Carcinosarcoma of the endometrium

Hi RobeH,. Well I don't think this is all bad news.  First I would say contact your mother's CNS nurse for a more detailed explanation of these results.  But, although grade 3 is an aggressive type of cancer the fact that it's a 1b staging is (in my opinion) very positive because it means all the cancer was contained in the womb.  The absence of any cancer cells in the lymph nodes is yet more good news as it's an indication that it hasn't spread.  My guess is that the chemotherapy  and brachytherapy are precautionary.  But you really need that discussion with your mum's team and it's a perfectly reasonable for you to insist on a detailed explanation of her case.  

Thank you, this is my interpretation as well i.e. 1b is early staging but grade 3 means a high risk of metastasis. Presumably the adjunctive treatment is to try and destroy any cancerous cells that may be lurking in her bloodstream.

Hi RobeH,

It's good news your mum had no cancer in the lymph nodes,  so stage 1B, all contained within the womb.

I was also staged at 1B with a grade 3 cancer.

My consultant advised adjuvant radiotherapy, as a precaution to prevent pelvic recurrence, (or deal with anything microscopic as they could not get my lymph nodes), and offered me the option of chemotherapy as well,  which goes through your whole body so would be to prevent recurrence elsewhere. This is because grade 3 has a higher risk of metastases than lower grades. I had 5 weeks of external radiotherapy. 

I believe your mother's proposed internal radiotherapy is because if there was any recurrence,  that would usually be the most likely location, so that is to reduce the chance of that happening. 

Chemo was offered to me as an option in addition to the radiotherapy. It was optional, because my scans before the op did not show anything elsewhere,  and it was therefore precautionary to have it on top of 5 weeks of external radiotherapy. I was told that chemo as well made about a 5% difference to outcomes. 5% is significant as far as I am concerned. 

I took the chemo, had 2 during the radiotherapy , and 4 after. Having just finished it, I found it quite tolerable. I did feel rough about 4-5 days of each 21 day cycle. The first one after the radiotherapy was the worst one, as the radiotherapy was still affecting me. Otherwise I felt tired, and part way through got some pins and needles in my fingers and toes, but the oncologist kept that under review, and I was able to complete the course without that becoming unacceptable. I am glad I had both radiotherapy and chemo. I feel I've done my best, whatever. 

Best wishes to you and your mum. x

Thank you for that very informative response, exactly what I was after. Someone who had gone through the same experience. Can I ask when you had the treatment, please? Did the recovery go well? I don't mean to pry, just an extra information is helpful.

Hi RobeH,

I had my operation on 15th April this year. I started my radiotherapy and chemo 8 weeks later (which is a longer delay than I would have wanted but within guidelines). The radiotherapy finished on 12th July. Chemo last dose was on 24th September.  I'd say I was more or less over the effects of the radiotherapy 4 weeks after 12th July. 

Now I have gone 23 days since chemo, so have finished the  cycle.  I went back to work today as planned, (part time which I was before). I am feeling more normal,  but I think tiredness is going to affect me for a while yet. I have some mild neuropathy in my fingertips,  toes and balls of my feet, but not affecting function. It feels like its improving a bit.

I have some slight vaginal spotting,  my oncologist says is likely to be due to damage to the vaginal walls from the radiotherapy. It seems to be quite common due to the effects on the tissue there. It's not obtrusive. 

I have my after treatment CT scan and first after treatment check with my oncologist next week. 

1. I am happy to give information to help others, just as I get the same myself from other people on here.

x

Thank you again for the informative response, Mrs Woodentop, that is very helpful. I notice that your course of treatment was slightly more intensive than the one scheduled for my mother - 5 sessions of radio instead of 3. Mum has also been offered 4-6 sessions of chemo with a 3-week break between each. I think that is standard. I hope everything goes well for you.

Hi RobeH,

My radiotherapy was 25 sessions,( 5 x a week for 5 weeks) external,  not internal.

Thank you. Hope it all goes well for your mum too x