Refusing hormone therapy
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Hello,
I am posting on behalf of my 85 year old mom. She was originally diagnosed with breast cancer 17 years ago. She had a mastectomy and underwent both chemo & radiation for prevention. She was also on Tamoxifen for five years until they took her off. She remained cancer-free until November 2014. She was diagnosed with colon cancer & also underwent radiation & chemo (pills). She bounced back really well but late in 2016 a scan revealed nodules in her lungs. They tried twice to perform a biopsy but were unsuccessful (her lung collapsed). They decided to radiate one of her lungs which did shrink the nodules somewhat. They were assuming the nodules were metastatic colon cancer but didn't know for sure. During another routine scan they found several spots in her spine. A biopsy on her spine was successful & revealed she now has stage 4 breast cancer 😔. She was referred to a breast cancer oncologist who recommended she take both Letrozole & iBrance.
Before starting any meds, she was tired but still able to do things...drive to the store, get her nails done etc. She had a blood test done before starting treatment and her hemoglobin was just slightly low (118). She had a stomach bleed in January that was clipped so everything was getting back to normal. Her RBC count had been a little low too but she was taking iron (Proferrin) & it was almost back to normal.
A month after starting Letrozole & one week into taking the iBrance, we had to call an ambulance. She had progressively gotten very weak to the point of not being able to lift her head up. She had severe headaches & the iBrance caused a severe rash. The hospital pharmacist told us to immediately stop the iBrance which we did. We tried to speak with her oncologist directly but got the runaround (a whole other story). My mom was in hospital for a week needed 2 blood transfusions & 3 iron infusions. Within a month of her being on both drugs her hemoglobin went from 118 to 65; Both her WBC & RBC count became extremely low. On the day of her release from hospital she decided to stop taking the letrozole.
I am not trying to discourage anyone on this forum from taking these drugs but just sharing our experience with them. She has been off of Letrozole for almost 2 weeks but is still having night sweats, joint pain, chills, heartburn, metallic taste in her mouth etc. Her hemoglobin has improved greatly (99) but her RBC count & WBC counts are still very low. I cannot know for sure if these are symptoms of the cancer itself or the drugs but I do know that she was in far better shape before taking them.
I am hoping & praying that she will start to feel better. I realize the drugs were supposed to slow the growth of the cancer but when she no longer has any quality of life, then what's the point. When the cost of extending one's life is to reduce the quality in such a way that they no longer can function at any reasonable level, then maybe the treatment is in this case, is worse than the disease. I'm sure her age has a lot to do with it as side effects can be more severe in elderly patients.
Mom's next appointment with her oncologist isn't until July 3 but thankfully her GP is requesting home blood tests weekly to keep an eye on things. She lives alone (her choice) but I am there three times a week. She won't go back on the drugs but we are looking into CBD oil now to relieve some of her symptoms
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Hi Jazcan, welcome to our community! Thank you so much for sharing your mom's story. We're so sorry for all she's been through! It's helpful for members to hear different perspectives, the good and the bad, as they decide which course is best for them. We're glad she was able to make the decision to end her treatment, and hope that she's on the road to recovery soon!
The Mods
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i feel so similar the hormone therapy Just doesn’t seem like the route I want to go there has to be something else! I am left to feel like if I do not take this medication I am going to get cancer back it’s almost like I’m being scared into taking it, and it’s working I’m so frightened for my life for my daughters sake but at the same time I want the best quality of life how ever long it is for my own sake.
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I just refused tamoxifen and I’m scared for my life and that’s how doctors and nurses are making me feel .....like I’m making the wrong decision I’m still unsure of it myself but I did agree to have my ovaries removed and my medical oncologist said it is better than doing nothing at all.
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Reagan, it would help if you would post your stats, otherwise nobody has a clue about what you're dealing with.
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Reagan, get them to give you your personal benefit from the drug. In some situations it is a very low percentage and that will help you make a good decision.
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Reagan, as other have said, it would be helpful if you would post your stats and pathology information - what was the grade of your cancer? the size of the tumor? was it both ER+ and PR+? was it HER2- or HER2+? Your questions about hormone therapy need to be answered in the context of your diagnosis.
The benefit from hormone therapy for someone who is older and who has a non-aggressive Stage I breast cancer might be quite small, so for someone in this situation, passing on hormone therapy might be a low risk decision. I did look back at your other posts and found some info about you and your diagnosis that is critical to this decision. You are very young (only 36) and you have a Stage III breast cancer with 5 positive nodes. As such, for you, hormone therapy will likely provide a significant risk reduction - this is why your medical team is pushing so hard for you to take these meds. The most important risk that hormone therapy will reduce for you is the risk that your cancer might return somewhere in your body, a metastatic recurrence in your bones or your liver or somewhere else. Once a patient is diagnosed with mets, while there are treatments available, the cancer cannot be cured and at that point the goal of treatment is to extend life, hopefully.
Your Oncologist should be able to tell you how much metastatic risk reduction you will get from hormone therapy. Until then, you can use this model to get an idea of what your risk of mets is, and how much hormone therapy can reduce this risk:
http://www.lifemath.net/cancer/breastcancer/therap...
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Hello. Yes, Kaylie I find people sometimes don't distinguish between complementary and alternative treatments.
Pretty scary. Thanks for your post.
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Hi everyone. I chose to not take anti hormones for several reasons. The main reason was my poor QOL due to multiple autoimmune disease. I just was not willing to compromise my QOL any further. I just passed the 5 year mark and I'm doing well. Please feel free to ask me any questions. Good luck and keeps posted...
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Dtad, you were Stage 1a, which is a lot different than Reagan's Stage III.
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Yes I was stage 1A but so is Crosbyfan who originally asked the question. I was really answering her. I want to say again that its a very personal decision and I would never try to influence anyone either way.
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I was afraid not to take the hormone treatment. I was not allowed to take tamoxifen because of a pulmonary embolism after my last chemo session, but I did take anastrozole and then letrozole for a total of 3 years. A terrible 3 years in which my QOL went down the toilet. After much discussion with various doctors, I made the decision to stop taking the meds. It took a few months, but my body slowly got back to normal and I no longer suffered the terrible pain (there were days when I could barely walk or type or pick anything up). It has been 7 years since I stopped taking the meds and I don't regret it. The pain was not worth it for me and I have been swimming and walking very easily since then. But, of course, there are people who have no problems at all with the hormone meds. And it is definitely a personal choice to take them or not.
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