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Hello I had a total hysterectomy including ovaries and tubes on the 13th of May 2020 following a diagnosis of endometrial cancer in April 2020.
Initially following biopsy and MRI scan the Grade was 2 and the Stage 1A but the histology results gave a re stage of 1B. My Cancer team have suggested that surgery is sufficient and I need no further treatment however Cancer Research U.K. and other websites seem to advise adjuvant radiotherapy with Grade 2 Stage 1B so I’m now concerned about not having any further treatment. I left a message for my hospital support Nurses to contact me to discuss my concerns over a week ago but no return call yet, I can imagine how busy they are and I’m very grateful for all the investigations and treatment that I’ve had during this awful pandemic. I would like to know how common it is to only have surgery with this grade and stage. Thank you for any replies.
Hi Be Happy,
Sorry you find yourself here. My understanding is like yours. If you are 1B you have more treatment. Maybe it depends how bad 1B actually is, but I think I would pursue the matter with your CNS. Better to be safe than sorry. xxxx
Hi there Be Happy. I was grade 2 stage 3 but mIne was an aggressive little blighter and has shown it's ugly head once more, even though I had the works treatment wise ! Phone your CNS again, I have found that you need to push and push to get attention and answers. It shouldn't be the way , covid has a lot of people in the NHS very frustrated that they are unable to carry out their normal duties, and they certainly haven't been rushed off their feet ! I am having RT atm and can assure you its not even operating at 50% of capacity. Please push to get the answers you need, based on proper medical evidence .
Good luck and keep us posted,
Thank you so much Little Critter for your reply. I hope all goes well with your treatment good luck and stay strong and positive. Having a diagnosis and treatment during this pandemic is especially difficult and I feel so sorry for those living in areas where cancer services have been reduced I do feel fortunate that I didn’t have to wait too long. I took early retirement last year from my mental health nursing career and Im one of those who tend not to want to over use services more needed by others which isn’t helpful in my current situation! I’ve done my own research and international studies suggest that in my Grade and Stage there is little difference in the reoccurrence rate after 5 years between those having just surgery and those who also had adjuvant radiotherapy.
The things Ive found helpful on my journey is creating a positive happy songs play list I named ‘Hope’ and I asked family and friends to ‘gift’ me songs which has been lovely and I complete a private journal to write down the thoughts, worries and fears that I don’t want to share with family or friends writing them down helps me. This might be helpful for others to try.A ‘gift’ song that was really special was from a friend who gave me ‘lean on me’ by Bill Withers that’s very appropriate for this support forum.
Be Happy ... xx
Thank you Nanny Anny I will chase up the CNS
Be Happy ... xx
Hi Be Happy ...
In 2015 I was advised to have both internal and external RT after my hysterectomy. After histology I was staged 1a and grade 2 but with LVSI ( cancer cells detected in the lymph/vascular system) so a similar situation to you. I was 76 years old at the time so I would guess quite a few years older than you. My oncologist was very clear that she would not advise it unless she felt there was a benefit that would outweigh the trials of RT and the likely possibility of side effects - however she was also clear that even with the treatment there was still a chance of a recurrence that could be in a remote area . She particularly mentioned the possibility of a recurrence in the lungs.
I can't say I particularly enjoyed the treatment. Going to hospital everyday for 5 weeks is no joke at the best of times and I feel for anyone who is having to do it at the moment.
Like you, I searched the papers online and found that there was an opinion that it was often better to keep RT in reserve to use in the unlikely event of a recurrence. However there were other factors to be considered and at my age and with the LVSI the balance was just in favour of the RT. I am sure that the Covid situation is another factor that would be in the mix at the moment. However as you say the 5 year figures were not greatly improved That was 5 years ago and the numbers have been on my side!
I know that some centres do recommend just the internal RT (Brachytherapy) to guard against a local recurrence in the Vagina. This generally has fewer side effects and is not as lengthy a procedure as the external, so you could raise this as an option with your CNS.
I'm glad you have such a positive outlook and lots of support from your friends..
(Class of 2015!)
Thank you Anne that was very helpful.
Hi Be Happy ... I was staged at 1a Grade 2 with LVSI same as Anne (oldady) and also was recommended to have radiotherapy and brachytherapy - we were both treated at the same hospital although I am coming up for 3 years since treatment ended. I felt like although I really didn't want to go through it all it was probably - hopefully - the best choice as I was told it did reduce the chances of recurrence by several per cent. I have been left with a few problems probably from treatment but nothing too drastic so far. I wasn't able to have my latest check up in May in person because of the current situation although I spoke to my oncologist on the phone so far as I am aware all is OK at the moment.
I hope all goes well for you.
