Does it really matter what "treatment" we take?

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  • VL22
    VL22 Member Posts: 851
    edited September 2017

    I think it does matter what treatment you do - you just don't know if it is relevant to you. Chemo does work for some people, but not all. So I'll throw the proverbial kitchen sink at this beast, because it could make the difference between life and death. Yeah, this treatment regimen sucks, but it's a year out of my life. I'll take my chances that it'll work

  • pupmom
    pupmom Member Posts: 5,068
    edited September 2017

    Shocked, the Oncotype report must have said your risk of dying from chemo was higher than from cancer. They send a graph with the report where you can see the difference. Oncs don't know the real risks versus benefits of chemo until they get that information. At least that's what I think is going on. I had a score of 14 and did not get chemo, even with 2 positive nodes.

  • pupmom
    pupmom Member Posts: 5,068
    edited September 2017

    BB, I don't know. Mine was 6 points lower, plus I was 62 at that time. Maybe you were younger? Doctors have to consider multiple factors.

    Want to add that I know first hand that doctors don't always get it right.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 182
    edited September 2017

    Pupmom,

    with the Oncotype Dx score doctors are able see that the risks of chemo outweigh the benefits? I'll be sure to the request the test at my followup with the B.S. Would the Oncotype Dx score apply to hormones as well? They may recommend hormone therapy in my case but what worries me is that the prescribed dosage for all women is the same--- a one size fits all treatment. I weigh about 110 pounds and the thought that I'm getting the same dosage as someone who weighs 180 pounds is incredibly frightening to me. These drugs don't come without risks and it's something that I've been thinking long and hard about.

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited September 2017

    I just commented recently (not sure what thread) on the dosage amount too! I'm about 105. I usually only need one Tylenol or Motrin. My MO cut the benedryl in half during chemo and it still put me to sleep. I wish the tamoxifen was adjusted by weight as well. I'm sure all the studies were based on standard dosage though. I meet with him Tuesday. I'm going to bring it up

  • pupmom
    pupmom Member Posts: 5,068
    edited September 2017

    Bosombuddy, the Oncotype score is based on the assumption that one is taking an anti-hormonal (of course this means one is ER+. The test is not applicable to those who are ER-) Don't know about dosage amounts. This is something you should definitely discuss with you doctor.

  • ShockedAt48
    ShockedAt48 Member Posts: 138
    edited September 2017

    Pupmom and Bosumbuddy101: A low Oncotype score of below 18 usually means that the risks outweigh the benefits and chemo is not recommended. I hope they are right! You have to be ER positive, HER-2 negative and up to 3 lymph nodes positive I think to qualify for the test. The dosage of birth control pills or other standard medicines are not changed based on weight so hopefully you won't have any side effects from hormone therapy.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 182
    edited September 2017

    Pupmom,

    Where did you read that the Oncotype Dx score assumes that the patient is taking hormones? I used the following site:

    http://lifemath.net/cancer/breastcancer/therapy/in...

    and the benefit of adding hormones to my treatment was not much different than skipping it altogether---I think it added a few months to my life span.


    Shocked,

    I read that tamoxifen is a chemo therapy drug so I'm not sure if you can compare it to birth control. Tamoxifen is also prescribed to women with stage 4 metastatic cancers.


  • Bosombuddy101
    Bosombuddy101 Member Posts: 182
    edited September 2017

    I'm not sure what the dosage is for women with metastatic stage 4 cancers, but I was reading that Tamoxifen is prescribed to prevent recurrence in the contralateral breast. This is confirmed on this website:

    http://www.chemocare.com/chemotherapy/drug-info/Ta...


    What's funny is that they state: "Your doctor will determine your dose, schedule and duration of treatment."

    They consider "rare" to be events that occur in less than 10% of users: "Not all side effects are listed above. Some that are rare (occurring in less than 10% of patients) are not listed here. However, you should always inform your health care provider if you experience any unusual symptoms."

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited September 2017

    Oncotype Dx is also for those with early invasive cancers. I don't where the cut off is for "early" is though.

    Shocked-I have no lymph node involvement and am currenlty waiting for my score. It may depend on where in the world you are as to what is or is not covered.

    I am really glad I started this thread. Hearing how other's made desisions that was best for them and focused on moving forward has been really helpful for me. I feel like I have a clear mind as I go into a stressful week of 6 doctor appointments, all to gain information and make a decision for future treatment.

    We ALL have differnet doctors and different dx. Different ages, differnet requirements for quality of life. Remember, we all are doing what is best for us. My original point was how to get to what is best for me and not look back. I can't commit to chemo and not know it is right for me.

