Hormone therapy

Hi ladies

I was recently diagnosed, 5 weeks ago, with Stage 1 Grade 1A (Have I got that the right way round?! Too much to take in!!) Endometrial Adenocarcinoma. 

Due to my age, 32, and the fact we don't have children yet, we are trying the hormonal therapy route first rather than opting for a hysterectomy.

I have been prescribed 400mg of Provera a day. 

My question is, is spotting and back pain normal whilst being on this? I don't want to be a drama queen and run to the doctors for little things when I don't need to but my hormones are all over the place and I'm over thinking and worrying about everything xx

  • Hello

     Welcome to the group, though I'm very sorry for the reasons you find yourself here. I've no experience of this as I was diagnosed post menopause, but I do know that has a wealth of knowledge on hormone therapy. Hopefully she'll pop in soon to share some of her experiences with you. There are other ladies in a similar position to you so I'm sure you'll get quite a few responses. My gut reaction is that you're not being a drama queen at all. Of course you're worried and our mantra here is always "when in doubt get checked out" - so a quick call to your GP or to your clinical nurse specialist will hopefully set your mind at rest. Please let us know how you get on. Sending yo a supportive, gentle hug and lots of good wishes that your treatment goes well x

  • *Waves to da Faerie*

    Heya Kiki, 

    Welcome to the forum though I'm sorry you have to be here.

    The good news, well it's kinda good news, is that spotting and back pain are perfectly normal at the moment.

    The Provera is basically telling your body that it doesn't need an endometrial lining at the moment. So any lining that you do have, it's getting rid of. For some people this comes as a bit of a flood with large clots as everything is got rid of quickly. For others it's a slower process that's more spotting for a prolonged period. Then there's everything in between.

    I was an in between. I started off really heavily and it slowly petered out to a prolonged spotting and pink discharge. So the pain in the small of your back is more than likely period pains as that's what the Provera is doing, giving you a big period to get rid of everything and then it will settle down.

    Just to check, are you taking 200 in the morning and 200 in the evening? It's more effective, according to my Dr, if you split your dose into 2.

    Hope that helps. 

    Lass

    Xx

    I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

  • Thank you both. 

    Yes Lass, I am on 2 lots of 200mg Provera. It's not been a pleasant few weeks, my mood swings have been unreal but I think Its starting to settle down now. 

    I kinda thought it was normal but it's nice to have a bit of reassurance from people who have experienced it. 

    I hope you are both keeping well 

    Kiki xx

  • Heya, 

    Good good. 

    Glad the mood swings are settling down. I don't think I suffered/suffer from them. But I did end up with alopecia from the progesterone, so lost about 50% of my hair. But I think my thyroxine probably helped that side effect come on. A few folks have mentioned mood swings, but so far I'm the only one with hair loss. Long may that continue!

    As for keeping well.... Not even a bit. Lol. But unrelated to the endometrial crap. 

    Lass

    Xx

    I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

  • I can sympathise with the hair loss. I have PCOS and at 18 I too lost about 50% of my hair. It never came back through Disappointed so fingers crossed that's not a side effect I will suffer from!! 

    Thank you for your help and you take care of yourself xx

  • Hello Kiki, 

    I hope you are well.

    I came across your post while trying to find women that tried the Progesterone hormone therapy. 
    I had the same diagnosis as you. I am currently on 600mg per day.

    I see your post was from 2 years ago - I wondered how did you get on with the hormone therapy. Did it work ok for you?
    May I ask if hysterectomy was recommended following the fertility plan ? 

    Were you recommended further progesterone on an ongoing basis for future risk management? 

    I would be so grateful for your reply as I can’t find anyone else doing this treatment. 

    Thank you,

    Lollie

  • Hello Lass, I hope you are well.

    I came across your post while trying to find women that tried the Progesterone hormone therapy. 
    I had the same diagnosis as you. I am currently on 600mg per day.

    I see your post was from 2 years ago - I wondered how did you get on with the hormone therapy. Did it work ok for you?
    May I ask if hysterectomy was recommended following the fertility plan ? 

    Were you recommended further progesterone on an ongoing basis for future risk management? 

    I would be so grateful for your reply as I can’t find anyone else doing this treatment. 

    Thank you,

    Lollie

  • Hi Lollie

    Unfortunately the progesterone treatment didn't work for me. 

    I was on it for 6 months with no change to the cancer so I had no option but to have a hysterectomy. 

    How are you finding it? My poor hubby didn't know if I was going to kiss him or kill him when I woke up!! It really messed with my moods. 

    How long do they plan on keeping you on it?

    I'm sorry my experience isn't more positive for you. I hope you have a better outcome x

  • Hi Kiki, thank you so much for your reply. 
    It is nice to finally meet someone that has been through this. 

    I’m really sorry to hear that the treatment did not work for you. How are you now? 

    Do you mind me asking if there was any disadvantage from waiting 6 months on the treatment before getting back he hysterectomy?

    My surgeon feels like its not working for me either, after just 6 weeks. I feel a little short changed, I would like to have given it more time. But he’s discouraging me. He wants me to get another scan next week to see. 

    He has actually terrified me by saying the cancer may have gotten bigger. But from what I’ve been told usually its no change rather than more growth while taking this treatment. Do you know if this is the case?

    I’m trying to be hopeful but I’m now just wondering what’s the point. Every ache and pain I get, I now convince myself its the cancer spreading. 


    I was absolutely fine last week but after speaking to the surgeon he has planted these ideas in my head and now I’m freaking out mentally with every ache and pain. Xx