Restaged to Stage 2 (but still Grade 1) so Adjuvant Radiotherapy

Hi MarmiteFan59

Like you I felt shocked, even horrified, when told that i would need the two types of radio treatment ( in my case because there was LVSI) particularly as naïvely I hadn't known that it would take weeks.  I had been feeling quite well and a bit smug about how well  I had recovered - even the consultant said how fit I looked.!  But the shock did die down and once things were underway the time went surprisingly quickly.   Yes, I found all the travelling backwards and forwards somewhat tiring but I paced myself and still managed to get out and do nice things. Afterwards it took a bit of a while to get back to "normal".   Six years on I have remained cancer free so I feel it was worth it.  I wish you good luck in the next month or so and hope that your diary will be full of optimism! 

Thank you Anne, before my results I was trying to prepare for the worst but hope for the best - but it still knocked the stuffing out of me to be told. When I was told 5-6 weeks of treatment for the external radiotherapy , and I said “is that once a week?” and she replied “no every day Monday-Friday” I was stunned. I have to make the best of this but I’m just at the moment trying to let it all settle.

Hi MarmiteFan59. I understand how your result has come as a shock to you and you need time to process this but you have done so well so far with your recovery from your op that I am sure the same ‘I can do this’ attitude will help you get through your radiotherapy.  

Thank you Walkinglady. I am not feeling like myself at the moment but am trying to just let things settle and to give myself some space. I’m still reluctant to tell many people “real time” that I have cancer as I don’t want to be looked upon or treated as a victim, but am glad to have the forum here for some company.

Hi MarmiteFan59 like Anne I was told I had LVSI and would need both types of radiotherapy.  I had never heard of LVSI, and as my tumour was contained I assumed and hoped that would be that after surgery.  Unfortunately I didn't find this forum until my radiotherapy was about to start so didn't have as much information and knowledge as I have now.  I had the added problems of being agoraphobic and I suffer from M.E. and Fibromyalgia, and my hospital trip each day was a 4 - 5 hour round trip by car as I can't use public transport.  I did find it tiring as I already had these conditions to contend with, and I did get side effects from Day 3 but I was unlucky, many don't get them until much later if at all.  I do have some long term side effects/damage which I have to live with, and I will be 5 years since completion of treatment in October. 

Remember to drink plenty of water and get plenty of rest as you will feel tired and it can continue after the treatment has finished for a while, and if you do get side effects such as bowel problems, nausea etc. they will give you medication to help with it all.  

Hugs, Lesley xx

Hi MarmiteFan59 Oh what a blow to hear you've not got you've got to have more treatment and the disruption it causes. My hubby had 3 weeks of radiotherapy which involved a daily round trip of 3 hours for 3 weeks. Every time I dropped him off I was just about to get through the doors of Dunelm Mill he'd call and say he was ready to be picked up. GRRR. It was all over very quickly but in his case he's been cancer clear for years.

I'm sure you feel a bit flat at the moment but you'll get there. Onwards and Upwards

Big hugs, Barb xx

Hi MarmiteFan59

I get how you are feeling. I was initially Stage 1a (Grade 1) endometriod adenocarcinoma, and was told after the op 80% chance of no further treatment. I was on cloud 9 until at the follow up it was upgraded to stage 1B because it had grown more than halfway through the muscle wall and there was LVTI. At least there were cancer cells in the blood vessels but they didn't know about the lymph system because they didn't take a sample for analysis. I had a CT scan just prior to radiotherapy that showed nothing of concern and the lymph nodes were normal size and shape. (Most people have this scan pre-op but my op was really fast after diagnosis so not done).

I'm just over half way through my 25 fractions of radiotherapy - 13 down, 12 to go. At the beginning, on day 3 (a Friday), I was extremely tired and nauseous and really needed the weekend break to recover. At the moment I can honestly say I've never felt better (all my fingers and toes are crossed). I suffer from claustrophobia, so the scans - two CT scans two days apart - the one I described above followed by the radiotherapy planning scan - were tortuous. I very nearly didn't go for the second one, but, as with a conveyor belt, you don't get off until it spits you out at the other end. LOL. I found radiotherapy less so because the machine is not totally enclosed, but nevertheless I was very anxious and stressed, and I put it down to that. 

