Single Hormone Receptor Positive -> ER+/PR-/HER2-
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Hey Patsy, I hope you are feeling ok after your treatment! My last chemo is Monday then I'm on to arimidex. I plan on spending time on the Doing well on AI thread. Exercise exercise exercise is a recurring theme there. It's been really helpful so far and I will hope for the best. Also, I'm terrible about pasting links and not sure how reliable it is but foodsforbreastcancer.com has info on foods that enhance effectiveness of AI's, foods to avoid, and foods that help with side effects. Also foods for Er+,PR-. A ton of great info on the thread about decreasing recurrence through diet and exercise. I'm sure you hate to go too deep into research until you know your plan. Once again, waiting ugh. I definitely wanted to look into the food changes that may help with decreasing recurrence. Keep us posted as your plan is revealed.
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I was under the impression that the stronger the hormone positive you are the better hormone therapy would work. Not so sure about that it probably was something I concluded as makes sense.
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Me too PatsyKB,
I have/had 2 tumors. One was Er+ Pr- and HER - I am finding my drs are being so vague and seem to not know what to do with me because of this different type of cancer
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Hi, everyone! I am in this boat and wanted to let you know what my medical team has suggested. I did chemo in spite of a tiny tumor and no nodal involvement, largely because of the increased aggressiveness of the tumor biology. I'm on tamoxifen, even though I pushed for an AI given what I've read on the internet. My onc was worried about the side effects of starting AIs at 42 without better evidence that AIs significantly decrease recurrence risk, so here I am. Some docs seem to think the PR negativity is a really big deal, others much less so.
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hi okkate, we have similar Dx. I know we have "met" on a previous thread. May I ask what your oncotype was (27 for me) or did u have the mammoprint? Hoping I can get by with minimal side effects on the Arimidex, time will tell. Might as well ask real quick...how is your hair coming back from the TC? Hope you are doing well on the tamoxifen. I think some docs skirt around the PR negativity unless you flat out ask about it. Mine did say my 3% PR and ki 67 of 24% is what made me a luminal b subtype. We are a unique group that's for sure but hopefully we can all do as well as meow!
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Just checking back in. I posted when the the thread was first started last year. I'm glad to see that it has become active again. Six years for me now!
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Meow - I'm learning more and more here at BCO, and fully intend on having that exact discussion with my MO in December. Makes a heck of a lot of sense to me as well. At 15% ER+ (1 % shy of TN according to my previous MO), weight training for the last three years, eating very clean etc...I have to question it if it's worth continuing.
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Hi, everyone.
I just stumbled on this thread and I'm very intrigued. Here's my story:
Diagnosed in October, 2017. ER+, PR equivocal, HER2-. Ki67 less than 10%. I started a clinical trial that used neoadjuvant anastrozole + fulvestrant (a shot normally used for Stage 4 patients - stops the cancer cells from absorbing the estrogen.) The tumors responded to the neoadjuvant treatment, but when I had surgery in March, they found cancer in a bunch of lymph nodes and also found other more aggressive cancer cells in my tumors. (More aggressive because the ki67 values were 15-25%. A couple of the biopsied cells showed PR+ at around 5%. The extent of lymph node involvement suggested that the lymph node cancer cells didn't respond to the neoadjuvant treatment, and warranted chemo.
Now I'm doing AC+T. Then I'll do radiation.
No one has mentioned to me the ramifications of being progesterone negative. I just met with my MO yesterday - before I read all this. I will certainly follow up with him at the end of the month.
I appreciate reading your experiences.
Does it matter if it is Luminal A not Luminal B? I'm pretty sure my original dx was Luminal A.
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Hi Linda, I hope you are doing well with chemo. Another example of how frustrating this disease is. How your tumors responded but lymph nodes did not. I honestly don't know if luminal a, b is just a stage 1 subtype or not. I'm sure others will know. Being luminal a or b doesn't usually affect treatment plan but statistics ..if you are in to that..show that luminal b may not respond to treatment quite as well as a ( but still good) if you consider that ramifications. I think that goes along with what meow mentioned that the higher the hormone positivity the better the better the response. My path report had me at 3% PR which is considered positive ( anything over 1%) as expected oncotype brought me down to negative on that scale so I consider myself pr negative although barely ( 5.5 is positive and I was 5.3) i hope you are getting by with minimal side effects.
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I think where there is a total absence of pr receptors, ss in my case, it is not well understood. I read a very interesting article about how the presence of pr helps regulate the growth of er positive cancer. The absence can suggest an aggressive unregulated tumor growth. It looks like in at least 2 articles dated 2004 and 2014 anastrozole is considerably more effective than tamoxifen in er+, pr- tumors. I think the issue is the data there are not enough of us to come out with strong statistics. In this information age, I expect we will see more conclusive data in the next few years.
