Anyone Other Stage I Ladies Out There PR Receptor Negative?
Ladies: On my way to SNB Thursday and hoping for clean nodes. Have read in a couple of articles that PR- status -- a relatively small subset of BCs, I think -- confers significantly worse prognosis than does ER+/PR+, regardless of tumor size, node status, etc. In this context, does "prognosis" mean a higher likelihood of recurrence, metastasis, etc.? Disease-free survival, overall survival, etc.?
Have also read that PR- breast tumors are relatively resistant to Tamoxifen and respond better to aromatase inhibitors (but that endocrine therapy in general is less effective for these tumors than for those positive for both estrogen and progesterone). My oncologist, who I have met only once so far and who is highly respected in my Mid-Atlantic city, says tumor will respond to Tamoxifen.
Is anyone knowledgeable about this? I want to know if I should be really concerned about PR- status even if tumor very small, low-grade, and node-negative...in keeping with emerging percpetion that BC is many different, and not one, disease. Would an Oncotype DX test help here?
I even read one study in a British cancer journal saying that some PR- women with early-stage disease, and who are node-negative, might benefit from chemo. Anyone else seen these references?
Comments
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Hi Girl! You ask really great questions, and while I don't have all the answers I'll share what I've learned in my experience.
Typically, PR status is the least important factor of the three receptor statuses. It is part of determining Her2- Luminal status (the other important piece of that is high proliferation, often found through a high Oncotype score or Ki-67). Has your doctor declared your cancer to be Luminal B, or are you basing that thought solely on your PR status? If you are uncertain, I would ask your MO for more information before you begin worrying about DFS and OS (but I totally get your worry!)
My initial dx was Stage 1 Grade 2 ER+PR+ Her2- IDC. SOP was to send tumor off for Oncotype test. My result was a recurrence score of 42, and a change in my PR status to negative. Later testing revealed high ki-67 (50%). My MO declared my cancer to be Luminal B based on two factors: PR negativity and high proliferation (he guessed this from the Oncotype score but the ki-67 test confirmed it).
I was never told that PR- didn't respond well to Tamoxifen. My MO was more concerned with my ER status in that instance. In my case I stopped all Tamoxifen and AIs after 8 months so I don't know that I'm a shining example of PR- success. :-)
Good luck!
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If I were you, I'd request the Oncotype DX for your tumor. But I'm not certain there is enough tissue left to do this. 2mm is quite small. Even though yours was PR-, the size makes it less likely to have spread.
Mine was only 5% Pr+, so effectively considered negative. Also larger, higher grade, and with Onco DX needed chemo. Yet with SNB negative, I'm not that concerned about recurrence.
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Nancy and Doxie: Thanks so much for your replies. Hoping tomorrow's SNB shows clear nodes and, if so, will ask my BS or oncologist to get Oncotype test underway as soon as possible. Hope 2mm is enough tissue. If not, would they base treatment decision on path report from my lumpectomy? It mentions no Ki67 score but says grade I, well differentiated, low mitotic rate, negative for lymphovascular invasion.
Nancy, I'm basing Luminal B assumption solely on PR- status, according to some reading, but maybe this is incorrect in absence of some other factors? Here are two articles discussing prognostic significance of PR-. But as indicated in earlier post, I am not sure what is meant by "significantly poorer prognosis/outcome" (local recurrence risk? Metastasis? Overall survival?) Also don't know if observations cited here would apply to patients with low Oncotype score...assuming not. Maybe I'd better put the Web reading on hold LOL! Would like to get your take on these.
http://www.nature.com/bjc/journal/v110/n3/full/bjc2013756a.html
http://jco.ascopubs.org/content/23/4/931.full (PR- Tamox resistance discussed herein)
John Link's book, "The Breast Cancer Survival Manual," makes point about size you cited above, Doxie, saying that a Luminal B, node-negative cancer as small as mine has less than a 10% risk of spread and that usually chemo wouldn't be indicated. The first oncologist I saw had a terrible bedside manner and I switched to someone else, but she did mention, based on my path report, that I have low risk of spread. This is encouraging. Just wondering based on what I've read about PR- status and relative resistance to endocrine therapy.
Nancy, did you stop endocrine therapy due to side effects?
Thanks again so much, ladies. Had radioactive isotope injection today before SNB tomorrow, and it wasn't bad!
