IDC: ER+, PR-, HER2-
So, now that I've met with my surgeon about my 4/9/18 diagnosis, I learned from her that the PR-negative finding is, in her words, not so good. Not bad, mind you, but not as good as it would be if it were positive. It sounds like my combo (ER+, PR-, HER2-) is less common than, say, ER+, PR+, HER2- (or HER2+).
Does anyone have any wisdom/insight from their experience? What does my pathology tell me about the treatment possibilities? Trying to piece together all the information and boy oh boy is it a project (as you all well know).
I have learned SO much in two and a half weeks and I know there's more to come. I am fortunate, I will say, in that I have excellent docs so far, excellent oncologist referrals for post surgery, and every reason to believe that my lumpectomy and sentinel node biopsy on 5/7/18 will be relatively uneventful. Fingers crossed, but prepared for anything. I also have two patient navigators who have not failed me yet in terms of providing information, suggestions, referrals, and answers as well as comfort.
Anyway - I look to all of you for insight into my question. Thank you!
Comments
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Hi
My oncotype reported me at er+, pr- and her2-... my lumpectomy pathology had me at er+, pr+ and her2-.. onc says that pathology from surgery trumps all... so you will certainly know more after your surgery. The oncotype helps in decisions around chemo....
I am almost 10 years out-- all great--you are at the hardest part as you test and wait and test and wait....... once you have a plan it will feel sooooo much better....
good luck
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Patsy, we "met" in another forum lol. I'm terrible in navigating where I have been on these threads. I am the one that suggested you inquire about your PR negativity. My pathology is similar and our situation is not as common is why I wanted you to get all the info you could. I got the answer that pathology does not trump oncotype ..i wish it did...was told it's just more information for the puzzle. I was 100%ER+, 3%PR +(In real life this meant PR neg) and HER2 neg. Because you asked, I will offer my insight but as you are finding we all have different journeys. My oncotype came back ER+,PR neg ( not surprising) HER2 neg. I believe this PR negativity is what raised my oncotype score to a 27, intermediate to almost high for recurrence. This was why, FOR ME, i'm doing chemo for a "stupid"(anger coming out) 1cm, grade 1, no lymph node tumor! It's baffling to me. I have learned it is more about tumor biology than anything else!! I am doing chemo in hopes if a few cells are out there that chemo will zap them. I chose bmx due to dense breasts and did not want to stress about mammo not picking up other masses in either breast. So here I sit, bald, halfway thru chemo but confident I did what was best for me even though it was caught "early" I wish you the best and you will find your way as more information surfaces.
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DebAL - like you, I'm awful at remembering where I "saw" someone last in the threads, but I do remember your advice to ask about the PR negativity in my visit to my surgeon. I did and, as you read above, she was vague. Maybe it's because she - pragmatic as she is - felt that at that moment, in our first surgery consult, it was time to focus on surgery and she knew that more drilling down into treatment options and information would come later. I was grateful that she didn't totally gloss over it - she did indicate that PR- is not so good and that it tempers the picture painted by what we know about ER and HER2.
I found another thread about ER+ PR- HER2- in the discussions and now find myself concerned (probably prematurely) about treatment options, recurrence, etc.
I'm 99%ER+, 0%PR-, HER2neg. It sounds like it indicates cause for concern, and so complicates what felt previously like a relatively "sunny" picture of a small (6mm), grade 1, slow-growing, cancer.
So now, how much should I worry? SHOULD I worry? I always say I don't worry needlessly but of course that's a lie - I can obsess with the best of them. Should I pester my patient navigator to give me more information I can pore over in the week and a half between now and my surgery on May 7?
On another note - I am holding off from "general population" notification of my diagnosis. Keeping it to close close friends and family. It's not that it's a secret forever, it's just complicated. And now, because everyone wants to go to the "happy place" it's further complicated. I don't want to have to go into the "don't be so quick to assume it's all fine...yes it's early/small/etc. but the biology and oncological picture might be more complicated and this isn't going to be any picnic" stuff with everyone.
Sheesh. Feel free to private message me, DebAL or anyone who has IDC ER+ PR- HER2- experience or wisdom.
