Awaiting start

Hi you lovely people. Had the PET scan couple days ago and it went well no problems. The underlying stress caught up with me in the evening and I crashed feeling tired out and with headache but I know that was aftermath of my anxiety beforehand.  Strange as I even fell asleep the last 5 minutes of the scan!  They said results with doctor in 2 weeks and they seem to say that as standard - I know the oncologist asked for the PET scan and I'm seeing him on Tuesday so hope he gets info in time lol! So only a couple of days now and I'll find out all the detail I hope. Will let you know. 

C

My daughter has a congenital heart problem and within five minutes fell asleep during an MRI scan - the staff said they had never seen anyone is such a deep sleep - young mum with two small children, she said it was the best rest she had had for weeks!

Wishing you the best of results

Irene x

Hi Cranford ,

That’s great that your PET scan is over with & I think we can all relate to that build up of stress & the crash that follows it. It is pretty standard for scans to take a couple of weeks to be reported on as I think the radiographers do a report first then they go through to your treating team but that’s not saying that your oncologist won’t have something ready for your appointment. I’ll be thinking of you on Tuesday. 

Nicola 

Hi all. Had my appointment with consultant today at Bristol.  Good news from the PET scan that the cancer is confined to the immediate area it is and not spread.  He didn't really tell me anything I hadn't already read in this forum about the treatment and side effects. What he did say though which shocked me was that I would hate him by the end of the treatment!  I've felt quite tearful since the appointment and felt drained. I feel terrified. I will start the treatment in approx 3-4 wks with appointment before that to plan it all. 

He asked if I want to be a part of a cancer treatment trial ACT5 to trial increased doses of radiotherapy as they are trying to research whether increased doses will decrease recurrence of the cancer.  However increased dose means possible increased severity of side effects - but they don't know.  Part of me wants to run a mile from inflicting possible further and prolonged pain on me.  What are people's thoughts?

Carole

Hi Carole, it’s a difficult one, i personal had no side effects to speak of to be honest, I was expecting it to be much worse I had 1 little sore on the top of my bum, I had a little itching on the second week but took anti histamine which worked at treat that was it, if I knew that I would have the same no side effects to speak than I would definitely go for the trial, I’d probably go for the trial anyway as would not want it to re-occur, I was  advanced stage 4 AC, I couldn’t continue with chemo as it effected my heart so just had the radiotherapy, which I was worried that I was only having half the treatment but my oncologist said that this is the main treatment, by my second MRI I was in remission, tumour gone. Good luck with whatever you chose to do

Laura x x

Hi Carole,

From another Carole! 

Good news from your PET scan.  I too was offered the ACT5 trial when i started my treatment last July.  The side effects from the usual radiotherapy dose seemed scary enough to me.  With the trial you could be on the same amount, slightly more or an even higher dose.  The idea of being on the highest dose scared me so I decided against the trial.  I did struggle with side effects from the fourth week of treatment and for two months after so feel for myself I made the right choice.  I was Stage 2 T4 N0.  When I had my six week check with Oncologist the tumour had disappeared and no evidence at the 3 months scans (just waiting results of 6 month scan).  

They do leave it up to you to make the choice like the Oncologist said to me if I decide against the Trial I would still be getting the Gold standard treatment for this particular cancer.

Good luck and best wishes for your treatment,

Carole xx

Hi this is really helpful thanks. I had my PET scan last Wednesday & I too drifted off in last few minutes! But since I've been suffering intermittent nights of insomnia, didn't sleep last night until 6am & had to be up for work at 9am. This is third time it's happened over past two weeks & starting to wonder if it's just me or others experience it. I feel tired when go to bed but then just toss n turn, get up, go back down - just not like me, although I'm not the best sleeper this is on another level!  I think part of it is that I didn't know any time-scales to when I'd find out results, panicking I may have cancer somewhere else etc.. I still haven't met the oncologist yet. Hopefully it won't be too long! 

Just seen your updated post - that's great it's confined! I've read about the trial you refer to & I wouldn't know what to do either. If it feels too stressful even contemplating it perhaps I'd just make the decision to keep with standard approach. It's an added thing to make a decision about at an already pressured time. Hope all goes well with whichever treatment you choose X

Hi Em44 , this happened to me also following my diagnosis, I would have nights where I hardly closed my eyes, I would either read or put the tv on in the bedroom which would usually send me off to sleep in minutes but hours later I’d still be there. I think it’s just the inability to switch off our brains with the shock of receiving this diagnosis & as you say all sorts of thoughts run wild during the night don’t they? Hopefully once you have the results of your scan & you’ve met with your oncologist & discussed a treatment plan your sleep pattern will settle back down a bit. You’re not alone in this. 

Nicola

Hi again Carole (Cranford ), firstly that’s great news about your PET scan results, I think your oncologist has given you worse case scenario by saying you’ll hate him by the end of your treatment . There really is no way of telling how mild or how severe your side effects from treatment will be to be honest, in my time here I’ve heard the extremes of both & that’s been on the standard protocol. Some people have managed to carry on working throughout treatment, I wasn’t one of those, although I didn’t suffer badly from the effects of radiotherapy & had next to no reactions to the chemo side of things fatigue was by far the most prevalent one for me but nothing that a little snooze mid afternoon & an early night didn’t put right. 

Is it the PLATO trial your oncologist has offered you? I was part of this trial but because my tumour was removed via local resection prior to treatment the leg of the trial I was invited onto was 23 opposed to 28 treatments, slightly reduced strength & more direct radiotherapy as they were aiming at a small area where there was only a 1mm clearance opposed to the rest of the removal where there was a 4mm clear margin. Unfortunately it’s a difficult decision & one that only you can make, what I can say is that the side effects don’t happen all at once, they build gradually & generally don’t seem to start until around week 3 of treatment although I did have radiation cystitis towards the end of week 2 which seems quite common. Your treating team will have lots of lotions & potions to try & keep you as comfortable as possible throughout. 

The planning stage for your treatment shouldn’t take long, I had another MRI, I can’t quite remember if I had  a CT too, for the physicists to map the radiotherapy & had a couple of tattoos (literal dots on both hips & pubic bone) to enable the lining up of the radiotherapy machine to be as accurate as possible during treatment & that was it. 

If you feel you need to have another chat to your oncologist about the trial don’t be afraid to ask for an appointment be that face to face or a telephone appointment. 

Nicola 

Nikki - thanks for that.  Yes it is the PLATO trial ACT5 they're offering.  I've mulled it over and have pretty much decided not to go on the trial. I was diagnosed with this cancer after a haemmoroidectomy back in 2008 and went through all the tests only to be finally told it had gone away on its own and was clear so I never needed treatment at that time.   So having had it come back now 15 years later I'm thinking well I'm 66.  The idea that it MAY reduce chance of recurrence in future BUT at the cost of MAYBE severer side effects makes me very reluctant when I weigh it all up!  I really don't know but don't feel brave enough at the moment lol. 

Carole