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I don't know your menopausal status, but if you are pre- or peri- meno you could request to have the shot (Luperon sp?) to shut down your ovaries. Then you could go on an aromatase inhibitor.
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Hi. My tumor was 2.6mm ER+ at 82% and PR -. I did not have Onco test - 1. too small to do it 3 times and get accurate result and 2. ER+ Tumors under 5mm NCCN guidelines do not recommend chemo...risk outweighs benefit. I started on tamoxifen but 9 months later my uterus enlarged to 1 centimeter with pre cancer cells and got a 2 cm cysts on ovary. I had a hysterectomy and now take an AI. I have read that AI's work better on women who have PR -. I have been very pleased with my decision. There is a spreadsheet where you can estimate what your onco score would be. Here is the site: http://path.upmc.edu/onlineTools/mageeequations.html
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Doxie and Dancer: Thanks for replies. Am already home from SNB this morning...everything went great. Surgeon said results in less than a week. She told me that Oncotype test not usually done on tumors smaller than 5mm, and that if any cancer found in my lymph nodes, nodes would be radiated rather than getting chemo, probably.
Dancer, have also read that AIs tend to work better for PR- tumors. My oncologist said he would test my blood to see if I am menopausal (I haven't had a cycle in 13 months but had some spotting in June) and probably start me on Tamoxifen. But will ask him about AI due to PR- status. Have read re: bone and joint pain/arthralgia side effects with AIs and fear those...I already have some osteoarthritis and don't want to feel like I'm 90 LOL!
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Hi again...I have been on anastrozole for a year now and the only real side effect has been vaginal drying. My cancer diagnosis brought my husband and I incredibly close - after 25 years of kind of taking me for granted, he got so scared he would lose me that he became the most incredible man. two years later we grow closer every day. So, we enjoy our initmate moments. We discoverd extra virgin coconut oil as a lubricant and we are now on jar number 5 LOL...so, I feel like I am 28 ( actually 55 )....
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Dancer: No joint pain? Yay for you! AND, I have some coconut oil on hand!!!!! It sounds like you and your husband are enjoying a wonderful place in your marriage...So good to hear this. Keep up good work. You'll be my example.
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Dancer: Forgot to thank you for this link; want to calculate. But what if my path report doesn't include a Ki67 score (I don't see it). Also don't see a Nottingham score. And all I know is that ER+ is 95%, and PR is 0. Should I ask my BS or onc about these other variables?
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I am pr- with a high oncodx of 34. I didn't do chemo just hormone therapy. I have 1 year left.
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Grade 1 is your “Nottingham score.” That’s good news. It is the slowest-growing form of tumor--its cells are well-differentiated from surrounding normal tissue.
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Am also PR neg. My MO never mentioned that this has a significant effect on prognosis. I had a bilat MX(no reconstruction), chemo and have been on Arimidex for over 5 years(and plan on continuing for at least 10 years total). Onco score was 28. I decided to be as aggressive as possible from the start. Am doing OK and am almost 6 years out. Definately have side effects from the AI. Putting up with them is preferable (to me) to dealing with a recurrance.
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Hi, I am 11 years out so don't come here often. I asked my oncologist about Tamoxifen being less effective for ER+\PR- tumours. Her response was swift and emphatic. "There has been one study showing that Tamoxifen is not effective, but five studies showing that it is". I admit that was a long time ago now, but it certainly reassured me at the time.
1.8 cm, Grade 3, tumour ER +\PR -
Widespread High grade DCIS in addition to invasive tumour
Mastectomy, EC chemo, 11 years with no recurrence
Sandy
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I tried Tamoxifen, then Aromasin then went back to Tamoxifen. I had really rough SEs and after 8 months I simply quit. My 4-year cancerversary was a couple of days ago and I'm still here, no recurrence, and feeling wonderful!
I'm including a link to another thread here regarding understanding a Luminal B dx. I thought it might help you understand where your particular dx falls. It's likely your cancer isn't Luminal B, but I'm not a doctor so I encourage you to ask your MO their thoughts. Luminal B does have a "worse prognosis" (I always read that but don't fully understand what exactly they mean!!!) but it doesn't mean anything is a certainty (check out the threads on long-term high Oncotype survivors).
