Officially out of "chemopause" and a visit to Huntsman Cancer Institute

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.