Stage 1, grade 1 and pre-menopausal

RunFree16

Annice, is hormonal therapy useful if PR+ but ER-?

Annicemd

It can be Run free yes, but it's important to be mindful that the less differentiated tumours tend to be more aggressive so more aggressive treatment algorithms tend to be offered. So PR+, ER- tumours will more often be offered hormone therapy plus chemo esp if beyond stage I

Annicemd

Loral, not sure why you deleted your post! Thank you for sharing it initially. It is a horrific story and important for all of us to be aware of. It should be a warning to all of us with a cancer diagnosis that if our medical team recommendations are unexpected or illogical then a second opinion is essential,

Annice

Loral

Annicemd: here it is again..

http://www.dailykos.com/story/2013/08/07/1229570/-Michigan-doctor-arrested-for-purposely-misdiagnosing-cancer?detail=facebook

Annicemd

Thanks for sharing this Loral, it's not happy reading, but sobering and important for us all to see

Annice

MAMA46

ok girls, will keep you posted!!!lol

RunFree16

Thanks for the clarification, Annice.  It sounds as though Mama's situation is a great case for a second and possibly third opinion.

violet_1

RunFree:

Great question! I was actually wondering the same thing...;)

Loral: Thank you for posting this! Please don't hesitate to post negative/difficult-to-hear stories. We ALL need to know these things DO HAPPEN & that there IS fraud & malicious intent out there (for greed & big money), even in the world of Cancer Treatments.

And, ya know what? Who knows, there could be someone on this very board that (God forbid), has been a patient of his or knows someone that was...

I don't know how people like this live with themselves, except obviously they must have a seared conscience. So scary & unconscionable . Thrilled that they caught the *@!$$#^&*#!&$$!*....

MAMA46

vora---I THINK ONE OF THEM SCREWD UP (IN TESTING) GENOMIC SAID THEIR TESTING IS 95% ACCURATE -THAT EVEN IF THEY WOULD REPEAT THE PROCEDURE TEN TIMES IT WILL STILL PRODUCE THE SAME RESULT. WITH REGARDS TO MICRO INVASION-THAT TESTING WAS UNDER MY "PATHOLOGY REPORT" NOT GENOMIC. WHAT IT LOOKS RIGHT NOW (PER GENOMIC TESTING) I AM ER-PR+HER2-...(wonder if someone else out there has the same case like mine). Genomic stated that in order for a reccurrence score to apply the specimen should be ER+ in both IHC/ PRT....DON'T KNOW WHAT OTHER OPTIONS OF TREATMENT I HAVE FOR NOW OTHER THAN CHEMO THAT ONCOLOGIST SUGGESTED...

MAMA46

ANNICE-will know nxt week for my 2nd opinion. i'm confused right now   -two conflicting results...

voraciousreader

Mama... Please try not to get too upset right now! We've had other posters question discrepancies in their reports. My suggestion would be to have your specimens read by another pathology lab. There are places, including Johns Hopkins, who will gladly review your specimens. Go on Johns Hopkins' website. They will tell you what needs to be done to get the specimens to them. In addition to a second opinion, I would ask the medical oncologist who is pushing the chemo to have your case presented to the "tumor board". That way, you will have numerous physicians, from special areas reviewing your case.



Remember too, the time from diagnosis to choosing one's protocol is the most stressful. I am confident that you will follow through with getting a proper diagnosis and ultimately come up with a treatment protocol that will be right for you. Good luck!

voraciousreader

Mama...I am thinking now that perhaps the logic behind sending your specimen to Genomics was the following. Perhaps because you were PR+, the physician wanted to CONFIRM that you were ER-. Pathologist can sometimes be mistaken. So sending the specimen to Genomics and finding out you were ER- wasn't such a bad idea. The question now that needs answering if you are truly ER- would be with such a small about of invasive tumor and being ER -, would the risk of chemo outweigh the benefit since you probably would not benefit from endocrine therapy. Again, I would ask your case be presented to a tumor board. And, I don't think there was that much of a discrepancy in the two pathology reports. If your case is reviewed by a tumor board, there usually is a pathologist present, so they might review the specimens as well.