Another cause of my stress was the administration of an enema 60 minutes before the treatment to ensure your rectum is as empty as possible to minimise side effects. Most people take this is their stride, but I've never liked handling myself "down there" - it took me years to use tampons! Actually it's only a micro enema, only 5ml, and doesn't need to go in far, and once I'd done the one before the planning scan I was wondering what all the fuss I made was about! It's funny what stresses out the individual.

Don't be afraid to ask for appointments to be when they suit you. The can't promise, but they can request it. They've been brilliant with me - mine are mid-morning, so I leave at 8.15am - you have to be there an hour before the appointment to do the enema, then you drink 500ml of water 30 minutes before so the bladder is full and holds the small bowel up out of the way to reduce the risks of side effects, and is high so the beams can treat the area underneath it. It's all very clever. I get home about 11.45.

So I'm still working - giving singing lessons on Zoom and running two choirs in person. People look at me gone out when I say I'm having radiotherapy - but you look so well! I AM well - I don't have cancer - this is just adjuvant, as yours is, so you have every reason to be positive and thankful that once the treatments are over you can get on with your life. Really, it goes so fast.

As I type I can honestly say that I don't have any side effects at the moment. I realise that may change, and quite soon, but my review radiographer (you get a review once a week) says not everybody gets them. I wish I had been told that beforehand, as, like you, I was dreading it. I'm staying positive about that.

Top tip - drink plenty of water before you go. I start the day with two glasses of water and milk on my cereal. So when I have the 500ml before treatment it goes straight to the bladder so it can do its job properly. Take a good book,magazine with you, play games on your phone, whatever. It's taken me a while, but I'm an old hat at it now. Goodness knows how I will fill my mornings when it's all over LOL!

It's great you are up and about, and so active. Keep the Norah Battey stockings - they make great flight socks! 

I'm so sorry you were re-staged and I think this is something we have learned from this group.  I too am worried  as my cancer is already grade 3. The only hope I have is that its really early stage at 1a being it has not moved into the myometrium. I am also hoping they find no involvement in lymph nodes. 

Your attitude thus far has been so positive and you must continue in this mode.  Its the only way and you CAN beat this. Its sometimes a step forward and 2 steps back but you will have determined that you must keep forward in this . Wishing you the best in your treatment. 

Maddy x

Hi MarmiteFan59,

I'm in the same situation like you. I was told after the hysterectomy that there was slight cervix involvement so it was restaged to stage 2.  I have just completed 23 sessions of external therapy n there are going to be 2 rounds of internal next week. I did not have many serious side effects during the internal therapy, just a bit tired and some crampy feelings in the bowels. I found drinking three cups of water before the sessions most uncomfortable because the water in the clinic was very cold. So after the first 3 days, I started having stomachache. Then I brought a flask of hot water with me to the sessions. The staff in the radiology department are all very friendly and caring. I felt relaxed from the first meeting with the team until the end. 

My concern is that I have only had one CT scan throughout the entire cancer journey and that one scan was for the radiotherapy planning, not for checking if the cancer had spread. So now although I am approaching the end of my treatment, I am worried if the cancer might have travelled. The oncologist does not think I need any scans. Just not sure what to do next.

Best wishes to you all, 

Chui 

My cancer is leiomyosarcoma which was in a fibroid. It was removed intact but I have LVSI. Sarcoma is incurable and it's very rare and very aggressive. Chemo and radiotherapy aren't successful against it. I have three monthly scans and consultations with the sarcoma consultant. The plan being that if you're scanned or x-rayed and everything is ok then scanned three months later and something has developed it should be small enough to surgically remove. Unfortunately since October I've been to the sarcoma hospital every 3 weeks or so as something has been seen then I have an MRI which luckily has shown that everything is fine. I also have non alcoholic cirrhosis of the liver which causes very low platelets and white cell count which scares my GP who thinks I've got myeloma (I've been told that I have myeloma by three different GP,'s) I also have fibromyalgia and ME. I can't drive due to dizziness which is frustrating. Wow, I'm a real moaning Minnie aren't I?