TRIPLE POSITIVE GROUP

Ok little late on response here !! Sorry been gone for a while. I just had to write in on the period issue I have not had a period since my first chemo back in Jan 2012 At the time of first chemo I was almost 44 years old Nothing not even light , Then Bam !!! 5 years later yes I said 5 years later at 49 years old, I just had bleeding from HELL !!! So much so I had to use 2 pads at once and it was still making me go through my pants I bleed for 5 Days like this !! SORRY to much info I know !! I am not on tamox or anything else. I quit tamox after taking it for 2 1/2 years. out of the 5 years. SO I know omg I freaked out and right away I go in to my Obgyn he does all kinds of test in office like right away and the next day gave me 2 different ultra sounds, belly then vaginal. 2 times of blood work then a D&C At the hospital days later.. Get this all this and they can't find anything wrong !!! great news BUT he said it's real rare to just out of the blue to have a period after 5 years !! Even blood work showed Post menopausal So he is just as stumped. I told him I guess I will think that my body wanted to say No your not done and gave me one more before the good bye. Who knows But it sure was pretty scary .

I am confused about this newer categorizing of breast cancer. From Mayo-

"Doctors are increasingly using genetic information about breast cancer cells to categorize breast cancers. These groups help guide decisions about which treatments are best. Breast cancer groups include:

Group 1 (luminal A). This group includes tumors that are ER positive and PR positive, but negative for HER2. Luminal A breast cancers are likely to benefit from hormone therapy and may also benefit from chemotherapy.

Group 2 (luminal . This type includes tumors that are ER positive, PR negative and HER2 positive. Luminal B breast cancers are likely to benefit from chemotherapy and may benefit from hormone therapy and treatment targeted to HER2.

Group 3 (HER2 positive). This type includes tumors that are ER negative and PR negative, but HER2 positive. HER2 breast cancers are likely to benefit from chemotherapy and treatment targeted to HER2.

Group 4 (basal-like). This type, which is also called triple-negative breast cancer, includes tumors that are ER negative, PR negative and HER2 negative. Basal-like breast cancers are likely to benefit from chemotherapy."

I AM TRIPLE POSITIVE, ER 98.80%, ER 77.77% HER2+++, plus Ki-67 15%

So I don't fall in any of these 4 luminal subcategories. Is there a mix category?

BTW my stats above are AFTER my first round with BC in 2007, re diagnosed this year. So 2007 bilateral mastectomy and hyster/ oopher and still thus crazy high grade HER2+ and high % for both ER/PR EVEN WITH NO OVARIES FOR OVER 9 years! Adrenal glands production will be turned off soon on one of the AI's for post menopausal not sure which one yet!

I would like to ask this group which seems to have the least side effects?

SpecialK

What does slightly worse mean in the Luminal B description?

Coach Vicky

Thank you,SpecialK!

Coach Vick

Hi all -- some news you might be interested in:

Diabetes Medicine Linked to Better Outcomes in Diabetics With HER2-Positive, Hormone-Receptor-Positive Breast Cancer
March 16, 2017
Diabetic women treated with metformin who have been diagnosed with HER2-positive, hormone-receptor-positive breast cancer have better outcomes, including overall survival, than similar women who were not treated with metformin. Read more...

Liz - five years was the standard amount of time for both Tamoxifen and aromatase inhibitors, based on previous studies. There was some thought that both drugs provided some carryover protection beyond the five year period versus not having taken anti-hormonal therapy at all. With Tamoxifen initially, a study was conducted lengthening the therapy time to 10 years, which showed improved DFS and OS. Here is a link:

http://www.breastcancer.org/research-news/20130604

Later studies were done on aromatase inhibitors in the same fashion, link:

http://www.breastcancer.org/research-news/10-yrs-of-femara-better-than-5

Doctors have differing opinions regarding benefit based on their experience and how current they are keeping on studies - and how much credence they place in those studies. The BCI test (Biotheranostics) - a genetic assay done on the patient's original tumor, indicates whether one is at risk of recurrence beyond five years, and whether or not , based on the assay results, you will benefit from continuing anti-hormonal therapy. It is a fairly small number of patients who have quantifiable benefit from continuing AI therapy, which comes with side effects that can affect quality of life. In spite of this there are some docs who are asking their patients to continue with anti-hormonals for 10 years without testing of any kind - this may be their blanket approach, or they may be considering each patient clinically before making that recommendation. Link:

https://www.answersbeyond5.com/what-is-bci

I had a BCI test done and the result indicated that I was high risk for recurrence, but received little benefit from AI therapy. To me, that meant I had received little benefit for the five years I had already been taking it so I asked for a PET/CT, since it had been a few years since I had one. My oncologist has asked me to continue Femara as long as I can handle the side effects, because even though I seem to receive little benefit, it is not necessarily zero benefit.

