Hello all!
My history is Stage 2B Adenocarcinoma. 25 external rads, 5 chemo and 3 brachytherapy.
3 month MRI showed a small area of what they believed to be scar tissue.
6 month showed area of what they thought was scar tissue has changed slightly and now they want to investigate it. So I've been reffered again for a PET. The doctor mentioned a Hysterectomy.
Has anyone any experienced a similar situation?
Yes, my care also was fantastic and I had exactly the same treatment as you did!
Hi Shammy and welcome to our group!
I’m sorry to hear that you need to have a bit more investigation done -that’s always stressful to hear. I was also stage 2b adenocarcinoma, had extra external radio as I couldn’t have the brachy, and was in exactly your position after treatment so understand how you’ll be feeling.
I did get NED after my 3 month mri, but then had something spotted at my checkup 9 months after treatment finished. The doctor thought it might be scar tissue but sent me for another mri, which picked the same area up although it was very small. The mri can’t differentiate as to what this was so I then had to go for a biopsy under anaesthetic which confirmed it was the cancer back.
Because it was small, my surgeon thought she could do a salvage hysterectomy, so I had a petscan to check there was no spread and then went for the hysterectomy a couple of months later-by this time I was a year out of treatment. Unfortunately, when I was opened up she could see that the damage to my pelvic organs from the radiotherapy was pretty severe, and she felt it wasn’t safe to proceed. Everything was stuck together. She got a second opinion while I was still on the operating table, and the other gynae surgeon agreed it wasn’t safe, so the surgery was abandoned and I was stapled up again with nothing removed.
None of my scans picked up the damage done by the radiotherapy, so she was quite surprised after being very confident of success.
It can be difficult to do a hysterectomy after rads, especially the further out from treatment you are. I have seen both successes and failures with other ladies I’ve talked to who have gone down this route. The thing is, they don’t know until you are opened up what is going to be achievable, and I think it’s important to be realistic that it may not be a cure all as many ladies seem to think. However, it may work. It’s a risk, like everything in life. I have a friend who had it done a few months after treatment as she pushed for it and she is doing ok now, a year out. But I have another friend for whom, like me it wasn’t successful.
But you don’t know yet if it’s just scar tissue and nothing to worry about. I began to have a significant amount of pain, so suspected it was the cancer back before I had it confirmed-I just had the feeling I wasn’t done with things quite yet!
The petscan will show if there’s anything active-mine only lit up in my cervix as the tumour was growing back in the original location, so although I had been told NED, there must have been residual cells which couldn’t be picked up on the post treatment scan.
Lots of people will tell you that if it is the cancer back, the hysterectomy will be a breeze and all will be fine. I don’t want to scare you, but I’m just putting the other side of this forward, and my story is based on real experience of this not working out. I think that if hysterectomy is always the answer, then it would be done as a matter of course after chemorads but there are good reasons why it’s not.
I really hope it’s just scar tissue for you, and I’m sorry I don’t have a more positive story to tell. I hope you’ll keep in touch and let us know how things go for you.
Sarah xx
Always hope for the best and keep a positive outlook. That’s a key factor in my opinion.
I am always wary of telling my story to someone who might be facing a recurrence, but I do believe in setting things out honestly and giving my personal experience. I’ve been in many groups over the years, and those people who haven’t faced this tend to say everything will be fine all the time. I’m afraid I’m not a “you’ve got this”/“you’ll smash this” kind of person because I’m a realist based on my own experiences of dealing with this cancer. I’m still a positive person though!
The main thing at the moment for you is that you don’t know what’s going on, so you don’t know if anything will actually be needed…and hopefully it won’t be. Scar tissue is the holy grail in this! I tried to keep a positive view, but I was just unlucky-not to say it will be the same for you. Even when I was told it wasn’t scar tissue, I didn’t lose faith. Never lose that.
But please do ask questions if it comes to suggesting a salvage hysterectomy- how many have they done after rads, what is their success rate for no further recurrence. It is not the straightforward procedure many in cancer groups would have you believe. But then again most who post that it’s a doddle haven’t actually been through it. Once I had been opened up for mine, my cancer spread like wildfire over everything. It was very aggressive, and I didn’t have a lot of time left before palliative chemo was my only option. If I had my time again, I would personally never have risked it. It made me so weak before needing the further surgery. But I trusted my surgeon completely and she was devastated when it didn’t work for me. I don’t blame her at all-she saved my life in the end.
Sarah xx
I really wish there was a laughing emoji reaction! 
I’m doing very well now, thank you, all things considered! Happy to be stalked, so it’s ok!
Sarah xx
