Jun 12, 2018 05:03PM Siciliana wrote:
I am ER 99%, PR 10% with 5% KI67, low mitotic rate and one node positive (8 mm. macromet). Would I be luminal A or B?
Posted on: Sep 17, 2017 12:28PM
Anyone else in this same boat? Would love input or sharing your experience. Feeling a little alone in this boat!
Posts 121 - 150 (368 total)
Jun 12, 2018 05:03PM Siciliana wrote:
I am ER 99%, PR 10% with 5% KI67, low mitotic rate and one node positive (8 mm. macromet). Would I be luminal A or B?
Jun 12, 2018 07:37PM - edited Jun 12, 2018 07:40PM by Meow13
Yes. At the time of diagnosis I didn't understand the difference between tamoxifen and AI drugs. I did not do the recommended chemo, my oncodx score was 34, I was put on AI drugs and was told to do this becsuse I was post menopausal. Well after much research I found out cancers er+ and pr - on AI drugs have equal chance of being effective as tamoxifen is for er+ and pr+ cancers. Tamoxifen works by preventing cancer cells from using the body's estrogen and AI drugs stop the body's production of estrogen.
So the oncodx test recurrence score was based on treatment with tamoxifen, kind of apples and oranges. In both my ILC like cancer tumors one ILC and one IDC with lobular features, the mitotic score (rate of cell division) was a 1, lowest category of growth. ILC and low grade cancer generally don't respond as well to chemo so I said no chemo.
Here is the old study about the effectiveness of anastrozole
This one is dated 2004, there is another one dated 2014 and one 2017 basically with the same finding.
Jun 12, 2018 07:49PM Meow13 wrote:
Siciliana, I live in Renton and see a Seattle oncologist. Swedish doesn't specify, or atleast they didn't in 2011, between luminal A and B, the classification of higher risk hormone cancer is based on your pr status. You are still considered maybe higher risk since your pr level is lower but you have 10% which is so much better than my 0%. The real concern is the 8mm macro met in lymph node. Are you post menopausal? Also be careful with tamoxifen it has a risk of uterine cancer. They should be checking the thickness if you uterine lining. The risk is low but present.
Jun 12, 2018 08:18PM - edited Jun 12, 2018 08:22PM by Hope99
how pr+ helps to stop growing grade 3 cancer cells? it's not become low grade after mastectomy, still 3, not 2 or 1. so how it become good sign? I appreciate your replay.
about me, I had one positive node, 3 mm, still the doctor not tell me about my results. is that bad or still early-cancer? I'm confused
Jun 12, 2018 08:31PM Siciliana wrote:
Meow13, yes, I am post menopausal. Due to borderline osteoporosis/osteopenia, my onc thought tamoxifen would be better, at least for now since it tends to build bone. Yes, I have spent some time worrying about that node.
Jun 12, 2018 08:48PM moth wrote:
Hope - tumor between 2.5cm and 3 cm and one positive node 3 mm would be recorded as T2N1M0 in the TNM (tumor, nodes, metastases) system.
That is Stage 2B https://www.mskcc.org/cancer-care/types/breast/dia...
Progesterone doesn't change the grade of the tumor cells. The grade of the tumor is how fast and aggressively it's reproducing.
Jun 12, 2018 10:09PM - edited Jun 12, 2018 10:17PM by Meow13
Here is the link
It gives an explanation of how they think pr helps. Grade 3 still had fast dividing cells that is true but adding progesterone with tamoxifen may be the treatment of the future helping change how the dna is being changed in the cells. They find with the progesterone recepters it slows the growth over time putting the brakes on. When you have the biopsy or whole tumor evaluated in the lab the grade 3 is what is happening at the moment the tumor is removed.
So yes cancer characteristics can change over time. I think that is one of the things that makes it hard to treat. It mutates so yes the cancer can recur with say a change in grade.
Jun 13, 2018 10:53PM - edited Jun 13, 2018 11:03PM by PatsyKB
meow13, egads007, DebAL et al - just an update: I finally decided NOT to do chemo and to start in on Letrozole right away (yesterday was Day 1 of, at minimum, 1826 days!).
