Recurrence

Hello Suewoo

I am sorry to hear that you have had a recurrence of womb cancer. I understand how worrying it must feel to have your operation cancelled because the tumour has grown. 

It is good that you are having more CT and MRI scans as this will enable the doctors to see if other treatment may be a possibility. There are ladies on here who have been offered further chemotherapy and immunotherapy for recurrence for example. I understand that you feel that all hope is lost but it may be that although the surgery can not be done at this stage, that there could be hope in other ways with other treatments. 

It is hard waiting for tests and results and hard to wait to find out what the next step is but there are lots of lovely ladies on here who will understand and be able to offer support. 

If you feel like speaking to someone, please pick up the phone and talk to the Support Line- they are really nice and they will understand.

I hope that you do not have to wait too much longer for your scans and results and hope that from them you will have a plan of action.

Hang in there

Jane

Hi Suewoo 

I’m sorry to read you have a recurrence-I know how devastating this is having been through it myself.

I did not have womb cancer,  but cervical cancer spread over my womb, and I had my vagina and bladder removed more than 3 years ago as part of a larger surgery to remove everything in my pelvis. 

Please try not to give up all hope at this point, despite the crushing blow of the surgery being cancelled. Perhaps after the scans and MDT there may still be a way forward for this surgery for you, or if not, then other treatment. 

My cancer grew very rapidly over a short period of time, and I was hugely concerned that surgery would not be an option when my tumour grew from 11mm to 5 centimetres in a space of a few months-it was growing into the vaginal wall, and spreading over other organs. However, surgery was deemed possible as it hadn’t spread out of the pelvis and so I had my surgery more than 3 years ago with no complications since.

I appreciate our situations are different, but I just wanted to say I understand what this is like. Your op is cancelled for now, but it may be with further scans and discussions it might be back in the frame for you. The team will be acting cautiously for now given the tumour growth, but things can change. 

I hope the scans are done quickly, and that the mdt can give you some more encouraging news going forward. 

Sarah xx

Thanks Sarah. The surgeon yesterday seemed obsessed with clear margins and said he couldn’t operate without them. This was Preston. Where did you have your op? My last scans showed nothing beyond the pelvis but that might have changed. Guess that’s why they need further scans. A glimmer of hope thank you. 

Hi Suewoo 

I had my surgery at Sheffield. Clear margins are of course the goal, and I imagine that the surgeon will want to check again on the scans how achievable they feel this is due to the position of the tumour. Have you got urology involved in this in addition to gynae? 

My surgeons were able to get very clear margins when they operated(I had gynae, colorectal and urology involved in mine because it was a total pelvic exenteration) but I knew in advance of my surgery that the chances of success from it were 50/50, and it turned out mine were actually 70/30 and not in my favour! Yet here I still am. 

Have you thought about seeking a second opinion if you are told surgery is still not an option after the mdt? You may get the same answer as at Preston, but it might give you some confidence that it’s the right decision if that decision remains not to proceed-somewhere like the Royal Marsden where they treat complex gynae cancer cases.

A friend with womb cancer recurrence being treated at the same hospital as me in Sheffield has just done this and is scheduled for some further tests there imminently. It may be the same answer as the Sheffield doctors (who recommend a total pelvic exenteration) but she wants to be confident that’s the only way forward. 

I don’t want to give you false hope but my belief is where there is a glimmer of hope, you hang onto it and explore every option.

Sarah xx 

Thanks Sarah. I’ve messaged my CNS about second opinions etc. but it will be a waiting game until after the scans. 
I saw urology yesterday. But final appointment was gynae and after he examined me he pulled the plug! X

If the mdt is meeting in a couple of weeks, it won’t be too long till you know what’s happening. 

I hope you’ll let us know what the outcome is for you, and fingers crossed you’ll get your plan of next steps. 

Sarah xx