Possible uterine cancer

[Lovemusic82]

I do have a post on women’s health but thought I would post here just to see if anyone else has been in a similar position or if anyone else is experiencing the horrible wait for answers/results.

I have had issue with my periods for years and have been getting to the point where I was going to be added to the waiting list for hysterectomy, was told it would be key hole, vaginal removal. I was asked to go for one more hysteroscopy before being put on the list. During the time I was waiting for this (4 months) my symptoms have got worse, mainly the pain in my pelvis and bleeding in between periods. I went for the the hysteroctopy last week but they were unable to get past my cervix to my uterus so we’re unable to take a biopsy. I have now been fast tracked on the cancer list for hysterectomy and have been booked in for next month. I have been told my uterus is measuring at the size of a 14wk pregnancy and I now have to have abdominal hysterectomy.
l was shocked at my appointment and didn’t ask many questions so today had a call with tithe surgeons secretary to go through my notes. All I have been told is that because they can’t get a biopsy they are treating it as the worst case scenario and removing it ASAP, I won’t know until after surgery if I have cancer or something else.

I had an ablation 2 years ago which didn’t work, there is a possibility this has caused scar tissue or adenomyosis, they don’t think it’s a fibroid as none of my previous scans have shown any and they don’t tend to grow that fast (though not impossible), my last scan was 10 months ago and they couldn’t find anything other than a tiny ovarian cyst.

I’m so anxious and barely sleeping or eating, the not knowing is horrible.

Anyone else in a similar position?

I’m sorry you are going through this. I’m shocked you have been neglected for years. I may be at the start of where you are as I have been referred to gynaecology for inter menstrual bleeding and pain. I have been on a wait list for months and have yet to see anyone other than the GP that referred me. I did have to go to the GP a few times to get referred (3x over 6 months as I was dismissed at first. They wanted me to have 6mos of it before they would refer)

It’s crazy isn’t it? We are told if we have any bleeding between periods to go to our gp’s yet it’s not taken seriously. I have had spotting for years but pretty sure most of it was due to my cervix (erosion) it’s only the past few months when it’s been more like a mini period around ovulation time or just after. I have pressure in my pelvis which is now obviously due to the size of my uterus. It’s taken so long to get anyone to take me seriously and now suddenly everything moving pretty fast. I hope you get seen quickly, I had to wait over a year to be seen and then another 4 months for the hysteroctopy, I had one scan in that time (last April).

Hi, I’m not surprised you can’t sleep and I can’t believe they haven’t called you in and explained what’s going on. Very poor communication.

If they believe there is a chance of cancer, then they will fastrack you. It doesn’t mean you have it, but it sounds like you have some of the symptoms to automatically fast track you (bleeding in between periods or after sex).

I had a vaginal hysterectomy and it was fine. I was back at work within the month. It will take you longer after an abdominal one, so make sure you take things easy for the first couple of weeks. Absolutely no lifting for 4-6 weeks!

Once they have removed the uterus, they will biopsy what they have taken out. I’m afraid it’s a waiting game. Biopsy results can take a few weeks. More scans may be called for (ct or mri)- it depends on what they find. It sometimes feels like there isn’t much urgency, but they will be having regular MDT (multidisciplinary team) meetings to discuss your results and treatment.
Hopefully, no further treatment will be needed and that will be the end of it.

What age are you OP? Are you having your ovaries removed as well?

I had uterine cancer at 48, four years ago. Caught early and it's one of the most treatable cancers. I'm fine now and cancer free. Feel free to PM me if you would like.

I am 42, they plan on leaving my ovaries In if they look ok. They mentioned that they might not be able to remove all my cervix but I’m not sure why? I am down for full abdominal (cervix and uterus) but I guess it depends what they find when they get in there.

Pushkinini I have read that survival rate is high, I am trying to concentrate on the fact whatever is going on in there wasn’t there 10 months ago so if it is cancer hopefully it’s in early stages, though I don’t know how these things really work. Did you need any further treatment after it was removed?

@Lovemusic82 Just answering your question in case @Pushkinini has logged out for the night 🙂. I also had uterine cancer (diagnosed aged 52, so had my ovaries removed as well). It was staged at stage 1a after the hysterectomy ( pre-cancerous before the hysterectomy). No further treatment was needed. I had lots of scans (after) and also had tests for a hereditary condition. They all came out clear. I don’t even have regular check ups - they are that confident that it’s all out.
It is a very slow going cancer and yes, it’s a really positive thing that nothing was found last year. 69% of women are diagnosed at the earliest stage.

