When is Chemo recommended?

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BethL
BethL Member Posts: 286

I thought I knew a lot about breast cancer, clearly not. I was diagnosed with DCIS and minimal invasive cancer in 2005, age 38. I had a lumpectomy and radiation, sentinel node negative, ER+/PR+/Her2-. Went on Tamoxifen for 5 years. Now 10 years later, I've been diagnosed with IDC 7mm and DCIS (unclear margins) - same area. This has been going on since August. Now cancer is ER+/PR-, Her2-. I am scheduled for BMX early December and total node dissection. I just assumed I would go back on Tamoxifen again (yes, still premenopausal), however I have read that Er+pr- cancers are usually Tamoxifen resistant. If so, then what is the alternative?

I have not seen medical oncology yet, only surgical. I will see them after surgery. i never asked if chemo would be recommended, assumed it wouldn't be but we never discussed it. Ten years ago the rule seemed to be no on chemo if tumor was <2cm and no nodal involvement, but I see here many women had chemo for small cancers. How do doctors come up with recommendations? Are there clear "rules" for this, and if so, what are they? I don't have an appointment for several weeks, and that is my preop appointment with the surgeon.

I did not have the oncotype test done. Ki67 30%, grade 2. I want to be informed before I see the oncologist, not sure what they would recommend. How is that decision made? Is there a site that offers some type of equation to see when chemo is necessary? Also - if Tamoxifen resistant what is the treatment for premenopausal patients? Does the fact that this is my 2nd cancer play into the decision?

Thanks for any assistance you can give me. I find the best information here! I trust my doctors, but I have to understand it all before I go in. And googling things typically leaves me scared and more confused.

Thanks!

Beth



Comments

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited November 2015

    I am also ER+PR-HER2- with a 1.8cm cancer. My Oncotype was 23, so my MO recommended chemo. I also have 2 pathological gene mutations, so I'll also be having a BMX after chemo.

  • doxie
    doxie Member Posts: 1,455
    edited November 2015

    BethL,

    So sorry that this has returned, or are they considering it a new cancer?

    Ask your MO to send your tumor for an OncotypeDX test. This will give you very valuable information as to whether or not chemo might be beneficial for you. Also, premenopausal women who cannot or should not (perhaps in your case) be on tamoxifen, can have shots to shut down your ovaries and simultaneously take aromansin/exemestane. This combo has been shown to better prevent recurrences in premeno women, than tamoxifen.

  • NorthernCA
    NorthernCA Member Posts: 3
    edited November 2015

    Hi Beth, You kicked butt for 10 years so I'm sure you'll do it again this time. I totally get the confusion the internet can cause as I'm in the same boat being new to this. What I know is surgery can change the dynamics a bit. I was diagnosed with a 2.2cm IDC tumor but after the vmx the IDC was 1.2 and the other part was DCIS cells. So I went from a stage 2A to 1A. My grade in the biopsy was 2 but after bmx was a 3. My nodes were clear. Because of the size was smaller my oncologist said we should do the oncotype test. He did tell me that the grade 3 was most likely going to cause the test to come back with a number high enough to warrant chemo but I was game to get more info. He was right. I came back a 42. The scoring is 1-100. So your situation could change a bit too. It is the oncologist who will get approval from your insurance to do the onco test. Read about the test prior to your visit. Your surgeon will send you the pathology report from the bmx ahead of your visit. As for tamoxifen I don't know if you have to be PR+ but that fact should be on drug's website . Best wishes and a speedy recovery to you!

  • octogirl
    octogirl Member Posts: 2,804
    edited November 2015

    Hi: I was also considered high risk for reoccurrence based on test score and factors in my signature....it is definitely a question to ask your MO. I will only add one suggestion: it might be worth seeing your MO before your surgery, if possible. Many women like knowing that the MO is involved in the decision making for treatment from the beginning, and there are also instances in which chemo prior to surgery is indicated.

    In my case. I also didn't see MO until after surgery, but that was partially because surgery happened quickly (BS wanted to get the surgery and initial follow up done before she went on an extended trip out of the country, and I was all for that.) For me, seeing MO earlier wouldn't have changed my decision making at all, or the timing of chemo, but that was partially because recovery from surgery took longer than expected for me.

  • beau
    beau Member Posts: 374
    edited November 2015

    Hi Beth,

    So sorry that you find yourself in this predicament. I just want to say that I had a similar cancer - ER+/PR-/HERZ-, but my cancer was much bigger - 2cm. I did go through chemo and then did 5 years of an AI (just reached 5 years this week!) . I was very hesitant to have chemo and ended up getting a second (and third!) opinion. They all said that I should do chemo primarily because my Oncotype score was 26 (mid range) which indicated that I had a reasonably high proliferation rate (which means chemo can help) and the fact that I was PR- suggested that I might or might not get as much benefit from anti estrogen therapy.

