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Single Hormone Receptor Positive -> ER+/PR-/HER2-

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  • PatsyKB
    PatsyKB Member Posts: 211
    edited May 2018
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    Quick update - my meetings went very well; awesome team of oncologists & my surgeon. Lymphedema under my arm drained (but refilling again of course). Radiation starts next week as I am an ideal candidate for brachytherapy using the SAVI catheter. We will stay in Phoenix for 8 nights, including the Memorial Day Weekend because driving home for the weekend is a pain. Hence husband said that we should stay somewhere nice...so we are. We have a 2nd meeting with medical oncologist the week after radiation ends (so June 5) and he'll do the big reveal - definitely an oral aromatase inhibitor. He ordered the oncotype test and we'll have results then. IF deemed appropriate, then we'll discuss chemo. Otherwise, just the oral medication.

    We are feeling good about things at this point. And are taking off for a previously planned trip to Grand Canyon for 3 days before heading south for radiation. Because why not.

  • debal
    debal Member Posts: 600
    edited May 2018
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    Great news Patsy! I hope the lymphedema gets better. I will be starting AI's the same time as you so we can compare notes ! Lol Enjoy the Grand Canyon!

  • ruthbru
    ruthbru Member Posts: 46,930
    edited May 2018
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    Good!!!

  • StubbornDog
    StubbornDog Member Posts: 20
    edited May 2018
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    Back in December, bravepoint asked me if with my 2-5% ER+ whether my oncologist would put me on tamoxifen or aromatase inhibitors. Well, I finally have an answer, which is Yes. She went back and forth and something made her decide it was a good idea. So I just finished my chemo (AC 4 does/8 weeks followed by T 12 weeks) and she wrote a prescription for me for tamoxifen. The plan is to do 2 years on tamoxifen followed by 3 years on aromatase inhibitors (I am not getting radiation.)

  • moth
    moth Member Posts: 3,293
    edited May 2018
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    That's Interesting, StubbornDog. We're still trying to decide here but last time my MO said he is leaning against tamoxifen even thought the biopsy was 10% ER+, because the Oncotype put me as triple neg.

  • StubbornDog
    StubbornDog Member Posts: 20
    edited May 2018
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    Interesting they did an Oncotype on you, moth. With a grade 3 tumor and other cell characteristics, I was not a candidate for Cncotype. I thought the point of Oncotype was go or no-go on chemotherapy and in my case it was an obvious go. (My biopsy was 10% ER+ but final pathology was 2-5%)

  • meow13
    meow13 Member Posts: 1,363
    edited May 2018
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    My number for er was high at 95%, but I had absolute absence of any progesterone receptors. At the time I just assumed hormone therapy would work. But tamoxifen seems to be only about 50% as effective for people like me recent studies confirm AI drugs just as effective as for er+ pr+ as it is for me. But remembering there are only a fraction of bc cases that are er+ and pr-. Even fewer er- and pr +. So far I am 7 years NED and almost 3 years off AI drugs. Fingers crossed.

  • meow13
    meow13 Member Posts: 1,363
    edited May 2018
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    Sorry seem to be repeating earlier posts. I forgot I posted before.

  • StubbornDog
    StubbornDog Member Posts: 20
    edited May 2018
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    No worries, Meow13. That is useful information for me.

  • bravepoint
    bravepoint Member Posts: 232
    edited May 2018
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    Stubborndog - Thanks for the update. I have questioned from the start whether there is much benefit from an AI with my 3% Er +. I have some annoying symptoms which my MO assured me are not related to Exemestane but I discovered they are after going off it for just 5 days. Annoying symptoms gone.... I went back on it though as I couldn't face a recurrence and the second guessing. Hope all goes well with the Tamoxifen!

  • PatsyKB
    PatsyKB Member Posts: 211
    edited May 2018
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    Just checking in with all of you to see what’s new...and to review questions I know I’ll be asking my MO in a couple of weeks when we meet next

    I’m currently halfway through SAVI Brachytherapy -3 days of twice daily radiation down, 2 to go. The next 3 days (Memorial Day weekend) are days off for us, with no treatment. (We’re staying in Phoenix for the entire 8 days because we live 2 hrs away. Weekend=mini vacation.). I’m trying to keep my mind focused on CURRENT treatment and no not drifting off to Medical Oncology which won’t even be decided until June 7. Still, it can’t hurt for me to prepare by dropping in on this conversation.

    Meow13, you and I have such similar hormone receptors, I’m particularly appreciative of your insight. I don’t know why my MO has in mind, but I’ll find out soon enough. Trying not to worry. MO did order the oncotype test. I want as much information as possible but I’ll admit that anticipating the consequences of the results does make me a bit nervous.

    If the oncotype comes back indicating a high chance of recurrence, with a tumor as small as mine, is chemo justified? Not sure how to make these decisions. I know...I need to put this aside for now and concentrate on radiation, wound care, resting, and enjoying our “radiation vacation.” Staying here, though not cheap, was worth it in order to have access to this technology and my excellent RO.