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Patsy, I was also told PR neg is 'not so good'. I have had a few more months to let this all sink in. I have come to realize that it is what it is and there is no option for me to be handed a new path report that is ER/PR+. However, even though my skies aren't "sunny" I choose mostly sunny. I would love to tell u not to worry but you will and I'm sorry. However, my worry has becomes less as I got thru surgery and getting thru chemo. I guess it's because I feels like I'm doing something. Still no guarantees we all know that. I made choices that I felt will let me move on best with my "new" normal and less worry. You will have more info when u get the results of lumpectomy and SNB. I would think they will send out for oncotype and that is another tool that can provide you more info for recurrence chances. I understand your comment about obsessing. I have thankfully got passed that or when i do its for just a brief period. Waiting is tough. Continue to educate yourself and ask questions. This site is such a great support for all of us.
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I think another valuable piece of info would be your oncotype graphs-- so with chemo, what is the calculated % of recurrence? Again, there were some discrepancies in my oncotype vs surgical pathology-- but I think in the end it was like 7-9% chance of distant recurrence--I thought those were pretty good odds!!!!
good luck--- it will soon be in the rearview mirror.....
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Having surgery today (lumpectomy and sentinel node biopsy) so I hope to know a lot more in a few days. Thank you DebAL and momand2kids for your input and support and sharing.
Re: oncotype score, can I insist on having the oncotypedx done? Or do I wait for someone - surgeon? oncologist? - to decide? From what I’ve read “my” cancer seems to qualify for oncotype testing.
I want to be an assertive and informed patient but obviously I’m not a doctor (and I don’t play one on tv 🤣)
Hoping all goes smoothly today and we can move on to tomorrow..
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Patsy - sending good vibes for a smooth surgery! I wish you all the best today!
My tumour was diagnosed as triple neg on biopsy and ER+ 15% after surgery...I just squeaked by. My MO seemed happier for the final path as there was follow up treatment with tamoxifen and ALs. Previous to that she called it aggressive....scary. I think it’s all relative in the end...how big it is, lymph node involvement etc.. hang in for the final path before settling it in your mind and never EVER assume the worst outcome.You’re going to beat this no matter what! Big hugs! Let us know how it goes.
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Thinking of you today Patsy!
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DebAL, Egads007 - Thanks so much for the good wishes! Reporting in, now that I'm home: All went well and I was happy with my surgeon, the surgery center and everyone involved. The surgeon removed the tumor & margins plus 2 sentinel nodes. Pathology results: either later this week or I'll get them at my follow up appointment next Tuesday. Since we live 2 hours from Phoenix, where I had my surgery, we stayed overnight the night before and the night after surgery to spare me an uncomfortable and probably pukey ride home (I was pretty loopy and nauseous). Instead, we were in one of our favorite upscale hotels (fortunate to be able to do this). Had a light supper (I usually never do room service but this time, oh yes!) & good night's sleep. No pain or discomfort until today and so far it's manageable so I'm leaving the pain meds closed up for now. I may never use them.
I lined up my follow up appointment PLUS "meet & greet appts" with a radiation oncologist and medical oncologist, both in Phoenix, and both of whom work with my surgeon and come highly recommended (they both specialize in breast oncology). I'm weighing my options - having my oncologists based in Phoenix or up here where choices are very limited; mostly we want quality and great communication. We'll sort out the logistics.
So, step one is done. Onward!
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I was er 95% and less than 1% pr, her2-. My oncodx was 34, I chose to take AI drugs and no chemo. I am 7 years cancer free.
You need to look at the complete picture, oncodx is not a trump all. I was so jealous of my coworker's oncodx score of 4. We were dx within 6 months of each other. She had one lobular tumor 1 cm. I had 1 lobular 1cm and 1 ductal 1 cm. She did lumpectomy with and offered savi radiation. Not me mastectomy was my option. Less than a couple months after her treatment they found metastasis in her hip. Her cancer now in her bones I was shocked. I felt really sorry for her, I am not proud that I was jealous because she was getting better numbers and prognosis than I was. You never know.
