Had a hysterectomy and waiting on appointment for follow up.

Hi BotanyGirl

Welcome to the Womb group.

I am sorry to hear of your diagnosis of serous endometrial cancer. I hope that you are recovering ok from the surgery and are not too uncomfortable. 

I did not have serous but I had another type 2, grade 3 endometrial cancer. Mine was at stage 1b. If you click on my name, my profile will come up, but I was followed up with chemotherapy and external beam radiotherapy. 

With a grade 3 cancer there is normally some sort of follow up and the appointment will be to go through what they recommend for you. Sometimes this can be chemo, sometimes radiotherapy. Because a grade 3 cancer can behave more aggressively and can have a higher chance of recurring, they tend to do more follow up treatment at an earlier stage. My consultant said to me that it was better to mop up any stray cells while they are so tiny that they can't be seen on a scan rather than risk them becoming bigger and potentially set up elsewhere, where it could be trickier to deal with them.

My treatment was completed 2 years ago and other than a few lingering effects, I remain well.

If there is anything you want to ask about the treatments, please do so. I actually took a list of questions in to my appointment and that may help when you are going to see the consultant. There can sometimes be a lot to take in so I found it helped focus on what I particularly wanted to know.

If talking things through would help, then please do give the Support Line a call.

Jane

Thank you Jane. I looked up your bio. What a journey you have been through. Im glad to hear you now lead your own recovery. 
Your advice is very helpful. 

I don’t know yet until after my appointment on Friday what they will recommend me for follow up. I do have many questions to ask them. I am trying not to think too hard about it until i know more because it causes me anxiety. 
I am daunted by the prospect of chemo treatment, side effects etc. 

My partner is a CEO with a full on job so its going to be tricky and i support an elderly mother who lives locally so lots to consider. Putting my needs first atm!  

Hi BotanyGirl, 

I was diagnosed with Serous Endometrial Cancer in March 2022. Post op, I was told it was Stage 3c. I had over 40 lymph nodes removed, some in the pelvic area but also some further up. The pelvic lymph nodes were all clear but 4 out of 5 lymph nodes further up had cancer cells, hence the higher staging. About 8 weeks after surgery I had six sessions of chemotherapy and then after a six week break I had four sessions of brachytherapy, which is internal radiotherapy. Chemo isn’t pleasant but it is doable and I constantly tried to see it as a positive treatment. I did not need any external radiotherapy. Treatment finished in December 2022. Since then I have had numerous check ups and a yearly CT scan and remain well. I still have a little numbness in the tips of my fingers and toes, from the chemotherapy plus a little leg pain but it’s a small price to pay and I can live with it. I hope my experience gives you some reassurance and wish you all the very best as you go forward. 

Hi ️

Diagnosed in April after a 5 year post menopausal bleed .. After MRI I was stage 1 .contained in uterus low down. 

Waited 12 weeks for my total hysterectomy. Cervix, womb , fallopian tubes,  ovaries , surrounding tissue removed! Recovered well from hysterectomy!! 

Waited three weeks for post hysterectomy biopsy results where my staging was up graded  to stage 3 grade 2 type 1 ..

Had CT scan , it  took awhile for results to come back so oncologist decided not to wait and I was scheduled to start Radiotherapy..

23 external 

2 Bracky therapy ..

CT Results came back around 4 weeks later . NO SPREAD !!! 

Due to stage three Chemotherapy was advised 

4 cycles ..1 day in hospital 21 days off ..

Combination of Paclitaxel and carboplatin (PC, CarboTaxol)

Tolerating drug combination very well .

Total hair loss by day 14 of 1st cycle have Winnie 1 and Winnie 2 my wigs ..

First 10 days after treatment for me are the worse ..

5 days of self injection start 4 days after treatment . 

Sickness , muscle joint pain .abdominal / groin cramping .. bowel issues . 

Heated blanket  etc  and Cocodamol helps with pain .

Suffer awful anxiety about being around people in regard to getting an infection other than family so don't go out apart from hospital GP appointments.. 

Had some neuropathy after 2nd cycle so oncologist has advise the Paclitaxel will  come down by 20 percent ! For cycle 3 

8th January will be cycle three !! 

Last treatment cycle 4 will be end of January..I will be Ringing that Milestone Bell !!  

Found out I will have No CT scan when treatment finished not sure if this is the norm for others but I can request one if I feel the need ! 

I wish you well on your journey ️️

Hello and thank you for your reply. 
Thank you for sharing your experience. That really helps. Your attitude to and experience of chemo is useful to hear. 
its so good to know you remain well. 

Hi  thank you for sharing that

you had a long wait for your hysterectomy. 

interested to hear that you self inject. 
The side effects sound horrible. How did you keep your spirits up especially if you were not going out much.

You must be massively pleased to be nearing the finishing post with the chemo. A CT would be reassuring. 

Wishing you well too as you finish up treatment xx 

Yes I feel I waited far to long for my hysterectomy it added to the stress ..

For 5 days four days after my chemo treatment I have to take a Filgrastim injection it is  used to treat neutropenia (low white blood cells) helps boost white blood cells .I inject into my abdomen same time every day . Its painless 

Side affects are horrible but are definitely doable .  Just listen to your body .. 

In regard to keeping spirits up I have a amazing family who help keep me grounded .

️