Adjuvant radiotherapy after surgery for endometrial cancer Grade 2 Stage 1B

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.

Best Wishes

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. 

Hello critter

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

Hi

Can I please ask how old you? My mum has just be diagnosed I am am so scared.i do really wish you all the very best. 

Hi little Critter,

I am so sorry you had a recurrence. How long after treatment did you have a recurrence? I do hope with all my heart you and every other women going through this is doing well. 

Hi Lesley, 

Pumped into your post when I was searching for more info about staging n radiotherapy. 

I was diagnosed with Stage 2 grade 2 endometrial çancer. Initially, the doc said it was grade 1 so no mri was performed. It was only after the hysterectomy my diagnosis was upstaged n upgraded. 

How are you now after the treatments? I will also undergo external n internal radiotherapies. But I am still worried about whether the cancer has spread to the lymph nodes. What afteroperation measures did your doctors take to monitor the lymph nodes in your case?

Hope you do not mind sharing with me. 

Best wishes, 

Chui

Hi Chui  It is now 4 years since my treatment finished.  I find I do have bowel and bladder changes which are most probably from the radiotherapy.  I have bowel urgency and if I go out - which isn't often as I am agoraphobic - but I don't feel confident to leave the house without taking Loperamide, which can then go on to give me stomach cramps later in the day or the next day, but I feel I can't risk not taking one so have to put up with it.  I also have some bladder leakage which I didn't have before.  But all in all I suppose it was the price to pay for hopefully having the chances of recurrence lowered.

For the first 2 years I had regular chest x-rays and CA125 blood tests, but then Covid hit and I had to have phone consultations but apparently the hospital have now decided not to do those tests any more anyway and go with the patient noticing any symptoms.  I had internal and external ultrasounds at the end of 3 years, and I've just had my 4 year check up and for the first time since treatment ended the oncologist felt the lymph nodes in my neck as well as lower down.  

I also have other health conditions which can be debilitating, so overall I don't feel great most of the time, but probably only a part of that is down to the radiotherapy long term effects.

I hope all goes well with your treatments.  Many people have no long lasting problems at all!

Hugs, Lesley xx

Thank you very much Lesley. 

Your sharing really helps me to get myself emotionally prepared for my future. 

Hope we are all staying safe and strong in this winter. 

Best wishes, 

Chui