Hugs, Lesley xx
Thank you Lesley
Be Happy xx
After my hysterectomy etc I was given a final diagnosis of stage 1a grade 3 clear cell Cancer. The cancer was in a polyp at the top of my womb. That was last December. There was no doubt I would need further treatment because I had Grade 3 cancer which can be aggressive. The oncologist said if I had had stage 1a Grade 1, he would have not recommended further treatment but Grade 3 is aggressive, So a short course of radiotherapy at the vaginal vault was recommended as it reduced the odds of recurrence from 15% to around 5%. I had the course in January 2020. I know that some people with same type of Cancer have had chemo. My oncologist said he did not think it would be beneficial in my case. I do t know how they decide who needs the chemotherapy and who does not, in apparently very similar cases to mine.
* I should have made clear I had internal vaginal brachytherapy only, nothing external.
Hello Nightingale 19
It seems to me that although there are National guidelines for treatment Oncologists all have their own views on treatment based on their personal practice and evidence based studies and can therefore make their own treatment decisions within the guidelines. It does make it very difficult when in each treatment centre women may be offered different options.
I’m facing this myself currently as most with Grade 2 Stage 1b endometrial cancer have been advised ( supported by Cancer Research U.K.) to have brachytherapy after surgery but I’ve been told no further treatment is necessary. It complicates it further as my personal review of international research studies on line suggest their isn’t much difference in reoccurrence rates after 5 years in those who just had surgery compared to those who also had brachytherapy. Do you have further treatment which may or may not have a lot of benefit but has unpleasant short and possibly long term consequences or not?!! I have asked them to review my case again and to give me a rationale of their treatment decision. It’s a very difficult and confusing situation to be in so good luck and hope you find peace of mind.
Be Happy ....
Initially I was diagnosed with two benign uterine polyps to be removed in day surgery. When they operated they discovered the larger one was growing out from the top of the womb and could not be easily removed so they took a biopsy which revealed it was serous cancer Grade 3. I was referred to a top London teaching hospital where I was told because it was stage 1a Grade 3 I had to have everything out including pelvic and para aortic lymph nodes. Which I did. The operation was a success and I made a very good recovery. (The main problem has been my back which is a separate story.) I was told there could be problems with nerves in my thighs due to the removal of lymph glands, for up to 9 months.
The post op biopsy confirmed as it as Stage 1a but changed the cancer type to grade 3 clear cell. The biopsy found no trace of cancer besides that in the polyp. The senior CNS said as the polyp had been growing out from the womb wall, I might be offered only vaginal brachytherapy as a follow up. My personal CNS said I would probably be offered chemo because it was grade 3. (i wonder if the location of the original cancer impacts choice of treatment?)
When I saw the oncologist he said he made every decision on treatment individually. He recommended vaginal vault brachytherapy but no external radiotherapy and no chemo. He said I was at liberty to turn down treatment as I as currently officially in remission but in his experience, vaginal vault brachytherapy reduced the chance of recurrence with Grade 3 from 15 to 5 %. He said not to confuse it with treatment for ovarian cancer which was more complex. I was dubious like you because my operation was a success and I was nervous about radiotherapy and an uncertain outcome. But he is very experienced and well regarded and there is no doubt Grade 3 clear cell is a more aggressive type of cancer. So I decided to go ahead.
I had 55yy in 4 sessions over 2 weeks. I have not so far had any pain or discharge or bleeding apart from the first week. I find the dilators a nuisance and uncomfortable and have only progressed to stage 2, but I am too old to have any interest in an active sex life although the oncologist emphasised he did not rule it out for anyone.
I think the possible after effects are played down, as a matter of course. I was told I would be back to normal in 3 months. I did not find that. I made a very rapid recovery from the hysterectomy - which made me reluctant initially to have further treatment of radiotherapy. To date I would say the radiotherapy seems to have caused me a combination of constipation and a weakish bladder. I asked the staff if the radiotherapy could have had some impact on bladder or bowel nearby and this was denied. I am not sure but of course I have nothing to compare with.
My recovery was not helped by lockdown which has restricted my ability to go out and exercise. The oncologist said my bowels would operate better when I could get more exercise as walking about would help restore my organs to their correct place and functioning. I have also now managed to train my bladder to get it under better control. So I am feeling gradually more positive. I do have confidence in my oncologist who phoned me last week for a telephone check up. Please feel free to ask any questions.
i was grade 2 stage 3a too. I’m sorry you have Had a return, something We all hope won’t happen. Can I please ask how you found out and where it showed up? It’s so difficult to sort out what’s normal and what’s something to be concerned about. I myself felt I was bloating again had a phone appt told to wait 4-6 weeks to see if it gets worse. thanks x
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