treatment with progesterone implant

Hi Skippy, I can understand your anxiety about the cancer not being removed. My hysterectomy had to be delayed by two weeks due to high sugar levels and all I could think about was this nasty, toxic .evil thing growing in my body. Luckily it was removed whole in its capsule and is a grade 1a . FNCLCC grade 2. With lymphovascular space invasion. It is a leiomyosarcoma which is very rare and very aggressive so I have been referred to the sarcoma consultant at the Christie hospital on the 7th of September. I think I've read that the surgery to remove the tumour or do a hysterectomy could be done with an epidural anaesthesia. It might be worth asking about it. At the end of the day the doctors will give you the best treatment they can. Deb

Thanks for replying Debs.  Sorry to hear that your procedure wasn't straightforward.  Well done on getting your head round all of the technical jargon!  I hope the meeting in September goes well.

We did talk about an epidural, but they seemed to think that wouldn't be possible as things wouldn't be 'lose enough' as  I haven't given birth, but I'll ask for more information on that.

I have spent today writing a huge list of questions about the pros and cons of the implant for the next meeting.  There seem to be a lot of cons, like increased risk of blood clots, heat attack, AF, raised blood sugars , other cancers developing ...  

I would like to trust the doctors but it seems they go down one path, tell me the plan, but have to start all over again when it turns out that that won't work.

I’ve been taking oral Provera for 3 years now and had the mirena coil implant in December last year. My reasons were different to yours as I was trying to get pregnant when diagnosed so I didn’t want a hysterectomy. The original plan was oral provera for a year with 3 monthly biopsies then if it worked to start IVF. Unfortunately hospital timeframes delayed the year then Covid hit which delayed everything, so my year of taking oral meds turned into 3 and I’m still waiting to start IVF. Would it be the mirena coil you had? X  

Hi - thanks for replying.  I'm sorry that covid has delayed things for you - I hope that you will be able to start again now.  Yes, it's the mirena coil.  It's interesting that you've been taking oral meds - that hasn't ben offered to me but I'll follow it up.  Have you been having the 3 monthly biopsies and been told that the extra hormone has slowed/stopped the growth of the cancer?

Good luck with the IVF - hope you get good news soon x

I started September 2018 on 400mg oral provera, had 3 monthly biopsy and nothing had changed so dose increased to 600mg oral, another 3 month biopsy had showed it had some effects but not enough so increased to 800mg in March 19. That had positive impact and next biopsy was more positive. I continued on 800 oral until January 20 when they decreased back to 600mg whilst waiting for IVF to start. Covid then hit, IVF was stopped due to Covid priorities (understandably) I continued biopsies 3 monthly. The hospital then decided my womb wasn’t ready for IVF as womb lining still not right so in December I had coil inserted as well as continuing 600 mg oral. Last biopsy showed positive impact and coil plus oral had worked so now waiting to hear about IVF funding. It’s been a very long journey and still a long way to go. I’m going to need a hysterectomy at the end of it all but hopefully it’s done it’s job in short term. X 

Hi, I'm glad you have been able to re[ply to SkippyT  - I knew I had read about someone having  the hormone treatment but couldn't remember who it was.. 

It's good to  hear that things are looking better for you and my fingers are crossed that there is further progress   

Thank you so much for sharing and explaining all of that, it's good to hear from someone who has actually experienced what is being suggested by the team.  x

Hi SkippyT. I've just been reading through the thread and did a bit of research so I'm attaching This link which might be helpful for any questions you might want to ask your team when you go for your consultation.

Big hugs, Barb x

Thanks for that link - interesting that it suggests tablets as the first way to administer the hormone.  I'll add some of those points to my list - may need another sheet of paper!  x 

Hi how old are you I was 30 when diagnosed xxx