October 29th was my last Herceptin, I thought that day was never going to arrive as I had been on it for a year but it did and I was the happier person on earth. I thought my life was going to be kind of back to normal with minimal doctor's visit but was I wrong!!. Since October 29th I think I have been on a doctors office almost every day, want to give the details as my case seems to be a rare one and might help other people.
First my hip had still being bothering me since the long walk, and I have been trying running for the past month with some discomfort. Dr Chen asked me how it was and when I told her it was still bothering me she told me that she wanted to do a full body nuclear bone scan, which I did last week and the results were ok. That was a relief but I was soooooo stress about this test and the results!.
The day after Herceptin Dr Chen called me and she said that the final blood work had arrived and my estrogen levels were really high and she wanted to repeat the blood test, first to check if I was pregnant and second to make sure the lab had not mistaken them. It could have been comical being pregnant now when I could not afford to be at all!. Went back on Wednesday and she called me on Thursday saying that I was not pregnant (we knew that....) and that levels were the same and she was really concerned, she wanted me to see an Endocrinologist the following day and she had already spoken to him and he was waiting for my call. I went to see him on Friday morning and he said that the norm is that when you are on Tamoxifen the estrogen are normally not measure as they are normally high, however they had never seen the levels of estrogen that I have (he had checked with several other endocrinologist). When you have your period the levels of estrogen are normally around 50, when you ovulate around 300 and if you are pregnant they might go a bit higher. Well mine are at 1,400 and they cannot say if that high levels are from Tamoxifen or for another reason.
Now to know what other reason could affect estrogen levels you need to have more test. First a full hormonal blood test which come up ok except the estrogen. Then I had a full ultrasound of ovaries, kidneys, liver, glands....and they saw I have got a large cyst of 5 cm on my left ovary and another large follicle or cyst on my right ovary. They are cysts and not mass or tumor so they are 100% ok is not cancer and it is quiet likely that the high levels of estrogen are producing them so now I have to see my Ob/Gyn this week to see if they will take out that cyst or they will just monitor it.
Then after the ultrasound I had several conversations with Dr Chen about how to approach this. Both her and the Endocrinologist had spoken to several other doctors, had even consulted with Stanford and NONE has got any medical records of what will happen to a women's body with that levels of estrogen. They can see there is nothing wrong with me that will make that levels of estrogen and they need to found out why they are that high. She is very confident that even at high levels Tamoxifen is protecting me, however they are concerned any other harm that it could make to my body. SO I have stop taking tamoxifen yesterday for 4 weeks, after that they will test me again and see if the levels of estrogen are high or not, that way they want to see if it is Tamoxifen that is reacting on my body or if it is my body just generating that level of estrogen. After that test we will have to make some decisions but Dr Chen has already told that I might have to consider to take my ovaries out, I guess we will cross that line when it comes..
So mentally I am a bit of stress as for the past 18 months I have been talking some type of drug to prevent my cancer of coming back. Now I am taking NOTHING and the thought of it makes me very nervous!!. If anyone has had any issues with estrogen levels, similar to me please E-mail me...