  • Icietla
    Icietla Member Posts: 1,265
    edited September 2017

    Bosombuddy101 -- Look over the OncotypeDx website. The Oncotype Distant Recurrence Risk indication assumes that the patient will have five years of anti-hormonal treatment. For any case meeting OncotypeDx's submission criteria, anti-hormonal treatment would be appropriate and expected, see. The OncotypeDx test for Invasive Breast Cancer is to help guide the treatment decision about (infused) Chemotherapy.

    I believe ShockedAt48's point in making reference to one-size oral contraceptive dosing was to address a concern you and Legomaster225 expressed about one-size dosing with anti-hormonal medicine. Many medicines have one-size dosing for adults.

    All medicines have possible risks and possible side effects. Those of you new to this and dreadful of anti-hormonal treatment, why not give the recommended medicine a real try? If you have bothersome side effects, your Doctor may be able to help you about that, maybe even by changing your medicine. You may have side effects that seem trivial to you. You may have side effects that are only temporary.

  • ShockedAt48
    ShockedAt48 Member Posts: 138
    edited September 2017

    Busombuddy101: Tamoxifen is not a form of chemo. I thought it was one at first myself. Tamoxifen works on the whole body (known as systemic treatment) and blocks the effects of oestrogen on the receptors. Women with tumors that are ER positive benefit the most.

    It's interesting to note that tamoxifen was developed as a birth control pill that ended up not being very effective. It's also used as a fertility medicine similar to how Clomiphene is used. The dosage is 40 to 80 mg, much higher than the 20 mg used for breast cancer suppression.

    I have been on tamoxifen for about 9 days and I don't have any side effects yet. My oncology nurse practitioner saidthat if I don't have any side effects after 3 to 4 weeks I will be very lucky.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 182
    edited September 2017

    Icietla and Shocked,

    I'm still recovering from the bilateral mastectomy so I haven't met with any of the medical team besides the breast surgeon. I really don't know what they're going to recommend. When I first met with my breast surgeon who did the bilateral, I was informed by the nurse that the surgery would probably be the only thing I would need given the fact that my tumor is pure mucinous carcinoma which has a very favorable prognosis.

    It just occurred to me that if 180,000 women are diagnosed with breast cancer every year, 10% or 18,000 women will experience so-called "rare" events taking Tamoxifen. These are frightening statistics.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 182
    edited September 2017

    Okay, according to the latest 2017 statistics from the American Cancer Society:

    About 252,710 new cases of invasive breast cancer will be diagnosed in women. About 63,410 new cases of carcinoma in situ (CIS) will be diagnosed (CIS is non-invasive and is the earliest form of breast cancer). About 40,610 women will die from breast cancer.

    In other words, 25,000 women will experience "rare" events.

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited September 2017

    Pupmom:

    I had an Oncotype score of 14 as well -- diagnosed at 49. No chemo by all doctors consulted.

    Lego and Bosom: I got you. I'm not even 100lbs right now. (Lost about 5 after cutting out wine/cheese every night after work. LOL) The anesthesiologist for my BMX said I should have pediatric dose of Tylenol, etc., and I'm assuming he gave me that for surgery. I do wonder about dosages when there is such disparity with weight.

  • Icietla
    Icietla Member Posts: 1,265
    edited September 2017

    Bosombuddy101 -- No, Dear! Your math seems to assume that Tamoxifen will be used in every case of diagnosed breast cancer, and it seems also to assume that ten percent of breast cancer patients will have *rare but serious* side effects from Tamoxifen. Neither is a fair assumption.

    Ten to twenty percent of diagnosed breast cancers are of Triple Negative type. Then there are all the cases of breast cancer that are Estrogen Receptor-Negative and Her2neu-Positive. Count all of these cases out of your assumed count of Tamoxifen users.

    Then, of the remaining cases, count out the vast majority of the post-menopausal women on anti-hormonal treatment, as the vast majority in these cases would be using an Aromatase Inhibitor instead of Tamoxifen. [Take into account, too, how breast cancer incidence rates increase with age.] Then count out all the pre-menopausal women having ovarian suppression treatment so they can take Aromatase Inhibitor treatment instead of Tamoxifen treatment. Then count out all those persons whose (presumably appropriate) anti-hormonal treatment is delayed, discontinued, or refused.

