Hi all,
Absolutely scared, don't know what to do.
I had stage 3 cc last year, started 25 radiotherapy and 5 chemotherapy in April and had extra 10 radiotherapy low dose finished all treatment end of may.
Had 3 months break then had pet scan and mri, pet scan clear and mri they said looks like scar tissue. So iff I went.
Went back December for mri and came back with a little more tissue, so had pet scan and biopsy. Pet scan ok biopsy cancer cells in cervix.
They offered me a radical hysterectomy in March, didn't explain much just said see you in March. I'm petrified I ask what chances are ect.. I basically got sign this form not our problem if you die during operation.
Have tried to ring and get answers but never call back.
Has anyone else had one of these after radiotherapy and chemotherapy, I'm just wondering if a smaller operation just to remove the cervix as that's where it is.
I'm just terrified I'm 40 life meant to begin at 40
Any help please
Hi Sodo7985 and welcome to our group.
I’m sorry you don’t feel you have been given much information after being told your cancer is back-that makes things much harder to deal with for you.
I was in a very similar situation so I can tell you what happened with me. My cancer was seen again 9 months after treatment finished where I was told my treatment had been successful. I had a biopsy under anaesthetic which showed cancer cells in my cervix, then mri, Ct and petscan. My tumour was 11mm in size, in exactly the same place as my previous tumour, but nowhere else.
My surgeon believed she would be able to do a salvage radical hysterectomy, so I went in for the surgery in January 2020 just over a year from the completion of my chemoradiation. However, when I was opened up on the operating table, it was discovered that I had very bad radiotherapy damage to my organs and it wasn’t safe to continue. The surgery was abandoned, and I was stapled up and sent home to recover. This damage had not been seen on scans, so was a surprise when the surgery started.
The only other surgical option for me was a total pelvic exenteration, which I had in March 2020. By the time this surgery was done, my tumour had increased to 5cms in size, and my cancer was spreading aggressively over my womb and bladder. There was no cancer in my colon, only radiotherapy damage but I asked the colo rectal surgeon to remove it with everything else to give me a better chance, which he did.
I don’t believe that your doctors would remove only your cervix (a trachelectomy) as this is normally only done for younger women with a diagnosis of early cervical cancer, and not done for recurrent cancer.
The surgical options with recurrent cervical cancer are limited to the possibility of a salvage radical hysterectomy or some type of pelvic exenteration. Personally I wish I had gone straight to the pelvic exenteration, as my salvage hysterectomy completely failed. I had 32 sessions of radiotherapy in my first line treatment, so that was also more than the standard dose, but less than you have had. But your proposed salvage hysterectomy is a little bit of a shorter time after your radiation has finished so you may not have the same level of damage I had.
You need to be advised of the risks of surgery when you sign consent, and for me, potentially dying has always been on that list of risks I have agreed to. They have to let you know it is a possibility with any surgery.
I have personally known 2 other women in the same situation who went through the salvage hysterectomy. It didn’t work for either of them, and I know this because they are now members of my support group having had to go through a pelvic exenteration.
I can understand that everything about your situation is scary for you-it was for me too. Have you been told anything about the potential success rates for the salvage hysterectomy or what your options are if it doesn’t succeed? I think you need to be asking a lot of questions of your team. Are you in the UK?
Sarah xx
Hi Sodo7985
I think in your position I’d be wanting more information before going ahead-like potential success rate with no further recurrence, options if it is not successful, and is there any alternative? How many similar radical hysterectomy surgeries post chemoradiation has your surgeon performed? What are the risks of delaying the surgery to have enough information for you to proceed and be happy with what is proposed? They should explain why this particular surgery is the best option at this point. It can’t truly be “informed consent” if you not had everything thoroughly explained to you.
Are you being treated at a specialist cancer hospital? Did you have lymphnode involvement with your original diagnosis? Do you feel it would feel it would be helpful to get a second opinion before proceeding?
I think it’s reasonable to request a meeting with your consultant/surgeon to ask questions and find out more about your particular situation. You are clearly scared, and there is not much time before the surgery is to go ahead in March.
There are not many ladies who have a radical hysterectomy after chemoradiation, and while I know some, I don’t recall any who have posted in this group with a similar experience, so I’m not sure you will get replies here. This is a more difficult surgery than any kind of similar surgery done at original diagnosis before radiotherapy.
I don’t say any of these things to scare you further, but I’m honestly only speaking about my own lived experience of going through this myself and it not being successful for me.
You deserve to have much more information than it seems you’ve been given so far.
Sarah xx
Hi Sodo7985
I know you’ve said you have rung before and not got answers to your questions, so if you can persevere and get a face to face appointment I think it should be easier for you.
Google is not your friend really in these situations as it typically gives worst case scenarios and stuff which won’t relate directly to your situation so it’s not something I’d recommend. As you’ve found, it’s not been helpful and just increased your anxiety.
I’d suggest writing down all the questions you want to ask in advance of the appointment so you don’t forget anything, and take someone with you if you can-two pairs of ears are better than one! Ask for things to be explained simply-none of us are medical professionals and don’t necessarily understand medical jargon. If they go through things too quickly, ask them to slow down, and to repeat anything which is unclear.
I hope this helps you make some progress.
Sarah xx
