chemo

Hi Tribey

Welcome to the Womb group.

I am sorry to hear of your endometrial cancer. 

Mine was in 2022. I had surgery, chemotherapy and then 25 sessions of external beam radiotherapy. 

I was also stage 1. 

When they look at your post op results there are several different things that they look at before deciding if follow up treatment is needed. Stage 1 is still at an early stage which is good. 

When you say p53- is this wild type or one of the mutated versions? There can be differences. 

Another important factor is the grade of the cancer. A higher grade cancer has a higher chance of recurrence where a lower grade on is less likely to recur. 

The presence of any lymphatic or vascular invasion (LVSI) is also an important consideration. 

There can also be other genetic information that is important. 

I went ahead with both treatments although at the time I was not keen. I felt well after the surgery and had had enough of hospitals and appointments. The thought of further treatment did not appeal. However I went ahead as I wanted to do everything possible to reduce the risks of recurrence. I remember being told that they don't suggest chemo or radiotherapy unless really necessary and that it is far better to mop up any potential stray cells after surgery (where they are at a tiny stage and cannot be seen on scans) to prevent a recurrence rather than to try to treat a cancer that has recurred. 

It is a personal decision whether or not to accept any treatment but I would urge you to make sure you have all the facts so that you are making  an informed decision. Both treatments can have side effects but I found on the whole they were manageable with medication. 

If it would help to talk further please give the Support Line a call. They are there from 8am-8pm everyday.

Jane

Thank you I am so scared of the side effects and reading that a secondary cancer can return and stem cells are still left behind.  So much to think about!  What meds do you need to take?

I understand- the side effects that they mention can feel overwhelming. For radiotherapy the meds I had were loperamide (diarrhoea) ondansetron (nausea) buscopan (for cramping) and codeine phosphate (diarrhoea) - however some people do not need meds and if they do then it is occasional loperamide. 

The meds for chemo can vary according to whether you have any side effects and also which ones may happen. 

The 2 chemo drugs were carboplatin and paclitaxel. They were done via IV.

On chemo days I also had anti nausea meds (ondansetron and domperidone) prednisolone (a steroid) and Piriton (the common anti allergy medication)

For the first few days at home it was steroids and anti nausea drugs mainly. As chemo rounds continued I also had some eye drops and mouth wash. I had some naproxen for pain (rarely used it) For the last 2 cycles I also had magnesium sachets to mix with water. 

They have to warn you about a possible secondary cancer in the treated area for radiotherapy but I was told it was extremely rare and the benefit of adjuvant radiotherapy far outweighed the chances of developing a second cancer many years later. So the chances of the original cancer recurring was higher than the chances of a secondary cancer happening was how it was said. 

All cancer has the potential to return at some point but for me it was explained that it was about doing everything possible to lower the risks. I was told that no one could guarantee that by having chemo and radiotherapy that the cancer could not at some point return but by doing it I was increasing the odds that it was far less likely. I never asked about percentages etc as they can be so individual. 

After surgery in theory it is possible that a few tiny cancer cells could remain. This is particularly for the more aggressive sub types or where there are certain molecular/genetic factors. If we had a scan after surgery it would not be able to show up any tiny cancer cells that could remain. There may be none but if there were any left- in time- in some people it could possibly lead to a recurrence. 

Chemo is a whole body treatment and if there are any tiny cells remaining anywhere in the body then the plan is that the chemo will deal with them before they potentially become bigger and cause issues. 

For my radiotherapy the vaginal vault was targeted as this is a more common area for the cancer to return. I also had my pelvic lymph nodes targeted. So the radiotherapy was an extra boost for my pelvis. Together the chemo and radiotherapy meant that effectively all areas were targeted. 

I had an aggressive type of cancer which can recur more commonly. By having the treatments I did everything possible to lower the risks associated with recurrence. I am now 4 years post treatment. 

My feeling at the time was to have the first cycle of chemo and see how I felt. It helped to think of one treatment cycle at a time as when it is all ahead of you it can feel overwhelming. 

If you click on my name, my profile will come up and it will give you an idea of timings but for me surgery was in April and all the treatment ended at the end of September. 

Yes the treatment was hard and at times I felt like giving up but with support I got through it. If I had not had the treatments I may have been ok but I may have developed further cancer by now. No one can say for sure. I remember my CNS saying that it is so hard to predict who will recur and who will be ok. In the end I put my trust in them and did the treatment. I felt that with my post op results being discussed at the MDT and them all agreeing on the next clinical steps- It was what I needed to do.

It is of course always your choice but if they have recommended it, then my feeling would be that you need it. Perhaps think about writing a list of questions/worries you have about the treatments and taking it to your appointment. I did and it helped. 

Jane