My post below is titled I am not in menopause any longer, however what I have been in has been "chemopause" and it can take a couple of years or more for your ovaries to "wake up". Well mine have awaken. It could be a blessing or a curse. I am going to consider it a blessing. I still feel sooooo good. While I am not having the severe sweaty hot flashes any more I still get warm flushes and I have had a few of them this week that have been worse than the past two weeks but they are so easy to get through compared to what I used to have while I was taking Tamoxifen.
Today marks 2 years since I started chemo and 2 years since my cycle shut down (I was actually on my period when I started chemo and two days later it abruptly stopped and has never come back). I still have not started my period and we don't know for sure when my ovaries "woke up" because most women don't have a period on Tamoxifen anyway. Here are the exact results of my hormone test from July 28th and then again on November 28th. My estradiol level back at the end of July was 6.3 and FSH was 48 (clearly post-menopausal) and my estradiol level on November 28th was 359.7 and FSH is 19 (clearly pre-menopausal). I have been so scared since I found this out on December 2nd thinking that my hormones are running wild through my body. I am still taking a drug holiday from Tamoxifen and enjoying every minute of it. I have been researching the benefits and risks steady with every spare moment I have.
Today I had my much anticipated appointment with Dr. C down at The Huntsman Cancer Institute in SLC, Utah. I have decided that I wanted to talk to another oncologist about my care going forward. He actually specializes in breast oncology, I had no idea such a doctor existed. I just thought that an oncologist was an oncologist and that there was not a specialty within the field. I also decided to move my care down there just in case my cancer ever comes back. I have always said that if it comes back I am going to Huntsman. I figured now was a good time as any to get established. I would rather be established now where I only have to go to my check ups a few times a year anyway. Huntsman is about an hour and twenty minutes from my house. My appointment was about two hours long. I had to answer a ton of questions and then his physician assistant came in and spent the first hour with me. She had me tell my story and asked about my hobbies and family. It was really nice. Then she did an exam of my chest wall and lymph nodes in my arms. Then Dr. C came in and sat down to chat. We talked mostly about my frustrations with hormone therapy. I wanted to know my benefit vs. risk of taking the drug. He punched in some numbers regarding me and my cancer and I found that my benefit really isn't that high. The way I have been made to feel is that those drugs are almost a life and death decision and today I feel totally differently about it. He said while there is a benefit for me it only about a 5% benefit over 10 years. Honestly that number isn't that high for me to go back to feeling so crappy each and every day, of course I could be one of those 5 women who pass away from breast cancer because I didn't take the hormone therapy drugs. For now I am going to continue my drug holiday and it will probably be an extended drug holiday but I do know I will never go back on Tamoxifen, there were too many side effects for me and some more series than others. I asked about taking 10mg of Tamoxifen instead and he said the same thing as my other doctors and that is 10mg has not been studied. He said he has one patient who takes 10mg because she cannot handle the side effects for 20mg however he cannot say if she is benefiting from it or not but it is something she chooses to do. While I wanted to consider this lower dose I really don't want any side effects from it especially if it isn't doing any good at the lower dose anyway. I also asked him if I received any benefit from Tamoxifen since I only took it for a year and 5 months and he said absolutely. He said there is a benefit to any amount however they would like you on it for 5 to 10 years.
In the future I might decide to try the ovary suppression injections and see how I handle them and then possibly try one of the aromatase inhibitor drugs. I was so hoping my hormone levels would have still showed post menopausal so I could just try these drugs without having to suppress my ovaries. I do want to at least try it sometime down the road because if my cancer every comes back I want to know that I tried everything available to me. I know if I don't like it then I can just chose not to do it and the injection that puts you into menopause wears off after a month anyway so I really have nothing to lose but right now I am not sure I even want to do that. I will continue to think about it and if/when I am ready to give it a try he said to call and make an appointment, otherwise he told me that he wants to see me every three months for now and all we will do is an exam and talk about how I feel (I made my next appointment but pushed it out 4 months, just to give me some more time). He said he won't be doing any blood work because that really isn't any indication of the cancer coming back or not. He also said no to pet scans just like my previous doctors. He said if it comes back it doesn't matter when you find it, it is incurable either way and the survival rates are the same. Also with my type of breast cancer being lobular it is very hard to find on imaging anyway unless it is very large. That is the reason all the imagining I initially had didn't show it in my lymph node but it was there and it was quite large at 1cm. With lobular it grows in a single row of cells and branches out in a web like pattern. It is very hard to detect and when most women find it, it is usually quite large. I am okay with not having any pet scans because I can only imagine the anxiety they would give me. He said my kind of cancer usually spreads to the stomach and not the usual, brain, bones or liver like ductal breast cancer does. He said if I have any unexplained pain that doesn't go away after two weeks then call him and he will check it out. It was nice getting this second opinion because everything was reiterated and exactly the same as my other oncologist who I really like. The only difference with this appointment is that he could help me get some statistics about my benefit of the hormone therapy drugs that my other doctors could not.
