Womb cancer hysterectomy on 14/01/20

Heya, 

50/50 on the hormone treatment isn't true, it's actually a lot more successful than that when done properly. I went for the hormone treatment route, and I've no signs of endometrial cancer now.

Having a partial hysterectomy, to then be genetically tested, to then maybe need operated on again seems very disorganised. Wouldn't it be better to have the testing done before and then only be operated on once? What's the rush, do you know?

Lass

Xc

Hello lass

that’s interesting because I asked this doctor 3 or four times how likely hormone treatment was to work and every time she said 50/50 even when my partner asked her she gave the same answer if she had given better odds then I would of been going for that first but the way she explained it was that it had 50/50 odds on working and it was only being used to let me have a baby and then I would be having a hysterectomy (I’m 28) 

again with the rush for the surgery I was told it was to prevent it from spreading and because I’m decided to keep my ovaries due to this doctor telling me my risk is low of developing ovarian cancer even with lynch syndrome (12%)the reason for having my hysterectomy then testing then possibly more surgery to remove my ovaries is because I’m leaving my ovaries for two reason one being able to use my eggs to have a child (I’m in a same sex relationship) and two is to stop me from entering early menopause

when I went to my appointment on Wednesday and was told my surgery was to be six days later I was shocked and confused as to how things are moving so fast my team of doctors and nurses just seem not t answer my direct questions and seem way to busy.

I asked what would happen about the nodules on my bladder Nd nothing was said about that apart from that they wasn’t overly worried about it but in fairness i was told right at the beginning of this they was let overly worried about my bleeding between periods  I only found out I had cancer a month ago and I feel like I’m living in a life that is being fast forwarded all the time thank you for taking time to reply to my post 

Heya,

Ok, so, I'll tell you my tale and the questions I asked, see if it helps you at all.

So I had bleeding that just wouldn't stop. The GP kept telling me that it was just normal, and every woman was different, and he refused to listen to me when I said my normal was that I didn't bleed at all because of my PCOS. So when August rolled around and I'd not stopped bleeding since March, I put my foot down and insisted I be referred to gynae. Saw them, had an ultrasound which showed thickened lining, saw a Gynae who referred me for a hysteroscopy. Had that, took some biopsies, diagnosed with Atypical hyperplasia, then had a myosure procedure to remove the polyps they'd found and as much lining as possible. This came back showing the polyps were cancerous.

From my first hysteroscopy and then also before the myosure, had been talking to the consultants about treatment if it came back showing anything. I was mid 30's, so didn't want to go through the menopause so asked if I could keep my ovaries if I had a hysterectomy. I was told no, because ultimately I would need to have them removed because they always go 'off' over time. So they were happier removing everything in one go as it would be better for me. I also asked about HRT and if I could have that, again I was told no because my cancer was hormone receptor positive. This means that it feeds on oestrogen, and any oestrogen could make it grow and spread - another reason for removing the ovaries too. So then I was asking about the coil and hormone therapy. This was 5 years ago when the therapy was pretty brand spanking new, and this was what they wanted me to go for, partly because I have other health concerns and also because I'm quite large so surgery would be high risk. They told me that if I wanted children, then it was simply a case of removing the coil and allowing my body to readjust and start having periods again, and then I could conceive, have the baby, and then have the coil refitted again. They also said that they were happy to try the hormone therapy for 9 months to see if it would work, and if not then I could have a hysterectomy at that point, because more endometrial cancers are SUPER slow growing, then there would be no noticeable change in that period, but I'd be getting checked every 3 months so any changes would be noticed and monitored.

So after thinking about it, talking with the lovely ladies at the Eve appeal, and asking all the questions I had of my consultants, I went with the hormone treatment and I currently have 0 signs of cancer, atypical hyperplasia, or hyperplasia. My womb is in textbook condition apparently. Also, I have no interest in having biological kids of my own because these genes are not ones I want to pass along. So preserving my fertility wasn't a reason to take this option or for the docs to give me this option.

I don't know how you feel, but from what you've said it does feel a little like you're being strongarmed into this. If you're happy with the decision you've made, then do ignore me. But I def think you might be someone who could do with a second opinion from another doctor? Have you been in touch with The Eve Appeal at all? They are awesome, and really do chat through anything and everything with you in general terms, as obviously they don't have access to your specific notes. But I'd def suggest giving them a call in the first instance and see what they say, make sure that you're heading down the best route for you.

Lass

xx

HI Mel1991 I am going through a similar situation to you, Im 34yrs old with no children  and was diagnosed with grade 1 endometrial cancer 2 weeks ago, and I'm trying to decide on whether to go the conservative route or get a hysterectomy, i'm also being tested for lynch syndrome, just wondering what treatment option you decided to go with and how that's going and also if you've had your results back from the lynch syndrome testing? 

Katrina x