Hi, in Dec I was diagnosed with a high grade cancer tumour in my womb with some spread to the endemetriol lining.
Very quickly went in for a hysterectomy ( I’m a expat living in Singapore) and am recovering well.
The histology after showed no spread to surrounding organs or lymph nodes and into only 38% of endometrium which is great news but medical staff here still want me to have both brachytherapy and chemo - I think because it’s grade three.
I’m really struggling to know what to do.
I have paid for the POLE test but know that it’s only 10% chance that I’ll have the mutation and chemo can be ruled out and results are still 4 weeks away.
The hospital booked me in to see radiotherapist tommorrow and I have a lot of questions to write down as my mind keeps going blank in there. Thank goodness for my husband coming along!
One thing I’m confused about is what order you have things in - chemo first then brachy or simultaneously ?
Wish I could have Brachy then decide later really ! My mind is constantly swinging back and forth between having the chemo - it just seems so extreme.
Wishing I had better statistics or info so I could settle on an answer! Sorry that’s a lot there my brains just trying to apply logic I think and not sure there is much that’s certain to go on really.
Hi Sloop
I had a grade 3 cancer and had chemotherapy and that was followed by external beam radiotherapy. I did not have brachytherapy and was told that I didn't need it as no cancer cells were found in my cervix.
The thing with a grade 3 cancer is that they can behave more aggressively and can spread more quickly and have a higher chance of recurring. Although the surgery sounds like it has removed all visible cancer they usually offer the adjuvant treatment to mop up any tiny stray cells that may have remained. The cells could be so tiny that they are not visible on a scan and in time could potentially move via the blood/lymphatic system and set up elsewhere. The plan with chemo is that it will mop up any stray cells whole body wise. For brachytherapy it is to treat the area at the top of the vagina (where the cervix was) to try to prevent recurrence there. For external radiotherapy it is to try to prevent a recurrence within the pelvis.
Most people are given chemotherapy first (although recently I have seen some exceptions)
I was told that the chemo was given first to mop up whole body wise. Mine started 6 weeks post surgery. I was told it was most important for me to get the whole body treated first and then the radiotherapy would follow. If the radiotherapy was given first then the treatment was focussing only on the pelvis and pelvic lymph nodes and could give any stray cells not in the pelvis, more time to develop. So it was whole body treatment and then extra treatment to the area where recurrence would be most likely to begin.
There is no harm in asking whether you could have brachytherapy first if that is what you prefer.
With adjuvant treatment they take into account the grade and stage of the cancer. However they also look at some other information that they would have got from your biopsy/post op histology. I was told that with POLE and Lynch and other gene mutations that the histology post op would indicate whether there was a need for further testing. It may be worth asking for a bit more detail about your post op histology to see whether anything would suggest any treatment would be more or less effective. Some types of cancer will respond differently so it is about making sure the treatments are the most effective. There are different kinds of grade 3 endometrial cancer and the type can also influence the follow up treatment. Mine was carcinoma sarcoma. Other grade 3's may be serous, clear cell and there are others.
My chemo was paclitaxel and carboplatin and this seems to be the most usual chemotherapy for endometrial cancer. There are occasionally some exceptions and have seen ladies on here with slightly different regimes. Mine was 4 cycles of 21 days. So day 1 I would have treatment in hospital and then 20 days to recover. My radiotherapy was started straight after my last chemo cycle finished and I had 25 sessions.
It is hard when you are told that you need further treatment and I know that after surgery I recovered well and the thought of doing further treatment was not something I wanted to do. However I put my trust in the doctors treating me. Chemo in particular frightened me. I was concerned about side effects, losing my hair and generally making myself feel ill. However although it was challenging at times, I did find it doable. In fact looking back it was the radiotherapy that was more challenging.
I think that taking your husband with you for support and writing a list of questions is a good plan. I know my mind would often go blank. It can be hard to make decisions about treatment but the thing that made me decide to have it in the end was that my consultant said it is far easier for them to do the adjuvant treatment after the surgery and to mop up any cells when they are tiny rather than wait and then they become active and potentially set up somewhere else in the body. By the time they then cause symptoms and are discovered they can be much harder for them to treat. So effectively it is better to try to prevent a recurrence than to attempt to treat one. Only you can decide what is right for you but for me, I do not regret having the treatments. I am now 2 years post treatment and have had no recurrences.
I hope your appointment tomorrow goes well.
Jane