    Sigh.

  • debal
    debal Member Posts: 600
    edited May 2018
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    Hey Patsy, radiation vacation! Great attitude. Hopefully you are laying low and enjoying your surroundings as best you can. Best of luck and that's great you will be done so quickly! Your MO will give you percentages for various treatment scenarios along with your score. It just depends how much weight you put in to statistics and to be honest, I feel, what your gut tells you. Like you said, save for energy for what you are going through now. I hope you are comfortable and relaxing this weekend!



  • moth
    moth Member Posts: 3,293
    edited May 2018
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    Patsy, fwiw, IMO if Oncotype comes back high I would definitely do chemo. The whole point of the test is to look at early stage cancers & figure out who should have chemo or who might be able to safely skip it. (though even that is a gamble - people with low scores have recurred) There's even an DCIS version of it. Just because a tumor is small and caught early does not mean it does not have the possibility of recurrence.

  • meow13
    meow13 Member Posts: 1,363
    edited May 2018
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    Has the oncodx test been updated to include aromatese inhibitors as treatments?

  • debal
    debal Member Posts: 600
    edited May 2018
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    Meow, I want to say no to your question and that it is still based off tamoxifen. Does tailor x consider that or just take away the intermediate range? I remember you took AIs for 4 years, may i asked why you stopped, side effects, or just had enough? Sorry if I missed that in a previous post. Awesome you are doing so well. Moth, I do feel in this day and age we are fortunate to have mammaprint, oncotype. Women before us didn't have this information to help make decisions. There is also luck of the draw..as you said gambling.. because low oncotypes can have early recurrence and high oncotype can go NED many years out. No way to really know where we will fall. How else do we account for stage 1 recurrences within a few years but a women with 9 + lymph nodes going on 24 years NED ( my neighbor ☺) Baffling disease. Stupid disease. I also agree with you about tumor size. Mine was just at a cm and considered small but that doesn't mean no recurrence. Honestly, it gets under my skin a bit when people say that. Tumor biology matters. Once we make treatment decisions it's about improving diet and exercise to decrease recurrence. And getting on with life the best we can, being thankful, and supporting those that are struggling more than we may be. I'm very appreciative for all of you!

  • meow13
    meow13 Member Posts: 1,363
    edited May 2018
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    I had to get off exemestane my side effects were terrible dry eye, so bad it wasn't able to get better with treatment. My oncologist thought that I could try tamoxifen but thought I could leave it at no treatment.

    My eye since is healed. I am not sure why the studies showing AI drugs are more effective is not getting factored into to oncodx I guess they are letting the oncologists handle that.

    You have to remember that high er% and non existent pr cases are rare and seem to be associated with an aggressive tumor nature. I guess the oncodx is just one component to deciding on treatment.

  • debal
    debal Member Posts: 600
    edited May 2018
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    meow, I have trouble with dry eyes now. Use drops here and there but will do so regularly once I start AI's. Glad your eyes are better. My MO also mentioned AI's being more effective. Just hoping for minimal side effects.

  • wintersocks
    wintersocks Member Posts: 434
    edited May 2018
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    I wonder if the higher the er+ is correlates to the aggressiveness of this cancer. I am 100% Er and PR negative. No oncologist ever told me this is a rare cancer. does anyone know just how rare?

  • april1964
    april1964 Member Posts: 153
    edited May 2018
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    I would be interested as well... thank you


  • meow13
    meow13 Member Posts: 1,363
    edited May 2018
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    I saw an article on the significance of the absence of progesterone receptors. It talked about progesterone putting the brakes, so to speak, on the estrogen growth. There is a theory that er+ pr- can grow explosively out of control. Suggesting it may be "worse" than er- pr-, my guess is there aren't enough people like us to really correlate with a worse prognosis. My mo goes to ALL the conferences in San Antonio, he told me the worst part of my cancer is being pr negative. He would have liked me to do AC and T chemo. But it has been 7 years no recurrence. He seems to think my prognosis is good now, but he is cautious about saying too much.

    That being said I saw an article dated 2004 and one 2014 suggesting AI drugs prove to much better than tamoxifen at preventing recurrence in people with er + pr - cancers. Also suggesting that a person er+ pr + taking tamoxifen is at the same recurrence risk as a person er+ pr - taking anastrozole. Again I think the number of us in that category is small. And many pr- people have lower % er. I think not enough data to make a strong claim.

  • PatsyKB
    PatsyKB Member Posts: 211
    edited May 2018
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    you may have read or even referenced this, Meow13 but I’m sharing this not so cheery study in the hope that someone more analytical and sciency than I am can distill it down to Normal Lay English. (Hey I was an art history major...science and numbers aren’t my things).