MAMA46

Vora-the purpose of sending my specimen to Genomic lab is for Oncotype DX test -to see if i would benefit for a chemotherapy treatment and then there Genomic result stated that i am ER- not ER+

voraciousreader

Mama...like I said earlier...your initial pathology report might have said you were "weakly" ER +. Your physician might have decided to send your specimens to Genomics to confirm the initial report. So, Genomics came back and said you were ER -. Now... It is very important to get a third reading of your pathology specimens because if you are "weakly" ER + ... you might still benefit from endocrine therapy.

MAMA46

we both had agreed for an ONCOTYPE DX test to see if i would benefit from chemo . You see, in order to be eligible  for an Oncotype Dx test your breast cancer should be: a stage 1, 11 or 111a ( mine is stage 1) , you're ER+ HER2- (which I was -according to my pathology/surgical report) and lymp nodes -NEGATIVE ( I was). Then when my Onco test -result- came back (from Genomic lab) , Genomic stated that my ER is negative, and in order for my recurrence score to apply I have to have an ER+, So that day I got my Onco result I had called Genomic and asked them how accurate was their testing and said 95% accurate-so  I had two conflicting result w/ my ER.

MAMA46

CAN'T WAIT FOR MY 2ND and MAYBE 3RD OPINION???

violet_1

Mama,

Yes...more opinions--2, 3,...even more might be in order here....maybe a few tumor boards also. Vor.'s suggestion to send to John Hopkins is a great idea.

Just try to hang in there-- you'll figure it out and then you'll be able to make informed choices.

I know this must be so frustrating. Wishing you much luck.

voraciousreader

Mama...I think you are misunderstanding what I am saying. If your first pathology report said you were "weakly" positive, then having the Oncotype test done was a good idea. In your situation the test concluded you were NOT ER positive at all. There in lies the descrepency. So, as I said earlier, you need to nail down the pathology situation before making any treatment decision. I can only imagine your frustration. Please keep in mind you do have time on your side. Consider having a tumor board review your case and also ask for another pathology review.

MAMA46

did not say "weakly positive" ER+PR+/HER2-. In general the logic and purpose of sending my specimen to Genomic for ONCOTYPE DX test is to see if i would need chemo or would benefit from chemo -basing a Recurrence score-but would not qualify if you are ER-

voraciousreader

Mama...closely look at your pathology report. Some pathologists will assign a percentage number for how ER positive you are. Other pathologists might assign "+" symbols for how ER positive you are. So, one pathologist might indicate you are "90% ER positive" or they might use the following symbol "ER+++". Both symbols would mean that you are highly ER positive. Now if you were "weakly" positive, the pathology report might read "5 % ER positive" or it might read "ER +" ... Both of those symbols would mean "weakly" positive. Notice in my signature that I am ER positive 90%. That means I am "Strongly" ER positive. So, while your pathology reported you are "ER +" ... Your doctor might have wanted to confirm that you were undoubtedly ER positive. Instead, the Oncotype DX test said you were ER negative. So that explains the possible descrepency.





Now with respect to why doctors do the Oncotype DX test... You are correct. He also wanted to get an Oncotype DX score which would tell you if the benefits of chemo outweigh your risk AND it would tell you your chances of distant recurrence ( metastasis) in 10 years. The Oncotype DX score assumes you are doing endocrine therapy for 5 years.



However, when your specimen, which the doctor at first ASSUMED was ER positive, based on the first pathology report, was sent to Genomics, they couldn't prove a score because they said you are ER negative. So, before you decide what treatment is best... you need more pathological testing to settle the descrepency.