I had a full hysterectomy, so womb, ovaries, tubes and cervix removed. Mine was stage 1 so I didn't have to have any radiotherapy. I think with stage 2 and higher this is given. It turned out that I have something called Lynch Syndrome which increases my chances of other cancers including bowel. If you do have uterine cancer, given your relatively young age they may offer you genetic testing for this.

My journey started around this time four years ago. Like you, I had bleeding in between periods, a bulky uterus and I also had heavy and prolonged bleeding. I had a scan which showed a thickened endometrium so they referred me to gynae. At the time, it didn't really register that it might be something sinister. A month or so later I had a hysteroscopy and biopsy and was fully expecting that to be that. I had a call a week later to go and see the consultant and that when they told me it was cancer.

Like you, I was a wreck. I couldn't sleep, had hideous anxiety and I lost about half a stone in a week. Fortunately, I got a cancellation and I had my op within two weeks of being diagnosed. As I said, caught early, endometrial cancer is very treatable. I have biannual colonoscopies now because of my Lynch Syndrome, but gynae-wise, I'm fine. Word of warning, it is cancer, you will go into surgical menopause and a lot of oncologists are very reluctant to recommend HRT.

I have read that it’s a struggle to get HRT after surgery and many people have to wait weeks/months. I am worried as I’m already a hormonal mess. I thought I was peri and tried HRT a few months back but didn’t get on with it and it made me even more anxious. I’m worried about coming out of surgery and going straight into menopause. They have said they plan to leave my ovaries which I was hoping was a good sign that it might not be cancer? My minds just working over time and I have googled so much (probably not a good thing).

I will have a normal period and then five or six days after it ends completely, I have been getting 3-4 days of LOTS of bright red blood. It doesn’t even look or smell like period blood, but is like a period in quantity.

24/7 I am in pain but I have sciatica too and some days can’t tell if there is pelvic pain mixed in, but whatever it is my pain levels are higher than they were before this bleeding started. I have been tracking and the first inter menstrual bleed was May 2023.

I don’t get it every month, but most months.

It took until end of November for the GP to refer me. Still waiting for my first appointment with gynae. I hope I’m not waiting over a year because that will be 2025!

If they are leaving your ovaries then I would take that as a good thing. Pretty sure they take the lot with endometrial cancer in case of any spread that can't be seen by eye. They tested all my bits post op and my cancer was confined to my womb.

I have the sciatica and pelvic pain too. I woke up the other day and could barely move as there was so much pain in my pelvis (first time it’s been that bad), i am now finding I have to pee quite urgently too, i’m guessing my uterus is pressing on my bladder.

My periods are pretty painful, not as heavy as they were but a lot of clots, I seem to get spotting every other month (not every month), I get pretty bad pain before I start spotting so I know it’s coming. This months I have been in pain since my period stopped rather than when I was bleeding, it’s been pretty constant.

Do keep pushing. I looked at going private but I couldn’t afford it, im now wishing I had found the money.

That’s what I’m hanging onto right now. I am waiting for my smear test results as they did a smear whilst I was there last week, I’m hoping my cervix gets the all clear before I go to surgery, this would make me feel a bit more relaxed.

I am now considering a private ultrasound, I’m still confused as to why I haven’t been offered one, surely it could possibly rule out cancer? I also want conformation about the size of my uterus and check my ovaries for cysts as I have had a lot of ovary pain.

I don't think an ultrasound can confirm or rule out cancer on its own. I had an ultrasound which picked up a thickened endometrium, but still had to have a hysteroscopy and biopsy which confirmed it. Even after my hysteroscopy the medics thought it was likely to be hyperplasia rather than anything sinister. A biopsy was the definitive diagnostic.

Thank you, you’re right. I guess I just want conformation that somethings going on, I know deep down there is something as I’m having a lot of pain and pressure in my abdomen. I have pre op this morning so I will ask a few questions.

@Pushkinini hey. Sorry to jump on this thread. Please could I ask what your measurement was to consider it thickened? Thank you! Hope you're doing ok

@hallefairymy endometrium was 24mm when measured at a scan. I also had a womb full of polyps which they found when I had a hysteroscopy.

Im nearly 5 years on now, and I still cancer free.

@Pushkinini thank you for responding. Amazing that you are doing well ❤️