TNBC "Only about 50 out of 100 will be cancer free at 4 Years?"

hanley50

Hello all TNBC Sisters....Has anyone heard this?

I had neoadjuvant chemo (AC-Taxol) from 02/10/16-05/20/16 and then mastectomy 06/16/16. I did not have PCR (1.5 cm remaining and 1 node positive.) I am now in the middle of RADS (should be done on 09/26/16.)

My oncologist wants me to consider a clincal trial (but never stressed why other than that I did not respond so well to chemo) so he had them call me. I talked to the lady for a while and she sent me the paperwork. I was floored by what I read.

It basically says the following on the first page:

1. If you are TN;
2. Had neoadjuvant chemo;
3. Then had surgery with residual cancer remaining of =/>1cm;
4. Then RADS (if indicated);

If you have no further treatment only about 50 out of 100 are cancer free at 4 years.

WHAT??? NO ONE TOLD ME THIS!!! EVER!! I had to read about it when I got the paperwork!!!

Is this true? I've searched the threads and I have not come up with anything. I see so many that have done exactly what I have done with no further treatment and cannot find anyone mentioning this. Please help as I am freaking out!

I had my port removed when I had my mastectomy (because I was led to believe that I was on my way to PCR.)

This is an MD Anderson facility. I am going to try and post a screen shot of the first 2 pages of the packet I received.

Thank you in advance,

Maryann

hanley50

And....I don't even know if I can get into this trial when I am done with RADS because they still have to send my pathology out to confirm that it is Basal -Like, which is freaking me out even more. What is going on here??

Redporchlady

I would look at the trial and discuss all your questions with them. Stats make me mad because we are all so individual but if you have the chance to be in the trial I would encourage it. I did extra Carboplatin after discussion with my ONC for the hopes that my end result would be a PCR which I did receive. Good luck with your decision

Valstim52

Just my 2 cents, but what , who and where are the stats based on? where is the sampling and what years? How many women? I only say this because it sounds like a scare tactic to me, no matter who is heading up or backing the trial. Take this or die. Just my take on how it's worded. It could truly work, but then you won't know unless you don't take it? What about those who take it and still recur in a short time, and spent their last 2 years feeling crappy on chemo? No one tells you that. So the women I personally know and who have survived are just part of a 50 out of 100?

I shared this with my support group today, about 50 women, most TN and they all passed it around, paused and laughed. Yes laughed then shook their heads. They can because they are 4 plus years out and had no additional treatment, some are new like me. Some are stage iv and are on xeloda now. They all say if they had taken xeloda after surgery and rads, would it be an option now? For those in the group that have progressed xeloda is working for them. So many unknowns. One lady is on xeloda through a trial. She was a stage 3 but had hardly any reduction in her tumor with neoadj chemo. She says her paperwork did not say the above, though it referenced the Japanese study.

It just shows we need a lot more for TN.

I'm was in a study back in the 90's at a cancer center for my first breast cancer. If it had literature like this, I would not have done it. Just me. It was for tamoxifen. Many took it and still progressed. Some from my trial group. So you never really know. they were very careful not to give stats.

all just my humble opinion.

Val

hanley50

Hi Redporchlady - Thank you so much for responding. I have a call into them with a list of questions. Also moving up my appointment with my onc to go over this as well so that I have all my ducks in a row when I finish radiation at the end of September.

I was reading up on what they are calling option #2 underneath the line about 50 out of 100 women are cancer free at 4 years. The option about Xeloda. My onc never suggested this to me. I read the entire thread here on BCO about the ladies with TNBC taking Xeloda so I will definetly be questioning this as well (Thank God for all of the information that is shared here!)

Stats - I hate them too! I have been driven by fear for the last 9 months and everytime I try to get my head on straight and think logically about this mess, I will come across some stupid piece of information that takes me right back down to what I call my "crazy place." The place I go when I'm sure I'm gonna die! Not logical at all! This is when I re-read the threads for long term survivors and think, I can be posting on this thread years from now too, my long term survivor story!

I will let you know what I find out when I get my questions answered and also about Xeloda (which I believe is in pill form and would be a great option, since my port is out.)

Maryann

LifeAloft

Hi Hanley50, I had about 2mm of tumor left, my once positive node was clear. My MO mentioned Xeloda too, in fact she also mentioned Tamoxifen since my surgical pathology showed 2% ER+. She said she is going to do more research into Xeloda and we will talk about it when I see her in November after rads. I will definitely do one of the two, although she wasn't too sure about throwing even more chemo at me... I don't like the idea either, but I want to throw the kitchen sink at this.

And yes, stats suck. I've never been one to really look at the stays because I really don't want to know. In my head, it's always been 50/50, either it will reoccur or it won't.

Please keep us posted as to what you find out.

Valstim52

I participated in a trial for 'tamoxifen' with my first bc decades ago. No stats or what I call fear inspired literature, though some did receive and hear things at the time to scare you into taking it. That was my personal take on listing stats if you don't take something or do a particular protocol. There is a fine line (again all my opinion) between giving facts and scaring the facts. Who are the studies based on? where when what years? My MO was against additional chemo for me, when they thought I may have had residual. The tumor board felt if I recurred they may have used drugs that would help me get to NED if I were to recur. I pressed my MO during treatment about stats, and she told me if you recur then for you whatever the stat was it's 100%. Same applies to if it does not recur, for you it's 100%.

Funny, MD Anderson was my second opinion and they have never mentioned additional treatment. When asked about xeloda by my peer insurance physician in the beginning, they said the study was still ongoing and not recommended as a first line of treatment. They have numerous trials associated and working on their campus.

We are all individual and have to make an individual decision based on our pathologies.

hanley50

LifeAloft and Valstim52 - thank you so much for the input! Question. On my surgical pathology report, it only references what my original biopsy in January came up with as ER, PR, HER2 Negative. Shouldn't they retest this?

LifeAloft - I know what you mean about more chemo. I don't want it either, but better to have it now than recur and have it later (although no gaurantees.) How are you doing with RADS so far?

Valstim52 - these are some of my questions too! Who are the studies based on? Where when and what years? I've been following you Val...I hope you are feeling well.

Maryann

VLH

Hanley50, I've heard some say that there's no reason to retest; however, my core needle biopsy showed HER2 positive while my lumpectomy pathology report (less then 2 months later) showed triple negative. I didn't do neoadjuvant therapy, but it seems reasonable to ask that your tumor be tested if your insurance will pay for it.

char123

Hi Hanley: I just read your post and I am shocked.

#1 They definitely should have sent your tumor to pathology by now. I would never just rely on the biopsy

#2 I was TNBC and I was not offered Xeloda. That was 6 years ago, and I am doing Very well.

I am saddened that you have received a letter scaring you into more treatment. How very sad.

Valstim52

Yes Maryann, they should have sent it to pathology and usually they save it for a year, at least at my center that's what I was told.

Fiercer

Hmmmm.... scary information.  Is the trial asking if you had less than 1 cm of cancer alive in the breast at time of surgery that was removed?  I'd imagine if the cancer was not dead at the time of surgery radiation would wipe out anything left behind. Don't the margins need to come out clear? Right?

I'm 3.5 years out from diagnosis and 3 years out from radiation completion.  I was told I had NED and PCR, after surgery, but also told that if any cancer cells remained, radiation would clean it up.  At the time my medical oncologist took a  sabatical and I saw a new onc and he ordered scans PET and CT from toes to neck and I showed clear.

I question the informatiion contained in the trial honestly, seems like something is missing.

Can you ask for scans to see what is going on first before comiting to something you may not need?