MMR deficient endometrial cancer

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

Hello Jane,

Thank you for replying!

Since you mentioned the consultant referral to genetic information, if I may ask you, were you diagnosed MMRd?

I can’t seem finding anyone who was diagnosed MMRd, and the only thing I found on google is that it has the higher recurrency rate, and worse prognosis.

Would love to connect with someone who has experience with that type of cancer.

thank you!

all the best!!

Hi Cat66, I do empathise with your wanting to know, as the thought of knowing can make us feel like we have some kind of handle on it all -  however it would be a really good idea to stop yourself googling as you’re highly likely to find stuff that is either irrelevant to you, out of date, inapplicable, misleading or even in some cases downright wrong, and cause you needless extra anxiety. Also, if we are given grades or stages pre op they’re not actual grade/stage but predicted grade/stage. When you have your hysterectomy, it will all be sent off to the lab and you will get your histology results a few weeks later with your actual grade and stage confirmed. For many it stays the same, for some it changes, but nothing is definite until those results are through. Also, treatment plans (if needed) are very individual and two women with the same grade/stage could have different treatments (or none) depending on their individual case, I suggest you try to focus on preparing for the op, what you’re packing, how you’re getting to and from there, and anything you can do now to make things easier for yourself when you come home. Have you been told how soon afterwards you will get your results?

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

Hello Jane,

Thank you very much for your support and sharing. What you wrote put me more at ease. By nature I am a worrying type). I start meditating trying to concentrate on the surgery, and most of all stop googling.

I wish you all the best!

Hello MarmiteFan59,

Thank you for the words of encouragement!

I was told that I will be seeing an oncologist in about 6 weeks after the surgery. 
I know it will be full hysterectomy with sentenial lymphs removal.

i believe this is a general protocol in Canada.

I ll post an update when I know more.

Wishing all the best

x

Hi Jane... I hope you are ok .  I have just this week been told I am now cancer free having received 23 radiotherapy sessions and 6 rounds of chemotherapy for stage 3 grade 1 Endometrios cancer.  I saw my new oncologist last Tuesday who has told me I am at high risk of a return due to my cancer having been an aggressive one that had managed to spread to outside my womb.  There is a 65% chance that it will return within 3 years and if it does they won’t be able to cure it.  I’m really shocked because whilst I’d already been told that by my previous oncologist I had no idea it would not be curable !  I certainly don’t feel like celebrating !  My previous oncologist had also told me that I would receive a CT Scan every 3 months for the first 3 years then they would be reduced to every six months.  He has now left and my new oncologist who I met on Tuesday said I’d receive a CT scan in 6 months then once a year upto the 5 year mark !  I’m really shocked now and feel really scared like a ticking time bomb!  Since my treatment finished on the 7th January I am so tired and fatigue is horrendous!  I still feel like any energy that I had left after the treatment has been completely zapped out of me !  I can barely walk due to the chemotherapy and I’ve been told by my oncologist that if my neuropathy in my feet and legs hasn’t gone in another 2 months then I will have it permanently !!  It is horrendous but my doctor has prescribed me Gabapentin which is thankfully working because it was so painful but at least it is bareable now!  I wouldn’t wish cancer on anyone !!!  X

Hi Dramalady

Well done for getting through all that treatment- I know to have the chemo and radiotherapy- it is a long and hard slog at times. 

I can understand why you are scared after being told about the recurrence rate however at the moment you are cancer free so try to focus on that. If the cancer does recur at some point in the future- deal with it then. Thats how I felt. You have done all the treatment to give yourself the best possible chance. I never asked for my recurrence rate but I knew because it was an aggressive type it was a higher chance of return. 

Instead I focussed on what I could do to manage the situation. I had appointments every 12 weeks for 2 years. I am now on patient led follow up. It has not yet recurred and I was told that the most likely time for a recurrence- if it happens- tends to be 1 or 2 years post treatment. With each passing month the chances of recurrence drop. My CNS said that although with cancer, it can return at anytime, if it does it she more often saw it happen within the first or second year post treatment. She explained that is why they focus on face to face appointments for the first couple of years. The idea is if there is any sign of recurrence, it will be found quickly and at it's earliest stage. 

