Cervical cancer in uterus

I’m in a bad place mentally. This is starting to feel like it is going to be a never-ending hell.

I first had a cone biopsy to remove adenocarcinoma in situ, to be followed by a total hysterectomy.

That came back with microscopic cancer in it, so I needed a radical hysterectomy instead.

Had the surgery and got a phone call that the final post-op pathology had come back and there was no residual cancer and I was done with treatment at that point. I was ecstatic. I told my family and friends this was all over except for the follow-ups.

I went in Monday for my post-op follow-up to make sure I was healing well. My oncologist said, “Let’s take your staples out and then we’ll talk.” Something about the way she said that made my heart sink. I knew bad news was coming. She told me the pathologist had made a mistake and, upon a second look requested by the onc, she found another spot of microscopic cancer in the lower uterine segment. It came back as endocervical adenocarcinoma, like the first lesion found in the cone, not as uterine/endometrial cancer. It’s 2.2 mm deep. No LVSI. All other tissue (parametrium, ligaments, tubes, lymph nodes) negative for cancer.

She said there’s no precedent for this. Cervical cancer has never spread to the uterus before and there’s no way to stage me for this. Since they have no staging guidelines, there are also no treatment guidelines for this situation. Therefore, she wants to throw everything at it. 28 external rads, 6 chemo, 3 brachy. This is more treatment than some patients with stage 3 or 4 get, just to clean up a few isolated cancer cells that most likely aren’t even there. I don’t have a single Sedlis risk factor, much less a combination of them, so I’m really apprehensive about all the damage the radiation is going to do to my body to treat a disease we don’t even know I have.

She’s presenting my case to the tumor board today and I’m getting at least another couple of opinions. I’m absolutely gutted that 1A1 (I was downstaged from 1B1) after surgery has gone this far. Women with tumors much bigger than mine have been let off the hook after only a hysterectomy. I feel like I’m being punished. This especially hurts after getting the all clear.

Has anyone else had a similar situation like this? Did you accept the adjuvant treatment or skip it?

Hi @Frozen41, I am so so sorry to hear you are going through this. I can’t offer experience as I am still waiting for my results after my radical hysterectomy. I hope that with some other opinions from your medical team you will have a better idea of how to proceed. Hopefully they will be able to then give you more info so you can decide what is best for you. Sending hugs your wayxxx

Hi Frozen, what a shock! I am sorry you find yourself in that position. I can totally understand the disappointment and shock when you think you have just made it, and suddenly out of nowhere comes a new plan belts and braces. I was not in a totally similar situation as the med meeting decided that I would not be offered adjuvant treatment, but the did consider it and the waiting time was all but easy. Earlier in my treatment there where moments where I was always suggested a more invasive treatment than in my previous appointment, and after this I have been fearing for bad things to happen for a long time.

I think it’s good you are taking your time to think through this and that you are seeking help to make as informed a decision as it can be. It seems the doctors do not have a chrystal ball, either, so both options could be just right. In my non-medical head, I must admit I don’t understand where the bad cells could have gone (you stated all other tissue was clear). But the oncologists know better, of course.

Maybe the minimum information here would be that your oncologist explain to you, in a completely understandable way, why something totally removed has to be treated in such an aggressive way. Maybe there is a point to it but she hasn’t yet stated. It’s a huge decision and you should understand the implications, either way. This cancer journey is so not fair. You have all the right to feel like you do. Sending very warm thoughts!

Thank you for sharing. I’ve read your story and it sounds like you got a similar shock, finding out you had full-on adenocarcinoma after being told you had AIS. This whole thing is such a roller coaster.

My oncologist took my case to the tumor board and they recommended no further treatment. I wish she had talked to them before she talked to me, or at least said something like, “This is an unusual situation so I’m going to present this to the tumor board to get some opinions on the best way forward.” The fact that she came right out with her recommendation for chemorads has kind of stolen my peace about having a low risk of recurrence. I will talk to her again next week to see how confident she feels in their recommendation.

Hi Frozen, oh, what an outcome. Have you got any news by now? Just to comment on your message, wow, a U-turn in the treatment plan, maybe for the better, but still your sense of security has been taken. I totally get it and I get what you mean about the oncologist’s choice of words. I think it will be a long road to calm the nerves after these shocks (my experience), but each mini step forward is still progress. Please give yourself time. And the good thing about having an unprecedented diagnosis is that they will pay a lot of attention to your treatment plan and they will take your case forward to be discussed in a big meeting, so your treatment plan is being backed up by several professionals.

Hi, Stepper.
Things are kind of a mess. My follow-up appointment with my onc to discuss the tumor board meeting (because I wanted to hear about the conversation and concerns raised, etc.) was cancelled because she no longer works there. She’s just abruptly gone. So my imagination is running wild with that one, of course.
I have an appointment for a 2nd opinion the week after next and I’ll see what they think about it. I’m having to wait a while because they want to have the slides shipped to them to review and that takes time, of course.

Oh, that’s strange (that your doctor is gone). I hope with time you get a hold of one of the people who were present in the meeting and that they can talk you through the suggestion and risks and concerns raised in an understandable way. I know it’s so important to understand why a certain decision is being made, especially in when it’s our health at stake.