Progesterone therapy

Hi JuMur,

Ive not had your experience as I had a hysterectomy as my treatment but i wanted to respond and hopefully provide some support and information. I'm so sorry that you have found yourself here after what must have been an emotional and distressing time. 

The eve appeal has a gynaecologist nurse specialist that you can chat to who can help you prepare questions for your consultant to help you decide on your treatment path. They are at https://eveappeal.org.uk/supporting-you/ask-eve/ 

Ive been around the site for just over two years now and I don't recall anyone in similar circumstances however hopefully if someone has this experience they will be along soon, I'm sure you will get lots of replies regardless, the group is a great place for support. I'm going to tag Lass as she is having hormone therapy for womb cancer without having a hysterectomy and might have some advice about progesterone therapy and I'm also going to tag who is a fellow community champion and womb group member and always has great advice.

I hope that you can get some advice to help with your decision, it must be so confusing being ready for one treatment to start and then have another offered. 

Lots of love 

xxx

Hi

Gosh. It’s taken me a while to make sure I understand you correctly and even now I’m not 100% sure! If I have this right, you have endometrial cells in your body but outside your uterus from endometriosis and these have now become cancerous? Do you mind my asking (and it’s fine if you do, I’m not a doctor, just intrigued) what symptoms did you have and how was it diagnosed? 

Can I check one other thing? Do you mean stage 3, as in it’s advanced, or grade 3, as in it is aggressive? If it’s stage 3 that could be a technical description. Stage 3 means the cancer has spread outside the womb but not to other organs. Since you have no womb and the cancerous cell are by definition outside your womb, that would automatically mean stage 3. But it might not mean widespread. Am I making sense? I repeat. I’m not a doctor and I am really just thinking aloud. You probably know what you’re talking about regarding grades and stages so I’m sorry if I’m patronising you but I thought it worth checking. 

None of this is any help regarding your decision about hormone treatment. I think the most helpful thing would be to call the Ask Eve helpline where you can talk to someone who actually knows what they are talking about. The only advice I can give is to do what you are doing - ask questions, do your research and make an informed decision. 

Best of luck 

xxx

Thanks Aria,

I've heard of the Eve appeal, I'll see if I can contact them for some advice/information.

Lots of love xx

Hi Daloni,

I don't mind you asking any questions at all.  I had a hysterectomy 20 years ago age 35 for Endometriosis, they removed my cervix, uterus and ovaries, I was started on Oestrogen replacement therapy to protect my bones and heart as 35 years old is fairly young to loose the ovaries.  

In terms of my symptoms I had vague and intermittent abdo swelling and discomfort, sometimes there, sometimes not, I discussed it with my GP several times and it was not taken seriously because I had had a hysterectomy.  I began loosing blood rectally and had symptoms of tiredness,  I had a colonoscopy which identified a malignancy in my bowel.  I was later told the bowel was not the origin of the tumour, it was spread from something that looked gynae in origin.  I was eventually diagnosed with endometrial cancer.  The circumstances are very rare apparently.  There is also an 8-9cm tumour in my abdomen at the top of what is left of my gynae organs, essentially a vaginal vault.  I have been told endometrial cells can migrate all over the body, this seems to have happened to me and they have now become cancerous possibly due to uninterrupted exposure to Oestrogen however, I began reducing the oestrogen 5 years ago inline with what I thought would be a natural menopause and completely stopped 6 months ago, with no encouragement from my GP I might add, who just questioned why I wanted to stop taking it!

After delays in finding the problem and delays in diagnosis then changes in treatment plan I find myself feeling lacking confidence.

Anything anyone can offer would be appreciated.

Lots of love xx

Hi JuMur,

I find your story quite interesting. 6 years ago my daughter had breast cancer brought on by IVF treatment. (massive doses of Oestrogen) After the lumpectomy, radiotherapy and chemo she couldn't face anything else and went on tablets to supress the oestrogen. 2 years later she decided to have her ovaries out so she could come off the pills. She would have been 37 when she had the ovaries out. She worries about the bone density issue, but has regular scans and there is treatment for it these days, if needs be.

I'm guessing their ideas have changed in 20 years.