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4396721/

  • meow13
    meow13 Member Posts: 1,363
    edited May 2018
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    It is a general study, statistical in patients taking tamoxifen. Let me post the one I have ear marked.

    http://www.cancernetwork.com/articles/anastrozole-...

    The link you post is looking at tamoxifen use not AI use. Which is what some studies are pointing to being less effective in the case of er+ pr-. Yes it is even scarier to see other articles where er+ pr- can have a worse prognosis than triple negative. The idea being the estrogen fueled cancer cells can become very aggressive in growth. Shutting off estrogen production appears to be better for er+ pr-, in using AI drugs, tamoxifen doesn't shut off estrogen it prevents binding. The problem is these studies are statistical and where there isn't enough data they are not that reliable.


  • PatsyKB
    PatsyKB Member Posts: 211
    edited May 2018
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    Thanks much, Meow13. This is very helpful. I am hoping that my MO is planning an AI therapy. If not, I’ll want to discuss it with him and this study gives me some information.

  • meow13
    meow13 Member Posts: 1,363
    edited May 2018
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    Patsy,

    That study I linked to, there is an update 2014 version I can't seem to find. It only looks at anastrozole not exemestane or letrozole. There are differences hopefully in the next few years we will see more on this.

  • susanga
    susanga Member Posts: 66
    edited May 2018
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    I am finding Arimidex to be very difficult. It seems that it is causing me to have diarrhea. Believe me this is life altering. I am trying so hard to keep taking it but sometimes I just want to stop and take my chances. I am only seven months into it.

    Reading these posts helps me to remember that this could be an aggressive cancer so I will try to keep taking this awful pill. One day at a time.

    Also, how do you you know whether your tumor is luminal A or B? It is nowhere in my pathology report.

    Thanks for being here ladies

  • mustlovepoodles
    mustlovepoodles Member Posts: 1,248
    edited May 2018
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    Susan, are you sure it's the Arimidex? I had terrible watery diarrhea for a year, starting during chemo (Femara doesnt seem to cause it or worsen it. ) It was, indeed, life altering, and utterly miserable. My GI doc put me on Welchol, an old cholesterol drug whose main side effect is constipation (after a colonoscopy revealed mild colitis.) That stuff was a wonder drug! It stopped the diarrhea and made my stools normal (sorry, TMI.) After about 9 months the diarrhea improved so much that I was able to stop the medicine.

  • meow13
    meow13 Member Posts: 1,363
    edited May 2018
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    Susan, talk to your mo. I wouldn't tolerate se that impact your life. Diarrhea can be very serious maybe there is a medication you can take or you could switch to a different aromatese inhibitor. I was just trying to get by the joint pain with anastrozole until one day I couldn't get out of bed. My doctor was upset I let it go that long. I hate to complain about aches and pains, but diarrhea is serious don't ignore it.

    It is incredible how different we all react. My neighbor lost her hair taking tamoxifen and AI drugs. It never came back. I was so afraid it would happen to me. I never had any hair loss but it was more dull looking.

  • susanga
    susanga Member Posts: 66
    edited May 2018
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    I told my Onc and he told me that I could take a one month break to determine if it is the Arimidex. I’m a little afraid to do that.i have thought of switching but they all list this as a possible side effect. I have been referred to a GI guy in the meantime. I hope he can help me. The CT I had showed a thickened colon and they do believe that I have developed colitis. I have a colonoscopy scheduled and we will go from there. I’m going to look into the WelcholThank you for listening and understanding. It is not a subject you can bring up in most places.

  • PatsyKB
    PatsyKB Member Posts: 211
    edited May 2018
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    I would so love to see more women who are Single Hormone Receptor Positive participating here...I have concerns about how treatment's going to go. (I've had my lumpectomy, as I think you know, and just finished up my SAFI Brachytherapy. Coming up in a week: the big reveal, i.e. my MO telling me what hormone based treatment he'll be prescribing (I assume an aromatase inhibitor) and whether or not the OncotypeDX test indicates chemo.

    Hoping more women join in with questions, wisdom, answers, experiences, advice...or jokes maybe?

  • Egads007
    Egads007 Member Posts: 474
    edited May 2018
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    Hey Patsy, congrats on getting through surgery & SAFI! I’m of no help re: treatment as I was originally diagnosed as triple neg and treated as such (chemo/surgery/rads). My big reveal (and big surprise) was to find out I was weakly ER+. So my MO tossed me on tamoxifen...just short of a year menopausal. They’ve kept me on it for the last 5 years, but I’m up for the big switch-a-roo to an AL in December (merry Christmas, talk about coal in the stocking!). another 5 year drug sentence. Pablo Escobar would have got off lighter! Meh, no worries, I’m kinda thankful for anything I can use to spear a possible reoccurrence through the heart! Will be watching for your big reveal...hoping for the best!

    Wisdom...lol...another item I’m of no help with.