Fear

Hi Donna McC, very well done for having had your hysterectomy. I was predicted grade 1 stage 1a, but post op histology changed that to stage 2. I suspect that it’s your stage that may be 1a rather than the grade, as the grade is usually in numbers without letters. So you may want to check and ask the grade, if you’re the sort of person that likes to know things. 

Yes I had 25 x pelvic radio and 2 x brachy. I remember feeling a bit apprehensive at the start and also felt a bit overwhelmed at the sight of the LINAC machine. It looked so Star Trek! But the staff were great, and it reassured me that they knew their jobs so well that it was routine to them even though it was unknown and a bit scary to me. What I will say to you is try not to run ahead and don’t Google! I was prepared for possible side effects (and it’s important to see them as possible not givens) but had no side effects till the middle of week 4 and even then they were mild - just some bloating and slight urgency, but no runs. I drove myself to and from every appointment (an hour each way) all the way through. I was careful what I ate, and slowly reintroduced certain foods and drinks after treatment and was back to normal eating wise within a few weeks. Feel free to ask anything you like. 

I just saw your response and thank you.  Do you have any long term effects?  My doctor says most people don't get through radiation without having problems and it takes 6 months to feel somewhat normal. I am totally confused. I had concluded it may not benefit me, since she said there are no studies to prove it helps in my case because my cancer is very rare. How are you feeling now?

Chloe, I just saw this. How are you doing now?  Did you have surgery?  I hope you found a good doctor who was able to guide you through this process. It's a difficult, emotional journey for every woman.

Hi Donna McC, I’d say I felt pretty much back to normal almost straight away. As well as having grade 1 stage 2 cancer, I was also found to have extremely rare pre-cancerous “stics” in my fallopian tubes, which would have caused high stage ovarian cancer if they’d been undetected, so I was especially determined to have the radio and brachy to give myself the best chance possible. It was annoying having to go every day 5 days a week and have it dominate my life, but in the big scheme of things it wasn’t that long. 

Hello Donna

Have you decided what to do about having radiotherapy?

I had recurrence over two years ago (post hysterectomy for endometrial cancer) and decided against radiotherapy due to the advised side effects. Two years on and I'm no worse, I'm monitored six monthly alternate MRI or CT as the progression was to a lymph node.  

Radiotherapy and/or chemo isn't for everyone, follow your gut instincts is my advice. 

I have the same situation. I have 4 weeks to decide, but my doctor told me about side effects and there are no studies that address my exact situation.  I am leaning towards being monitored, like you are.

One thing worth being aware of is that radiotherapy can normally only be given once in a specific area. A lot depends on your stage and grade and some other genetic markers- but one thing I asked about was whether it was worth banking my radiotherapy to keep it on standby if I had a recurrence.

I was told it wasn't a good plan for my type. I was told better to mop up any cells now than wait for them to develop/get larger/spread to lymph nodes and further a field. Your results may put you in a different situation. 

I was also told that if I did recur chemo would be the likely treatment. It would depend on where it came back. 

Another thing I asked about was whether brachytherapy would be an alternative possibility- as less side effects and much fewer treatment. I was told in my case it wasn't an option and no cancer cells were in my cervix. 

It would be worth asking specifics about the chances of recurrence at your particular stage and grade- with and without radiotherapy. And if it did recur in your case and you did have radiotherapy (or other treatment) would it be with curative intent. 

It is a tough decision to make but you must do what is right for you.

I don't regret mine but I do still have effects. Not everyone does.

Just to say that doctors have to tell us about POSSIBLE side effects of treatment but in reality many of us who have radio have few side effects if at all. I had none at all for 3.5 weeks and then only a bit of bloating and slight urgency which stopped as soon as treatment stopped. My radio was preventative, and may not have been necessary, HOWEVER I’d say that the peace of mind that it’s brought me over the last 2+ years (radiotherapy finished June 2022) is immeasurable. I’ve seen women post on here who had no treatment and have had recurrence with lower stages than me. For me, I’m glad to have had help to prevent recurrence by having any stray cells mopped up. Although I was gutted at the time that it was recommended for me, I have never regretted having it.