Newly diagnosed

Hi up the junction,

im 38 and had a hysterectomy as my treatment but a few others on the site are having your treatment Lass is one of them, she will hopefully be along soon to share her experience. Florine fma had fertility sparing hormone therapy and went on to have a baby, I don't know if Florine still visits the site but if you do a search for her name in the womb group you will find the old threads, if you can't find them give me a shout and I'll link them for you.

It will depend on your treatment plan how quickly things will happen but my experience is they don't usually hang around too long, I was diagnosed late June and had my op in early August.

Lots if love and please feel free to ask me anything else, the group is a great place to share your worries.

xxx

Hi,

Not to answer ANY of your questions, as I am in a different category on several fronts, but to welcome you to the club no-one wants to join.

I hope someone in the forums will respond quickly. Sometimes, it can take time to find a "match", as we all have such personal journeys, and people hesitate to respond if they cannot directly contribute.

For that reason, I have found that calling Macmillan support and visiting Maggie's (my centre is at Barts in London but they are all over the country, I think...) have been the most efficient ways of getting a useful response to my questions, and the support I needed when I didn't want to overburden family and friends.

Also to wish you the best for your treatment. You sound well and that's a very good start on this particular road.

Good luck and best wishes

Thanks so much for your reply and support. I'll take a look at the treads to mentioned. I got the feeling things would move quickly - I have a chest xray, MRI and then back to clinic when I guess things will get moving. The consultant who suggested the fertility sparing treatment made it sound like a breeze, and I wasn't really in a state to think of questions. I'm going to write a list for clinic. I'm sure it's still going to be a bumpy road. I'm also freelance and single so I'm really anxious to know how much time I'm going to have to take out. We also have a family holiday booked for early Jan for mum's 70th that I am now REALLY keen to go on and don' want to disrupt (dad has stage 3 prostate cancer so bot parents really need a break not a sick daughter, too!) 

I hope you're well and happy!

Hi upthejunction,

im good thanks, I'm two years down the line now. I'm not a medic but wanted to share what I think I know whilst you wait for replies, the fertility sparing treatment is usually clearing the womb lining, inserting a mirena coil and taking oral progesterone, then they usually do regular checks to see how it's working, I think it's generally every three months. After the procedure symptoms will vary from person to person but I think it's generally cramping and bleeding and I think they last about a week or so. I was able to go on my pre booked holiday before my operation, so check with your team, they will keep you right about what you can and can't do after your procedure, hopefully you can still go and have fun. 

Writing a list is a great idea, they throw so much information at you it gets difficult to remember it all, we usually suggest taking a friend as a second pair of ears too, if you feel comfortable with that.

lots of love

xxx

Hi,

I was diagnosed with hyperplasia in 2008 (stage 0) when I was 33.  I am now 44, and last week had a tumour removal and Mirena coil to oppose oestrogen prior to my biopsy result.  If my biopsy result shows the grade has worsened then a hysterectomy will be the next step.  Like you, I am waiting to see what will happen.  I have to wait until December for my biopsy result.

in the meantime I have been bleeding for the past 11 days after surgery and have had period-like cramps every day. I have been told this is what the Mirena can do!

Hi Jus03,

Good to hear from you and thanks for letting me know what the treatment I've been offered involves. I had a feeling the tumour removal and coil wasn't going to be easy. I'm freelance so taking time off is a problem, but also I've had to keep working through diagnosis and tests, so I'm thinking I need to give myself a good break and time to process soon.

I'm back to clinic in 10 days but waiting is truly awful - December sounds like a very long time. I could tell from my biopsy that things were looking grim and was weirdly happy to be offered the fertility sparing option - I had mentally prepared myself to go straight to hysterectomy. 

I hope the coil settles down soon for you and fingers crossed for the biopsy...

Thank you clg03! There is a Macmillan centre at my hospital, which is luckily just a few streets away. I didn't think I'd need it but also can't keep telling friends about these things and expecting them to understand... 

I hope all is well with you!

Hi,

I am new to writing about this, so please excuse me coming back to you with more information a bit later on!

The tumour removal and Mirena were done at the same time, and now it is hard to tell which is causing the bleeding and the ongoing pain, or possibly it is a combination of both.  The operation itself was a day case, but I needed another couple of days to really get over the anaesthetic and cramping pain, which was quite severe at first- if this helps give you an idea about your work.  12 days later, what I have now is more like just having an on-going period.

I should also have mentioned that, if my biopsy result shows I can keep going with this treatment option, I will still need 3 monthly scans to make sure no new tumours are growing.   It the grade or stage has changed from my biopsy now, or if it changes later however a hysterectomy is the only option.  I wonder if I am only delaying the inevitable of having a hysterectomy or if the Mirena really does work?

Were you offered a fertility sparing option because you want to have future children?  

Good luck at the clinic- let me know how it works out. 
All best wishes

hi up the junction. 

I've just been diagnosed too. am in shock and wishing I hadn't ignored my symptoms... I just thought they were menopause. ... ah well. mri tomorrow. .. am I likely to get a stage at that appointment do u know?

lu.

Hi Lu, the way things are approached does vary between hospitals so it may be different for you but I'd guess that you probably won't get a stage after an MRI. Often they can give a grade based on the look of cells taken during a biopsy which tells them what type of cancer you are dealing with, but although some ladies do get a tentative stage before surgery,  but usually the surgeon and the lab like to have a chance to look more closely to be sure how far the cancer has grown before they confirm staging.