Like you. I wanted answers. I needed knowledge to help reassure me. I didn't always like what I read, though, and tended to focus (heavily) in the negative. Without going into specifics (because I don't want to scare others with my unique situation) my cancer was unexpected, fast growing and after testing considered aggressive. High ki-67, high Oncotype, Luminal B, no Tami or AIs - I was sure I was doomed. But being Stage I means we hit it early - that's significantly positive!! And like I said - 4 years later and I'm still here, worrying a little less each day.
I hope you get the answers you need to make the best treatment decisions for you. Good luck!
https://community.breastcancer.org/forum/96/topics/829393?page=1#idx_20 -
Ladies: Thanks to all for your informative, supportive replies...so helpful.
Nancy, I have high fear level -- and tend to focus mostly on the negative now -- due to family members' struggles with BC; my first husband's death of brain tumor at 46; and twin sister's hubby's melanoma dx with unknown primary. Am accustomed to being on the lookout for danger!
Recently took break from BCO because so much focus was heightening anxiety. Went back to thinking about books (I work part time in a library after leaving 25-year career as writer at finance company), cooking (it's fall...time for soup), and two new little step-granddaughters. Not putting head in sand, just trying not to obsess quite so much. My staging and treatment plan have been delayed because excisional biopsy after LCIS dx became lumpectomy without SNB....then trying to decide whether to get genetic test and awaiting results of that before deciding on rads/Tamox vs. mastectomy (BRCA negative but nasty family history). Finally had SNB yesterday, awaiting results, and have appointment with onc 11/30.
Thank you so much for link to Luminal B discussion. While my tumor is PR negative, it is also quite small (2mm), and BS got clean margin. It's low grade (well differentiated; tubules 2-3/nuclei 1/mitoses 1) and negative for LVI, and HER2-. Hoping this path report approximates a low Oncotype score and that I am not, despite PR- neg status, Luminal B. BS told me yesterday that they probably wouldn't do Oncotype for me because tumor too small and wouldn't benefit from chemo, anyway.
Dancer referred me to a calculator that approximates an Oncotype score, in case docs won't do it (see link below), but I don't have all the data to enter required values: no Ki67 (do I need to ask onc for this)? I don't know what ER and PR "H score" (0-300) means...just know my ER is 90-95% (Allred score 7) and PR 0%. I think my Nottingham score is 4 (path report says "Elston grade I," and tubules/nuclei/mitoses figures add up to 4).
http://path.upmc.edu/onlineTools/mageeequations.html
Thanks again for such great help. Am trying to work on anxiety level...this is hard for me, as my hubby's brain tumor was benign by histology and malignant by location (brain stem). It always was lurking there. Brother-in-law is being scanned every three months after having three spots of melanoma removed and primary not found. Whew. I am going to make some soup and go shopping for a new pair of shoes LOL!
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Girl, The K167 score should be part of your pathology, however some labs do not test for it. Check the pathology report from your biopsy/surgery and if it is still unknown, ask your doc.
If you don't have a K167 result, plug in 10% which is a low proliferation score....then do another one with 50%. That will provide you with a range of low and high. My mitotic index was 1 with a K167 of 17%, if that helps you estimate your K167.
The spreadsheet uses a 0-300 score for ER/PR. The best way I know to convert your score is to apply your percentage positivity to the 300 and enter that result. If you are 95% ER+, then the number would be 285. Remember that the % you received is a subjective amount. I was toll I was 100% ER positive, but the Oncotype DX came back as about 90%.
Remember, this is just an estimator. I used it while I was waiting and it underestimated my Oncotype by about 5 points. That's because the Onocotype DX analyzes other genes that are not accounted for in this spreadsheet.
Good luck with your treatment, Girl. I am 3 years out from my diagnosis and 2 years out from active treatment and I still look for information about this disease. Knowledge is power and someone has to educate my doc. LOL
MsP
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MsP: Thanks for this great info! With path report data and your suggestions, did a calculation, and got three different risk estimates with the various equations: 17.8, 18.05, and 21.2. Am I reading the explanation correctly that Equation #1 accounts for the most variables? I know this is just an estimate.
I noticed that, with other factors constant, my estimate remained similar even when I entered a tumor size five times as big as my 2 mm lesion. Doesn't this suggest that variables other than quite small size -- such as PR status -- are more significant to tumor's recurrence risk/responsiveness to chemo?
