Hi
Following from my previous post after being diagnosed with endometrial cancer, I have been booked for surgery very soon and I'm trying to be prepared as much as possible so that I feel more in control of the crappy situation.
I got a second opinion from another consultant for piece of mind and to discuss options such as myometrial resection which I was advised is too risky as may not remove it all etc. I left the appointment feeling listened too and heard and understood etc with my concerns, and I wasn't dismissed or pushed back about the possibility of retaining my ovaries. I was told that as long as I understand the risk then it should be ok but to understand that if it doesn't look OK visually during the surgery, it will need to be removed or at a later stage if histology results dictate so. They also advised that they will get in touch with my consultant doing the procedure and do a letter so I'm hopeful that I can proceed on this basis. I will be having a tvs beforehand to manage expectations. I was also advised by my CNS that brachytherapy is only done as adjuvant therapy and not instead of a hysterectomy etc.
However, I would like to know of people's experiences with doing this so I am more prepared please and any tips for recovering that are helpful please.
I also post appointment discovered via the nhs app my mdt meeting letter and need some clarification on what the below mean if anyone could shed light would be great as won't see consultant now until day of surgery.
ÉR 8/8, PR|8/8, p53wt, dMMR (MSH6 loss)
Thanks very much in advance.
Hi again
I am glad that you are now feeling more in control.
I would agree that the resection does sound risky in that it could potentially not get it all- but it is good that you were listened to and it was explained why. Brachytherapy is normally an adjuvant treatment as it is there to try to mop up any cancer cells that may have been left around the vaginal vault. This is an area where recurrence can happen.
It does sound sensible to have the TVS to look more specifically at the ovaries before making the final decision.
With the details on the letter- these are the results form the biopsy.
ER and PR mean that your cancer is positive for oestrogen and progesterone. I had the same and was told that it is often the case and not surprising since our wombs are directly affected by oestrogen and progesterone during the menstrual cycle. It means that hormones had a role in the cancer growing.
p53wt- this is the normal non mutated form of the p53. p53 is a protein that is a tumour suppressor. wt means wild type- wild type means that the p53 is functioning correctly and has not undergone any mutations that would effect what it does. wild type is just how it looks under the microscope.
dMMR- means that it is deficient in mix match repair. The MSH6 loss means that part of the it is not working as it should. This is genetic information that helps the oncologists match the best treatments to you.
I had similar results and it did not affect my treatment. However if in the future I had a recurrence and went to a second line treatment it would help them work out which is more likely to work.
Whilst the information is useful to the doctors- for us the most important thing is the stage and grade of cancer and this is normally given provisionally before the surgery and confirmed in the post op results.
Jane
Googling can make you feel overwhelmed and it is natural to want more information. However at the moment just try and think of the information is just something to help the doctors decide the most effective treatment. Whatever markers are there will unlikely change the recommended treatment from a hysterectomy.
Where the markers are more useful is where someone needs further treatment after surgery or if the cancer comes back- then they look at the markers to see which follow up treatment is likely to be best.
Initial treatment is normally a hysterectomy where it is medically possible.
For a high grade or higher stage then sometimes follow up treatment is needed. This is not confirmed until post op results are back. This treatment can be radiotherapy or chemotherapy. There can be others offered.
It is indeed a journey - if your experience is similar to mine then once you have your treatment plan and know what is going to happen and when, things will feel a bit easier.
Good plan- focus on what you know and worry about the rest IF and when you need to.
I found it helpful to sort the practical things out- how I would get to and from hospital, what I would take, preparing home for when I came out, food shop etc. I found if I focussed more on what I could control and prepare for the less I worried about the what ifs.
I also did things like give the house a good sort, arrange a comfy area on sofa with duvet and plenty cushions. Made sure I had a table close by. Also have a think about clothes- have you got what you need? For me comfy and loose was best. And layers. Slippers or something for hospital, dressing gown- I had to walk to theatre down a corridor in a gown so it helps, I bought a nightie for hospital- but ended up just staying in the gown. I also bought things like hand gel and wipes to freshen up with. I bought a few ready meals and snacks for the first week home.
Toiletries, phone charger, puzzle book, magazine- things that you might find helpful.
Focus on the practical things that are under control
I would advise against vacuuming- I bought a lightweight one to use but it was the movement side to side that felt uncomfortable.
Nighties are a good plan- anything loose and comfy. I bought cotton big knickers in a larger size and found them comfy.
Wheeled suit case is a good plan. I didn't use half the things I took with me but it was good to be prepared.
My hospital experience was to sit on a chair in a waiting type of ward - had all the obs etc done- then walked to theatre around 12 ish. Back in recovery around 530/6. Home the next day. So things that you can do while waiting around is good