KBeee

I am stage i, but sicne I am 1 mm away from stage 2, they are treating me like stage 2.  I have a Bmx scheduled next week and will be restaged after that.  I do plan to push for chemo since I am 43, premenopausal, have 2 areas of cancer in one breast and have had a previous biopsy on the other breast.  For my own sanity, I need to know I did everything to prevent a recurrance.  My surgical oncologist said chemo will likely be recommended, but the MO is the one who will ultimately make the call.

empowered65

Hi All,

I wanted to share this program I came across that helps breast cancer survivors become more active! It's all online and completely free to us. Hope you find this as useful as I have: http://stepbystepstudy.org

AlaskaAngel

I'm in the generation of women who were encouraged by the endorsement of standard medical practice at the time to use HRT. I never did use it myself.

With the more recent studies that indicate that it was dangerous to us to include the use of synthetic progestin as part of HRT, and now the controversy indicating that NOT using ERT (estrogen-only therapy for replacement) for some groups of women may be more dangerous, I question how this may effect our use of what is called "hormonal therapy" for bc such as tamoxifen or aromatase inhibitors?

Maybe some current feedback about that question from each of our medical providers would be worth sharing here?

AlaskaAngel

AlaskaAngel

P.S. I also am at a loss to understand why, at time of diagnosis when we need to be analyzed so individually for our options before treatment, no effort has been made in our behalf by the medical profession to provide each of us with a thorough individual analysis of our endocrine and metabolic status by some kind of endocrinologist, perhaps one who specializes in cancer treatment. That just seems to me like such a basic minimum requirement for having the best chance of helping us.

voraciousreader

AA... Haven't we had this discussion before? Your question is important and the multi team approach should include endocrinology and genetics. My dream is the same as yours! I look forward to that day in my lifetime. Again, reading Dr. Topol's book, The Creative Destruction of Medicine gives me hope. Since the DH was diagnosed with his rare genetic metabolic disorder, I have seen incremental changes. But I am as frustrated as you are that, at best, the incremental changes are so few and small...

AlaskaAngel

Yes, we have. There is such a lack of organized practical approach on the broadest measures, even for just doing them bit by bit.

Annicemd

As you know AA I understand your frustration, you are of course quite right that, the treatment for BC is targeted rather than individualised and important individual factors are still generally ignored. In the UK endocrinologists become involved when related issues are identified but this does not seem to be the case on your side of the pond.

The " hormone therapy" issue I think is simply semantics as tamoxifen and AIs are estrogen blockers and therefore anti-hormone rather than hormone therapy. Estrogen replacement without progesterone cannot be given in women with a uterus. I have déjà vu... We have certainly discussed this before

Annicemd

Kbee I wish you all the best with your treatment decisions, if chemo is not offered to you then certainly discuss ovarian suppression

AlaskaAngel

annicemd,

I'm pleased to learn that endocrinologists are more integrated into general medical services elsewhere. Upon bc diagnosis, are women individually analyzed there specifically for their endocrine and metabolic condition before recommendations are made for their cancer treatment?

I wonder if Australia is similar in that respect?

A.A.

Annicemd

No because there are not enough endocrinologists to undertake this sort of assessment on a global scale. To do what you suggest would need the western world to train many many more endocrinologists. Most endocrinologists already have their time swallowed up trying to keep tabs on the diabetes and obesity epidemic. Others are purely academic and don't see many patients. Clinical endocrinologists are already full to capacity seeing patients with pituitary, thyroid, adrenal, gonadal diseases and neuro endocrine tumours. Endocrinology is a field that that has grown in demand in the last 20 years and the supply of specialists is inadequate to meet demand. The field of late endocrine effects of cancer therapy is a niche area and requires sub-specialty training which is not widely available. Furthermore there are not enough endocrinology units that provide Late Effects within endocrine job plans and in general there is no funding for this work! in a world where healthcare systems are cracking under stress rationalising and prioritising specialist healht care is an emotive and difficult area!