Newly diagnosed, just learned I'm also triple negative

dianosed with stage 2 grade 0 in May. Did lumpectomy and on sixth round of chemo. Chose to not read a lot or educate myself but yesterday at support starting talking about triple negative which I am. I knew but choose not to read about it. Now I'm reading its higher chance to return in three to five years and doesn't respond well to chemo. Is this true. Can when with triple negative never have a reoccurrence. Also when they say survupival rate what do they mean. I keep hearing five years is that all most people have to live. I hear of success stories twenty years later

Pls someone help and relieve my anxiety. Losing my mind right now

Thanks

Irish girl...I've read the opposite. Triple Negative responds better to chemo than ER/PR/HER2. Yes we have a lower survival rate in the the 3-5 years after treatment, but after year 5 we have the same survival rate. I have a 70% chance of not having a recurrence. I'll take those odds. You are grade 0! That is awesome. They caught it very early. If it hasn't spread to your lymph nodes that is another plus.

The above is what I have read.

Irishgirl - Just wanted to chime in here, as a 5-year TNBC survivor.  I had a very large tumor and a few lymph nodes involved.  Try to think positive thoughts and let the negative ones go as much as possible.  It can be hard to do that, especially in the beginning.  I wanted to offer you some hope.  Reach out if you have questions.

Hugs,

Kathy

Hi, everyone. I wanted to address a few things mentioned above.

There is no Grade 0 in breast cancer classification. By far, the most common system for determining grade with this disease is the Nottingham Histologic Score system (the Elston-Ellis modification of Scarff-Bloom-Richardson grading system). This system only has designations for Grades 1-3. Some of the older classifications for breast cancer list a Grade 4, but it is seldom used anymore.

Regarding Triple Negative's chemo response rate--that is a difficult statement. Triple Negative is not one disease; it's a designation of exclusion--basically an "other" category. Because it is not yet known what fuels TN, it's diagnosed by ruling out the known classifications: Estrogen Receptors (ER), Progesterone Receptors (PR), and an over-abundance of HER2/neu protein. So, when a pathologist looks at the tumor sample and can't find evidence of these three characteristics, a label of "Triple Negative" is given. Unfortunately, that tells us little about what is actually driving the individual tumor. So, as a result, the TN subtype has quite a variety of characteristics and outcomes. We see some patients with TN who have an excellent response to therapy and never suffer a relapse; however, we also see the patient who has chemo-resistant disease which spreads quite rapidly, and everything in between the two. Part of this diversity is the individual patient of course, but a great deal of it is that we are not comparing the same diseases because we can't yet tell them apart. As research becomes more focused, we can expect to differentiate between the various subtypes of TN. Six distinct subtypes were identified a few years ago and undoubtedly more will be discovered--particularly as more research looks to the role of Androgen Receptors (AR), Prolactin Receptors (PRLR), and Glutamate Receptors, among other targets. For now, these are the known subtypes: six TNBC subtypes including 2 basal-like (BL1 and BL2), immunomodulatory (IM), mesenchymal (M), mesenchymal stem–like (MSL), and luminal androgen receptor (LAR) subtype.

So, yes, on the whole, TN's strength as a cancer is also its weakness in that because it is typically quite aggressive, it makes itself an excellent target for chemotherapy. The flip side to that is that for many who respond to treatment but later have a metastatic recurrence, their disease is often (though not always, as there are no absolutes in cancer) chemo-resistant. This doesn't mean that they have no options as many times it is just a matter of trying a different class of chemotherapy or adding something like a PARP-inhibitor to the regimen.

Irishgirl: I understand your anxiety, but it seems you've misinterpreted the statistics. Across the board, many types of solid tumor cancers use a five year mark as a way to measure survival statistics--not that the patient only has 5 years to live. I think that slowly becoming more familiar with the particulars of your diagnosis will alleviate some anxiety and fear. I wouldn't suggest jumping in with both feet and drowning in the statistics for example, but taking time to learn little bits of information will help reduce the fear of the unknown and make instances like the one which just happened to you quite rare.

All the best.

Dear Terrified Daughter,

I don't know this for a fact, but it would seem to me that your mom could get chemo treatment in Bismarck and have her treatment directed from the Mayo Clinic. I used to live in Mandan many years ago, btw.

Besides that, just getting to Mayo in the winter will be ... cough... pretty damn hard.

know how you're feeling. I was just diagnosed with triple negative grade 3 idc. The shock is still there, but I've had a lot of support from several foundations. I'm only 33. My new motto is "fake it till I make it". I'm basically faking a good attitude until the fight. While this doesn't work for everyone, I find that faking being happy actually helps me be happy. Also with the people around me, I get more positive support, rather than pity. Only myimmediate support sees my fears and tears. My mood is the only thing I can control, I'm choosing to be happy about all of the positive things.

Tidewater, getting genetic testing can be very helpful to guide your treatment decisions. There are many options, so one day at a time. Also, a lot will depend on your particular situation. Take it slow, and breathe