Hormone therapy treatment

Hi Angela1963  I am sorry to hear you are having a rough time on the hormone therapy. I was suffering with very heavy bleeding myself, before my womb cancer was diagnosed, and I was put on Provera to stop the bleeding. It didn’t help at all unfortunately and in the end I had a hysterectomy. I know how awful you must be feeling right now. The lack of sleep from the night sweats will certainly be making you feel drained as well. 

I know you said you have an appointment in October, but if the discharge is that heavy, then I would be asking to be seen sooner. Bless you, you have got through the menopause and not expecting to go through all this with pads again.
You mention as well that your ankles are swollen. Is that something that has happened before or is that something new. Please speak to your GP about that as well. 

Please don’t suffer in silence, do let the hospital or your GP know that this is not working for you. Let us know how you get on. 

Thank you Chelle

i was debating about going to see my GP if i can get an appointment, but wasnt sure if these symptoms were normal when on Provera. Or waiting till my appointment which hopefully should be in the next month. my ankle does swell a little normally but not like it has been on Provera, i did read it was a side effect. but thank you for your comments and i  wish you well, as i see you have been through it in the last 15 years. i will update when i decide what to do, all the best

Angela

Hi Angela

I am sorry to hear of your diagnosis of endometrial cancer back in April.

It must have been tough to hear that a hysterectomy was not the best option at the time due to your medical issues. Ladies in these circumstances are often offered the hormone treatment and it can work well for some. However as you are struggling with it I would recommend discussing it with your doctor to see whether the dose could be adjusted or whether there is a different form of hormone treatment that could be used. 

The side effects sound really unpleasant and I can understand that it is getting to you. 

I would suggest that you maybe sit down and make a list of the effects of the current medication and a list of questions to put to the doctor before you have the appointment so that the things that are important to you are addressed first. I find my mind tends to go a bit blank when dealing with these appointments. i have often taken in a list of questions and they have never minded. 

I would maybe think of something like this..............

1. The hormone treatment is not working for you due to the unpleasant side effects. Is there an alternative hormone.

2) Could the current dose be adjusted or is there something that could be prescribed to lessen the symptoms

3) The discharge is getting worse - is this to be expected on the treatment or could it be a sign the treatment is not working as well as it should.

4) Could the warfarin (in particular- and maybe other medication) be affecting the amount of discharge.

5) Is the not sleeping and fatigue a known side effect of the medication or could it be due to the original diagnosis

6) What is causing ankle to swell up. Is it connected to provera. is this dangerous. Does it need treatment. Could it be connected to any other medication that you are on.

7) If warfarin is an issue with having surgery- could it possibly be changed to a different type of anti coagulant temporarily to allow surgery to happen. (I had anti coagulant injections after surgery and maybe they would be an option)

8) It sounds like your diabetes is under control so perhaps they could explain how this is a risk to surgery. We are not medically trained on here but my understanding is that all surgery is a weigh up between risks and benefits so no harm in asking. 

9) There are many ladies on here who have been on the heavier side who have been offered surgery. Being overweight is not easy and losing weight is not a simple thing for most people. I wonder whether it is a combination of the factors/ medications etc is the reason why it was suggested to try hormone treatment first. From the doctors side they may have felt that it was worth trying the hormones first. I would imagine that trying to lose any weight while having existing medical problems beyond your control and also being on the provera would make losing weight much more difficult. 

10) I would then be suggesting that the provera treatment does not seem to be working for you with all the side effects and that you would rather go for the hysterectomy and to discuss the risks and anything that can be done to mitigate them. I see you have had surgery before successfully so maybe this is something to emphasize. 

11) Is there a risk to being on the hormone treatment and having repeat biopsies. Is the hormone treatment the best option for your stage and grade. If the hormone treatment is affecting your quality of life- under what circumstances would they say enough is enough and offer the surgery. If the current consultant does not want to do the surgery- would an alternative opinion be helpful.

 If the hormone treatment is successful for 75% of people- that is good but perhaps you are unfortunately the 1 in 4 where an alternative needs to be looked into. You have done nothing wrong- it sometimes is that a treatment, worth trying initially may not be the best option for you. I would suggest not waiting until October but to contact them now and explain all the side effects and how it is making you feel. I am sorry that you are having all of these unpleasant effects and hope that they can consider an alternative treatment or the hysterectomy that you want. The main thing is to sit down with them, look at all the risks and benefits so you can make the best informed decision with them, that works for you. 

if talking it through first would help, then please do give the Support Line a call.

The questions are only an idea of what I might be asking and you may have different ones but hopefully they may be a starting point. I have found asking direct questions helps a lot.