wabals - I understand, - I had a massive Ki67 percentage and a mitotic rate of 1 - discordant for sure. The other two components of my grade were pegged, I am thinking the slide the pathologist looked at was from an indolent section of the biopsy sample. My surgical tissue sample was not re-graded or tested for receptors or Her2 status, but that may be because in addition to it being done in pathology for the biopsy cores I also had Mammaprint done. Side note: If you live in Leesburg, I spent a lot of time at the equine hospital at Morven Park - we used to take care of the neonate foals in the spring, lived in Springfield for 10 years, DH was stationed at the Pentagon. My son is a firefighter/paramedic in Loudon County now - small world, right?

Small world indeed! We also live in Fl. On Hutchinson Island and went to Tampa when we were evacuated. If you have plans to come to Va message me. Would love to meet you! Are youan NP? I was until I retired.

My path was done on my tumor after surgery. My mitotic rate was also low. Go figure

wabals - I was coming to Virginia regularly from 2012-2015, and stayed with my son in Sterling several times, for a Her2+ vaccine trial through Johns Hopkins at Sibley in D.C. I am done with the active phase of the trial - now am just being followed on the phone. My son moved to Great Falls, but still volunteers at the fire station in Ashburn. Where did your grandson volunteer? How funny if they know each other! My last trip up to the area was last summer, unfortunately for a funeral for an old military friend who had stage IV BC. I have many friends still up there and need to come back up to see everyone! I will def let you know if I am headed up that way - would love to meet you too! I was fortunate to meet several from BCO during my trips north for the trial, and also to meet other trial participants who were Her2+. I am not an NP, worked here in Tampa in Transfusion Services administratively, in the same hospital my BMX was done in, but left there in 2011 - too much treatment that still needed to be done and upcoming surgery - it wasn't fair to my colleagues, so I resigned. I have a re-hire clause so I could return but not feeling that working in a hospital is where I want to be, have been a patient too many times now, lol!

Special KAnother thing in common. I am in the ATEMPT trial and got most of my treatments at Sibley.

Finished all treatment except arimidex. Message me with your son's name

Do you get offered these tests in the US or do you have to research to find out about them and then pay? As a person receiving treatment in Ontario, Canada, I really feel we are offered so much less by way of genetic testing etc. Just wondering if you have to push for it or if it's presented up front as a good course of action to take.

I have read about the presence of PR versus lack of presence and I believe there is evidence that it's better to have the PR, yes. It doesn't seem like a drastic difference, but definitely has an effect it seems.

How often did you have pet scans?

posey - the BCI test was offered by my MO without any prompting from me, although I was aware of the existence of the test.

My insurance did not cover it, but because I am insured and insurance denied, Biotheranostics takes over the appeal process. If they are unsuccessful, they do not charge the patient anything.

Sorry if my message shows up twice...I was typing and the screen just refreshed!

In terms of genetic testing, I do think that it's kind of random as to what you get offered (and when I say that, I mean beyond the obvious reasons to get genetic testing such as young age and possible gene mutations, etc.). I personally think it depends on your MO's personal approach and where you live, etc.

As for scan testing, again I think it depends on each situation. Two years before my diagnosis, they found microcalcifications in my breast (that side was always very fibrocystic - more so than the left). They did a biopsy and that turned up negative. Then, a year before diagnosis, I had a mammo done. I'm positive my cancer was there at the time, but the mammo totally missed it due to my extreme breast density. So throughout my chemo treatments, they did about 4 ultrasound scans (or 3? Can't remember). I had one about a month before surgery and it wasn't showing any change from about 2 months prior. This was pretty upsetting. But then they did surgery and the path report showed complete response in the nodes and breast. This showed me that the tests can miss things depending on your breast density. They told me that my breast was very difficult to monitor across all modalities. My MO did tell me all the way along that pathology was the definitive statement. It is frustrating and scary for sure. I had to lie down in my oncologist's office as I felt I was going to pass out when she told me yet again there wasn't much change.

So, I guess what I'm saying is that a) you should push for tests if you want them, and b) the tests aren't King always (ultrasound and mammo and MRI). As for your healthy breast...I'm in the same situation wondering about that. I've asked them to do another ultrasound on my left to keep watch. I am thinking I might one day just have it off (because I've learned that the tests aren't 100% for me given density).