Single Hormone Receptor Positive -> ER+/PR-/HER2-
Comments
-
That is interesting about the alternating six month mammograms and MRIs. I too have very dense breast tissue. I went to an NCI Cancer too for consultations; they are only recommending annual 3d mammograms for me. I think I will ask about my local doctor about it
In regards to the Anastrozole, I do have hot flashes and insomnia. I also have recently developed more back pain. I have always had problems with my lower back but recently it has become worse. My local general doctor is suggesting physical therapy. She is open to doing more scans on me but last PET was all clear in June. I may go in for a back X-ray and go from there.
The side effects are manageable and I feel thankful to be on Anestrozole. Since I had a grade 3 Tumor I had neoadjuvant chemo. My tumor actually grew on chemo. I was initially diagnosed as triple negative so naturally I was very concerned when I realized my tumor was not responding to chemo. Basically chemo is all they have for TNBC, there are no targeted therapies. So when my final pathology came back from surgery, indicating I was ER positive, PR negative I felt relieved. I refuse to complain about side effects from anestrozol.
0 -
I am one of those people who refuses to complain but not because of my cancer diagnosis I have always been that way. I'd rather ignore it than see a doctor. But 2 years into anastrozole I couldn't get out of bed without extreme pain. The pain built up over the 2 years and I regulary exercised 1hr aerobic everyday. My oncologist was mad at me for not telling him till it got to an extreme. Well I switched to exemestane the joint pain eased but I got severe dry eye worried about losing my vision. Don't poo poo the side effects it isn't just annoying it can be dangerous. But then again many take these drugs with no concerning effects others don't.
0 -
I asked if there was a difference between the three AI’s and was told that, based on recent studies, there wasn’t a difference on effectiveness but that the SE’s could differ among the three. My wife was initially prescribed letrozole but apparently not for a specific reason (or none that I recall).
Meow13, did you also try letrozole, or did your MO think the same side effects you were having with anastrozole would occur with letrozole? I ask because I am hoping that anastrozole and exemestane are both options to try in case my wife has trouble with the letrozole.
Lightlee, have you had side effects from the Prolia injections? The dentist just cleared my wife for it, so I suspect she will have her first injection in October.
0 -
I have had no side effects that I can specifically attribute to Prolia. Since necrosis of the jaw can occur from Prolia my local oncologist contacted my dentist to make certain I had a thorough oral exam two months prior to starting treatment. I currently schedule my dental cleanings with at least a month window. For me, the potential benefits of Prolia outweigh the risks since I have osteopenia and my cancer was Grade 3 cancer which did not respond to chemo
0 -
No my oncologist said I could try tamoxifen but everything I read suggests it wouldn't be as effective for er+pr-. He said that I could just stop all hormone therapy. That was 3 years ago snd I still am NED.
I still have tinnitus but my new ENT sees the problem unfortunately the solution involving minor surgery would result in hearing loss. So I am living with it.
0 -
Meow,
What grade and stage was your cancer? Also do you know your percent of ER expression
0 -
I had 2 tumors, one ilc grade 2(6 on Nottingham scale) and one idc grade 1 (5 on Nottingham scale) both were 1cm and separate multicentric. So I was stage 1, grade 2. My er was 95% pr was 0%. My oncodx score was 34. Both tumors had mitotic scores of 1.
0 -
An update on my posting earlier this year regarding my Pr negative concerns. My path results were Er 8/8, Pgr 0/8, HER2- (FISH). My Onco Dx score came back 26 although my hormone receptor results differed somewhat from the original: Er 10.8 (86.4%), Pgr 4.6 (46%), HER2- (9/13 where less than 10 is negative).
I did my research and was also worried about the Pgr negative result. Although the latest Tailor X hadn't come out when I began chemo on February 2nd 2018, reading on here, and digesting the scientific evidence, I was pretty determined to plead for chemo. My oncologist told me I was 'probably' Luminal B1 (HER2- type of Luminal
and chemo is what she would do in my shoes.I had FEC T which is fairly common here in the UK. It wasn't too bad (apart from some lingering peripheral neuropathy).
I had 20 rounds of rads 2 weeks after completing chemo, beginning letrozole simultaneously. I also have 6 monthly biphosphonate to help prevent bone spread.
I will always worry: mainly about the Pgr negativity; also questioning did I have the strongest chemo (I believe it was known as 3rd generation), and whether or not my cancer will respond to letrozole.
