MDT recommends...

[Booty42]

Update...seeing consultant next Thursday but I recieved a letter from hospital today outlining MDT outcome. Their recommendation was Total Abdominal Hysterectomy with Bilateral salpingo oophorectomy and omental biopsy. I have to do a repeat CA125 on Tuesday and my Cyst is now 8cm result from CT scan, it was 6 cm a few weeks ago. I wanted to keep one of my ovaries but now I have to come to terms with the fact that that probably won't be the best thing to do.

I guess I will get in depth info on Thu about their reasons and what to expect.

On the positive side my uterine biopsy was benign so I'm still trying to work out their thought process with removing everything.

I guess I still have a bit of a journey ahead of me and no closer to having definite diagnosis of endometriosis as I have a presumed endometrioma on ovary....

[Marcia71]

if you have an endometrioma then you have a diagnosis of ovarian endo. A hysterectomy is usually decided on for adenomyosis but I can’t see you having that diagnosis. If you do decide to have the op then do make sure all endo they find is excised fully at the same time else it will cause issues after hyster.

[Booty42 in reply to Marcia71]

That's exactly what I'm worried about, problems further down line after hysterectomy. I have in their words an infiltrated uterus, which could possibly be adenomyosis as I do not have any fibroids. The cyst is suspected to be an endometrioma and my womb has lots of scar tissue from a failed ablation. Not sure why they are doing an omental biopsy, hopefully I'll get answers to everything on thu.

Thanks for your reply I appreciate it x

[Marcia71 in reply to Booty42]

do ask them why they are doing the biopsies. And yes make sure to ask about endo removal. Good luck.

[AlexaMac]

hi, l had CA125 tests twice and both came back clear, but when l had my partial hysterectomy they found cancer cells in the parts they removed, which resulted in me going back after 6 weeks to have the hysterectomy completed due to a tumour being embedded in the lining of my womb, and now awaiting a radiotherapy appointment which should be in the next week or two hopefully.

Wishing you well on your journey back to full health,

Alexa 🌸🌸🌸

[Booty42 in reply to AlexaMac]

Thank-youI saw consultant yesterday and I have signed consent to have total hysterectomy. Consultant explained that they are suggesting that as a precaution as they think there could be cancer within the cyst which makes the risk higher for cancer cells around the pelvic area.

Also my 2nd CA125 has come back still significantly raised so I am on a fast track 2ww pathway for surgery.

I have had it explained to me that there is a high chance the cyst will burst during the op and there is a risk due to the nature of the cyst gluing to close organs that other organs could get damaged.

I'm trying to remain with a positive head and keep telling myself that in a few months its all done and I can get back to normal. I have a 12 week recovery as they have to do it by abdominal incision.

I wish you luck on the rest of your journey and hope for a positive outcome for you.

[AlexaMac in reply to Booty42]

Hi l am so pleased you are being fast tracked, my hysterectomies were both lap surgery,.

l did have a full incision stomach operation when l was 40, that was not too bad, they kept me supplied with pain killers and dressings for several weeks. I did however go back to work after 2 weeks as l had my own shop at the time and hubby had a full time job working 12 hour shifts.

All l can say is please be patient with yourself and listen to your body, your procedure is more complex than my open surgery was. My best tip was given to me by my attendant nurse on the first occasion she advised me to place a pillow across my thighs in bed when l returned home to act like the ‘cages’ they place across your legs in hospital.

Wishing you every good thing on your journey to recovery

Alexa 🌸🌸🌸