Progesterone therapy

Hi Anne,

Couldn't agree more.  If I had had even the slightest inckling that this could happen I would have beaten a path to my GP to demand investigations.  As it was, I mentioned vague intermittent and discomfort several times and the GP response was always, it can't be anything serious because you've had a hysterectomy!  I do feel education is important as there was no degree of suspicion whatsoever. 

Best wishes

Julie x

Hi Daloni,

Thanks for your caring and understanding words.

Up to this point I haven't felt able to ask which stage, grade and type I have because I'm too afraid of the answer.  I can only deal with things in small steps, however I've made my mind up to ask this week.  The answer will probably knock me for six for a few days but it may also give me confidence to question and challenge each decision at that is made at MDT and help me to have a discussion about agreed guidelines. (I may also just chicken out and not ask into next week!)

Lots of love

Julie x

Hi

You are most welcome. I’ve dealt with an unusual situation myself - I carry the gene defect that causes breast and womb cancer known as BRCA1 but in my case it caused a high grade womb cancer. So I can understand how isolated it can make you feel and how asking questions and researching thoroughly can change your options. 

I think you’re wise to ask for information in small chunks. You go at your pace. I have found that each new piece of information makes me feel like a snow globe that’s been given a good shake. It takes time for the snowflakes to settle and the full picture emerge.

In my former life BC (before cancer) I was a journalist. I still have good contacts, including with The Eve Appeal’s press people. How would you feel about me reaching out to them with a view to developing a story about the risk of womb cancer after a hysterectomy? Absolutely no pressure at all and I won’t do anything without your express permission.

love and hugs xxx

Hi Daloni,

Thanks for your reply.

I've just read your story - oh my goodness you've been through a lot, and yes, as you say, not the usual presentation either.  I have to say I cried at the end of your piece, it was so well written, it gave me the sense of someone who is a strong, adaptable and who will not give up.  Very inspirational.  I love your snow globe analogy, its perfect.

I don't mind at all if you speak to your contacts at The Eve Appeal press office, I think its an important health promotion message to share.  I would prefer to develop the story with them to ensure it is accurate and appropriate, although I have no idea what the process would involve.  Actually, I've left a message with their nursing advice line requesting a call back as I need to begin to develop a much deeper understanding of what is happening to my body and take some advice on appropriate questions to ask including those on seeking a second opinion.

Much love

Julie x

Ah thanks Julie , although I am sorry to make you cry. 

I will message you about the press stuff. Look out for a friendship request from me, accept it and then we can go from there. Is that ok? Liz Liz4259 - do you want to get involved? Again, absolutely no pressure 

xx

Hi Julie,

Apologies, I should have mentioned earlier that I have private medical insurance, so my oncologist referred me under the private care option. There is an excellent section on the Royal Marsden website about referrals for second opinions.  From memory, I think the referral needs to come from either your GP or your oncologist. From being referred, to being seen, my referral took about 3 weeks.

If Bupa hadn’t been picking up the bill, the first initial consultation would have cost £650 (back in March 2018).  My first appointment consisted of an hours consultation. All of my scans had already been reviewed and discussed at the Royal Marsden’s MDT meeting. I had the honour of my case being reviewed by the late Professor Martin Gore who was such an inspirational man. Even if Bupa hadn’t covered the cost, I would have paid myself. Having peace of mind that you’re receiving the correct treatment is invaluable when your situation isn’t straight forward.

I’m so pleased that your body is tolerating Provera well. I have everything crossed that it starts to shrink your tumours and ultimately stops any further progression.

Even though my cancer diagnosis came as a shock, I’ve now come to terms with it. What I do struggle with is the thought of stray bits of endometriosis travelling around my body and potentially killing off my remaining kidney.......or anything else for that matter.

I think it was the lovely Daloni that said you have to be your own project health manager. I’ve very much taken this onboard. For example, I’ve recently found out that if you have a hysterectomy for other reasons than cancer, then you’re supposed to have a Colposcopy 6 mths and 18 mths after your surgery. After contacting my local health authority, I’ve just had my first one 2 years after my surgery.

Daloni - I’m more than happy to take part in any future research, however I don’t think my situation is as rare as Julie’s. Having said that, if I can help raise the awareness of endometriosis, it would be an honour to take part.

Lots of love,

Liz xx

Heya, 

I just wanted to say that I've posted a description of the hormone therapy here - https://community.macmillan.org.uk/cancer_types/womb-cancer/f/womb-cancer-forum/189931/newly-diagnosed?Page=1#1398477

Now, some of it isn't going to apply to your situation, but the section on how it works will. 

It might be stuff you already know, it might be totally uninteresting or irrelevant, but I thought I'd point you to it in case there was anything of use.

Lass

Xx