Hello,
I have been recently diagnosed with grade 2 (as per polyp biopsy and curetage) endometrial cancer. I am going in for surgery in a week.
Based on the preliminary biopsy, I am MSH1 and PMS2 deficient, no pole mutation, that was marked as less favourable prognosis on my report.
P53 normal, wild type.
It seems like this deficiency is 30 % of all endometrial cancer, with an intermediate risk and more recurrences
i was wondering if anyone in the group has been diagnosed with MMRd tumour? What is the treatment plan?
Thank you very much for any insights.
Hi Cat66
I can remember when I had my diagnosis the consultant said not to focus too much on the genetic information but rather look at the provisional stage and grade. He said that all the extra information was more helpful to them when they were deciding how best to treat the cancer. MSH1 and PMS2 are only part of the picture.
For a grade 2 cancer I would expect that there would possibly be some follow up treatment after surgery, however the post op results are the ones that will be the deciding factor.
My cancer was a grade 3 and I also had LVSI so although it was a low stage I needed chemo and radiotherapy. But there are lots of factors they take into account and they will be confirmed post op.
Jane
My results were grade 3, stage 1b carcinoma sarcoma, ER,PR positive. No MMR, P53 wild type. Substantial LVSI. (from memory)
My treatment was surgery, chemo, radiotherapy.
It is natural to want to know more but to be honest until you get the post op results, you won't know exactly what you are dealing with. In your case IF it is confirmed as grade 2, then it possibly will mean more treatment- however the stage the cancer is will be the important factor.
So for me- I had a grade 3 type, which can be a very aggressive type, however it was caught at an early stage. The LVSI that were found post op showed that it had got into the tiny blood and lymph vessels. It is all this that meant I needed extra treatment. Because it was grade 3 they threw everything at it. The genetic and other factors would not have changed that initial treatment.
If there was a recurrence, I have had radiotherapy and that can not be repeated in the same area, I could be offered surgery or more chemo. If that did not work I could possibly be offered immunotherapy. Hormone or targeted therapy is also a possibility as mine was hormone positive. So all the extra genetic and other markers are useful in looking at treatment. Another example is that is there is a POLE mutation then chemo is not normally offered.
Everything is individual and they take into account lots of factors including comorbidities and general health.
The information you find online, is not particularly helpful and it doesn't have your own specific circumstances or results. For eg; it does not take into account individual response to specific treatments.
Prognosis that you find online can only be a guideline and there are many factors involved. Only the doctors who know you and your post op results (when you have them) can give a more educated idea.
For you they believe it is a grade 2 cancer, so that is right in the middle. Slightly more changes that a grade 1 but less changes than a grade 3. What is important now is the staging and whether the cancer is contained within your womb. (Stage 1-2) If it is then the surgery should remove it and any follow up treatment would be to mop up any stray cells. I would then expect you to be on check ups - probably every 3 months for a couple of years- if you are like me- and then they would be checking for any early signs of recurrence. If anything did come back then it would be able to be treated at the earliest stage.
There are ladies on here who have also had a post op result with MMRd however the treatment generally depended on the stage and grade. So the genetic and other markers are more the fine detailing. Other ladies with MMRd are likely to have other stages, grades and markers so their circumstances will likely be different. The mix match repair gene is only one part of the picture.
My own cancer being a grade 3- and also my specific type (there are different ones) has a higher chance of recurrence yet I mitigate the risk by trying to keep as healthy as possible, I was checked every 12 weeks for 2 years. I am now on patient led follow up and any signs of issues I would go in. I am 2 1/2 years post treatment with no recurrence. For me the MMR status would not have changed my treatment or particularly altered my prognosis. It was the stage, grade and LVSI.
I found that if you try to focus on it all at once it can feel overwhelming. Whilst it is natural to want to know more, in my experience the best thing is to focus on one step at a time. So first step is preparing for the hysterectomy. Once you know your post op results then you will find out whether or not any further treatment is needed. if it is then that is the next step to focus on.
If you want to know a bit more then this info will help.
Womb cancer booklet | Macmillan Cancer Support
If there is anything you need, you know where we are.
Jane