From reading other posts, I find there are many oncologists that are not update with treatment and outcomes. What was recommended for treatment 5 years ago is not always what is recommended today.
My oncologist is a regular fixure at the San Antonio conferences, he was telling me the 5 years 10 years of hormone therapy has flipped back and forth. It is still at 5 years, however this applies to recurrence prevention from early stage bc.
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I'm progesterone negative also. It seems that this is a very heterogeneous group. As far as I can tell negative progesterone or low progesterone is often associated with a more aggressive tumor and greater risk in the clinical outcome. However, there seems to be a small group of progesterone negative tumors that are grade 1 with a low ki57 and high estrogen positivity. This group seems not to have a medical consensus, perhaps because there are very few of us.
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It concerns me that, evidently many oncologists (according to what I've read above) don't know a lot about ER+/PR- and hence treat it as they would ER+/PR+. I want to bring the subject up when I see my MO next week - but what if he brushes aside the extra concerns I have about recurrence/survival rate of ER+/PR- cancer patients?
I am guessing that because my tumor was tiny he may be reluctant to suggest chemo even if the OncotypeDX test comes back with a high number. What if it's middling?
And now I realize I am doing just what my DH always cautions against: I'm getting ahead of my self because we do not know yet what the test will show or what the MO will suggest.
Still, I stew and wonder and worry and project and research and, yes, get ahead of myself.
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Hi Patsy, I assume there is not quite enough evidence just yet to warrant a new treatment plan for "us". Maybe because there are so few of us. I try hard to not focus too much on recurrence rates because I can't really change it.(treatment choices are done, working on a few lifestyle changes) It sounds like you are under the care of a great team of doctors! I can't imagine them not taking into account your score. If that was the case they wouldn't have ordered it since you knew it was tiny from the start. You will be left with choices if you fall middle or high and it will be another piece to your puzzle. You could ask about the mammaprint if you fall in the middle. The oncotype score helped me with my chemo decision but it was my choice. Again, meow chose not with a 34 and is doing fine. There is someone on bco that had a score of 9 and recurrence 18 months later. We just never know and that's the hard part about dealing with this disease. I just can't let it be in the forefront of my life until it needs to be. Please try not to worry and stew too much. You do have to research some in order to get the most out of your appointment. Nat blue, my tumor was a grade 1, low mitotic score etc but ki67 24% which doesn't seem to line up. I sure can't help with the medical consensus here!
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Hi Ladies...
I'm finishing up Tamoxifen in 100 days. I paused for 9 months because I had a hip replaced.....I had my 5 year anniversary in October and I am cancer free...I do have to have another polyp or something removed from the side of the uterus in August, praying it's nothing like the last one I had removed.....I had a high onco score and chose to only take Tamoxifen and so far so good...Hopefully we all stay healthy and Cancer Free....
Loral
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I’m sure you’ve all seen this in the news this morning but just in case you missed it, the results of the TAILORx study are out now. Just in time for some of us who have not yet determined with our MOs what treatment(s) will be appropriate for us.
Here’s the Washington Post piece about it (but you’ll find articles all over the internet): https://www.washingtonpost.com/national/health-science/most-women-with-common-type-of-early-stage-breast-cancer-can-skip-chemo/2018/06/03/8a666228-5f63-11e8-9ee3-49d6d4814c4c_story.html?utm_term=.cdc08bb1cb68
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Loral, hi haven't heard from you in a while. So happy you are almost done with tamoxifen.
I did AI treatment, you and I had similar high oncodx scores and declined chemo. I stopped AI drugs must be 2 years now, still NED on year 7. Hope you do well on getting polyp removed.
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Hi Meow congrats on year 7...I remembered we were similar with our diagnosis, I saw your name and wanted to add to the discussion...I'll let you know how the polyp removal goes...not looking forward to it. Take care.
Loral
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Good Morning everyone, nice to see this thread near the top! I actually read every post from the very beginning of the thread and it sure is true, no 2 tumors are alike. Its just encouraging to see everyone doing well within our "small" subtype group!! This is just a good a place as any but if anyone has links, information, insight to how PR negativity plays into recurrence please share. My understanding is that statistically luminal b BC tends to recur earlier than say luminal a subtype? I just like knowing where I fall ....not devoting an unhealthy amount of worry. I know I have seen info on previous threads in the past..(I want to say meow, moth, egads etc are names I recall when I first joined) size, grade, lymph node status etc all play a part as well as hormone receptor status but I never fully understood how PR negativity plays a part..maybe the reason is unknown and isn't out there...it just "is" ? Is that why it's considered more aggressive? It's funny how we go through different stages. I guess now that chemo is over and I'm entering the world of AI's next week recurrence is at the forefront. Congrats Loral!! I hope others that have been away for awhile pop in to let us know how they are doing. Enjoy your Sunday everyone!