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Patsy - well done! So glad that it went well and by all appearances you're pretty chipper to boot! You have quite the decision to make regarding treatment... that 2 hour drive both ways ain't no picnic, especially when you get to the daily rad treatments. Still, I could see why you'd choose Phoenix with more resources. As you said the details will be sorted. For the next few days just be kind to yourself and let us know how you're feeling! Cheers...you did it!
Edited to say: get yourself a good date book, or good phoneapp, you’ll need it as you’ll find juggling the appointments over the next while becomes a full time job. Write notes to yourself in it along with the schedule,nice or funny observations, I love reading back over mine to see how I’ve changed and grown stronger.
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Thanks for sharing your experience, Meow13 - I will definitely keep Big Picture in mind and will look to my doctors for guidance.
Egads007 - you're absolutely right about the 2 hour drive each way. The way we look at it, we'll make the decision based upon the ultimate radiation treatment calendar that is recommended. A few weeks - or a week, which understand is sometimes what's called for - is manageable in terms of staying in Phoenix (not driving back and forth). But if it's several weeks, daily treatments? Definitely I'll opt for up here in my town instead.
Keeping an ongoing yellow-pad of notes going, a half-assed blog that's kind of going nowhere, a journal (something I NEVER EVER DO) given to me by a friend and which is actually proving to be a good thing for me, plus my iCalendar and 2 paper calendars. Multitasking builds braincells, right?
Happy to say that I've taken exactly ONE of the pain pills prescribed and am done with that; no pain today (little yesterday); feeling great and running errands, taking a long walk, and getting things done in advance of whatever comes next.
Oh, and a good book? I've got a PILE of them, as I expect I'll be doing a lot of reading in weeks/months to come.
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Quick report - my surgeon called this afternoon with the results of my lumpectomy: 5mm tumor, clean margins, all the nodes were clean. So with that good new, now I can breathe again. Next up, visits with the radiation oncologist and medical oncologist in Phoenix the day I meet with my surgeon. Hoping to get on with treatment as soon as possible. My surgeon said I may be a candidate for brachytherapy (the 5 day course) but we'll see what the oncologist says. Stay tuned.
Out of my blue tube top wrapper and into a bra now and feeling more like me.
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sounds good Patsy
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Congratulations on the clear margins and clear lymph nodes, Patsy! That’s so fantastic
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that’s great news Kathy! It is so nice to be able to be getting back to normal again and feeling like yourself. 🙂
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Patsy- will def stay tuned! Congrats on the clear margins, always a good thing and always a relief. I meant to comment on your ink pic....loved it. Made me want to get out a sharpie and write ‘No more C’ with an arrow pointing down to both breasts. Onwards and upwards, you got this
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Great news Patsy!! I know you are relieved to have that behind you. As you say "onward!" I love it. #3 chemo for me this Monday- 75% done by Monday afternoon is the way I look at it. Meow, I agree about looking at the big picture when it comes to oncotype or any other piece of this puzzle, I just need to remind myself that from time to time. I hope everyone has a good weekend!
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Patsy, Glad to hear your test results. If you think about brachytherapy, there are several threads on BCO with more info, depending on the type. Use the search icon to search brachytherapy, SAVI, or whatever options your center has.
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thanks to all of you. As some of you know (yeah, I see you in other discussions), I’m currently in Phoenix 2 hrs from home in order to hav my radiation - SAVI brachytherapy. As of today, 3 day so of twice daily radiation done. After the holiday weekend (we’ll stay on here) I’ll have 2 more treatment days.
June 7 I have a checkup with my RO and a meeting with my MO who will discuss with me the oncotype results as well as his recommendations for drug therapy. So...stay tuned. nsights and advice welcome!
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Here's a question for everyone:
Okay, so I'm done with surgery. I'm done with radiation. I have made the decision re: chemo (NO chemo). And now I am taking my AI (Letrozole) which I will be on for the next 5-10 years.
At what point can I say "I HAD breast cancer?"
Do I still HAVE it (keeping in mind the sneaky invasive thing)?
