Question About Bioidentical Hormones

kathijr
kathijr Member Posts: 11
edited March 2014 in Uterine/Endometrial Cancer #1
Well, my hysterectomy is scheduled for August 20(I have Stage 1 uterine cancer with grade 2 cells) and I must say that I still feel ambivalence, fear, and a bit blue. It's all been so overwhelming, especially my five hour appointment at the hospital on Monday! I must say that I was happy that all my labs and tests came out fine and many of the people I met with said I was their healthiest patient (except for the surprise cancer, that is.) It's probably not often that the gynechology/oncology clinic gets a patient who has no physical complaints whatsoever, but has a life-threatening illness.

I was not expecting warm and fuzzy from my surgeon (she comes highly recommended and is very competent and our cancer center is in the top 50 in the nation), but I was as eager to talk about my life after the surgery as they were to talk about the surgery. My gynechologist told me that I would be able to continue my bioidentical hormones soon after the surgery and the surgeon and her assistance said no way! Needless to say, I was quite upset because I felt like my youth and sex life would come to an end and then they told me I needed counseling, which I thought was a bit insensitive. After all, they have never been through this trial personally (they are both women.) In any case, am I nuts for wanting a good quality of life after my surgery---a desire to have sex, strength to continue my fitness routines and feel good about my body, skin that is not sagging and aging, a positive mental attitude, etc.??

The more I thought about them wanting to deny me my bioidentical hormones, the less well it settled with me. I checked some bloodwork I recently had done and my estrogen level was only 14 (which is very low according to information from the internet and I've been told it was low before I went on the hormones---I am a very healthy and strong 56 years old and most people think I'm in my early 40's and I'm married to a younger man) and my testosterone levels were also low (and they added a little bit more testosterone to my prescription and it made a huge difference in quality of my sex life.)

Should I call my gynecologist and talk to her about this? I hate to put her in the middle, but it's so difficult getting conflicting information. I know that I'm probably "putting the horse before the cart" but this issue is getting me so down and I need to be strong and positive for the upcoming surgery and dealing with my family's reaction to my diagnosis, etc. I feel very guilty about complaining about this given that I have such a curable cancer (and I should feel grateful for that), but I guess I'm think as much about life as I am about possible death at this point (maybe I'm still in shock.)

Thank you so much for your help.

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #2
    Have your tissue assayed for ER and PR.
    If your cancer is estrogen or progestertone receptive, any bioidentical hormones would be feeding your cancer and you can't have that. When you have your hysterectomy done, insist that they do a tissue assay to see if you are ER+ or PR+, and that will give you your answer. If you have a 'Type 2' ER- / PR- (Estrogen Receptive negative /Progesterine Receptive negative) cell type, you may be perfectly safe taking the hormones. My uterine cancer is Type 2 (ER- / PR-) and I use a hormone cream vaginally with no worries. I must tell you that the most CURABLE of uterine cancers are almost always ER+ / PR+, though. I wish I were ER+ and PR+ !

    I am curious how you could know prior to your hysterectomy that your cancer is Stage 1. That determination is typically done once the lymph nodes are removed and dissected, after the hysterectomy. Likewise the grade of the cancer cells is often changed after all the hysterectomy tissue gets through pathology.

    You definitely want to discuss this with a gynecologic oncologist, not just a gynecologist or just a general oncologist. (((((hugs)))). I was 56 also when I got my diagnosis.
  • upsofloating
    upsofloating Member Posts: 466 Member
    #3
    I also had just turned 56
    I also had just turned 56 when I got my diagnosis. I can certainly relate to your desire to continue with your current quality of life as I was also very physically active as is my husband. However Linda has pointed out some key concerns with continuing your hormone therapy. After the shock subsides -- and this does take some time -- you will be better able to prioritize your concerns and potential routes to follow. Another point Linda made re post surgery staging and full cancer classification will be needed in order to best assess what you are dealing with. So at this point no specific plan can be made. And waiting for all the info indeed is one of the most difficult times to get thru. We all want answers, and we want them now. Meanwhile, enjoy - and maintain - that peak healthy conditioning -- it will allow you to manage everything down the road in the very best of circumstances. Wishing you smooth sailing ahead, Annie
  • bea-mil
    bea-mil Member Posts: 108
    #4
    Hello there
    The fear of menopause is propaganda, to make us scared and to feed us with more drugs. The menopause is natural way of shutting down our reproductive system. And even though it’s coming very instantly due to the surgery, it is really up to us if we will have those symptoms or not. I’m 48 and before the surgery (March this year) my doctor said that I won’t be able to have any hormones (I wouldn’t take them anyway). I was scared of everything you have mentioned. But guess what? No menopausal symptoms whatsoever. I’m “waiting” four months for them to come and fortunately nothing is coming. No hot flashes, no skin sagging (yet?!) no weight gaining, no insomnia – NIL. And believe me your sex life won’t come to the end, you will have the same “sensations” as before the surgery. Do you know that Japanese woman don’t have as much of those symptoms as western woman? I think that must be related to the diet. In their language they don’t even have the expression “hot flashes”.
    Just focus on the cancer and how to go through this disease. There is a chance that you won’t even have any menopausal symptoms like me. Take good care of you, eat healthy diet, exercise and everything will be just fine.
    Smile and be positive
  • kathijr
    kathijr Member Posts: 11
    #5
    bea-mil said:

    Hello there
    The fear of menopause is propaganda, to make us scared and to feed us with more drugs. The menopause is natural way of shutting down our reproductive system. And even though it’s coming very instantly due to the surgery, it is really up to us if we will have those symptoms or not. I’m 48 and before the surgery (March this year) my doctor said that I won’t be able to have any hormones (I wouldn’t take them anyway). I was scared of everything you have mentioned. But guess what? No menopausal symptoms whatsoever. I’m “waiting” four months for them to come and fortunately nothing is coming. No hot flashes, no skin sagging (yet?!) no weight gaining, no insomnia – NIL. And believe me your sex life won’t come to the end, you will have the same “sensations” as before the surgery. Do you know that Japanese woman don’t have as much of those symptoms as western woman? I think that must be related to the diet. In their language they don’t even have the expression “hot flashes”.
    Just focus on the cancer and how to go through this disease. There is a chance that you won’t even have any menopausal symptoms like me. Take good care of you, eat healthy diet, exercise and everything will be just fine.
    Smile and be positive

    Question About Bioidentical Hormones
    Thank you all for your very kind and honest responses. I guess this surgery affects everyone in an individual way---I've read horror stories (the worst thing I've heard anyone say is that they were totally incontinent, had absolutley no sex drive, and had no feelings about anything, good or bad, after the surgery---awful!!) I can only hope that I either have few, if any, symptoms.

    My gynechologist was very surprised by the cancer diagnosis after she did the uterine biposy, especially given that my ultrasound was totally normal and other than a brief episode of bleeding, I had no other symptoms whatsoever. When I met with the gynechologic oncologist, she believed that it was stage one given all of that, but that the grade of the cancer was mostly 2. She did not mention any kind of chemotherapy or radiation, but of course, everything must come out. She did talk about the staging being done after the surgery and that the cancer cells would be tested for estrogen receptivity.

    I feel like my gynechologist, as nice as she is, really sugar coated this entire situation to me. She said that after the surgery, everything would be exactly the same as before---that I could continue with the bioidentical hormones almost right away. She also said that the chance of recurrance was extremely low and that I would not need radiation or chemotherapy. After I started doing more reading, both on the internet and in books, the picture is not that rosy at all. The gynechologic oncologist said there was a possibility that some grade 3 cells showed up on my biposy and in my reading, I've read that these kinds of cells require additional treatment after surgery. It doesn't help that my husband, who is a physician (in another specialty obviously), thinks that this entire thing will be over as soon as I have the surgery (and less importantly, other things about my life)---for me, that is only the beginning of this fight and I could loose my life ---while 80% of women in stage 1 survive, 20% do not

    Is there a list of supplements somewhere that are safe for women with uterine cancer to take? Has anyone ever heard of the supplement Amberen and is that safe? I am not sure how I will feel after the surgery right now. I have obviously been on the bioidentical hormones (I thought those were safer, but apparently not) and when I get off of those suddenly, I'm sure there will be some effect.

    Again, thank you so much for all of your kind and helpful words. I never thought my summer would be this terrible, but your support is great.
  • Songflower
    Songflower Member Posts: 608
    #6
    kathijr said:

    Question About Bioidentical Hormones
    Thank you all for your very kind and honest responses. I guess this surgery affects everyone in an individual way---I've read horror stories (the worst thing I've heard anyone say is that they were totally incontinent, had absolutley no sex drive, and had no feelings about anything, good or bad, after the surgery---awful!!) I can only hope that I either have few, if any, symptoms.