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There is a lot of variation within our sub type. Some of us are slightly ER+ with only 3% or 5% while others are strongly ER+. Does the amount of ER+ affect treatment plans and potential outcome? Seems like there are a lot of unknowns with our sub type.
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Great questions ladies, yes we do need some answers...Anyone????
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Also is this sub type considered more aggressive than triple negative or about the same? Does a higher ER+ (say 90%) make it more aggressive than a lower ER+ ( for example 3%) ?
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You know I don't think medical researchers really know the answers to those questions. I wish more outcomes would be tracked not just people involved in studies. We need to to create large databases so some of the information can be answered such as does the percentage hormone positive correspond porportionally with effectiveness of tamoxifen or AI drugs. I think it seems like a logical conclusion but we need to have the data to back the intuitive conclusion. And definitely we want to know more about strongly er tumors with absence of progesterone. Her2 positive cancers seemed to be getting alot of attention.
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There is basic research on high ER+ women benefiting more from hormone suppressants than low PR+ women. Low PR+ women are considered to be less than 10% PR+. The most researchers tell low PR+ women is that there is "some" benefit to anti hormone therapy, but how much, or if it is significant enough to warrant the side effects of the drug isn't/can't be specified. My own MO feels the benefit for low ER+ women is undefined. In other words, real risk to reward isn't known. Yes a large data base is needed. Her2 is getting a lot of attention. It's wonderful that they've made progress in that area.
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I was under the impression that there is benefit from the hormone therapy as long as you test positive, how much i guess we don't know? Sometimes the oncotype scores bring those percentages down but I never really knew which one "counted" more ( path or oncotype) I was 100% ER on path report but 8.5 I think on oncotype scale which is technically less. There was someone that oncotype brought them down very close to triple negative and they were going to question the plan to start AI's. I picked up my arimidex from the pharmacy, took it out of the package, and I'm just looking at it for now lol but will start later this week. Focusing most of my energy on maintaining exercise routine and making a few needed dietary changes. In the end we just don't know. Agree, larger data bases definitely needed. It is encouraging to hear how well others in our subtype are doing. It seems all treatment options are represented and many women are doing well.
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I think focusing on the positives is a good strategy. I love going to the gym and working out. If nothing else it helps me mentally.
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Hello all - checking in with my story:
Dx 2012 ER+ 100% PR - HER2 - grade 3 2 nodes and non PCR after neoadjuvant chemo. I did 2 years tamoxifen and tried AI's but stopped due to terrible migraines. Coming up on 6 years out this July though!
All i have heard and read is the lack of PR with a strongly ER+ typically produces a grade 3 or luminal b tumor. I was both.
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wonderful news jojo. I believe I would have chosen the same treatment that you did in your case. Mine was er 95% pr negative but grade 1 & 2, two tumors IDC and ILC each one cm no nodes. I did as much of the AIs as I could and ditched the chemo 7 years NED.
Chemo was the recommended treatment but with no nodes and mitotic scores of 1, I chose not to do it. Wonder if the AI meds did any good.
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hi jojo2373,
what about high er, high pr, more than 80% with grade 3, 70% ki67 means? my friend ask me about this case. is that good or bad sign?
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When the tumor has both high levels of er and pr receptors studies in Adelaide Australia are showing the presence of progesterone receptors really helps slow the tumor growth potential keeping the grade 3, fast growing cells, in check. There are ongoing studies to see if adding progesterone treatment with tamoxifen might further slow the growth process. So your friend with 80% positive for both er and pr is good news for someone with grade 3. As far as ki 67 percentages my oncologist finds that info not helpful others still put credence in it.
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Meow, so what is your understanding of the ER % in the absence of PR? Starting arimidex tomorrow. Not sure if AIs are created equal or not. I'll switch brands first b4 switching to a new drug just to cover all bases if I have side effects. Ready to do what i need to and hoping for managable side effects. JoJo, my strong ER and low PR made me luminal b too. I was grade 1, mitotic rate 1 . Then 24% ki 67 which measures proliferation..always wondered how that went along with a lower grade in my case. Not terribly high but still considered high and played a part in my oncotype score. 6 years in July, cause for celebration, congrats! Glad you are feeling well!
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