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.

End of the year recap

A lot of people would expect me to say that I was excited 2012 was over and it wasn't a good year. There are a lot of things that changed in my life this year and I look forward to a new beginning in 2013 but it wasn't a bad year. Not even close, it was an potentially the most important year of my life. I had a lot of positives happen to me this year. I was able to meet some very special people that have changed my world. Some of these people wouldn't have entered my life without a cancer diagnosis and others would have any way you look at it but either way these people have enhanced my life. I realized how much I love running, biking, and (to a lesser extent) swimming aka triathlons. I fought really hard all year to make sure that running played a part in every aspect of my life and I will fight to keep running for the rest of my life. It is my sanity. Triathlon and running has also given back to me. These sports have allowed me to see my progress over the past year. The people who I get to meet through triathlons and running have made me feel accepted and have allowed me to know that I am part of the sporting community that means so much to me. Not that we weren't each others biggest fans before, but my husband and I have fallen more in love over the last year and he is my biggest supporter. I love our life together and couldn't wish for anything more. I learned how tough I am. I was a tough cookie before but now I feel like I can kick ass in anything I decide is worth it. I have learned more about myself than most people would want to know about themselves. These revelations about myself has allowed me to prioritize things as well. I have learned to say no. I have learned to accept help when I need it. I now have even more motivation to do things that make me happy. I have learned over many years but even more so this year that nothing external can make you happy if you aren't happy inside. (My husband would say I sound like Dr. Phil with that one!) I've learned that I need to look for the positives in everything and let things go when they don't need to be held onto. I've learned to self-advocate for what I want from situations. I've learned that if you want something, just ask. What's the worst that could happen, they could say no but more often than not, they say yes. Of course, I had cancer so I got a lot of yes' this year as a byproduct (I'm not proud of that one - I'd rather earn what I want than be given it). There are negatives too. 1st of all, I had cancer - that sucked! I learned that I am intolerable when I can't run - I'm sorry to all that had to deal with me during that time. My life will be forever different. I morn for the person I was and struggle daily to figure out who I will become. I learned that death is a part of life that we all need to deal with. This has also taught me to enjoy every moment of every day because you never know. I've learned that adults have to make difficult decisions about their health sometimes. I've also learned that when you make those difficult decisions, you cannot look back and have regrets. (Thank you Mary for this one!) I'm not always good at this one but I am trying. I've learned that life isn't always fair. I've learned that not everyone that you thought was important in your life is and may of those people are emotionally draining. My body betrayed me this year. This was extremely difficult to deal with. I was extremely sick (even though many people had no idea how sick I was most of the time). I would say that my body has shown great resilience though. I will acknowledge that I have been able to accomplish amazing things since chemo ended in August - my body has done things that some people take years to accomplish or feel they never could in the 4 months post chemo. I am proud of how hard I work everyday to make sure I am working toward my goals. I know that all of the negatives will result in positive outcomes in my life, I just need to be patient. As for my end of the year stats that I usually post, I don't really have anything to post since I didn't log most of my miles this year. I didn't log any miles between March and November. I was sporadic about logging them in the program I use from November until the end of the year and from the date of my diagnosis until I had surgery. Here is what I have logged in the program though: Swim: 2.66 miles in 1 hr 56 min (I know I didn't swim much more than this this year!). Bike: 302.25 miles in 21 hrs 52 min. Run: 186.8 miles in in 33 hrs 29 min. Other miles: 2.85 miles (no idea what I did off the top of my head) in 2 hrs 30 min. Total miles: 494.56 miles in 59 hrs 47 min (2 days 11 hrs 47 min). I must say that even with cancer, I beat a lot of people in miles logged this year. For the upcoming year, I have goals. Finish the Key Bank Vermont City Marathon and Rev3 Old Orchard beach. Finish Herceptin treatments in May. Get my port taken out in August. Sign up for an Ironman! Live each day to its fullest. Learn from others. Learn from myself. Make sure I am healthy and happy! I have a bright future. Although I will not start the year completing a half marathon due to a slight injury and two illnesses, I will start the year running and that is all that matters. I hope you will do the same. Happy New Year!