Please help! Chemo or Lupron?

Options
jennyschu
jennyschu Member Posts: 2
edited June 2014 in Young With Breast Cancer

Hi everyone. I am totally lost at the moment and totally stressed. Basically, I'm 32 yrs old. I'm ER+/PR+/Heu2-. My cancer was grade 1, stage 2 (3.5cm), and all 7 nodes removed were clear.

I already had a lumpectomy 6 weeks ago. My original plan was just radiation next and then tamoxifen for 5 years. I had the Symphony (Mammaprint) test and it came back low risk. My Onctotype score was also a low score at 11. I assumed all this was a clear indication I didn't need chemo.

However, now my oncologists think I need some extra step to give me extra protection - I think because of my age and the size of my tumor. They said I should do Tamoxifen plus Lupron for 3 years. I understand there isn't clear info on Lupron quite yet (prelim results to the SOFT trial due out in December). Lupron sounds like it has some terrible side effects. I have several friends who have done Lupron and said definitely do NOT do it. When I told my oncologist I may not want Lupron, she then said she strongly felt that if I didn't choose Lupron, then I should do chemo (4x TC).

So basically that left me agonizing over which is worse: chemo for 3 months or Lupron for 3 years? And which is more likely to actually benefit me? I'm happy to do both/either, but it's so unclear on what will actually help. My doc refuses to give me her opinion because I think she just doesn't know - the info isn't out there. It's frustrating that so many studies do not apply to younger women. My doctor warned me against even trusting Oncotype that much, as it did not include a large number of young women in their studies that you are compared against.

Anyway, I'm supposed to start radiation tomorrow! Hence the stress of deciding immediately. I already pushed it a day to think about things. Chemo is supposed to come first if you are going to do it. Right now, I think I'm going to start radiation as planned and try and get some more opinions. Supposedly, I can still do chemo afterwards if I wanted.

Has anyone had a similar decision? Anyone have thoughts about Lupron? Or about getting chemo when it may only help 3% or so? I'd love to connect with others who are young with low grade tumors.

· Share on FacebookShare on Twitter

Comments

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited August 2013

    While you are classified as Stage 2 we have another thread started by annicemd for premenopausal, Stage 1, Grade 1. Check out the thread. There's lots of us who are doing the Lupron protocol. We are all anxious to see the preliminary SOFT trial results later this year. Until then, it's a tough call whether to do chemo or Lupron especially for younger sisters. I think it's a good idea to get additional opinions. Furthermore, I would ask your physician to have your case reviewed before the tumor board. Good luck!

    http://community.breastcancer.org/topic_post?forum_id=108&id=773534&page=1

    · Share on FacebookShare on Twitter
  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited August 2013

    "So unclear on what will actually help" -- so, so true.

    Chemo does not prevent MOST women from a cancer recurrence. The chances of chemo doing NOTHING to help you is greater.

    Lupron, ovarian suppression, can create lifelong damage to your body, especially your bones.

    You are young. You want to live a long time. New treatments are being developed every year. Oncologists RARELY suggest doing nothing. And yet, it's a choice that may be the healthiest one for you, right now.

    When we face a cancer diagnosis we always want to do everything possible. But "everything possible" may not help at all. A very wise doctor told me that oncologists often lose sight of the "big picture" -- meaning they are focused on which treatment you need this month, rather than looking ahead to where you may be at 50 when you have exhausted all your treatment options.

    If I were you, I would stay away from chemo as a preventive. I was a bit older than you when I had my Stage I, but my docs kept pushing chemo because "you're so young." I refused. And I refused to be stressed about it. I'm Stage IV now, and I still haven't needed chemo. I wish you peace as you decide and many many birthdays!

    · Share on FacebookShare on Twitter
  • Mandy85
    Mandy85 Member Posts: 31
    edited August 2013

    jennyschu, I know what you are going through, basically our dx is simliar; ER/PR+, HER-, clear of lymph nodes and with my onctotype around 11-12 range. My onc wanted me to go through chemo, raidation and tamoxifen for 5 years. He didn't put me in Lupron at all. So my husband and I decided not to go through chemo, just stick with 33 radiation and on tamoxifen for 5 years. We believe that with out chemo is better for me (for us ) and we were also planing our wedding at the same time too.

