).

Through the presentation at the Medical Board, it was determined again that radiation was not needed.

It also finally made sense to me what they had been trying to get me to understand.  If I don't meet the qualifications for radiation, then to do it would be over-treating it.  The benefit of radiation when not warranted, could be far less than the benefit of radiation if ever needed.  To use up this very valuable tool outside of medical protocol, could leave me vulnerable to not having this tool available in the event I ever really truly needed it.

My Breast Surgeon also for months has told me that he felt I would be 'burning a bridge' to use this tool at this time.

It's hard to separate the fear of knowing we did 'everything we could' to balancing it with 'we did a very aggressive appropriate treatment without radiation'.  Like everyone, recurrence is on my mind.  However, I have found great relief in trusting my Doctors (this is new to me) and understanding the theories behind treating and over-treating.  I feel tons of relief knowing that I have an available tool to use locally if I ever found myself in that position.

This was really a learning experience to me, as I was so stubborn and insistent on radiation ... that to finally understand the choices available to me, and the benefits of each choice became even more helpful in the decision.

I had new growth, enough not to need a wig within about 3 months.  I'm 6 months out from chemo now and I really have a lot of hair, especially on top.  It's becoming challenging to wear the wig, so I have to wear a wig cap due to all my new hair.  But I'm still wearing the wig, as my hair came in salt/pepper and I have to figure out what is the best dye to use.  I will check the safe cosmetics website for info.