    So, you might want to get a second opinion to help you gain more information /comfort with whatever decision you make in the end. I glad they caught this cancer early and hope that you get whatever information you need to help you decide what is best for you.

    Best Wishes

    Beau


  • mammalou
    mammalou Member Posts: 823
    edited November 2015

    I am also PR + ER - HER2 -, 4cm tumor with nodes. I had chemo. My mo said that he didn't think much of the studies that said PR - meant Tamoxifen resistence. I've been on Tamoxfen for 4 years and so far, it's good. I'll go on an AI next for 5 years.

  • BethL
    BethL Member Posts: 286
    edited November 2015

    Thanks everyone for your information. It's all just so confusing. Last night I was telling a friend my surgery plan - and it felt like I was talking about someone else, not me. It was a weird realization that I am the patient!

    Doxie -I wont' be able to see MO before surgery at this point, I see my ps and so in two weeks for preop stuff. Wish I had thought of that months ago!

    Beau & Mustlovepoo - I have read about AIs a little. I tried to get in a study 4 years ago, but said because I wasn't newly diagnosed I couldn't get in.

    Doxie - a shot to shut down ovaries? Nice option to oopherectomy.

    Mammatour - When I read about loss of pr meaning tamoxifen resistance - I wondered how they know that. Is there a test they do on the cancer to tell what works with it?

    Oncto testing - how is this done? My tumor was removed in August during a ductal excision - wasn't expecting cancer. Can they go back and test it now? Hoping they won't find more cancer during the bmx - but for some reason expecting it. My doctor seems as though it could be a real possibility. My scarring from previous surgery is pretty bad. The size of the scar I have now is as big as a mastectomy scar, and it has thick scar tissue from the mammosite. It's nothing but a hard lumpy area - I've said for years it feels like my original tumor - because the space has filled in with so much scar tissue. This is where the new cancer is - and why it was so easily hidden during scanning. I worry about what else is in there. Total Lymph node dissection is also going to occur during surgery - afraid to even research that. Scares me as much as the mastectomy.

    Beth

  • mvspaulding
    mvspaulding Member Posts: 446
    edited November 2015

    Hello ladies, I had a BMX on Oct 27. My tumor was 1.1 cm and I am ER+, PR-. Her2- my Oncotype score is still not back. I have an appointment with a MO on the 10th but I'm thinking I will need to reschedule. I was always wondering what the PR- meant for my therapy after surgery. During surgery they were pretty positive that all 4 of my lymph nodes were clean but path report after says 2 have microscopic cells which makes me stage 1B. If they are microscopic does this make me positive for lymph node involvement? When my doc called I was kind of out of it I just remember her saying I'm 1b now. And that I need an appointment with a MO. She did say that the PR- tends to return a higher score. However from the beginning she has told me I would take Tamoxifen. That as long as I have one positive receptor it would be indicated. from the beginning the one thing I didn't want to go through was chemo but that is looking more likely. My grade is 2 and Ki67 is 50%. Sorry if I am rambling just scared and confused

  • Dauna
    Dauna Member Posts: 20
    edited November 2015

    Hello Everyone, 

    I'm sorry I'm so late to the discussions in the group. I had my surgery back on June 20th. My surgeon was confident that I would have only radiation. Pathology showed ER+, PR inconclusive, HER2+. However, when I met with the medical oncologist for the first time she had a couple of concerns and had the pathology redone. Everything was the same except I was PR-  Nevertheless, the margins were clear and the sentinel node was clear. Being completely in the dark, myself, (who among us who have never gone through this knows very much) I listened to what she began to say. As an aside, someone else commented that it always felt like the Dr. was talking about someone else, surely not me. But me it was and so I listened. She was saying she felt slightly uneasy and wanted the very best for me and suggested rather than going directly to radiation she'd like to do an Oncotype test which would help to determine the likelihood of recurrence. 

    She explained that my tumour (even though it was no longer inside me, remained forever 'mine') would be sent to California, the only place in North America that does this test. An Oncotype test studies the tumour at a molecular level and analyzes some 600 identifiers. It took about two weeks for the test results to come back. She was, to say the least, surprised at the test results. Despite a pathology that appeared just about as good as it gets, my Oncotype score was 30 indicating that the tumour was much less 'friendly' than the pathology indicated. After consulting, independently, with each member of my treatment team, to a person they recommended chemotherapy. It was not the news I wanted to hear but it certainly was what I needed to know. I want to do everything I possibly can now to try not to have to go through this again. The decision was that rather than a full round of 8 treatments, I'd have only 4. Afterward, there will be 5 weeks of radiation. And then 5 years of Tamoxifen. 

    I have 7 sisters (1 deceased from colon cancer, which never needed to happen, but that's another story😓) and a mother, of course. Zero BC in family history. I just happen to be the 1 out of our collective 9. 