Or can I frame this in my mind, my heart, my conversation, as something I HAD?
Opinions? Discussion? I realize it's semantics, but sometimes words mean a great deal.
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I find that it helps me manage my thoughts and feelings to keep it all in the past tense. Could it recur? It could, but it hasnt. Therefore i HAD cancer and now i DON'T.
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I had my surgery on May9. I complete radiation on June 23 and attend my survivorship class and side effects of Famara on the 31st of July. I was told that in 6 mos i will have a PET scan and if it's clear I get to say I am Cured.
What do others say? I'd like to know as well.
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I think the date I had the surgery, I became cancer free. The cancer was removed entirely, with good margins and I had negative nodes and no indications of any spread.
Everything after is to prevent recurrence but I think I've been cancer free since Dec 12, 2018.
I don't hear oncologists wanting to use cure very much. They seem to be sticking with "no evidence of disease" aka NED. Recurrence risk continues for years after surgery & treatment so I think it's kind of odd to say cured when it might just be lurking and waiting to recur. -
I think viewing breast cancer in the rear view mirror is psychologically the way to go. Yes, recurrence can always happen but right now, I HAD breast cancer. And the medication is to keep it from coming back. Seems like a succinct answer to friends who ask.
Tess1962 - and others - is a PET scan standard for follow up screening? My team hasn’t mentioned it but I can bring it up. What is the advantage? (It’s one imaging screening I’ve never had.)
Onward!
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Patsy - I said “I HAD cancer” the minute my treatments were done. I agree that from a psych point it’s healthier...at least for me. The only other alternative would be to concentrate on the negative possibilities. While we might have to be more medically proactive & vigilant than the average joe moving forward, we sure as shootin’ don’t have have to let it define who we are on a daily basis. That is probably why I divulge my history to so few peeps in my life. I find that ‘outsiders’ tend to view me differently once they find out...view with a vaugue whiff of pity. I hate that because no matter how well meaning folks are I am so very over it all and just enjoy being who I was before, during and after....just plain old me living life. No time to waste!
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I was not offered the Oncotype Test. My BS glossed over it at one point and said I didn’t qualify.
I was too busy deciding on mastectomy for my DCIS and my 3mm IDC that was removed during the initial core needle biopsy was an afterthought. Until I met my oncologist who starts giving me odds of distant recurrence (too high for my liking, I expected them to be very low for my “teeny tiny old lady cancer”.
So now I’m asking why didn’t I have the Oncotype Test? Would chemo lower my odds? I have 4 young kids I need to raise
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Lilac - I think you could still have the IDC from the core biopsy sent for Oncotyping. Here are the criteria. They specifically say they can do it on a core biopsy. https://www.oncotypeiq.com/en-US/breast-cancer/hea...
The DCIS test is as I understand it for women who have a lumpectomy and it only gives a local recurrence score & helps guide radiation decisions. But with your IDC component, you could have the Oncotype DX for idc done. Have you met with an oncologist, and not just a breast surgeon?
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Hello ladies, I have been looking for some ER+ PR- Her2- groups.
I was first diagnosed 15 1/2 years ago with TNBC node negative stage 1b. I had a lumpectomy, AC for 4 rounds, and radiation. I am BRCA negative. I have since have pre-cancer in my endometrium, and remaining fallopian tube as well as 1 pre-cancerous pulp in my colon.
Last month I was diagnosed with ER+PR-Her2- and now with an Onco score of 28. I am stage 2 grade 2 node negative. My MO and surgeon want to start 4 rounds of TC. Heading for a 2nd option tomorrow at City of Hope.
I have read that the prognosis is about the same as TNBC. In doing research has anyone found that hormone therepy is beneficial for ER+PR-HEr2-?
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rrshannon, I was er 95% positive, pr nrgative, her2 negative I had 2 1cm tumors ilc and idc grade 2 &1, oncodx 34. I did 4 years AI drugs and did not do chemo that was recommended. AI drugs work much better than tamoxifen for us. I will post one link.
I am 7 years NED.
http://www.cancernetwork.com/articles/anastrozole-...
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