    Ultimately its your decision, you don't have to listen or go with all the treatment that your onc told you to do. You can also get a second opinion about the treatment. Hopefully you will figure it out. Good luck with your treatment.

    · Share on FacebookShare on Twitter
  • LtotheK
    LtotheK Member Posts: 2,095
    edited August 2013

    Just to share how clear as mud this is for us youngsters:  I was 39 at diagnosis.  (Stage 1, grade 3 IDC, ER/PR+ Her2-) I went to the first doctor who said given the grade 3, the Oncotype is less predictive, and we should do chemo.  Went to second opinion who said Oncotype is definitive, you don't need chemo.  Went to U of Chicago, which has some of the greatest researchers in the world studying breast cancer.  They said "We don't know, go with your gut.  Here are trials you can participate in."  I went with the first doctor, not because I was so sure chemo is a sure fire, but because I surely don't "go with my gut" on medical issues.  I am not a medical doctor.

    If I were in your shoes, I would get as many professional opinions as you can.  Young women are frankly more susceptible to recurrence, so yes, the stakes are high, but after two friends recurring this summer, I'm not so sure about the soft approach.  There are also studies that indicate chemo has more efficacy in young patients.  Just wanted to give another approach.

    · Share on FacebookShare on Twitter
  • LtotheK
    LtotheK Member Posts: 2,095
    edited August 2013

    My oncotype, by the way, was 12.

    · Share on FacebookShare on Twitter
  • velo
    velo Member Posts: 44
    edited August 2013

    I would skip the chemo with your Oncotype score. I wished I could have had the Oncotype test done because I was so indecisive on chemo - but it was not covered for me and I did not want to spend $4000 and have it come back in the murky middle :)

    I would have liked to have tried Lupron instead of chemo but I could not get enough information on it - my onco had only one previous patient that opted for it. As far as I can see, the biggest side effects of Lupron are the menopausal ones - hot flashes, vaginal dryness etc, and I got all the same things from the chemo-induced menopause (which lasted 10 months)

    One thing to keep in mind is that I believe each shot of Lupron lasts 3 months - so if you decide to go for it but cannot tolerate it then you can always stop it. One thing I worried about if I opted for that, but couldn't tolerate it is that it would be too late to do chemo - but you already know chemo is unlikely to be of benefit to you (so not sure why your onc is recommending it - you might want to get a second opinion as well for peace of mind)

    Also keep in mind the effects of chemo last well beyond the 3 months that the treatments last for. The fatigue definitely lingers. (I'm 10 months finished now..) If the chemo causes permanent menopause for you then that is worse than the reversible Lupron-induced menopause. 

    · Share on FacebookShare on Twitter
  • Violet29
    Violet29 Member Posts: 17
    edited August 2013

    I have been struggling to decide about Lupron as well - jennyshu, I wish I had some words of wisdom for you! Four oncologists I met or spoke with told me Lupron was not necessary, and that Tamoxifen alone was enough, but the one that I see is strongly encouraging me to consider it. I'm finally starting to adjust to life on Tamoxifen, and the idea of adding in another scary drug has me terrified. But not as terrified as the idea of the cancer coming back. All I do is read posts and articles and try to research, but it's all leading me nowhere. For any of you who are taking Lupron, can we hear more about your experience? That would be so helpful. 

    · Share on FacebookShare on Twitter
  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited August 2013

    Annicemd started a thread "Premenopausal, Stage 1, Grade 1." There are a number of sisters doing ovarian suppression. Until the preliminary results of the SOFT trial are know , which many of us are anxiously waiting for, choosing to do O/S is a tough call. At 53 and still menstruating at diagnosis, the choice was much easier for me and I had little side effects. I do worry about increasing my risk of heart disease, but I felt I had menstruated enough by age 53 and whatever benefit I might have gotten from so much estrogen by that point in time was probably no longer that important. I did Lupron injections monthly for two years. During the third year it was finally determined I was postmenopausal. Today at 57, I feel no different than I did at 53. In fact, my internist believes I am healthier now than I was at 53... And I was pretty healthy back the except I had that pesky tumor!



    Good luck with your decision!

    · Share on FacebookShare on Twitter

Categories