Grade 3 stage 3. Apparently cervical clear cell adenocarcinoma is very rare and extremely aggressive and recurs constantly, so it's a fallacy to believe that there is a long term 'cure', although my oncologist insists 5 weeks of radiotherapy will cure me completely. From what I understand of clear cell it has a very poor prognosis of less than 5 years but I can't get my oncologist to be honest about this. Everyone is so falsely positive it's worrying.
I think my treatment plan would be very different if I could get them to admit that clear cell is extremely aggressive, and I feel my long-term prognosis is actually being harmed by the blind insistence that the 'standard' cookie-cutter treatment plan will cure it.
There is no long-term cure for clear cell because of its aggression and rapid recurrence, and I wish my team would stop being so positive that treating this first tumour will 'cure' it, and be honest with me. It really makes me worried that they are not doing enough to save my life out of either ignorance of clear cell or refusal to accept its reality.
I'd love to hear from anyone else who has clear cell adenocarcinoma of the cervix, but I think there are very few others.
Suki
Hi Suki Silver and welcome to the group!
I remember you from your womb forum posts: so it’s cervical cancer and not womb but how did they not identify that at the start?
I’ll just make a couple of points here because I had adenocarcinoma and not clear cell, and don’t have the same experience, but I’m aware of the aggressive nature of clear cell. And it’s rare, so I’m not sure if anyone in the group has been through this.
First, the oncologist saying 5 weeks of radiotherapy will cure this is quite bizarre. Cure is to me a difficult word to be used in the world of cancer, particularly at stage 3, and not one to be bandied about lightly, so I’m surprised they have said this. Is this in Edinburgh or your local hospital? They are saying 25 radiotherapy sessions will completely cure your cancer? No other treatment? No possible surgery/chemo/immunotherapy?
The next thing is that I know someone who had stage 3 clear cell adenocarcinoma-I’ve met her personally. Anyway, she was diagnosed at the age of 34, and she has just celebrated her 60th birthday. Treatment was different when she was diagnosed so she actually had a hysterectomy first, then radiotherapy, developed a second cancer many years after diagnosis caused it is thought by radiation and is still here, minus lots of body parts! We are no longer in touch but she is a success story.
I do wonder if, because it’s a rare form of cervical cancer, your oncologist has not come across it before? I’m surprised that radiotherapy is the only treatment being offered-most of us at stage 3 go through chemo, radiation and brachytherapy with the potential of a stronger chemo mix being added into the process either before or after the standard treatment. Have you asked why chemo is not an option? I don’t know if it’s appropriate for clear cell, but none of us with other types of cervical cancer have radiotherapy only.
Have you sought a second opinion? I don’t know how easy this might be in Scotland but have you asked? You are clearly well informed, and do your research, and have a pragmatic approach. I would have gone for a second opinion in your situation, but I’m in England and was treated at a specialist cancer hospital, so there is a very good team of skilled oncologists available and I suspect it would be easier here than where you are.
Do you know when your treatment will start? I appreciate that you may not wish the delay it may involve to get a second opinion, but I’d want to know how much experience your current oncologist has in dealing with clear cell. I had a lower stage more common type of cervical cancer, and successful treatment, but I still would not consider myself “cured”.
Sarah xx
Hi again Suki
I didn’t have a Macmillan nurse at any point, just my CNS. I’m not sure if they are at every hospital or how it works, but you could try phoning MacMillan (number is in my signature below) for advice on that. Also they may be able to provide advice on getting a second opinion. I didn’t have to seek one as I had an excellent and very experienced team who I trusted completely.
So you’re having Cisplatin, and that’s normal protocol, but it is a low dose designed to make the radiotherapy more effective, so you won’t lose your hair. Maybe after this round of treatment they will move to a different chemo depending on how you do? There are a number of stronger chemo combinations used with advanced cervical cancer.
When I first saw a gynaecologist, his words were “ we are treating to cure you”, but no-one has ever used the word cure since then, and I know they never will. I accept that because it’s realistic. I had stage 2b and it recurred within 9 months of treatment finishing, so I’m familiar with cancer returning. I was told I was “ned” after my treatment (no evidence of disease) and that is as much as my consultant will ever say. She will never say “cancer free” or “remission” because there are never any guarantees. Scans cannot pick up tiny cancer and microscopic cells can still be there. (I had Cisplatin and radio as surgery is ruled out at stage 2b).
When my cancer recurred, I was “luckily” able to have surgery-the same surgery that the lady I know with clear cell had (that’s how I know her). I seem to recall from your other posts you were keen to focus on quality of life more than anything? So even if surgery were ever possible you may not consider it? If you click on my name you can read my story, including all the body parts I have lost!
I have never regretted my surgery because I would have not been alive today without it. When my cancer recurred it was very aggressive and grew quickly. But I’m still here and doing well.
I feel that you need better answers than you’ve been getting so far, and more information. I don’t think it’s particularly helpful to tell you that you’ll be cured after 5 weeks of standard treatment.
Sarah xx
I just noticed you saying your gynae oncologist is the only one at Edinburgh, but I’m certain this won’t be the case. There will be a number of them as the Edinburgh cancer centre will be treating a huge amount of people. It’s normally easy to find out on the internet from a hospital staffing list in the first instance.
Sarah xx