    My gynechologist was very surprised by the cancer diagnosis after she did the uterine biposy, especially given that my ultrasound was totally normal and other than a brief episode of bleeding, I had no other symptoms whatsoever. When I met with the gynechologic oncologist, she believed that it was stage one given all of that, but that the grade of the cancer was mostly 2. She did not mention any kind of chemotherapy or radiation, but of course, everything must come out. She did talk about the staging being done after the surgery and that the cancer cells would be tested for estrogen receptivity.

    I feel like my gynechologist, as nice as she is, really sugar coated this entire situation to me. She said that after the surgery, everything would be exactly the same as before---that I could continue with the bioidentical hormones almost right away. She also said that the chance of recurrance was extremely low and that I would not need radiation or chemotherapy. After I started doing more reading, both on the internet and in books, the picture is not that rosy at all. The gynechologic oncologist said there was a possibility that some grade 3 cells showed up on my biposy and in my reading, I've read that these kinds of cells require additional treatment after surgery. It doesn't help that my husband, who is a physician (in another specialty obviously), thinks that this entire thing will be over as soon as I have the surgery (and less importantly, other things about my life)---for me, that is only the beginning of this fight and I could loose my life ---while 80% of women in stage 1 survive, 20% do not

    Is there a list of supplements somewhere that are safe for women with uterine cancer to take? Has anyone ever heard of the supplement Amberen and is that safe? I am not sure how I will feel after the surgery right now. I have obviously been on the bioidentical hormones (I thought those were safer, but apparently not) and when I get off of those suddenly, I'm sure there will be some effect.

    Again, thank you so much for all of your kind and helpful words. I never thought my summer would be this terrible, but your support is great.

    Your Question
    I am with Linda, get your surgery and have assays done and ER PR status done. Then make a decision. I had breast cancer 11 years ago and instant menopause. I adapted well; the hotflashes were tough but went away with time. I still maintain my sexuality. I would concentrate on getting through this one step at a time. The most important thing is to do what will prolong your life. You can live a happy life without hormones. I've done it!
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #7
    Songflower said:

    Your Question
    I am with Linda, get your surgery and have assays done and ER PR status done. Then make a decision. I had breast cancer 11 years ago and instant menopause. I adapted well; the hotflashes were tough but went away with time. I still maintain my sexuality. I would concentrate on getting through this one step at a time. The most important thing is to do what will prolong your life. You can live a happy life without hormones. I've done it!

    being healthy and having cancer
    I share your amazement about the cancer diagnosis. I, and many others here, were surprised when that word was uttered. I had no symptoms or risk factors for the rare and aggressive stage 3 grade 3 cancer, uterine papillary serous carcinoma (UPSC), I now refer to as "Chester". It attacked suddenly and viciously nearly 2 years ago and I live a healthy and full life after surgery and chemo. I do all the activities I used to do and more!!!

    I recommend staying positive with an attitude that you are well and will continue to enjoy all that your marriage and life has to offer. Try not to get too far ahead of yourself with worry - this just gets me frantic and sick.

    Best wishes. Mary Ann
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #8
    daisy366 said:

    being healthy and having cancer
    I share your amazement about the cancer diagnosis. I, and many others here, were surprised when that word was uttered. I had no symptoms or risk factors for the rare and aggressive stage 3 grade 3 cancer, uterine papillary serous carcinoma (UPSC), I now refer to as "Chester". It attacked suddenly and viciously nearly 2 years ago and I live a healthy and full life after surgery and chemo. I do all the activities I used to do and more!!!

    I recommend staying positive with an attitude that you are well and will continue to enjoy all that your marriage and life has to offer. Try not to get too far ahead of yourself with worry - this just gets me frantic and sick.

    Best wishes. Mary Ann

    Good Advice Mary Ann
    I totally agree that we need to keep a positive attitude. It has been almost two years since my diagnosis also. October 9, 2008 when those first cancer words were uttered. I have done so many things since that time, that I probably would have put off for later years. Time is precious. We need to enjoy today. My marriage which was always good has gotten so much stronger. My husband has amazed with me with his concern and support. Support from family and friends I did not even know I had have been so over whelming. I continue to thank God for the many Blessings he has given me. Everyday I say "This is the day the Lord has made, Let us Rejoice and be Glad." In peace and caring.

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