The University of Utah ordered all of my tumor slides from Ogden prior to my appointment and conducted their own pathology test and they have decided to down grade my stage to a IIB instead of a IIIA. While this wouldn't have changed the course of my treatment in any way it sure helps me mentally to know that I am a stage II and not a stage III. He said he doesn't feel the other pathologist did anything wrong, however he said he trusts his pathologists more and they chose to look at my tumor differently. He explained it and while I cannot explain it with words, he actually drew on paper how they came to that conclusion. Either way it doesn't matter but it does make me feel better.
Overall I am happy to be at one of the best hospitals in the country and look forward to continuing my care with them. Another easy decision for me to change doctors is that my current oncologist is no longer on my insurance. I am not sure how that works if I wanted to stay with them. I can't imagine really liking your doctor and not just any doctor but your medical oncologist only to not be able to go to them anymore. I think the timing of all of this is a sign for me that I have made the right choices going forward.
For now I am going to go and live my life and not let the decision that may or may not lie ahead consume my time of feeling so good like it has the past 4 weeks since I quite Tamoxifen.
Friday, December 16, 2016
Sunday, December 4, 2016
"I AM NOT IN CHEMOPAUSE ANY LONGER"
I can hardly believe it, my hormone test I had last Monday on November 28th shows that I am no longer menopausal. My doctor called me last Friday, December 2nd with the results. I do not know how I feel about this. I know they kept telling me that this could happen but I didn't believe them because of how bad my menopausal side effects were. Now I know why on my "Tamoxifen holiday" my hot flashes are gone and have been replaced by a little tiny warm flush that most of the time I don't even notice.
I had this same test at the end of July which still showed menopause and now it doesn't. The levels have climbed so high in the last 4 months. While this would be good news for any other woman dealing with cancer to come out of "chemopause" after almost 2 years (it was 2 years ago on December 15th that my cycle shut down), for me this is not good news at all. Because my tumor was 100% percent estrogen receptor positive (meaning it used the estrogen in my body to grow) the doctors are telling me that we have to eliminate/ reduce the estrogen in my body. This is also bad news because when they called me with the results on Friday she said the only option for me is to go back on Tamoxifen. I started crying, I do not want to go back on that drug. Even with my ovaries "waking up" and my hormone levels returning to normal over the course of the last 4 months my hot flashes not once subsided nor did any of the other bothersome side effects. Of course there are other options for me to shut down my ovaries temporarily and also permanently to eliminate the amount of estrogen and also to be able to take an armomatase inhibitor blocker.
I was so hoping my levels would still show menopause and in fact I knew they would so when she gave me this news, I was completely shocked. I know now that my hot flashes were being kept so strong from the Tamoxifen. I was hoping by being on a drug holiday it meant that my body has transitioned itself and had gotten used to menopause and that naturally my hot flashes have subsided. Now I know the reason for not having hot flashes and it scares me so bad. It scares me for many different reasons. Estrogen running full force through my body can make my cancer come back but on the other hand I feel like a normal person again. I know that no matter which way I chose to go from here I will have to go through the miserable hot flashes yet again because I would never dare take any kind of estrogen therapy like most menopausal women can take to help ease the symptoms.
