Thought it was peri, now diagnosed with endometrial cancer

[Tarkan]

Hi all, it’s taken me a little bit of time to get the courage up to post here. I ramble a lot so will try to stop this becoming too long while sharing my story so far.

Back in December I went to my GP thinking I was hitting perimenopause. I honestly only went because I was going through the craziest mood swings and paranoia and I was pushing DH and my friends away. My periods had also changed and I was flooding badly every few weeks with lots of lighter bleeding in between so GP suspected fibroids and referred me for a scan for that while putting me on HRT.

Mid-February was that scan, both a vaginal and external ultrasound. Results from that showed an enlarged womb so GP told me to immediately stop the HRT in case it was “something untoward” (her exact quote).

After that it’s felt like a whirlwind. I was so petrified of it being cancer but felt I didn’t have anyone other than DH and one friend to talk to (my two other closest friends both recently lost close family members to cancer and one told me to stop talking about the possibility as it was triggering for her).

Hysteroscopy was in March. I had multiple polyps removed, biopsies taken (which I had been told they were going to do anyway “just in case”) and a Mirena inserted. Afterwards DH and I were taken to a private room and told my endometrium had looked abnormal so they’d try to get the biopsy results ASAP for me and just over a week later I got the phone call to say Grade 1 endometrial cancer.

All the previous appointments were at different hospitals in our area so on Monday just gone I got to meet the team I’ll be under.

The next step is an MRI which is booked in for the 12th and after that I have the choice of a hysterectomy or because my BMI is high which makes the surgery riskier, as long as the MRI doesn’t show it anywhere else I can choose to wait for a year or two while working on my weight loss and having biopsies every 4 months.

At the moment I think I’m going to go towards the surgery anyway. Despite the Mirena I’m still bleeding every day although thankfully much lighter than it was and what I didn’t get to tell the doctor was that I’ve been trying to lose weight for years and in that time I’ve only lost a stone. My main issue there is really that I’ll do well losing weight but because I have fibromyalgia I’ll end up having a really bad flare up or my back will seize up (had back issues since my teens) and end up just surviving on the unhealthier food then. A lot of my calories previously were from fizzy drinks and alcohol as well so trying to work on cutting them out (not easy when I can’t have artificial sweeteners and one of my hobbies involves being in a pub but I have a plan in place for that now).

I know this has ended up being super long but that’s pretty much everything so far. Oh and I have always had health anxiety so that’s spiralling like crazy right now as I’m sure you can imagine.

The gas they fill you with causes a lot of pain and discomfort. The painkillers made me feel sick. Fortunately the pain does ease quite quickly. I found getting up and having short frequent walks helped. You’re doing brilliantly @Tarkan . Here’s some flowers. 🌸🌼🌺🌸🌼🌺🌸🌼🌺

Some of my incisions have almost healed up now. My body has always been a bit of a dick with dissolvable stitches so the nurses told me if they don’t come out themselves that I can just give them a really hard scrub in the shower and that will help. I’m still wary of that right now but hopefully a few more days and the last ones will look more healed too and I can do that.

They’re all incredibly itchy too. I’ve been using ice packs to stop the itch but god I just want to scratch away at my belly LOL.

I was also intrigued and decided to step on the scales today. I did my best to lose weight in the few weeks between diagnosis and surgery and couldn’t get a single pound off even though I tracked every single calorie apart from one meal out for my dad’s birthday.

Well since last week I’ve now lost 8lb. I have no idea how much of that weight was to do with what was removed of course but it’s got me wondering how heavy it all was now. I’ve been treating myself while recovering as weight loss and calorie counting will start back when I’m back to normal. My back pain still hasn’t come back so I truly think the reason I could barely walk before was all because of this. I used to be a really active person, walking miles and miles with my dog, and doing hours of different exercise classes every week and the back pain put an end to all of that. I’m hopeful I can get back to it all after I’ve fully recovered but it has got me wondering how long this was actually growing without me realising.

I can’t remember if I mentioned it or not but my lymph nodes were slightly swollen so we have the agonising wait for pathology results now to see if I need any further treatment at all. They’ve apparently had a lot of work to get through so there are delays there so I think this stretch of waiting is going to be worse than any other part so far.

Glad to hear you're still recovering well and healing @Tarkan
Did you have robotic surgery ? I did but they had to make a larger incision to remove the uterus as I haven't had children and as it was enlarged they didn't want to remove it vaginally. I think they used glue to stick my incisions together - like you one was very itchy for a while but it does get better.

Fingers crossed that you won't need further treatment - unfortunately I did as they found afterwards from looking at what they'd taken out that the cancer had advanced towards the cervix.

Yeah it was robotic so I’ve got 5 little cuts from that but I have had two children so I had the vaginal removal.

I know the cancer had gone deeper into the womb wall than they hoped (that’s what the MRI showed) but I’m just keeping everything crossed that that’s all it’s done. Because I’ve always had awful periods I’m rethinking how long this has possibly been an issue for me as well. I’ve been a little under the weather since getting out so hopefully that’s what’s caused the swollen lympha. My aunt has NHL so as soon as they mentioned checking my lymph nodes I did worry a lot and it’s just a matter of waiting which I don’t do well. I’m very much an overthinker when it comes to everything. 🙈

Was just thinking of you x - hope your test results come back ok

It’s been a few days so just wanted to update quickly.

DH finally came home with a lovely bunch of flowers for me yesterday. 🙈

Healing-wise the stitches are out of 4 of my incisions and they’re mostly healed up. The last one is just above my belly button and the way they had to stitch it there’s a bit of a bump to it, so I think that’s why that one’s taking longer to heal and the stitches are still firmly in there.

The hormonal changes are starting to kick in. I’ve been crying over absolutely everything the last couple of days.

