After care.

Hi Babou 

Hello June, I'm sorry to read of your cancer diagnosis and treatment. I had endometrial cancer and treatment last year and am currently stable. My cancer is incurable but treatable. My profile is there if you would like to read it. It's a good idea to write a profile yourself as it helps others in their replies to you and saves you repeating yourself. Just click on your username, then profile and save.

I know you are worried and I recently had an earlier CT myself as I was having pain. My CT results were fine and the consultant said that it could be scarring on the bowel from radio or adhesions from the surgery. It's a viscous circle, I found, the more worried I became, the more pain I got. The pain was low level aching.

If you've read my profile you will note that I had pain while waiting for treatment. This was more severe and gradually got worse. It was very difficult to walk, even making the bed exhausted me. I was taking oromorph and then tablet form, zomorph. I recently found out that my pelvis had fractured because of the cancer and I can pinpoint when this was, the pain was horrific. I am not telling you these things to worry you, I am trying to differentiate from the types of pain I had so that you can calculate the severity of the pain you are experiencing. 

I sincerely hope that your pain is lower level and I hope your scan date comes through soon. If you feel you need to speak to someone the Macmillan helpline is open, this is the link to contact https://www.macmillan.org.uk/about-us/contact-us  They are really helpful and you can speak to a nurse if you need to. Best wishes for your results.

A x

My doctor's diagnosis for my womb cancer is Stsge 1B, grade 1. I had my whole womb (uterus, tubes, ovaries, cervix removed).

They did a biopsy of my uterus and says it is endometrioid endometrial cancer with MELF pattern of invasion and substantial LVSI. no particular molecular profile.  Since it is 1B, they advised me to go for radiotherapy for pelvic and vaginal to prevent the cancer from growing. 

I have researched and found that pelvic radiotherapy can have side effects and even damaged those good organs.   I have checked from my home country that for grade 1 and stage 1b, they do not advise to go for further treatments after womb is removed.

Anyone here who has similar 1B stage can shade with me your decision?

Anyone here can share with me the experience of pelvic radiotherapy and vaginas radiotherapy?  Is there bad side effects?

Many thanks!

Hi

I was IB and had LVSI. I had chemotherapy and external radiotherapy. 

I would imagine that the adjuvant radiotherapy that is being advised is more to do with the MELF and also the substantial LVSI. Even though the stage is still considered low- there is evidence of substantial lymphatic and vascular invasion- this means that although the cancer has not yet spread- they have found tiny cancer cells (too small to be seen on a scan) in the tiny vessels leading away from the main cancer. In time, in some people any tiny cells remaining could in time travel through the lymphatic/vascular systems and in time set up elsewhere. 

Normally it would just be a very low grade and low stage (1a) without any LVSI etc that may just be treated surgically. When they decide on follow up treatment it is not just the stage and grade they look at. 

The purpose as it was explained to me was that the pelvic radiotherapy would hopefully deal with any tiny cells remaining in the pelvis. The chemotherapy would deal with any remaining tiny cells whole body wise. 

Where adjuvant treatment is offered it is to try to reduce the risk of any recurrence. LVSI is a factor that suggests the need for further treatment. 

Only you can make the decision whether you want to go for further treatment but please make sure it is an informed decision. I remember being told that it was better to try to prevent a recurrence than to try to deal with one that has happened. With the MELF pattern and the substantial LVSI there is the risk that cancer cells could remain. If they scan you they will not be able to see them at this stage. 

I had chemo and then radiotherapy. Both treatments have side effects. Some people are more affected than others. I do not regret the treatments. So far I am 3 years post treatment without any recurrence. 

Do give the Support Line a call and talk things through with one of the nurses if it would help. 

Jane

I had decided not go for the pelvic radiotherapy when I met with the doctor until I received the diagnosis letter today which says there are substantial LVSI.  I researched and it means they found cancer cells in the blood vessels.

I think it will be better to go for the radiotherapy.   Can u share what side effects u have encountered, how long they last or if they are permanent?

• Thank you so much for the sharing.

Hi YGC, I had 25 x radiotherapy in 2022 for grade 1 stage 2. I also had 2 x brachytherapy. I was careful what I ate during treatment. I had no side effects at all till the middle of the 4th week and even then it was just mild bloating and a little urgency which was relieved by over the counter meds. I drove myself to and from every appointment (an hour each way). After my treatment finished I gradually returned to my pre treatment diet and was back to my normal eating within about a month. No lasting side effects and am grateful on a daily basis for the treatment for my peace of mind.  

Dear MarmiteFan

Can share with me what to eat (hopefully not Marmite ) and what to prevent?

Thank you so much for sharing your experience as it definitely helps to ease me quite a bit.