My sister has undergone surgery removal, chemotherapy and radiation for what was supposed to be an early diagnosis of cervical cancer. At her 3 month check up she was told that a thick scarring like tissue still remains in her cervix and the doctors are saying that they are sure the cancer might be growing, however it has not spread to her lymph nodes but is positioned very close to her bowl. They have booked her in for a hysterectomy and said she will be given a stool bag.
I am wondering if anyone can recommend some other oncologists preferably in London (although willing to travel) that would be able to provide a second opinion. Her surgery is scheduled for 21st June and I want to find another route if possible as i feel it has been drastically diagnosed and want to avoid a hysterectomy if possible.
A nurse had mentioned to my sister a type of treatment called 'Beta' and said she would be the perfect candidate I was wondering if anyone has heard of this?
Much appreciate any help and advice!
Hi and thanks for coming back to clarify everything. I understand exactly what’s going on now.
Initially the cancer must have been early stage, as that’s the only time a trachelectomy is able to be performed, so I’m assuming she was stage 1, and that they initially established this with scans and a biopsy?
At her check up where they said the cancer is back, how have they established this and made sure it is not just scar tissue? Did she have a further scan or biopsy? If it is cancer it’s possible that the original surgery left some cells which weren’t picked up on a scan-scans can’t pick up anything tiny on a mri for example. Did they achieve clear margins with the trachelectomy? Were chemo rads a belt and braces approach to make sure they mopped up any residual cells?
My recurrence wasn’t re staged as such-it is always referred to as “recurrent cervical cancer” but I’m aware that a recurrence is treated as stage 4.
There are limited options for recurrent cervical cancer -it can be difficult to treat, but if it hasn’t spread to her lymph nodes then it does give the option of exenteration surgery of some type and yes, this would be the standard next step in this situation.
You have mentioned a full pelvic exenteration, but only mentioned a colostomy (stoma formed after colon removal). A total pelvic exenteration would involve more than this and include bladder removal. Where only the bowel is removed the surgery is called a posterior pelvic exenteration.
The surgery is done with a curative intent, and is only possible where the cancer hasn’t spread out of the pelvis or to the lymphnodes, so not everyone is eligible for it. The window of opportunity to do the surgery can be quite short, as recurrent cancer can spread quickly which is likely why the date is so soon for the op.
I understand why you feel the surgery is extreme, but it is the only surgical option available at this point. If you do seek a second opinion, this might cause delays, so you’d need to be aware that if there are delays, and the cancer spreads it might make the surgery impossible in any case. The second opinion will be the same I believe in your sister’s case. The questions I would be asking are these:
How has the cancer been confirmed? (I would expect this to have been via a biopsy, Ct/mri and petscan to be certain it’s cancer and not scar tissue)
What type of exenteration is proposed and why that particular version of the exenteration? There is a big difference between a posterior and total exenteration and that is very important. If you click on my name you can read my story, and it gives the details of what is removed in a total pelvic exenteration.
How many of these surgeries has the team carried out, and how many surgeons will be involved?
Some other things to be aware of- getting a second opinion may cause delays which make the surgery impossible in the future. Your sister needs to trust in her team and have faith that this is the right decision. The surgery is life saving but life changing, and any stomas will be permanent and cannot be reversed. It is massive surgery with a very long recovery time.
I don’t think this is being proposed because they can’t figure things out…sometimes initial treatment simply doesn’t completely clear the cancer. Radiotherapy can cause significant damage to the pelvic organs which means the best chance of success is to remove everything in one go. Trying to do a hysterectomy for example after radiotherapy can be difficult as organs such as the bladder and womb can be stuck together and it can be too tricky to separate them, and risk the cancer spreading. This is what happened to me.
If your sister decides not to go ahead with the surgery, the other option is chemotherapy..but it doesn’t offer the chance of cure that exenteration surgery does. It is a huge decision, but I’m a big advocate of going for the surgery if it’s possible. So many people don’t get the chance due to lymphnode involvement or other spread.
This will be a lot of information for you to take in I’m sure, but please come back with any more questions you can think of. I am more than 2 years out from this surgery and have never for a single moment regretted it.
Sarah xx