Read below that Oncotype score includes assumption of endocrine therapy use and MammaPrint doesn't. Also that being in Oncotype intermediate group can leave patients and their docs unsure of the best treatment route to take, while MammaPrint classifies tumor as either as low risk or high. Are both of these correct?
http://knowyourbreastcancer.com/the-latest-what-to...
I wonder what folks do when their number is on the cusp of low and intermediate, or what factors would lead onc to recommend chemo to someone with a lower score within intermediate range. Also wonder if it's "better" to have a low(er) score within the intermediate group than a higher one, but read above that it isn't. Have seen conflicting info on this.
The initial research/intense anxiety phase of the BC process is hard, isn't it? I guess I'd better make sure I'm node-neg before doing all these calcs LOL! Thanks again, MsP.
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My PR score was 1%, so considered negative. My tumor was 1.8cm (18mm) and luminal B, with Oncotype of 23, so my MO recommended chemo. I'm almost halfway through that now. I also have 2 rare gene mutations that raise my risk of BC to >45%~! Therefore, when chemo is finished I'll be having a BMX. Hopefully that will mean no radiation, but at this point its still on the table.
My MO is pretty aggressive about my care and I am not unhappy with that. The first MO I had basically patted me on the head, told me not to worry, wrote out a prescription for Arimidex, and told me to come back in 3 months. Huh! I don't think so! You dumb doctor, you are soooo fired! I like my new MO much better.
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Poodles: Sounds like you are doing well with treatment, and I'm glad you love your onc. I will meet mine for only second time on 11/30. So eager to get treatment underway! What defined your cancer as luminal B?
Have read a couple of times now that luminal B cancers (and I'm not even sure mine is in that category) smaller than 5mm normally don't get chemo, but endocrine therapy, because risk of spread is less than 10 percent. Have read, too, that PR- tumors don't tend to respond as well as Tamoxifen as to AI, but not sure this is the case. I want to do everything I can to banish the BC!
Are you a poodle lover? I have a 15-month-old standard -- a black and white parti -- who is my baby! So glad to have him with me during this ordeal. He's adorable.
Will look forward to updates as you move through treatment and get your BMX. Sorry about gene mutation. (I just got my multi-gene panel test back, and am BRCA negative). Sending hugs.
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Girl, mammaprint has either a high or low score, no intermediate like oncodx. many women with intermediate onco scores do the mamma print, I didn't because I didn't feel comfortable to wait and my husband and two grown children were in favor of Chemo. That was a big deal to me. Ultimately it is my decision, but their input was very valued.
I don't remember which of the models was the most accurate. As it turned out for me, iall three models underestimated my score.
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Girl, I'm trying to think why she decided it was luminal B. I think it was the size of the tumor (1.8cm) and the moderate aggressiveness, plus PR-. Can't remember exactly right now.
I do love poodles! I had a royal standard for 11 years--he was enormous at 80-lbs. He could lay his head on my dining room table. And what a smart dog! I just loved him to pieces and was soooo sad when he died. Now I have a little Bichon-Miniature Poodle mix. He's about 13-lbs and 7 years old. Dumb as a box of hammers, but we love him. I had thought I would want another standard, but after really searching my heart I realized that I might not be able to handle such a big dog 10 years down the road (I have mod-severe arthritis in my hands, knees, and feet.) So we rescued our little Tiki-bird from a high kill shelter about 2 years ago.
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girl53- did you get your genetic results back yet? Yes, I'm curious and brca2+. I am also luminal B, oncoscore 39. Nottingham 8/9, with only tubular scoring 2/3. My ki67 is 60%. ER 90%, PR5%. My MO told me I was luminal B. Here is the conundrum...IHC was high for ER+, but barely in the positive range on the Oncoscore (middle of the range), and the lower ER, the higher the oncoscore. PR was more in agreement with Oncoscore, basically negative. While luminal B not as good as Luminal A, my MO said be thankful not triple negative. Ok, well one can always compare themselves to somebody worse off, but not sure I would be "thankful" for having less of a chance of recurrence, but still having one! 4 years out. Had a heavy heavy regime of chemo plus some extra for BRCA. 2mm is fantastic- how did you find so soon
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