I was going to see a local MO for her read on things; and I was going to talk to my pap but neither is available until next week and I didn't want to delay. Also, I realized that neither is going to give me any more definitive an opinion than my own MO did. So ULTIMATELY it was my decision. So now, after days of wrestling with this decision making process (my OncotypeDX score is 24), I'm feeling at peace with my decision. I figure we move on from here and deal with whatever comes.
And thanks, DebAL, for the foods for breast cancer suggestion - what we put into our bodies is SO important. I use a couple of excellent cancer-survivor/treatment/prevention cookbooks: The Cancer Fighting Kitchen (Rebecca Katz - she has a great blog, too) and Cooking Through Cancer Treatment to Recovery (Lisa Price and Susan Gins). Also Simply Vegan by Dustin Harder and I follow and get recipes (primarily plant-based and delicious!) from Minimalist Baker and The Full Helping. I like to try new recipes and get bored making the same thing over and over.
Jun 13, 2018 10:57PM Meow13 wrote:
Patsy, good luck to you. Every year that goes by with no cancer you can feel more relieved. My advice is tell doctor if you have painful joints even though it may be a known side effect you can get something for it. Exercise may help a little, it didn't seem to help me though. I think my 3.5 miles a day helped my bones.
Jun 13, 2018 11:07PM Egads007 wrote:
Patsy, congrats on making ‘the decision’, and a tough one at that...Hobson’s choice. I’m happy for you and wish you all the best for an NED future. Onward indeed, with no looking back
Jun 14, 2018 01:44PM DebAL wrote:
patsy, that's great. You are right, it's ultimately your decision. And it's important we don't look back. It's finally nice to not have to make one decision after another. Maybe we all can all just make a decision on which way turn our beach chairs lol Now those decisions I like! It's also nice to have a sense of normalcy again. Ok except for these rock hard tissue expanders I'm lugging around waiting for my exchange! Oh, and being bald. It's just nice go to work, spend time with family and friends then realize it's been many many hours that I had forgotten about BC with lots of laughter in between. I think that comes when we have peace with our decisions. Good for you and onward!!
Jun 16, 2018 11:11PM - edited Jun 16, 2018 11:22PM by Newstart
Jun 16, 2018 11:40PM Newstart wrote:
Checking in as a rather new member of the "Single Hormone Receptor Positive Group". I was diagnosed with IDC in December, 2017 and had a partial mastectomy (lumpectomy) and IORT in February of this year. The 1.4 cm tumor was ER+ (over 90%), PR- and HER2 -. There was also DCIS in the same breast. I am concerned about reports that I have read suggesting that ER+/PR-/HER2- can be likened to triple negative breast cancer: that is, often more aggressive; harder to treat; and poorer long-term prognosis than ER+/PR+! My MO oncologist said "not exactly," but suggested genomic testing, due to the PR-, My Oncotype DX score was an intermediate 24, so I opted to forego chemotherapy. However, I had a very difficult time coming to peace with whether or not to begin hormone therapy - the side effects scared me; BUT, not as much as recurrence! I finally began anastrozole about 6 weeks ago. I am combining that with exercise, a largely plant-based diet, supplements under the guidance of a naturopathic doctor, juicing, essential oils etc. - hoping to reduce my chance of distant recurrence further than the projected 15% of metastasis over the next 10 years (with Tamoxifen - don't really know how this would be different with the AI I am on - perhaps slightly better). Sorry for the false start a few minutes ago which resulted in a deleted post. I've spent many hours here in the community over the past several months; but, It was a big step to jump on and speak up tonight! I look forward to becoming acquainted with others in the group. Good health and God's blessings to all of you!
Jun 17, 2018 01:13AM ruthbru wrote:
Welcome, Newstart! Being that estrogen positive is a VERY GOOD reason to take an anti-hormonal and you are very smart to have started on it. Between your early stage diagnosis, taking the pill, and following a healthy lifestyle; you really, truly should be fine!
