Tamoxifen

After months of talking to doctors, reading studies, and debating the value of taking tamoxifen, I started taking it on 12/27/12. Many of you will ask why would I even debate taking a drug that is a targeted treatment for a receptor we know my cancer cells had on them. Why would I question taking action when it is the "standard treatment" for women with breast cancer? Wasn't there a study about how it decreased your chances of getting breast cancer again by 25% if you take it for 10 years that was just released? (BTW - that study was sponsored by Astra Zenica which is the drug manufacturer.) Well, it's because of the potential side effects. There is a laundry list of side effects for this drug: increased bone or joint pain, hot flashes, nausea, excessive tiredness, dizziness, depression, headaches, thinning of hair, weight loss or weight gain, stomach cramps, constipation or diarrhea, heartburn, loss of sexual desire, cataracts, uterine/endometrial cancer, rosacea, muscle weakness, vaginal dryness or wetness, brown discharge from the vagina, breathing difficulties, and muscle cramps. Yes, I know that they have to report if people have had any type of side effect on the drug and there is very little chance of having these side effects. Yes, I know that reading online chat groups generally bring out people who have the most side effects and most people who have no side effects will never post there. But I was very scared. I pushed the issue with my doctors for them to give me a really good reason to take it and not the standard "Because I don't want you to regret this in 5 years." or "Because it is standard treatment." I made a list of questions and asked them and was told "You are making an uninformed decision." My response, "Well then inform me with data, statistics, and studies. Give them to me. I'm a smart cookie! I know how to read the data. Answer my questions please." But my doctor wouldn't give me studies or quality answers. I was doing the math that the doctor presented to me and was told "No, you aren't doing it right it's a much higher reduction." But the doctor wouldn't show me how or where the data came from. I started questioning why and all of a sudden my doctor gave me the impression that I would die before I was 40 - wait, I had a stage 1 tumor with no lymphatic involvement and no vascularization even through it was a grade 3 cancer and I was told that I had a 1 to 2% chance of getting cancer back if I went through a mastectomy (bilateral by the way). Yes, I know, I can still get breast cancer again even with a mastectomy but it definitely decreases my chances. I asked for stats on how herceptin decreases my chances of getting cancer back. I wasn't given this information at all. I questioned if this drug will have an impact on my asthma and ankylosing spondylitis since I already have joint pain and breathing difficulties and a side effect of this drug are both of those things potentially. I was actually told that "If you increase the amount of time you exercise, you can control the joint pain." (Really? Really? You want me to workout more than I did before. Have you even met me?) I asked if going off of the drug will make all of the side effects go away. I received no answers - I just got lectured. All of a sudden, I became a problem patient. This made my appointments with my medical oncologist very difficult. I started having panic attacks before my appts because I felt like I was going to battle every time I would see my doctor. I went to see another doctor to see what their take on it was. This doctor didn't even let me really express my fears. Although they did give me the % on the studies on uterine cancer and blot clot risks which did help. I cried during this appt and told this doctor something I had expressed to my other doctor - I feel like I am picking my method of death. There are no positive here. I felt like I was being told to decide to have side effects for the next 5 to 10 years and potentially die of a blood clot or uterine cancer or get breast cancer back. I told them that I want a QUALITY LIFE not just lots of years where I am miserable. They looked at me like I had seven heads and they had never heard this before. Both doctors both gave me different stats on my potential recurrence rates from the same program too which was not helpful at all. I know I am not just going with the "Doctor knows it all" strategy but I am a person who has a lot of knowledge in the scientific world and does research. After this last appointment I realized why I was so upset every time I went to a doctor. I was really pissed off that I had fears, legitimate fears to me. I wrote 5 pages of questions with a pro and con list that neither of the doctors looked at during the multiple appts I have gone to. I am a PERSON WITH CANCER. Not just a CANCER PATIENT. Treat me like a person not just cancer. Do not just push my concerns under a rug and say "It isn't that big of a deal." IT IS A BIG DEAL TO ME!!!! I just want to ask - Did you have cancer?? Do you have any idea what it is like to make decisions like this? NO! You don't. Give me enough respect to allow me to feel like a person with fears that are important to me. Address my fears. Do not make me feel like I am a cookie cutter cancer patient. So, after a lot of tears, a lot of discussion with my husband and two important conversations with my surgeon, Dick, and Mary, I went on Tamoxifen. I went on with the understanding that if I get side effects that are bad, we will not treat them with other drugs like doctors seem to like to do, I will go off of Tamoxifen. I expected joint pain but that is not what woke me up within 24 hrs of my first dose. It was unbelievable heartburn that occurred and made me feel like I had acid thrown down my throat. Two days later I was on Prilosec. Then came the feeling of just wanting to sit on the couch and extreme moodiness. A week later came the joint pain in all of the places where my ankylosing spondylitis used to really hurt but I have controlled them through the years by exercising. I have rosy cheeks all of the time. My skin is getting paper thin and flaking off. I am either freezing cold or extremely hot much of the time. I have had horrible constipation that I needed to take something for (too much information for my blog - potentially but it's a part of my life). I'm extremely tired. I went back on breast cancer chat rooms to see what others thought and the common feeling is that it gets better in 2 months hopefully but if it doesn't "You just have to feel bad for 5 yrs while taking tamoxifen." Well, that is not OK for me. I refuse to live the next 5 yrs feeling like I currently do. It isn't fun. I mean what if I only live 7 yrs and 5 of them were really bad, what kind of a life is that. I'm unsure of what I will do. I figured I will get through this bottle as long as my body doesn't continue to decline and then make a decision. What I do know if that I am looking for a new medical oncologist. I will not leave the current practice until I'm done with Herceptin treatments because I LOVE my oncology nurses that take care of me every week but after May 7, I need out.