Also I asked about what to look out for as signs of recurrence and if I had any of these I could then email my CNS and she would if needed get me in to check. 

The signs to look out for are in this link.

Check-up appointments after endometrial cancer treatment- Jane's story - Macmillan Online Community

I asked also about what would happen if there was a recurrence. I was told it would depend a lot on where it happened and the extent of it. So a small recurrence at the vaginal vault may be treated with surgery. Whereas a recurrence further afield options could be chemo or immunotherapy/targeted therapy. Although a recurrence could be seen as incurable - that does not mean that in many cases it could not be treatable. So for instance a small recurrence in one area could be removed and therefore lead to remission/NED. 

It sounds like your follow up is a bit different to mine and that can often happen with different hospitals. I never had CT scans as routine. But the main thing is they are thoroughly checking you and if you get any of the signs mentioned in the blog then contact your CNS straight away and they will get you in. 

I can understand why you do not feel like celebrating- after my treatment ended I felt sort of numb and frustrated that the treatment left me with side effects. I expected to feel really happy but I just sort of felt flat. I think that when you have the amount of treatment that we had, then it can all happen so quickly that there is not time to process it all. 

However positive we try to keep it on here- the fact is for many people chemotherapy is hard. Radiotherapy is hard. For me the cancer caused very little in symptoms but it was the treatment that made me feel ill. That is hard to come to terms with. 

I also have the neuropathy and still have it. I was given amitriptyline for it. If yours persists then I recommend having a physiotherapy assessment at some point. Mine have me exercises and advice about things that would help. Although the neuropathy may not be cured - building up the muscles around the area will help offer support and anything that gets the blood flowing to the areas affected will help. I found quickly with mine that to keep moving was the best thing. The more I sat, the worse it became. 

How you are feeling now, is pretty much how I felt after treatment ended. The fatigue was tough and did persist for a few more months. I still have it now but only occasionally. Have you had your bloods taken recently? it may be worth having a full blood count done via GP. After chemo I had some problems with my blood and in particular haemogloblin. In the end I needed to have a blood transfusion. After this I felt a lot better. I also needed to take magnesium supplements for a while. 

One thing that helped me was to take a photo of myself each week. I could then see the difference and could see I was starting to recover. To start with I looked atrocious -really poorly still but as I looked back I could see I was beginning to recover- and you will too- it does take time. I would say the first 6 months I felt pretty rough. By a year I felt and looked much more like me. 

All those cells that have been affected by the chemo and radiotherapy- it takes time for the normal cells- eg; blood cells to re grow and get to the right levels. Although you should start to feel a bit better soon, it will take time and that is normal.

if you want to talk it through please do give the Support Line a call. 

If there is anything you want to ask about please do so.

Hang in there.

Jane

Hi Dramalady

Jane has made a number of really good points so won’t repeat them, apart from the one that you are cancer free at moment, and however hard that is to try to focus on that, and that you have done everything you can to remain so.  That’s what’s keeping me going at moment with my chemo.

in terms of statistics etc, my background is a statistician, and I have had discussions with my oncologist about stats. Was quite funny the day I said to the surgeon what I did for a living, the nurse immediately wrote it down, and by the time I met my oncologist 15 mins later he knew, and almost greeted me with “ so you’re a statistician”.

As a result instead of having the conversation about not googling, we had the conversation about if you want to research more take a look at this…which happened to be the Portec3 trial.  What amazed me about this was, how few cases were used to come up with these statistics. In terms of my own stage 3A, there were 43 people in the worldwide trial that did the chemoradiotherapy route rather than 39 that did radiotherapy only. And then within these 43 people you will have different grades plus other factors/ histology. This all led me to the comment Jane has made, try not to think of the stats, but the fact you have put yourself in best place possible to prevent recurrence.

Easier said than done though, and wish you all the best as you recover