We don't have scans in the UK on the NHS unless the oncologist has cause for concern. It's pretty much a 'wait and see' game.
I am following avidly. Thank you to all the people posting. I meet people with breast cancer all the time, but none Pgr negative. You are giving me much needed hope. I thought it was time I raised my head above the parapet again and said hello!
0 -
hi SueRobbo I'm in the UK too the sunny North. These luminal types don't get mentioned here so much do they. I had aggressive Grade 3 Er6 Pr 4 so had full works of treatment but the slightly lower scores worry me. Can I ask if you are now 46 % Pr is that still seen as negative many thanks xxx
0 -
Good morning - I’ve been following but not active lately (occupied with getting on with Life) but today is my first mammogram since diagnosis (April this year), surgery, radiation. (Also seeing my RO and MO - RO is a checkup the MO is for some joint pain) I’ve only been on letrozole for 3-1/2 months so it’s early in the game. Although I don’t think about cancer daily - preferring to move on - today I am reminded of course that my diagnosis of IDC and being Single Receptor carry extra risks.
So I’m asking for a round of fingers crossed and happy thoughts today. Love and health to all of you.0 -
PatsyKB
Sending good thoughts your way.
0 -
Hello SueRobbo, I am too am curious. Why are you considered PR negative if your PR is 46%
0 -
Patsy, your have a grade 1 which is not as aggressive. That is good news! I was grade 3, ER only 60%, and had no response to chemo. Hope the anestrozole works.
0 -
Hi. I was diagnosed 2/7/18 with BC after an annual mammogram. No history, no symptoms, 52 yo. Lumpectomy biopsy results show ER -, PR 4%, HER-. Drs. decided to treat as triple negative with chemo and radiation. Tumor was grade 3. I did 4 A/C and 12 taxol, and now doing 21 radiation treatments. Dr. is suggesting hormone therapy after radiation. My concern is if I have ER - why would I need hormones ( no estrogen)? Any thoughts, comments? I do not truly have " triple negative", but I am curious if anyone else has the same type of bc, and done hormone therapy, and if so, which one? Thanks.
0 -
ki850bl - I just returned from an appointment with my MO at which we made the decision to not do hormone therapy. I think the balance of evidence is that there is little benefit and it still carries risk. Did you have an Oncotype done by any chance? My Oncotype came back as triple neg even though I was very faintly staining on IHC...
0 -
I think SueRobbo's score of 4.6 would indicate PR- as, according to Oncotype, <5.5 is considered negative for PR.
ki850, curious why doc would recommend anti-hormone when you are ER- and essentially PR- as well. AIs are awful. If you don't have to take them, I say don't!
To PatsyKB (and all of us!), good health, fingers crossed, and happy thoughts to you too!
0 -
morning all,
Ki850, I agree. Definitely question the risk of AIs given your percentages.
Hey there miss patsy!! I hope you are doing well and sending good vibes.
Although I was grade 1 my ki67 was a bit high. Always confused me a bit as it seems most of the time high ki67 and high grade go together. If anyone has any thoughts on that let me know! How can you have a lower grade but higher proliferation? I also somewhere read ki67 picks up other normal proliferation so maybe that's why it's not always as reliable. Who knows.
My PR on oncotype was 5.4 with 5.5 being positive. I consider myself pr negative even though staining was positive..but only 3%. I guess I choose to believe it's on a continuum and hope to get some benefit from taking the AI. It means there are less receptors there than I'd like but they are still there so I will hold out hope.
I hope everyone is feeling well. It's nice to know we have this group that understands each other!
0 -
Thanks for the good thoughts, DebAL, lmurphy, et al. Here's the update on my routine mammogram...not routine after all, wouldn't you know it?
I'll preface this with "It is very likely just due to healing or radiation and will prove to be nothing." Also, I am so glad my primary care physician and I agreed that I needed to switch to a breast center earlier this year (they did my biopsy in April) because they are so thorough and they don't just send you home, only to yank you back for additional views a week or a few days later. Furthermore, I am deeply grateful that my RO, my breast imaging center and my MO are all in the same building and communicate well with each other (they are not in the same practices though) - it makes life so much simpler. We live 2 hours away from where they all are (Phoenix), so scheduling everyone on the same day helps me a lot.