Jun 17, 2018 04:11AM Meow13 wrote:
Hi Newstart, I did anastrozole for almost 2 years and had to stop. Then I did exemestane for almost 2 more years. The side effects seemed to be cumulative. I think I aged quite a bit but actually came out ok. I have lingering achiness but nothing that interferes with my life. I had an oncodx of 34 very similar stats as you have. I am 7 years out. Would I take AI drugs again? I think so I think it helped keep me cancer free.
Jun 17, 2018 07:49AM jojo2373 wrote:
It is interesting how similar and yet how different we are all with similar dx's. The mitotic rate has always interested me as i see some of you are very low with a strong ER+ and low or no PR+. Mine was 35 and Nottingham was 9 (not sure they even do a Nottingham anymore).
Jun 17, 2018 11:08AM TomMorrow wrote:
My wife was recently diagnosed with a 6mm IDC and just recently completed a lumpectomy. On her biopsy report, her ER and PR both came back at 97% (Her2 -). However, on the surgical pathology report, her ER went to 90% but her PR went to 5%. We are meeting with the MO tomorrow to go over the pathology report and put together the treatment plan. I have a lot of questions planned for what a low/negative PR means (and why there was such a drastic decrease in the PR percentage from biopsy to surgical reports). All of her other stats seem to point to a more nonaggressive tumor; no lymph node involvement, Grade 1, small size (6mm), mitotic score of 1, and 12% ki67. We don't have the oncodx score yet. I have read all of the reports on PR- (or low PR) and I'm not sure what to make of them. I'll report back and let you know what our MO says.
John Hopkins has an "ask the expert" forum on their website. I've gone through a lot of the questions in the various categories looking for anything discussing low/- PR. Most times, the response from the expert focuses on having a high ER, seemingly downplaying the low or negative PR. A few responses acknowledge that hormone therapy usually works best when ER/PR are both high. I have a pending question in and I am anxiously awaiting the response.
Jun 17, 2018 01:33PM Newstart wrote:
I would bring up the discrepancy to my MO and discuss any questions you may have with him or her. I responded to your private message a few minutes ago. Your wife is blessed to have you on board with her as she faces these decisions! Please let us know what you may learn and what you decide.
Jun 17, 2018 01:54PM PatsyKB wrote:
TomMorrow, it sure seems like we, the ER+/PR-/HER2- bunch, are an under-studied and minimally understood 15% group. I may be wrong, but I'm guessing that my own numbers (0% progesterone receptor with 99% estrogen) were what contributed to my OncotypeDX score of 24. I've asked about the role of the single-receptor diagnosis but my MO treats it as he would ER+/PR+ because it's that estrogen that is key.
My MO was very definite in his opinion that because I am post-menopausal, an aromatase inhibitor (in my case letrozole) would be effective and I am counting on that. I opted against chemo (I was at the high end of the 11-25 intermediate group studied by the TAILORx study).
Jun 17, 2018 01:57PM PatsyKB wrote:
Newstart, don't hesitate - start on whatever your MO's recommended hormone therapy is, learn all you can about possible side effects (you may or may not experience them), and be prepared and proactive. Like you I had an OncotypeDX score of 24 and once I made my decision, I took my first pill (letrozole) that day and never looked back, knowing I'm doing everything I can to prevent new cancer cells and also understanding that there are no guarantees.
Good luck - and keep coming back here for support/commisseration/sharing/answers.
Jun 17, 2018 02:28PM TomMorrow wrote:
PatsyKB. My wife is premenopausal so I assume she will receive Tamoxifen. However, I am going to ask about the studies showing that AIs may work better with negative PR. I would assume an AI would be just as effective when postmenopausal, but this is also a question on my list for tomorrow.
Jun 17, 2018 04:38PM - edited Jun 17, 2018 04:42PM by Meow13
An AI drug is given to post menopausal patients. Talk to the MO about the possibility of getting your wife into menopause because AI drugs are proving to level the outcomes for ER+ and PR- patients almost twice as effective as tamoxifen. They first starting seeing this before 2004 and just saw another study dated 2017 supporting this claim. The problem is er+pr- is a much smaller group so there is less data.
Thr studies I read specially look at anastrozole but your wife maybe precribed letrozole at first. There are options talk to the doctor. Er+Pr- might be worth the benefit to go AI treatment.