Some of my back pain has come back but usually just if I’ve been lying in bed too long. It’s still nothing like I was having before. The injections are nipping quite a bit now and the compression socks are pissing me off but I’m just reminding myself a blood clot would piss me off even more LOL. The injections are causing quite a bit of tiredness so I’m just napping when I need to.

Today is hopefully going to be my first time out of the house. Not sure what DH has planned other than he’s taking me out in the car somewhere. It’ll be my first time in our car since surgery as it’s a sports model so quite low to the ground so didn’t want to get in it until I felt I would be ok getting out again (another reason a friend drove me home from hospital as she has a nice MPV so was much easier to get in and out of straight away). It’ll give me an idea if I’ll be ok for my friend’s barbecue on Saturday and the pub for the Scotland game later though so fingers crossed. 🙂

Hope you are well enough!

I did have cancer cells infiltrating the lymph nodes and it was very interesting. I was followed up by the clinic for 2 years but the doctors (different ones and at different times) told me that the research is very unclear on what it means and it doesn't seem that they are linked to bad outcomes. I hope you are clear though!

So I got the phone call about my results yesterday.

And it’s amazing news! I don’t need any further treatment. 😍😍😍

Apparently the cancer was basically the lowest grade within the lowest grade so they’re happy that they got it all with the surgery.

I’ll still have follow up appointments with the nurses for the next two years but apart from that I can just try to get back to normal. 😍

As for my recovery, someone at either the barbecue or the pub I went to was ill and gave me a horrible cold type bug, so ended up completely housebound with it for over a week. I did try to go out on Sunday but felt like I was going to pass out so DH had to come pick me up. Yesterday was the first day I felt I could go out and be mostly normal but I definitely overdid it and I had a huge amount of pain in my hips and pelvis when I was walking so I know I need to go back to a little bit at a time. I ended up shuffling home and a walk that would normally be 10 minutes took three times that. 😫

I still have one stitch just refusing to come out and I’m keeping an eye on it as I keep catching that one on things or accidentally bashing things off myself right where it is so it’s a little red and scabby and I’m just keeping an eye on it to make sure it’s not infected.

I completely forgot to ask the nurse who phoned me about the HRT the doctor said I could have if my results were clear so I’ll have to phone them back but I’ll probably do that tomorrow and just relax for a bit today.

I also just want to thank absolutely everyone who has been so lovely and supportive in here. It really has helped me cope through such a horrible time.

I’m sure my health anxiety will kick in again every time I have one of the follow up appointments but fingers crossed in two years I can say I have the proper all clear. 🥰

Amazing news! Wahoo!

Fantastic news!

Firstly a huge hug. Your story sounds so similar to mine, thought I was peri and gluten intolerance…. Nope, bowel cancer! Last March.
I want to tell you my story as a positive. X
march last year I went for routine colonoscopy to rule out a bowel condition that’s in the family. Taken to the fancy side room with the comfy seats and box of tissues. I had grade 3 colon cancer.

fast forward, after surgery (last June) and a round of chemo tablets (took them at home so no hospital trips and no loss of hair etc) the chemo was my choice but I chose to do it for the extra security.

yesterday I had my first scans back (1y) and all clear and cancer free.

don’t get me wrong, it changes you but it’s not the big scary thing that we all think of. You’ve got this 💪🏻

So pleased for you @Tarkan .

I have just read your full thread and had to post to say I’m delighted for you, and so happy that you don’t need any further treatment. I hope you recover well from the surgery and have a lovely summer.

Really relieved for you @Tarkan xx

In your position I would take the risk and have the surgery now.. I wouldn’t wait, the worry itself would kill me. Thank goodness it’s stage 1.

@Tarkan did have the surgery.

Sympathy as I too suffer from health anxiety. You’ve been much braver than I would be. Brilliant news! Delighted for you. x

THat's brilliant news @Tarkan - thanks for sharing it with us. As a PP above said, cancer is no longer necessarily the death sentence that some people seem to think it still (although it remains a very scary roller coaster),,,,

Thanks all, honestly it really has helped so much having people here through it all.

And yeah @cupfinalchaos as @Lougle said I had the surgery already. Things changed a few weeks ago and I no longer had the choice so I’m now over 3 weeks post-surgery and recovering.

Hopefully you won’t hear much from me after this. I know I’ll have wobbles with the nurse appointments but fingers crossed they’ll all be perfectly boring. 😁

So pleased you’re over it, hope you go from strength to strength x

🤞for boring appointments.

@Tarkan Thank you so much for sharing your experience, and thank you to everyone else who has replied as well. Reading your story and all the kind, supportive responses has brought me a huge amount of comfort and encouragement at a time when I really need it.
I’m currently in a similar situation. I’ve been found to have a thickened endometrium with a few small cystic spaces, as well as a suspected dermoid cyst on my left ovary. My GP has now referred me under the 2 Week Wait pathway to gynaecology/oncology for further investigations.
All the uncertainty has made me feel extremely upset and anxious, but reading about your journey, your honesty, and everyone else’s generous sharing of their experiences has genuinely helped me so much. The way you described everything was so thoughtful and lovely.
I really hope I will also have a good outcome in the end.

I’m so sorry you’re going through this worry too @SoftRainSky

I’m glad my thread has brought you comfort and I’ll keep everything crossed for good news for you. Please keep me updated on how you get on. 🥰

Thank you I did not read the update sorry.

You should start your own thread @SoftRainSky . That way you’ll get support for what you’re going through. I’ve found Mumsnet is amazing when you need support with something like this.

I’ve been through the two week thing, cancer was found, so I had surgery. That was 12 years ago and I’m still here. Even when cancer is found, it’s not necessarily a death sentence, even though I thought it was.

Everything crossed for you. The waiting for tests and results is awful. 💐