My mammogram required additional magnified views which were done right then; followed by a visit with the doctor on call who would explain what was revealed. As it happened, it was the same kick-ass doctor who had done my April biopsy, so it was happy-reunion time. The news was that I have a cluster - a galaxy as I think of it - of new calcifications which are deeper in the breast than where the tumor had been, but they are in the general "neighborhood." So, being new and, as my RO put it, because of "guilt by association," a biopsy is called for.
Fortunately, I was able to get in for my stereotactic needle biopsy in just a week (Oct 4, a Thursday) - and it is just one day before a previously planned trip to Phoenix so we added a day onto our stay there and will go down for the biopsy, then use the extra Phoenix day for errands.
All the docs agree that the calcifications could be in response to my late May SAVI Brachytherapy radiation, or could be a result of healing in general. They could be harmless little calcifications. Or they could be new cancer cells or DCIS... But I'm not counting on anything good or bad; I'm just going forward with my life and I'll worry when and if there's something to worry about.
I will say that my immediate reaction (as in April with the IDC news) was, and I quote, "Well, shit."
So it goes...
ONWARD!
0 -
Patsy, good luck to you.
0 -
Patsy, well that sucks but as you say, onward. Hang in there. Glad you'll get your biopsy quickly.
0 -
Thank you!!0 -
Hey Patsy, long time no ‘talk’
just throwing my 2 cents in....first, I’m sorry you’re going thru the ‘well shit’ debacle again...I had the same experience...no fun whatsoever! I was sent for imaging (US & MRI) around the 3-4 month post-surgery point. They found calcifications which in the end turned out to simply be from healing. The imaging was ordered by my BS, and after visiting my MO, she declared ‘what?!?! No imaging should have been scheduled for 6 months post surgery!”.....because of exactly what they found. So I basically spent a few wasted weeks & biopsy in a flap about the new findings. Hang in, I’m thinking (and hoping) you’ll duplicate my results...positive vibes your way! 0 -
Been reading more on our plight. It seems that the absence of pr is not really well understood 2 different possibilities arise. One where er receptors are present but not actually feeding off estrogen and progesterone not being produced. This one behaving more like triple negative. Although the studies have shown with AI drugs er+ pr- the tumors have responded and die off. The numbers of er+ pr- are so much lower, most are er+ pr+.
I like to see more research into this, I personally don't believe chemo is the solution for my particular case slowest growing ilc and idc with high er and no pr. But I am not completely convinced I fall into the case where AI drugs are enough. So far I am 7 years out NED but my concern is the slow growing nature of my cancer might not show its head until later down the road.
0 -
Hey Meow: Would love to see any links to those new papers you might have access to. Here is one I found, abstract only. Wrote author for full paper.
0 -
Did you see this one?
It suggests not all er+pr- are the same.
http://clincancerres.aacrjournals.org/content/12/3...
In the summary I almost feel like herceptin may have been considered for me I came out negative in fish test but was equivocal before that.
0 -
I think ER+/PR- tumors are very different from each other. For example, look at your low grade tumor and my high grade. I've always suspected that a non-HER growth factor was feeding my tumor and suppressing PR synthesis. Your grade could be due to low circulating estrogen levels preventing PR synthesis; you would respond well to AIs. If a non-E growth factor was feeding my tumor, then AIs wouldn't work well with me. Individuals with high HER2 tend to have higher Oncotype. Your HER was low to unequivocal. Perhaps your residual E was stimulating tumor markers that Oncotype measures but were not sufficient to stimulate PR. We can speculate forever. Have you hypothesized what happened in your situation.
0 -
I sure would like to know more. I'm sure you would too.
0 -
Happy to report that my doc called this morning with the results of yesterday’s biopsy and it was good news. Calicifications benign (the result of healing) so all is well. I have a checkup with my surgeon next month (routine) and a checkup with my MO (routine plus my 6 month Prolia shot) in December. Then off the hook until March when it’ll be time for my annual MRI.
Between now and December I want to learn more about the whole ER+/PR- thing and I’d love to press my MO for what he knows. I’m not sure that all MOs really take the single receptor aspect into consideration when treating us. I’ll stay tuned here. Tis is such a great source of information.
Onward!
0 -
Great news, Patsy!
0 -
great news patsy!. I was away from the boards for a couple weeks and glad I found you. Please share anything that you find out about our single receptor status. Onward is right!
0
