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.

I'm sorry to hear about your diagnosis.
I think one thing you can do (to help feel like you have some control) is see a dietician or slimming group.
This will prep you for surgery- if that's your decision.

I'm sorry to hear your news. The good part is that it's been found early and is Grade 1, which means it's slow growing. Unfortunately mine was Grade 3, which is probably why I was told immediately the solution was surgery, (Womb, tubes and ovaries removed) even though I'm morbidly obese. Everyone is different, but if it helps I got through the surgery with no problems.

Thanks to both of you. Tbh if I pick the surgery my doctor has told me there isn’t time for me to lose the weight I need to lose to make it safer. I’ve done slimming clubs in the past and they aren’t for me and it took me a long time to get away from the disordered eating they caused in the first place.

The bleeding has got slightly heavier recently with some cramping so I think that’s convincing me to just do the surgery (and thank you @P00hsticks because it’s good to hear from people who have had the surgery and been ok).

MRI is now a week tomorrow but tomorrow is my wedding anniversary so DH and I are going to go out and have fun and try and take our minds off everything. He has been absolutely amazing but I know he’s properly scared shitless by all of this too. My anxiety has calmed down for now but I know it’ll start getting worse the closer to the MRI I get as I’m so scared they’ll find it’s all over the place and then I won’t have the choice anyway.

I’m sorry that you are going through this; it’s a lot.

Are weight loss injections an option for you? I don’t know whether they’d be contraindicated in your circumstances so you would need to talk to your cancer specialists rather than just your GP.

Oh I'm very sorry to hear that ((HUG))

I'm glad you've got a lovely DH & hope you can support each other through this.

Enjoy your Anniversary to the max 🌷

Enjoy your anniversary.

I thoroughly recommend the Macmillan website for up-to-date accurate information and for help and support. There is an online community forum with a number of different sections, e.g. one for endometrial cancer and one for friends and family of cancer sufferers, where you can chat online with others who are or have been in a similar position to you. They also have professionals available that you can phone or online chat to if you want.

I wish you well - please keep us updated with how you are let us know how ou are getting on with

Macmillan Online Community

The doctor did say if I waited then they might help but honestly we can’t afford it and I don’t actually eat very much usually so I don’t know if they’d do anything for me anyway.

DH has been taking a lot of time off work to be with me and I’ve been a carer for my youngest who is now 18 so their CDP has stopped and we didn’t get their ADP application in on time so even basic expenses are tight for us for now so something like that is definitely bottom of the list for now.

I was in a similar situation but without the biopsies as the tumour on my ovary was so large a biopsy could be negative in one area but positive in another - I was given option to wait and see what developed , have biopsy even though it might not be accurate or have the surgery - I went for the surgery , due to several crohns surgeries key hole was not possible so full open hysterectomy inc ovaries cervix and womb and omentum and nodes removed and tested. As it turned out it was stage 1 but I personally couldn’t have handled not knowing what was growing inside of me and even worse whether cancer was developing and how fast

Oh and during the 4 months from initial tests to surgery I lost over 3 stone on Mounjaro to help reduce surgical risks so it can be done

Thank you! I actually just met one of the Macmillan nurses after my last appointment and she’s given me her number and told me about all the other local things there are for me including the Maggie Centre and the online stuff too. It’s one of those things where there’s been so much help and support it gets overwhelming (in a good way) so I’m just trying to see what would be best for us. I did tell DH there’s support through Macmillan for him too as weirdly I think he needs it more than I do right now.

Your last comment has really spoken to me because at first I was told I could decide if I keep my ovaries or not but I’m of the same opinion that I would worry something would happen there too and it would cause me too much stress so I did say I would be fine with that too. The most recent doctor I met has either been told that or thinks it’s best for that too as she said the whole lot would be taken.

Sorry to hear this. Must be very scary time for you and horrible to wait. I hope the MRI goes well. They are a bit scary and it's not nice being in the machine but it's not too bad. If you feel like it's a bit to noisy, just pretend your leaning on your washing machine. That helped me and then it was quite soothing. I love watching my washing machine but I'm a bit weird I think.

My SIL is obese and she came through the surgery okay. (It was held up because of lockdown.) She required no further treatment and has been cancer free for 5 years.

Wishing you the very best OP.

I know some cancers can be very slow but to be honest, grade 1 is the best success rate for a cure. I don't think I could go through months/years of being monitored as for me, too much of a risk for the future. I understand there are risks for the surgery, but there's no guarantee you will lose the weight anyway , so be kicking the can down the road.

Sorry OP, proper rotten news for sure and glad being supported, your hubby sounds lovely - and enjoy tomorrow.

