Diagnosis query

Hello Poppy58

I would suggest giving the Support Line a call in the morning and speaking to one of the nurses.

However I was told that P53 wild type was a better one to have as it is not a mutated gene. So wild type is seen as the more normal version. The MMR stands for mix match repair and is another type of gene. I was told by my consultant not to worry too much about the genetic markers and it was more for them. I had no MMR but MMR proficient would suggest you have. 

The stage and grade were more important from our point of view and they are normally given provisionally from the biopsy and they are then confirmed (or occasionally adjusted) post surgery. The stage and grade normally determines the treatments. 

Grade 2 means that the cells look more different to normal cells under the microscope. Grade 1 is when there is a little difference. Grade 2 is a bit more and Grade 3 is very different. 

The genetic markers are useful for the doctors when determining treatments and responses from what I was told. My treatments were due to the Grade rather than any genetic markers. 

Try not to worry too much. This is how it was explained to me but the nurses should be able to clarify it for you. 

Hope this helps a bit

Jane

Thank you Jane, I will call the support line tomorrow. I asked about the stage and they said at my appointment they could not say anything until after the operation so felt everything was left up in the air and was only told it was a grade 2.and that is why I was surprised to see all this additional information in the letter. I had my pre op on the day I saw the consultant and see the anaesthetist tomorrow so if I see any of the cancer nurses I will try and raise with them tomorrow. 

Hi Poppy58, I do feel for you being a bit freaked out by what you’ve read but one thing I’ve learned from my cancer experience is that medical terminology can be unhelpful in the words used and how it comes across to the patient, and also sometimes consultant surgeons can have such a matter of fact manner that they can come across blunt and even brash, without meaning to. Btw when that gene was named it was by a nerdy sort in a lab, it was never meant really to be a source of info for a patient to understand. Words used by scientists typically mean different things outside the labs. Try not to read too much into the word wild - my understanding is the same as Jane’s, that it’s just a word to describe a non-mutated gene. Go easy on your GP receptionist too as GPs would not be allowed to say anything about your case or your case as it’s not their sphere of expertise (or their job once we’re under the hospital). When you see the anaesthetist tomorrow, I’d suggest you ask if one of your CNS is available as then you can have a natter in person. 

Yes good idea to speak with one of the CNS. When I was first told my stage I was only told it was early. It was only later they explained that means stage 1-2 but that they would need to confirm post surgery. Maybe ask your CNS if it is early stage? From what I understand from my consultant he was unable to say for definite between 1 and 2 until he had a closer look because stage 2 just means that some cells have got into the cervix whereas stage 1- they haven't. Stage 3 means there are some cells that have got out but they are still local- locally advanced and in pelvis. Stage 4 means that cells have been found outside the pelvis. 

I hope today goes ok, let us know how you get on

Thank you Jane for the above, I saw the anaesthetist today so everything done and all good for the operation but due to the doctors strikes this week and next week which may also be ongoing I have been told my operation will be delayed and may take place now at another hospital in the trust area and then once I am in recovery and well enough I will then be ambulanced back to my hospital. I will just have to go with it as I want it done as soon as possible as this has been going on now since my GP referral in August. I still don't have an answer to the MMR Proficient P53 Wildtype other than it relates to my cancer being oestrogen based and was advised to ask the consultant to explain after my operation. I guess it doesn't really matter because what will be will be and my treatment plan will be explained post op. Its just me as I would rather know the facts up front. Thank you for your help though. My letter does confirm its a grade 2 and the cancer on the scan shows it is contained solely in the womb but I know this could change once everything is removed and lymph nodes tested etc. 

Hi Poppy58

I hope that you are not delayed due to the strikes. 

The majority of womb cancers are oestrogen driven and when there is an imbalance of the hormones (oestrogen/progesterone) this is when cancers can occur. I would try not to worry too much about the MMR/P53 as these are just genetic markers that are more for the doctors to worry about. I can understand you wanting to know the facts up front but after the surgery you will have post op pathology and this will look in more detail at the grade/stage and genetic markers and this is the time where they can probably answer any questions in more detail. 

It is promising that the scans show it is contained and hopefully this will be confirmed post op. Mine was still in my womb but it was the grade that meant I needed further treatment. When they have your post op pathology they will look at this in more detail and then go through it with you to decide whether the op alone is enough or whether any follow up is needed. It can be difficult to predict this on just the biopsy results.

Preop I was adenocarcinoma, probable stage 1-2 (contained) I was told possible brachytherapy but not chemo. Post op I was carcinoma sarcoma 1b Grade 3 and had chemo and radiotherapy. The specific post op pathology will help them look at your case in detail to decide whether or not to offer more treatment so its at that point it's probably more relevant and will help them decide on what happens next. 

Good Luck, and if there is anything else you want to ask, please do so.

Jane

Thank you Jane, My operation is now delayed and I have to wait for a new date which they hope to let me know early next week, fingers crossed its not too long!