Low ER+ and PR+ treating as triple negative

MattD77

My wife was just diagnosed Invasive Ductal, Grade 3, Showing Neuroendocrine features. ER+ 7% PR+ 2%, Her2 Negative, Ki67 100%.

The oncologist wants to treat this as triple negative. She said that it is a grey area.

Has anyone else had a similar diagnosis and been treated for triple negative? Any info at all would be helpful.

Meow13

In this case, I can see where treating it triple negative makes sense, also it is grade 3. Chemotherapy can really knock down this kind of cancer. Things can be done to lessen the side effects related to this cancer treatment route. Drugs for nausea, benedryl for allegeric reactions icing for hands and feet also cold capping tor saving your hair. If I ever find myself requiring chemo I will be proactive in reducing side effects.

jessie123

I have a friend who was estrogen 25% progesteron 0 and her2 negative. Her doctor was going to treat it as triple negative, but she got a second opinion at M.D. Anderson and they said it did not need to be treated that way.

kathymd

Hi. I had a very similar profile as your wife and I was treated as a triple negative with chemotherapy (TC) after a bilateral mastectomy. It's very important to do the chemotherapy for low ER and for triple negatives. It's very effective. Research wearing cold mittens and slippers to avoid neuropathy — it worked for me! I also did cold caps but results weren't great. I am 7 weeks out from chemotherapy and hanging in there. I have been treated at Mayo Clinic. All my best to your wife.

moth

Hi, glad you made it to this forum! I replied on your other thread but just wanted to wave hi. There are a handful of us in this boat here

I think almost all if not all of us did chemo. Where we diverged is whether to do tamoxifen/AI or not. I'm not but I think there are some very low ER peeps who are doing hormonal treatments.

My oncologist said this is an area for which there just isn't enough data to know what the best move is. I guess WE are the data that will guide treatments in future years...

Abbidoodle

I'm probably not in the right forum, but am desperate right now. I am being treated as triple negative, receiving chemo after having a stage 1, 1cm lumpectomy done in April, no nodes, clear margins. Grade 3, Oncotype 41, Ki67 high so I've started chemo 6/6/19. Shortly after my lumpectomy, that breast was very bruised, red, and swollen, which I figured was from surgery. By the time I saw my oncologist a month later, over half of that breast was red, swollen and nipple and areola very hard. Oncologist treated me with 2 different antibiotics with no improvement. During that time, a lymph node down my arm bulged out and I felt one under my arm that is swollen. Oncologist sent me back to surgeon for a biopsy concerned i might now have IBC, but surgeon took one look, examined it and immediately said it wasn't IBC, that it was lymphangitis. So oncologist said ok and I have begun chemo. The redness is still there, nodes are still swollen, hardness in breast the same and I have periods of itching. Due to the steroids in the chemo, the swelling is down. I've had no other tests or scans and I feel that IF there's a chance of having IBC, I need to know. I'll be having my 2nd treatment on 6/20/19. Can anyone give me any advice on whether I should pursue the answers, or just trust that they're right. BTW, with all my research on lymphangitis, I arm convinced my symptoms are definitely not that, and it may be one of those odd things where I may never know, but it's not IBC. Also, none of my symptoms have progressed, just not any better. Please please help/advise me on any action or non action I should be doing. I'm desperate! Thank you.

Moderators

Abbidoodle, we are so sorry to hear about what you are going through. Our best advice would be to get another professional, medical opinion. Unfortunately we really can't say. It sounds like a second (or third) expert opinion would be the only option to ease your concerns. We wish we could offer more.

Thinking of you!

MattD77

Thank you for all of the great responses and advice!

Abbidoodle

Hi Matt. My Oncologist explained our to me this way. My Er+ was only 7%, PR negative, Her2 negative. They consider this triple negative because of the very small amount of estrogen receptor. But, on the small chance it is estrogen driven I will be receiving estrogen therapy when I finish my chemo and radiation. In other words, it couldn't hurt! I hope this helps.

MattD77

I don't think the onco is planning on hormonal therapy. Her suggestion from my understanding is just triple negative treatment which I understand to be heavy chemo and no hormone therapy. She is also suggesting a lumpectomy after the tumor shrinks. I guess that also takes a preventive hysterectomy off the table.

My wife seems to be okay with DX. In fact she wants the DX. The onco says that a DX has similar probability of return as a lumpectomy, that a lumpectomy is faster, and has a better recovery time. I guess her thinking is why do a DX if it does not changing the statistics.

Is this a new way of thinking? Does anyone have input on this logic?

From my thinking and what little bit I know so far it seems that if this is not hormone driven then why go after intense hormone treatments.

Both oncos that we saw said that post surgery will be the time to evaluate a lumpectomy vs a DX. So for now I guess it just means waiting. That also may mean a lumpectomy first.

Meow13

If she does a mastectomy she may be able to avoid radiation. I did that and a DIEP reconstruction.

moth

Matt, I had a lumpectomy because my surgeon recommended it as his first choice. It is a much less invasive surgery, much lower risk of complications and infections etc. Lumpectomy + rads in my case had the same survival outcomes as a mastectomy.

And for the hormones, my oncology team met a whole bunch of times and conference called with other experts...their bottom line was that hormone therapy has known negative side effects & they could not recommend it given that there was little indication of a benefit. They did essentially leave it up to me, saying that if I felt strongly about taking it they woudl honor it but they could not make any recommendation eiter way. Abbidoodle: hormone therapy *can* definitely hurt. For ex, apart from a bunch of adverse effects which many women report as negatively impacting their day to day lives, tamoxifen raises the risk of endometrial cancer. Normally these risks are outweighed by the benefit gained from holding breast cancer at bay, but if the benefit is not clear due to low ER+ levels, the balance of risk/benefit starts shifting.

ruthbru

I was 25% ER positive & negative for the rest. I had four rounds of AC, and did 5 years of Arimidex. That was awhile ago though so recommendations may have changed. I sort of felt that I had covered all the bases with that plan. (Also had a lumpectomy & rads, which was exactly the right decision for me.)

Abbidoodle

Moth: I think the best thing for me right now is to complete all the chemo, do the radiation and them make a decision concerning hormone therapy. I, too believe with a 7% ER driven that it would probably be of little benefit. Thank you for your input and at least this is not a decision I need to make now.

MattD77

Moth, thank you that is very helpful.