I can quite understand your lack of confidence. I had a bad time when first thinking I was pregnant some 40 years ago (no water tests then).First thought I was pregnant, then had a period, but was told it was a miscarriage. When I really was pregnant the doctor told me to go away and forget about it, at which point I turned to the private sector. When the pregnancy was confirmed I couldn't face my own doctor and changed doctors. Not so easy to do with hospitals!!

Hope they sort you out soon. xxxx   

Hello JuMur,

I’m hoping that I can provide you with a little bit of reassurance. I’m a stage 3, grade 1 lady. My surgery back in September 2017 was for other reasons than for cancer. Through routine blood tests, I was diagnosed with kidney failure. It transpired that endometriosis had strayed into my right ureter causing my right kidney to die. My MRI prior to surgery showed I had extensive endometriosis, hence the total hysterectomy.

I won’t bore you with the tale of woe that followed, you’re more than welcome to read my profile when you have time. My local oncologist initially talked to me about having adjuvant chemo. I was reluctant as I only have one shot with chemo due to having only one kidney. I was subsequently referred to the Royal Marsden for a 2nd opinion. Even though my ER Assay is uninterpretable, they took the view that I should try hormone therapy in the first instance as it’s less toxic, and being grade 1, there was a good chance that it would work.

I started taking Megestrol (Megace 160mg) back in January 2019. Prior to starting treatment, I had a 2cm mass in my right pelvic wall. Unfortunately this unwanted blob is inoperable due to the level of adhesions. Both my local hospital and the Royal Marsden refused to operate. I also had a pesky 7mm lymph node near my rectum that had raised its ugly head. The idea of taking Megace is to stop any further progression. I have a chest, abdomen and pelvic CT scan every 3 months to monitor progression. I’m pleased to say that my dodgy lymph node is no longer significant and my CA125 has reduced from 128, down to 35. I very much doubt that the pelvic wall mass will disappear, I’ll be happy if it just doesn’t grow.

If you have been prescribed with Megace, I’m more than happy to answer any questions that you may have. I’m tolerating it quite well, except for the weight gain. There again, it’s a small price to pay if it stops my cancer from spreading.

I wish you all the luck in the world with your treatment plan. Look after yourself.

Liz xx

Hi

What an extraordinary story. I imagine you are indeed rare. It had never occurred to me that such a thing might happen - but then why would it? I’m not surprised it took a while to get a diagnosis. You must have been very persistent is all I can say. 

I can relate to your feeling a lack of confidence. I felt the same when I was diagnosed with cancer over five years ago. I think lots of people feel the same. It was as if my body had perpetrated the ultimate betrayal. How could I ever trust it again? Confidence does seem to come back although it can take a while. 

It is perhaps not surprising that your treatment plan is changing. Gynae oncologists should be following internationally agreed guidelines for the treatment they offer to women with different grades and stages of cancer. I don’t imagine there are any guidelines to follow in a case as rare as yours. 

Love and hugs xxx

I am sure that I am not the only one reading this thread who has been taken aback by the thought of endometrial cancer developing years after having a hysterectomy because of endometriosis   It's good to hear that Megace is working well for you, Liz and I hope that hormone therapy will  also have good results for JuMur.   

I have known several people who suffered from endometriosis and had a Hysterectomy as a result.  I don't know whether or not they were advised to have oestrogen afterwards.  It would seem sensible that they and their doctors should be made aware of the possible effect  (even though rare)  of long term oestrogen use when there are endometrial cells in the body.  

I was taken aback as well Anne because I have never heard of it happening..I thought once you had a hysterectomy that was it..gone! I too know people with  endometriosis but have never heard of a case like this. It is indeed rare but now unlucky for this to happen. My thoughts and prayers are with all those who are suffering. Love lamb.xx

Hi Liz,

Thanks so much for sharing your story.  My docs have started me on medroxyprogesterone acetate 200mg three times per day.  So far so good with regard to side effects.  I'm so worried that I have to take it for 3 months before they carry out another scan as it feels like a long time to wait to find it may not work and the disease has progessed.

I was interested in you saying you had a second opinion from The Royal Marsden.  Do you mind me asking how you went about this.  I'm thinking of doing the same as my situation seems quite rare, but I'm worried it may cause delays in treatment.

Hope you continue to stay well and strong, and your scans and bloods remain stable and favourable.

lots of love and strength to you

Julie x