I got a surprise diagnosis for Valentine's Day

Hi Lupiilu

Did you have a hysteroscopy? Have you got a date for surgery? 

I had an abdominal total hysterectomy on 29th July last year after a string of tests (ultrasound, hysteroscopy, MRI & CT). I was also told it was the best cancer for a woman to get! 

I had an elongated recovery as I got an infection in my wound and it took 12 weeks to heal, very frustrating, I had a second stay in hospital for IV antibiotics and then over 10 weeks of daily dressing changes. Having diabetes didn't help with the wound healing process.

I have since had 25 radiotherapy and 2 brachytherapy treatments, and 2 rounds of chemo. Hopefully I'm heading in the direction of coming out the other side.

Best of luck for your op and treatment.

H 

HI, sorry about your situation. I hope you get the answers you need soon. I have stage 1 EC and am having hormone treatment at the moment, via Mirena coil but a lot of ladies on here have a hysterectomy. Good wishes!

The hysteroscopy was a potential if the polyp didn't show a clear result. The gyno said that if the MDT want more info after the ultrasound and CT, that the hysteroscopy and a MRI might be needed. I'll know when I see my gyno next.

I'm so sorry about the infection. I'm so glad you're close to moving in the right direction. I wish you a speedy recovery.

Hello Lapiilu

Welcome to the Womb group. I am sorry to hear of your diagnosis.

I can understand you wanting to have the full diagnosis and to know what treatment is needed and your prognosis.

What normally happens is that before surgery they will give you a provisional stage and grade. The CT scan will help them stage the cancer and it is about finding out exactly where it is in the body. So a stage 1 is contained, a stage 2 involves the cervix, stage 3 has managed to get out of the womb but is still contained within the pelvis. Stage 4 is when the cancer is further afield. The grade is also important. So grade 1 (low) is where the cells are similar to normal cells and only slightly changed. This type tends not to spread and grows slowly. Grade 3 is a more aggressive type of cancer where the growth may be quicker and may spread quicker in some ladies. A stage 2 is between the two. 

Everything that is removed in the surgery is then sent to pathology for testing. From these the final results are confirmed. These are the results that will indicate whether any further treatment is needed and if so the most effective type. The final pathology also contains some other genetic information and markers that build up the whole picture. My post op results came back at around 3 1/2 weeks after my hysterectomy- but there can be variation between hospitals. 

The actual hysterectomy was straightforward. I had it done via key hole and they try to do this where medically possible. I was in hospital for one night. I had little pain and recovered quickly from the op. I was worried when I was first told I needed surgery but to be honest by the time it came round I was just eager for the cancer to be removed. My surgery was 4 weeks after my initial symptom. 

If there is anything you want to ask about please do so. I remember what a worrying time it was. If you click on my name my profile will come up to give you my story. 

I had surgery in April 2022. My chemo finished in August 2022. My radiotherapy finished in September 2022. I have just finished 2 years of check ups and remain well. 

Jane

Hi lupiilu

Welcome to the group ! 

I was first diagnosed back in April 2024 .5 yrs post menopause I had a bleed .. in hindsight I had a few symptoms that I thought were just menopause induced  .. boy was I wrong ..

Had a hysteroscopy and vaginal ultrasound end of March , one week later on 8th April I recieved the news while out shopping on my own .. Consultant on the phone his words we have found something nasty  .

This came as a big shock as he had told me after the hysteroscopy every looked good no issues ! 

Two weeks later after an MRI  I had contact with my then CNS . Who told me I was stage one .. happy days ..

Had to wait 12 weeks for my hysterectomy. Far to long in my opinion but finally on July 30th 2024 I went in and had a total hysterectomy. Womb , ovaries,  fallopian tubes,  cervix and surrounding tissue removed..

Went down late at around 5 pm so had to stay over night but I was back home by lunch time the next day! 

Recoverd well from my op ..took my tome and listened to my body .

Three weeks after op called in for after op review where I was told I was now Stage 3 grade 2 type 1 big shock noone told me I could be upgraded..

Treatment plan put in place ..

Ct scan given ..had to wait 4 weeks for results showed no spread 

Ct planning scan given 

So 8 weeks post op 8n middle of Sept 24  I began my 25 cycles of radiotherapy. 23 external,  2 Bracktherapy. 

I found radiotherapy not to bad  10 mins max .. some symptoms..bowel bladder discomfort..

Three weeks after radiotherapy ended I began my Chemotherapy regime..

4 cycles of paclitaxel and carboplatin..

1 day in unit 21 days apart ..

Chemotherapy day unit were amazing I felt fully supported..

More side affects from aches pains in joints  muscles and abdomen..nausea and sickness 

Neuropathy in feet and hands .

And Hairloss.. cold capping wasn't for me ..I have my wigs Winnie 1 and Winnie 2 lol 

I rang the bell 3 weeks ago today !!

I know its a shock and you feel the worse .but be positive take one day at a time and you will get through this .one tip stay off Google. 

Use this group it been a godsend. 

Best wishes to you of you want to ask anything please do ..

Hi Jane, that is so helpful, thank you. I read about the Figo staging which apparently has been update recently, I've popped it below. But I had no idea about grades. Thanks so much.

Also, it's really helpful seeing your journey. I'm so glad it's two years post for you.

FIGO STAGES

The information came from the International Library of Obstetrics and Gynecology.

Stage I

IA1: non-aggressive histological type of endometrial carcinoma limited to a polyp or confined to the endometrium

IA2: non-aggressive histological types of endometrium involving less than 50% of the myometrium with no or focal lymphovascular space invasion (LVSI) as defined by WHO criteria

IA3: low-grade endometrioid carcinomas limited to the uterus with simultaneous low-grade endometrioid ovarian involvement

IB: non-aggressive histological types involving 50% or more of the myometrium with no LVSI or focal LVSI

IC: aggressive histological types, i.e. serous, high-grade endometrioid, clear cell, carcinosarcomas, undifferentiated, mixed, and other unusual types *without any myometrial invasion.

Stage II

IIA: non-aggressive histological types that infiltrate the cervical stroma

IIB: non-aggressive histological types that have substantial LVSI

IIC: aggressive histological types *with any myometrial invasion.

Stage III

IIIA: differentiating between adnexal versus uterine serosa infiltration

IIIB: infiltration of vagina/parametria and pelvic peritoneal metastasis

IIIC: refinements for lymph node metastasis to pelvic and para-aortic lymph nodes, including micrometastasis and macrometastasis.

Stage IV

IVA: locally advanced disease infiltrating the bladder or rectal mucosa

IVB: extrapelvic peritoneal metastasis

IVC: distant metastasis.

The performance of complete molecular classification (POLEmut, MMRd, NSMP, p53abn) is encouraged in all endometrial cancers. If the molecular subtype is known, this is recorded in the FIGO stage by the addition of “m” for molecular classification, and a subscript indicating the specific molecular subtype. When molecular classification reveals p53abn or POLEmut status in Stages I and II, this results in upstaging or downstaging of the disease (IICmp53abn or IAmPOLEmut).

Hi, thanks for sharing.

Stage 1 Womb Cancer | Cancer Research UK

The FIGO staging is updated every few years. It was last done in 2023 however most UK doctors generally use the 2021 version. The cancer research information was reviewed last year. I have popped the link above.