Honestly this is how I’m feeling. I know technically I’m “lucky” with my diagnosis compared to other cancer diagnoses but I’m struggling mentally so much with it now and I can’t see that getting better for me. I don’t think I could cope with the panic between every biopsy.

No, am with you, the worry would be too hard.
I wish you well going forward and hope that you get the help you want. Sending big hugs over MN x

I would think you would be able to make a strong case for NHS funded WLI. If it’s something you’d consider then I’d ask.

Mine was stage 3. I was obese at the time. I had a hysteroscopy after vaginal u/s--at that stage they said stage 1.

I opted for a radical hysterectomy as I am past menopause. I was diagnosed stage 3 after the operation as the cancer was in my lymph nodes. All that means was closer monitoring for 3 years. I wasn't offered radiation or chemo as they would make no difference in my outcomes.

5 years on and all good. If you have to have cancer it's the best kind as it is so easily removed according to my gyno.

I’m so sorry you’ve joined the club no wants to join. I was diagnosed with ovarian cancer 12 years ago. This was after vague abdominal symptoms and spotting. I had enlarged womb lining and they thought that’s where the cancer was. But it was right ovary that had a big tumour around it, which was producing hormones. I had a radical hysterectomy, removal of 6cm x 10cm tumour and removal of my omentum.

You’re doing good to lose some weight. The other thing they might offer is local anaesthetic with a spinal block and sedation. I refused at first but they convinced me it was a good option. There are fewer complications than from a general anaesthetic and you recover more quickly. I knew nothing about the surgery and I didn’t vomit after, from the anaesthetic drugs.

I was obese when I had a staging laparotomy for my almost 6kg stage 1A Mucinous ovarian cancer. I had no choice when it came to surgery and everything I could live without was removed - cervix, womb, ovaries, fallopian tubes, appendix, omentum and some lymph nodes. But truth be told even if I’d had the choice I’d have opted for surgery over living with a ticking time bomb inside of me. The fact I was obese didn’t worry me either when it came to the surgery as I knew if the cancer didn’t kill me obesity would eventually. Five years later I I’m cancer free, 30kgs lighter and loving life. My surgery was the only treatment I needed apart from follow up appts gor 5 years.

What would my advice to you be? That would be to have the surgery now and going forward be brutally honest with yourself about how much you actually eat and drink in a day. Work out your TDEE then try to be in a 500 calories per day deficit. Honestly, there was nothing like a cancer diagnosis to scare the living daylights out of me and make me realise I was killing myself with food as well.

All the best going forward Tarkan.

Hand hold here, OP. I know exactly what you are going through. It’s a scary time, but try and take comfort in the fact that low grade endometrial cancer is easy to treat and has a good 5 year survival rate.

My biopsy showed pre-cancerous cells, which were upgraded to stage 1a endometrial cancer after my hysterectomy. I too was offered regular monitoring or a hysterectomy. TBH, I couldn’t face going through the worry and the procedures every few months and as I wasn’t planning on having anymore children, surgery seemed the logical option. I also had my ovaries out.

I was a couple of stone overweight and like you, had tried many diets over the years - nothing had worked. But, as soon as I had a surgery date, I really buckled down and tried to lose some weight. I think havIng a short term goal helped focus me and I could 100% commit myself to a short sharp 6 week plan. I gave up wine & snacks ( my absolute reason for piling on the weight) and started to replace 1-2 meals a day with Lidl protein shakes. Tbh, they were vile, but I kept going because I had an end date ( the surgery). In the end I lost a stone and my pre-op readings were ok.
This is a long winded way of saying ‘you can do it’! Prioritise your health now. Even a small weight loss will be beneficial. Once the surgery is over, don’t go back to bad old ways. Look at it as a fresh start.

4 years on, I’m lighter and healthier than I’ve been for years. You can do it!! xx

Thanks to everyone for all the comments so far. The MRI is tomorrow and the health anxiety has kicked in again.

It doesn’t help that DH has done his back in at work so he’s in a grumpy mood from being in so much pain now too.

I did mention before a bit about my friends. I think I forgot to add that they’ve been much more supportive since I actually got my diagnosis but they’re still so busy with their lives I’m feeling quite alone still. The one friend I speak to the most lives too far away to meet up with or we would be doing that. I do have another local friend I’ve been chatting to a bit who is going through something similar so I’m going to reach out to her and see if we can arrange a coffee together or something as I think we both need someone who understands how it all feels. I’m just so overwhelmed by everything I’m shutting myself away a lot though and I’m finding it hard to reach out to anyone.

I'm so sorry to hear that you're feeling alone with it all. I know it's not the same as meeting up in person but have a virtual hug from me - there are plenty like me who have been where you are and come out the other side. Take care of yourself and keep us updated with your progress.