Good Luck

Jane

Hi Angela,

I am also on the Provera treatment as my consultants think that my weight and a hernia makes the hysterectomy risky. I haven’t had nearly as many side effects as you -  just fatigue really. Also due a biopsy in October which I am not looking forward to at all. Jane has given you a very comprehensive reply below and, as she says, you may be one of those that this treatment doesn’t suit. I believe that the results can be quite rapid so maybe worth hanging on to see if it’s effective or not. One thing that I have not had a satisfactory reply to is why they cannot do a vaginal hysterectomy if abdominal surgery is risky. They just told me they ‘don’t normally do that’.

Hi Angela 1963,

If you click on my bio you will see my story I was on a very large dose of medroxyprogesterone 10mg tablets five tablets 3 times a day plus thee provers coil I don't know the dosage of that sorry, I was put onto an other hormone but it caused side effects within one day heart palpitations every 5 to 10 minutes I thought I was going to take a heart attack so stopped it the name of that one is MAGACE - Megestrol which is a man-made version of the human hormone progesterone. It namely treats breast cancer and endometrial cancer by affecting female hormones involved in cancer growth. It increases weight gain by increasing appetite, I was worried about that part as I am over weight diabetic and high blood pressure plus disabled with a multiple complex medical history.

Anyway I was informed that I was too high risk for robotic surgery so I set my self the task of getting my blood sugars in order which I did and loss weight believe me it can be done I started out at 160.9kg and ended up at 140kg nearly three stone lighter within the year so it can be done you just need the support ask about seeing the oncology dietitian mine was great plus i just cut out all the biscuits ice cream and went to Morrisons Sunflower and pumpkin seed bread £1.45 and went to Asda or Morrisons for WW fresh low calorie dinners the frozen sweet sour with a small portion prawn crackers become sweet sour Saturday Cottage Pie became Sunday's dinner with 1 slice of pumpkin seed bread the Red Thai with 1 slice nan bread and bulking up with veg was great made me feel fuller, unfortunately she couldn't get me off my breakfast which was choco hoop with half banana and skimmed milk. Believe me if I can do it  you can too, Yes at times it was hard I even fell out with hubby about a biscuit told my oncologist about it and he laughed but in the end I wanted Cancer buddy out no matter what so I lost nearly 3 stone within a year and on the 24 May 2024 two years later I had my robotic surgery and my biopsy came back as no change due to the hormone treatment stage one grade 1 yes there were problems during the operation but cancer buddy is out. I wish you loads of luck and don't forget be kind to yourself xx

Hi

I wonder what stage your cancer is? I was diagnosed stage 4B after my GP but my symptoms down to the menopause and gave me HRT which fed the tumour! I had lfe threatening bleeding and was started on chemo for 5 cycles then had a robotic hysterectomy.I had steroid induced diabetes and a BMI of 35 but at no point was that ever made an issue of. The diabetes was managed and the BMI what it was. If your symptoms make you feel this bad I would be ringing round to try and find a solution. You shouldn't have to put up with this in this day and age and I get really frustrated when I get fobbed off.

Hello Holly

I am  too not looking forward to another Biopsy, however i have decided to hang in there and wait for my appointment and bring up my concerns regarding Provera. Maybe the results will be good.  Hope your Biopsy goes well

Angela

hello

and thank you for your reply, i am going to bring up all my concerns when i have to go back for my biopsy, I was told my cancer is only at stage1 a/b  but i also have a cyst on my left ovary, which they said was ok. i dont think its so much my weight or diabetes, but other issues which make the surgery risky. But at the time Hormone treatment when he said about it sounded ok , he just didnt go into the negative side

Hello Wilma

Thank you for your reply, i am going to bring up all my concerns when i have to have my biopsy. If the results are not as expected i am going to ask for a hysterectomy as i dont want to continue with the way things are. I am currently on400mg a day of Provera, without whatever the coil is throwing out. I dont think its my weight which is really the issue i am 95kg although still overweight, and my diabetes is under control although my blood sugars do have there moments and go sky high for no reason and then drop back again. But i have other medical issues , i lost my leg 10 years ago due to a blood clot and am in a wheelchair but i have poor circulation in my remaining leg and suffer with neuropathy due to an operation in 2018 for another blood clot, hence on warfarin. But hope all goes well for you.

Angela

Hi, it sounds as though you have been through the mill but hang in there. I am having a Mirena coil fitted in a couple of weeks due to the fact I also have co-morbidities like you. Lots of other conditions which make surgery risky for me - at least at the moment. I am trying hard to lose weight and will also be taking Metformin to control the diabetes too, which also helps inhibit endometrial cancer - apparently. Those side effects sound dire though - and I think you should speak to your team to get to the bottom of what's going on.

The hormone therapy can work well for some women, particularly if the take Metformin alongside it to control blood glucose. I am hoping I won't need surgery but if the treatment doesn't suit me, I will go for the surgery at the point I am generally fitter.

Good luck with sorting out these issues!