I get to continue my drug holiday through the end of December. I see my new doctor at Huntsman on the 15th. I am so anxious for this appointment. I am hoping he can help me by giving me some statistics should I never go back on these blockers. For some reason they cannot give me any information at my current oncologists office as to a percentage of benefit for taking the blockers. In a way I don't know if it even matters. The more time that passes by feeling absolutely great, the more I am thinking of doing nothing as far as taking any more medications. I still want the 2nd opinion however before I make my final decision. I can't believe how much my life has turned around just from stopping this drug and of course my hormone levels coming back have the majority to do with how good I feel. I am 100% completely myself again after 2 freaking years!!! The only side effect that I feel lingering from chemo now is just the arthritis in my ankles. It started the May after I finished chemo in 2015 but everything else is gone, completely gone! I never in a million years ever expected to feel this great again. I have been praying for so long to get some relief and now here it is in front of me. Do I take this as an answer to my prayers? Do I stay off of these drugs that were making me feel so lousy? Am I sealing my fate as to how I am going to die? There are so many questions but I have to believe and I do believe that God is in control and I will die when and how I am supposed to no matter my decision. I did do everything that was suggested to me when I was diagnosed, I chose to do a bilateral mastectomy so I didn't have to worry about cancer in the other breast, I completed 4 A/C cycles, 4 dose dense Taxol cycles and I can't even remember how many weeks of radiation. Each of those was so very hard and there were many times when I almost quit chemo, I honestly don't know how I pushed through it. Radiation was very hard too and I almost cut that short too but I didn't. I have completed almost a year and a half of Tamoxifen which I suppose it better than nothing at all.
Nothing is ever easy for me through this cancer journey, there is always something that comes up to make it 10 times harder and here I am yet again. I need to go to the store and stock up on feminine hygiene products since I threw them all out over a year ago, just in case my period comes back. In fact my doctor said it will more than likely come back and I need to be prepared and keep something with me just in case. I can't believe I will probably get my period again and I am still in absolute shock that my ovaries have woken up especially since last December when I had a pelvic ultrasound she couldn't even find my one ovary, it had shriveled so much.
I have a lot of decisions to make in the next while. I may chose to try the injections to shut down my ovaries temporarily (it shuts them down for about 3 months at a time) and see how I feel and then possibly try one of the A/I blockers. If it isn't too bad then I will do another 3 months and try up to all 3 of the drugs to see if I can tolerate one better than another. I do know that if they make me feel anything like the Tamoxifen that I won't do it because my quality of life is so much more important than my quantity of life. I want to be able to enjoy my life and feel good and at least participate in things that I have been having to sit out for so long. If I can tolerate the A/I blockers along with the ovary suppression then I may decide to just get my ovaries taken out permanently and not have to worry about it.
For now I am enjoying each day and night. It is amazing how good sleep can make you feel and act. I feel like I am no longer on edge most of the day. I am so happy and cheerful because I know these days won't last forever and while I am in them I must make the best of them and not take them for granted. I love that I am at a comfortable temperature now. I am not tossing clothes back and forth every few minutes which drove me crazy. Of course I still get cold and hot but like a normal person now. I can think again with a 100% clear mind, or at least it feels like 100% compared to how I have been thinking the last two years. I don't even know if I felt this normal before cancer treatments. It has been so long.
Again I ask myself, is this the answer to my prayers??? I would like to think that it is. I will continue to pray for clarity as these decisions are all in front of me as to what to do. It is so hard to think about going back to my LIVING HELL just to get more years here on this earth.
I had this same test at the end of July which still showed menopause and now it doesn't. The levels have climbed so high in the last 4 months. While this would be good news for any other woman dealing with cancer to come out of "chemopause" after almost 2 years (it was 2 years ago on December 15th that my cycle shut down), for me this is not good news at all. Because my tumor was 100% percent estrogen receptor positive (meaning it used the estrogen in my body to grow) the doctors are telling me that we have to eliminate/ reduce the estrogen in my body. This is also bad news because when they called me with the results on Friday she said the only option for me is to go back on Tamoxifen. I started crying, I do not want to go back on that drug. Even with my ovaries "waking up" and my hormone levels returning to normal over the course of the last 4 months my hot flashes not once subsided nor did any of the other bothersome side effects. Of course there are other options for me to shut down my ovaries temporarily and also permanently to eliminate the amount of estrogen and also to be able to take an armomatase inhibitor blocker.
