Hello everyone,
I finally had my results from the hysteroscopy in September. The consultant had said that she saw suspicious tissue in the womb that could be cancer.
And she was right.
My background is, that I had a small polyp which was cancerous last year. A mirena coil was fitted and had seemed to stop further growth, but the hysteroscopy in March 2024 showed a very small amount of pre-cancer and grade 1 cells.
What bothers me, is that in March, the consultant said that the pathologist had to do a lot to find those pre-cancer cells, and yet 6 months later, the "polypoidal" tissue is seen during a regular procedure by the surgeon. Have they grown that quick?
Next I'm to have an MRI scan and CT scan. My NHS board has them done if the last lot are over 2 months old, which I presume is why I'm having them. The last time, there was no sign of any cancer on those scans.
And then, probably in time for Christmas, it's a hysterectomy. Happy Christmas me!
I know that I have been very lucky because my only obvious symptom was a small post-menopausal bleed. I was taking desogestrel for a long while to stem a heavy flow which ended up with years of no bleeding, so I'm not really sure when I started/ended the menopause. I only came off them during the pandemic when I'd queried menopause with my GP. I've had no hot flushes or night sweats, just a fuzzy brain every now and again, dry skin, thinning hair etc.
If I'm through the menopause (I'm 56), will having a hysterectomy mean I could still get symptoms? Would I need HRT?
It's probably psychosomatic, but I've had a niggling pain down in that region since I got my results. I think it's going to remind me that it's not going away without surgery!
I'm really just thinking aloud to myself, I know I need to speak the to the clinical nurse specialist for answers.
Hi Pendle
I am sorry to hear that it turned out to be cancer and that you will be needing a hysterectomy around Christmas.
It sounds like there were changes during the 6 months from your last hysteroscopy and that can unfortunately happen. It is one reason why some ladies have repeat hysteroscopies 3-6 monthly and also us ladies who are post treatment sometimes have regular check ups. It can perhaps be seen as positive though because it has not been there long so hopefully still at a very early stage. It is also very positive that your scans 2 months ago did not pick anything up.
It is normal to be offered the scans at this point as they are staging the cancer to see exactly where it is and this will help them plan the treatment.
I was also previously on the mini pill for heavy periods and it effectively stopped them for me. It can then be difficult to know exactly where you are menopause wise.
My understanding is that with a natural menopause the hormone levels drop gradually over some time and therefore any effects are felt more gradually. With a surgical menopause the levels drop overnight so any symptoms can be more abrupt. For me I did notice a difference with hormonal changes such a hot flushes but due to all the treatment I had it is hard to work out what caused what.
With HRT I was told it was not advisable for me as my cancer was hormone positive. So it was being fed by the hormones. If I took it then there is a higher risk it could come back. After your surgery there will be some more detailed post op pathology done which will confirm your stage and grade and some other information/markers. If you do get menopausal symptoms then it is worth talking to your doctors to see whether HRT or some other treatment would be safe in the circumstances. My advice though would be to see how it goes, give yourself time to recover from the surgery and let everything settle again.
I didn't particularly notice any niggling pains pre surgery but I did feel aware that something wasn't quite right but I did wonder if that was due to the hysteroscopy procedure and also the natural anxiety and emotional effects. I know I became more aware of my body and anything I noticed I automatically thought it was the cancer.
I hope that your CNS is supportive. There are a lovely bunch of ladies on here too that will want to offer you support and we have been where you are so remember how it feels. If talking things through would help then please do give the Support Line a call.
I hope that your scans can be done quickly and you get a definite date for your hysterectomy. In the meantime we are here if you need us.
Jane
Hi Pendle
You are right in that it is hard to know really.
My understanding is that cancer can appear at any point and just because someone is clear, then it doesn't mean that it can't start to show a few months later. The rate of growth tends to depend on grade and that is a bit different as it is about what happens to the cancer once it appears. So the grade is about how it tends to behave once it has appeared.
From a biopsy and scans the doctors can give a provisional stage and grade which indicates the type of cancer and where it is. After surgery then further pathology is done and this will give a final result.
A grade 1 cancer is one where the cancer cells are not much different to normal cells so there is a little change. These tend to grow more slowly and spread more slowly once they appear. A grade 2 would mean a bit more different. A grade 3 would mean much more different looking. A grade 3 may behave more aggressively in some people. With each grades there can be different types.
The stages are about where in the body the cancer is.
So for endometrial cancer a stage 1 would be confined to the womb. 1A is where the tumour has grown less than 50% into the muscular wall. 1B is where the tumour has grown more the 50% through the muscular wall.
If any cells have got into the cervix then it is considered stage 2 but still contained.
Stage 3 would be if anything has escaped the womb but still within pelvis.
Stage 4 is where any cancer is found outside the pelvis.
However there are also other things that are important and they will also be shown in much more detail with the post op results.
So at the moment it is positive in that they believe it to be low grade and at an early stage.
It can feel like ages while waiting for the hospital to contact you with the next steps. I actually contacted my GP who was able to find out what was happening. I did find however that once I was seen at the hospital things moved quickly. I saw the consultant for the first time on the Friday and my surgery was on the Monday.
Jane