Jun 18, 2018 08:56PM - edited Jun 18, 2018 09:19PM by TomMorrow
We had the appointment with the MO today and I wish I had information to share that could be useful for others here (but I don't unfortunately). Our MO isn't concerned about the low PR percentage (5%). This is in part because there is a positive amount (i.e., its not negative), the core biopsy percentage was very high (97%), ER is very high, and my wife's individual tumor characteristics all point to a nonaggressive (slow growing) cancer. He ordered the Onco test so now we wait two weeks to see what the score is.
I did ask about the differences between AI's and Tamoxifen. He is going to test my wife to see if she is in menopause and we will decide on AI's or Tamoxifen after the radiation treatments are completed. I go back and forth whether it makes sense to have a second opinion on the low PR. I am thinking that I should wait for the Onco test to come back, since it should (I believe) give us a PR score, which I can then use to compare to the core biopsy result (97%) v. surgical pathology result (5%).
I thought I had most of the uncertainties with her cancer diagnosis researched, until the low PR score came back which really threw me off. I am a big worrier, so reading the studies on negative PR gave me pause. But, in hindsight, in looking over the reports a second time, I am not certain one should take the conclusions, which are based on tumors with various characteristics, including ones with aggressive features, and base one's individual situation against the "conclusions" reached in the studies. Some of those studies themselves also identify limitations within the study and state that additional research is necessary to reach a standard of care. It's good to read the studies so one can ask informed questions with the MO about how those studies inform the individual assessment, but try not to be overtaken by the conclusions and think they automatically apply to your situation. I thought this way for a week and it really took me to a dark place, which really wasn't necessary or productive.
I wish everyone the best on your treatment and recovery, and look forward to following this thread to see what other MO's say about low/negative PR.
Jun 18, 2018 10:11PM - edited Jun 18, 2018 10:13PM by Meow13
TomMorrow, what is the Nottingham score or grade. Grade 3 is more of a concern I'll see if I can find that article on the absence of progesterone receptors. But your wife is atleast 5% so it might not. Progestrone is thought to help keep estrogen cancers in check.
Jun 19, 2018 05:06PM PatsyKB wrote:
TomMorrow, keep us posted. It sounds like your wife's MO, like mine, doesn't really factor in the whole single receptor thing. I may be wrong, but I would imagine that my OncotypeDX score of 24 is, in part, due to my very high ER+99% and my totally absent PR-0%. As Meow13 says, the progesterone helps temper the estrogen.
Waiting for that OncotypeDX score seems endless, but in the meanwhile, take a look at this website which helped me when looking at my results. http://www.oncotypeiq.com/en-US/breast-cancer/patients-and-caregivers/stage-i-iiia-invasive/oncotype-dx-results-what-to-expect
For me, anyway, the AI is the way to go because of the ER+ and because I'm post-menopausal.
Wishing you and your wife well.
Jun 19, 2018 07:35PM TomMorrow wrote:
Thanks for the link.
If you can believe it, my question to the Ask the Expert site on the Johns Hopkins breast cancer forum and another question also asking about low PR (3%) was posted today. Unfortunately, responses to both questions were similar, in that hormone therapy is still viable and if you are PR positive (so even 1%), the treatment is the same. It doesn’t really answer the question I asked, so nothing of interest to link to.
Jun 19, 2018 07:41PM PatsyKB wrote:
I'm impressed that you "made the cut" and had your question answered! Maybe I'll send a few of my head-scratchers to them.
Jun 19, 2018 09:21PM TomMorrow wrote:
I think they answer every question submitted within seven days. I was hoping the response would have been more robust, but I guess I shouldn’t expect much from a free service.
I am considering using their remote secondary opinion service. I can have all of the lab results submitted, along with three specific questions, and one of their MO’s will review the results and our MO’s treatment plan and give us a concurring (or not) written report on what they recommend. They will also answer my specific questions, where I would ask for their view on the low PR and how that plays into the over prognoses and recommended hormone therapy (Tamoxifen v. AI).
Has anyone used a secondary opinion service before? I’m sure there are others, but I’ve looked at Johns Hopkins and the Cleveland Clinic.