How long is too long

This was similar to myself after fibroid removed 3018 and 2022 it grew back so I presumed it was ok when blood in urine October, I had Ct scan kidneys cyscopy also and all was ok noted buoy womb. They didn’t send for a scan until jan but end of dec I had a huge bleed so went to drs had hysteroscopy 23/1 and diagnosed with grade 3 endometriod :( after Ct scan and mri was told it is stage 1a and noooed for Robotic op next Thursday at Christie’s 

I know the stage will show after surgery but I’m holding into this stage 1a whilst stopping myself from panicking please remember they are still not fast at grade 3 I am sure you be fine xx you still I. Plenty of.time 

Hi Jax2u 

I had a similar situation. I had three episodes of bleeding (in a six month period approx). I thought - and the GP thought - they were bladder related. I was referred to urologist on the third bleeding episode. Fast tracked for CT and Cystoscopy in May 2023. Reassuringly everything was normal. Nothing noted on CT about my womb which still surprises me to this day.

I had another bleed in the Summer of 2023 and this felt more like a period. Fast tracked to Gynae this time and had CT, MRI, Ultrasounds, hysteroscopy and biopsy. Finally I my total hysterectomy in September 2023. 

So approx 10 months after my first heavy bleeding episode I finally discovered what it was that was causing it.

Hi KT. and how are you doing now?

Hi  

Recovered well from laparoscopic surgery. Had pelvic radiotherapy and finished that just over two weeks ago. Git some side effects but it is still early days.

I feel relieved that treatment is finished and very grateful for our NHS.

Thankful too for this forum - I have learned a lot and everyone is lovely.

Wishing you all the best 

Kxx

6-7 months typically isn’t a big deal in terms of cancer even though it may seem/feel like it to us. I appreciate that you’re concerned, and I do feel for you, but it’s done, it is as it is, and whatever happens you will find a way through it. Wonderings are normal, and it’s important to acknowledge them and how they make us feel, but dwelling on them doesn’t help us. We can’t stop the thoughts coming into our heads but we can choose not to let them take root.

I had symptoms for several years, but they kept putting it down to peri menopause until they finally did a blood test that showed my hormone levels were not showing any signs of perimenopause, so then the scans started. My transvaginal scan was June 12, 23 and hysteroscopy Sept 5, diagnosis given on the 18th and hysterectomy on Oct 16. I found the NHS to be really responsive once things started moving. But my stage 1b, grade 3 cancer had not spread beyond the uterus in all that time x

Hi B74 

I found your post interesting. Isn't it remarkable how "individual" our stories are?

I was stage 1b grade 1 with LVSI. I was surprised about LVSI because my grade was low. Not that I knew what LVSI was at the time ;) I naively assumed everything was contained.

It just goes to show that treatment is a combination of so many different factors - inc. Genetic tests. I was so hoping I would be POLE positive because it would mean no pelvic radiotherapy. Never mind it wasn't to be.

 Jax2u  the most anxiety I felt was the waiting for results so I can resonate with you to some degree. We are not in control of the results and how long they take. We have all been there but ultimately the medical team will guide you through.

Absolutely! Although I feel quite anxious that others seem to be offered CT scans to check after 3 months or so when it is a high grade and I haven't been offered anything. I'm sorry to hear about your radiotherapy side effects, I am very grateful I dodged that one x

Thank you - it sure is interesting times for me atm.

It seems different teams have different follow up protocols don't they.

I don't know what my follow ups will be yet. I have an appt in April so will find out then.

Perhaps you can ask for a regular scan? Is that possible to request more close follow up? I bet someone will know the answer 

Hi Jax2u

My journey to find out I had womb cancer is very similar to yours.  I was noticing a light blood on paper after I’d been for a pee, I was treat for a urine infection first, however the blood very light was still happening, so I went back to the doctors who referred me for a cystocopy at the hospital.  My bladder and kidneys were fine.  I then had a CT scan which showed that the lining of my womb was 14mm thick, I was then referred for a transvaginal ultra sound, and following that a hystocopy and after that I then found out I had womb cancer.  I first went to the doctors around May time, and I had a hysterectomy November 14 , I too felt it had taken quite awhile to get my diagnosis.

Try not to worry, the worst is when you don’t know and you are waiting for results.  I realise that saying don’t worry is easier said than done, and you do start imagining all kinds of things.

I will say the NHS is fantastic, the doctors and nurses are so good and you will be well looked after.  I am currently having chemotherapy and have my third session tomorrow.  The side effects are not as bad as I first thought, and you can put up with it as you know you are having it to make you better.  

I wish you the very best of luck and let us know how you get on.

Ange