    I asked and have been scheduled for genetic testing to see if it will illicit any clues as to why me and if my daughter or two granddaughters are at a high risk. 

    I'm currently two days out from my 3rd round of chemo. My oncologist is a brilliant 35yr young lady who keeps me focused, uplifted, positive and who has and answer and a remedy for every side effect I'm experiencing. 

    Dauna




  • mvspaulding
    mvspaulding Member Posts: 446
    edited November 2015

    Hi Dauna,

    I too am ER+ Pr-, but I was Her2-. I decided to have the bilateral mastectomy instead of lumpectomy and radiation. I was told from the beginning if I was Her2+ That chemo would be a given and that I would have to take something called Herceptin. Did they discuss this with you? Chemo is still up in the air for me because microscopic cancer cells were found in two of my lymph nodes and my oncotype score isn't back yet.

  • Dauna
    Dauna Member Posts: 20
    edited November 2015

    Hi mvspaulding,

    My surgeon left the kind of surgery up to me. He said that because my tumour measured 1.8cm that mastectomy wouldn't be his first choice. He did say that if I opted for a bilateral mastectomy there would be no need for chemotherapy and he further believed that it would mean a very short course (15 days) of radiation. The biopsy report was stage it was in Stage 1C. He confided in me that he didn't quite understand the 'C', explaining that generally after Stage 1B it becomes Stage 2A. 

    He went on to say my after care wouldn't change whether I chose breast preservation surgery (he prefers that term to lumpectomy) or mastectomy. And that if he cloned me and put ten of me in one room and ten of me in another, and one group had breast preservation, over mastectomy, the survival rate would be exactly the same. Given that scenario I chose lumpectomy. 

    Herceptin was never mentioned or discussed. And remains a word with which I'm unfamiliar to this moment. What is its function in the treatment?  My surgeon said that he wouldn't guide my treatment other than to perform the surgery I chose. 

    I was extremely confused, about what my after care and treatment plan might look like because I was still in such a cemented state of denial and fear I couldn't even find my voice. As an additional note, I have Epilepsy with full grand mal seizures but also pseudo seizures under times of extreme stress. I spent, at first, a good deal of the time 'separate' from the discussion and was more of an onlooker in the corner of the room. A real life version of 'a fly on the wall'. I would be freezing cold, my feet bounced on the floor continuously and for short periods of time was rendered mute. It was my husband and Ativan that would bring me back to the discussion so I could make decisions. 

    In retrospect I wish I'd met with the MO prior to making any choice. I just needed the invader out! I did such a good job of floating along on the River of D'nial that I never truly felt like a Cancer patient until I had no hair. 

    Sorry for that tangent. When my Oncotype test came back my MO said if the score was 31 there would be no discussion her firm recommendation would be chemo. As I said mine was 30. After he consultations and recommendation I asked her my gold standard question, adjusted to age, 'If I was your mother, what would you want me to do?  Without hesitation she said I'd want you to have the chemo I'm recommending. And I'd promise her as I'm promising you that I'll get you through it. 

    Any other questions that I may be able to answer, from my limited experience, for you, I'm happy to do so. 

    Dauna


  • Dauna
    Dauna Member Posts: 20
    edited November 2015

    My apologies mvspaulding it's been awhile since I checked my pathology and Onco test. I erred. I'm ER+ but both PR- and HER2-   That will probably make more sense as to why my MO had concerns about recurrence and whether chemo would offer a higher benefit than risk. 

    Again, I apologize for the confusion I must have caused to the participants who have a far more clear understanding of their DX than I appear to have. I do remember initial pathology said PR inconclusive which is why my MO ordered another one. 

    I had round 3 of chemo just this past Thursday. 

    I do have a question. I had my surgery in late June and I still have the very distinct blue staining from the dye used to light up the sentinel node. Does anyone know how long it is before the blue is gone?  It's a ridiculously minor concern, given the scars crisscrossing my breast and arm pit, but I still wonder?

    Dauna


  • mvspaulding
    mvspaulding Member Posts: 446
    edited November 2015

    Dauna,

    Really no need to apologize. The Herceptin is given if you are HER2+ so that's why I was confused. It sounds like our tumors and receptors are exactly alike. I am concerned that my score will come back on the higher side as well. If I have to do the chemo to beat this beast for good then I will. Thanks so much for your response.

  • Dauna
    Dauna Member Posts: 20
    edited November 2015

    I'll be hoping that your number comes back low! When do you expect the results back?

    All the best

    Dauna

  • mvspaulding
    mvspaulding Member Posts: 446
    edited November 2015

    they should be back next week sometime. Thanks.

  • mvspaulding
    mvspaulding Member Posts: 446
    edited November 2015

    Beth,

    I am PR- too but from what I have read if you are positive for either ER or PR or both that Tamoxifen is still indicated. Good luck with your upcoming surgery and sorry you are going through this a second time.

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