I was so hoping my levels would still show menopause and in fact I knew they would so when she gave me this news, I was completely shocked. I know now that my hot flashes were being kept so strong from the Tamoxifen. I was hoping by being on a drug holiday it meant that my body has transitioned itself and had gotten used to menopause and that naturally my hot flashes have subsided. Now I know the reason for not having hot flashes and it scares me so bad. It scares me for many different reasons. Estrogen running full force through my body can make my cancer come back but on the other hand I feel like a normal person again. I know that no matter which way I chose to go from here I will have to go through the miserable hot flashes yet again because I would never dare take any kind of estrogen therapy like most menopausal women can take to help ease the symptoms.
I get to continue my drug holiday through the end of December. I see my new doctor at Huntsman on the 15th. I am so anxious for this appointment. I am hoping he can help me by giving me some statistics should I never go back on these blockers. For some reason they cannot give me any information at my current oncologists office as to a percentage of benefit for taking the blockers. In a way I don't know if it even matters. The more time that passes by feeling absolutely great, the more I am thinking of doing nothing as far as taking any more medications. I still want the 2nd opinion however before I make my final decision. I can't believe how much my life has turned around just from stopping this drug and of course my hormone levels coming back have the majority to do with how good I feel. I am 100% completely myself again after 2 freaking years!!! The only side effect that I feel lingering from chemo now is just the arthritis in my ankles. It started the May after I finished chemo in 2015 but everything else is gone, completely gone! I never in a million years ever expected to feel this great again. I have been praying for so long to get some relief and now here it is in front of me. Do I take this as an answer to my prayers? Do I stay off of these drugs that were making me feel so lousy? Am I sealing my fate as to how I am going to die? There are so many questions but I have to believe and I do believe that God is in control and I will die when and how I am supposed to no matter my decision. I did do everything that was suggested to me when I was diagnosed, I chose to do a bilateral mastectomy so I didn't have to worry about cancer in the other breast, I completed 4 A/C cycles, 4 dose dense Taxol cycles and I can't even remember how many weeks of radiation. Each of those was so very hard and there were many times when I almost quit chemo, I honestly don't know how I pushed through it. Radiation was very hard too and I almost cut that short too but I didn't. I have completed almost a year and a half of Tamoxifen which I suppose it better than nothing at all.
Nothing is ever easy for me through this cancer journey, there is always something that comes up to make it 10 times harder and here I am yet again. I need to go to the store and stock up on feminine hygiene products since I threw them all out over a year ago, just in case my period comes back. In fact my doctor said it will more than likely come back and I need to be prepared and keep something with me just in case. I can't believe I will probably get my period again and I am still in absolute shock that my ovaries have woken up especially since last December when I had a pelvic ultrasound she couldn't even find my one ovary, it had shriveled so much.
I have a lot of decisions to make in the next while. I may chose to try the injections to shut down my ovaries temporarily (it shuts them down for about 3 months at a time) and see how I feel and then possibly try one of the A/I blockers. If it isn't too bad then I will do another 3 months and try up to all 3 of the drugs to see if I can tolerate one better than another. I do know that if they make me feel anything like the Tamoxifen that I won't do it because my quality of life is so much more important than my quantity of life. I want to be able to enjoy my life and feel good and at least participate in things that I have been having to sit out for so long. If I can tolerate the A/I blockers along with the ovary suppression then I may decide to just get my ovaries taken out permanently and not have to worry about it.
For now I am enjoying each day and night. It is amazing how good sleep can make you feel and act. I feel like I am no longer on edge most of the day. I am so happy and cheerful because I know these days won't last forever and while I am in them I must make the best of them and not take them for granted. I love that I am at a comfortable temperature now. I am not tossing clothes back and forth every few minutes which drove me crazy. Of course I still get cold and hot but like a normal person now. I can think again with a 100% clear mind, or at least it feels like 100% compared to how I have been thinking the last two years. I don't even know if I felt this normal before cancer treatments. It has been so long.
Again I ask myself, is this the answer to my prayers??? I would like to think that it is. I will continue to pray for clarity as these decisions are all in front of me as to what to do. It is so hard to think about going back to my LIVING HELL just to get more years here on this earth.
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