Feeling anxious about the wait

Hello KT89

I can understand your worries.

I too had LVSI and it was explained to me that it meant some tiny cancer cells were found in the vessels leading from the tumour. I was told that in time, in some people that these could go via the blood/lymphatic system and travel to other parts of the body. If this happened there was a possibility that cancer could then set up somewhere else- if it was not dealt with via lymph nodes etc. It does not mean that this will happen, more that in time it can happen to some people. So it was explained that the cancer had not spread but it was trying to. 

I was told that pelvic radiotherapy would be to mop up any stray cells in the pelvic area that may have remained, although they would be too small to be seen on a scan. I had chemo to mop up any cells that may have travelled outside the pelvis. It was explained to me that once cancer cells enter the blood/lymphatic systems then potentially they could go anywhere in the body. So the radiotherapy was to try and prevent any local recurrence and the chemo was to prevent any recurrence elsewhere. 

Some people are offered brachytherapy- which is internal radiotherapy but I was told I did not need this as cells were not found in my cervix, 

There are a lot of different factors that they use in deciding on which adjuvant treatment is best and their decision depends on your pathology, stages, grade, genetic markers, and also the amount of LVSI that was found. There also seems to be variation between hospitals and areas. 

I would suggest giving your CNS a call, expressing your concerns and asking when the radiotherapy consultation is likely to happen. Once you have the planning appointment it seems to be a couple of weeks later that they start. This is due to them planning your radiotherapy- they have to look at your scans, plan doses etc. 

I hope that you do not have to wait too much longer. For me I started chemo around 6 weeks after surgery. I had my radiotherapy planning appointment the week before my last chemo. I then had radiotherapy 3 weeks later (so after the last cycle of chemo had finished)

Jane

Hello jane2511 

Thank you for your informative reply. I appreciate it very much, especially as the anxiety about this is hard to deal with. I am not anxious but nature so it is another adjustment to make.

I have left a message for my CNS just now. 

Thank you Jane.

*anxious by nature

I really should proof read my posts better!

In my own experience- the cancer can come when you are not expecting it and it is like a rug being pulled out from under your feet. It is very normal to feel anxious when everything feels out of your control. 

I hope that your CNS can chase it up for you and get the planning appointment done. Once that is done I am sure it will be started within a couple of weeks. It is natural to want the treatment to be done as soon as it can- I was the same but held on to the fact that the cancer had been removed by the surgery and the adjuvant treatments were very much to mop anything up that may have been left behind. If anything had been left behind it did not necessarily mean further cancer would pop up elsewhere, just in time, in some people there was a chance and it was better to give them a blast of radiotherapy while they were still tiny and had not yet set up somewhere else in the body. Adjuvant treatment is about reducing the risks of possible recurrence. 

Good Luck

Hi KT89, I do feel for you as I think the waiting is the worst part of this - however, the NICE national guideline for start of radiotherapy is within 12 weeks, and that guideline has been calculated as that as it’s deemed safe within that time. I do understand you wanting it to start as soon as possible and hopefully your CNS will be able to chase your planning CT which should help you feel more like things are moving along.

Hello MarmiteFan59 

I didn't know about the 12 week guideline. Feel more reassured.

Thank you.

Thank you jane2511  for your reassuring post. It all still feels so new and I'm learning all the time.

Thank you 

I finished my radiotherapy in September 2022. I felt really worried before it. I did have some side effects and some linger but on the whole they were managed by diet and medication. I was well looked after and I am sure you will be too. Looking back, a lot of the time, the waiting for things was one of the toughest times during it all- waiting for diagnosis, scan results, surgery dates, chemo appointments and the radiotherapy. Once they all got underway and I knew what was going to happen and when- it did feel a bit more under control and the anxiety lessened.