    Then look again at the Chemocare website page you linked up there: "Some that are rare (occurring in less than 10% of patients) are not listed here." In the context of that statement, it does not say "events" -- it says "side effects." It does not say 10% -- it says "less than 10%." Further, it says "rare" -- it does not say "rare but serious." For all we (consumers) know, it might be, say, that a percent of a percent of Tamoxifen users get (some or more) freckling, or that one percent have oilier skin.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 182
    edited September 2017

    Icietla,

    According to many sites, including

    http://ww5.komen.org/BreastCancer/TumorCharacteris...

    about 70% of breast cancers are hormone receptor positive and each year, according to the American Cancer Society, 252,000 women are diagnosed. When one considers that women are prescribed Tamoxifen over a period of 5 - 10 years, the figures add up--- consequently the number of women who fall under the "rare events" category is probably much higher than 25,000. You can be sure the "rare" events that the site is referring to is not "freckling" or "oilier skin." You can also be sure that if the number of rare occurrences was under 1% they would say so. I believe the number of rare events is actually closer to 10% and that's why they have that number listed.

  • Icietla
    Icietla Member Posts: 1,265
    edited September 2017
  • Bosombuddy101
    Bosombuddy101 Member Posts: 182
    edited September 2017

    By the age of 55, over half of all breast cancers reported. How does that corroborate the figures you pulled out of your head?

  • Icietla
    Icietla Member Posts: 1,265
    edited September 2017
  • Birdie13
    Birdie13 Member Posts: 5
    edited September 2017

    My question as well. Had horrible side effects from Aramosin, now experiencing same from Arimidex. Quality of life worsening at age 65.

    Had double mastectomy, strong family history of cancer.

    I'm triple neg, PALB gene positive.

    Do AI's matter for me? I don't think oncologists really have the answer to this.

  • Jojo0529
    Jojo0529 Member Posts: 193
    edited September 2017

    northeast Philly here 👍🏻

  • Tako
    Tako Member Posts: 3
    edited September 2017

    Hello, I'm kind of confused right now, my mom was diagnosed with invasive ductal carcinoma, stage 2 , grade 2, her2 neu1+ negative , est, prog positive , ki67=12%.( no metastasis) The doctor said radical mastectomy. What I want to know is the treatment after surgery. The doctor said this is hormone positive cancer and no chemotherapy . Please , tell me is this the case when i should visit another doctor? or what is the best treatment for this type of cancer, your response is very important and means a lot for me,

  • Tako
    Tako Member Posts: 3
    edited September 2017

    as far as I know, it depends on cancer type, that's why I am posting here to know what is the right way. it's been several days since we knew about the condition .

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited September 2017

    Tako, Did the doctor do an oncotype test on your mom? That would be an important factor in determining if chemo would be beneficial. Not everyone gets chemo. How old is your mom? That may make a difference too.

    This might be helpful...

    https://www.nccn.org/patients/guidelines/content/PDF/stage_I_breast.pdf

  • pupmom
    pupmom Member Posts: 5,068
    edited September 2017

    Nobody gets Als or Tamoxifen if they are triple negative.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 182
    edited September 2017

    HapB,

    Exactly! I intend to ask for the oncotype dx score next time I meet with the oncologist and find out exactly what my recurrence risk is. According to numerous studies, the survival rate for my particular cancer is 90% over 10 years with no treatment other than lumpectomy with radiation or mastectomy. The recurrence risk is 10% and hormone therapy reduces this recurrence risk by say, 50% to 5%. In other words the survival rate over 10 years with hormone therapy is 95%. Since most women won't have a recurrence, is it really worth the risk of taking a drug that can potentially cause other life threatening conditions? Also, I read on Breastcancer.org that women who start hormone therapy and then stop, for whatever reason, are at increased risk of having a recurrence. I don't know the exact mechanism for this, but here it is:

    http://www.breastcancer.org/research-news/not-taki...

    So...do I take a chance with hormones and then God forbid, have a serious side effect--- like a pulmonary embolism----- then stop taking hormones and end up with breast cancer again --- followed by radiation, possibly chemo and end up taking blood thinners (Warfarin --- rat poison) for the rest of my life? Decisions, decisions....

  • pupmom
    pupmom Member Posts: 5,068
    edited September 2017

    Bosombuddy101, please don't EVER take a baby aspirin! Reading about those SEs will simply blow your mind!

  • Bosombuddy101
    Bosombuddy101 Member Posts: 182
    edited September 2017

    Pupmom,

    You can't compare Tamoxifen to baby aspirin. Seriously.

    These are life altering decisions and it's a huge learning curve. Much of this is just me trying to think things through and finding some clarity or maybe truth.

  • marijen
    marijen Member Posts: 3,731
    edited September 2017

    I think it is 61% of 5% of non compliance have recurrence. 30 -40 % have recurrence anyway on AI. Check it out

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