Often doctors and other professionals are not sure what to do as we are so complex . Hope by now you have been refereed and got answers x

So sorry to hear your suffering a lot still. Sounds like you've had a lot of horrible treatments . Not supprised about ptsd and needle phobia. I also had a bad needle phobia and found all the needles and pain from the treatment traumatic.  I'm ok with needles now . I mean I don't like them ofc but can deal with it . For me knowing any discomfort from a needle last such a short time helps and something I had to realise although when you have a phobia it can take years to overcome and maybe some people can't.  Have u had any therapy for your ptsd ? I had ptsd like symptoms during and after treatment but also had lots of other stuff happening.

It's good to speak to another survivor .( I dont know any other adult survivors)  though it was different time . I went through mine in the early 2000's so treatment was probably pretty different.  

Hi Anonymous 

I've only just found this site but I'm a long term survivor. I had A. L. L. In 1981, was treated for two years, had cranial radiotherapy and I'm now 52.

Wondering whether you're still around? 

I've had two wonderful chdren both now in their early twenties so obviously wasn't made sterile, which was a concern during the treatment. I was 14 at the time. 

Now suffering from regular Basel Cell Carcinomas on my scalp which has been attributed to the radiotherapy. Also, I have recently been diagnosed with 4th nerve palsy which means I have double vision, but this is easily counteracted by prisms in my glasses. 

I've led a very full, active and healthy life: run half marathons, been in the Army Reserves, played cricket, football, rugby and hockey at club level, etc. It's not all doom and gloom after treatment. I'm a massive advocate now of the prevention of cancer rather than its cure though. 

Ian. 

Hi Ian

Facing ting re the Inuits certainly something to think about!

Can't remember what I originally wrote apologies if repeat. My .AL.L was in 1973...chemo until 1977 then radiotherapy  which caused my present day multiple meningingomas. 

I have a daughter who we adopted at 10 months.

I am just about able to work 2 days a week despite chronic fatigue, PTSD etc.

You sound as if you've been doing fantastically,  livintage life to the full.

Can't remember what it's called but a lot of people I know with brain tumours follow a specific recommended diet.

Maybe everyone should follow it as it preventative. ..then again I was a baby when diagnosed so wasn't yet on solids, my mum ate health ally but was xray ed when pregnant with me..

Wish I could lead as active lifestyle as you but weekly appointments and continuing health problems prevent any attempts at normality 

Midnightfish 

Hi Anon....

sorry it’s such a late reply but I didn’t get a notification that there was a response.I have been regularly screened for breast cancer and generally lived a life that was protective of breast cancer, no smoker, breast fed the child I had after treatment and very aware of the risks. The heart problems were identified as I was having problems with my blood pressure and had it checked out at the GP. They heard a murmur on the stethoscope so had an ecg at the surgery. From there the referee meto cardiac consultant presenting with left bundle branch block, hence angina and high blood pressure. After stress nMRI cardiac catheterisation through my wrist and stress tests galore, they have found Mitral valve regurgitation, 50% blockages in my LAD and somesmall vessel disease associated with radiation scarring. Very much a mixed bag but they don’t want to do anything other than beta blockers, anti anginals and ace inhibitors as the outcomes from intervening tend to be poor and at best uncertain. So no not a missdiagnosis at all. It’s just one of those things with having treatment. X

If only it was as simple as that Ian. Smoking rates in Inuit communities are 5 times that of people in Canada. Prior to public health services and population registering cancer rates weren’t calculated in these communities so we can’t do real c9mparisons. P 

Hi

I'm really. sorry to hear that you're suffering so much. I think I read somewhere that they gave higher doses of radiotherapy in the early days simply because they didn't have any history of dosage effects. I had radiotherapy in 1982 which is quite a while after you so maybe I had a smaller dose? 

I guess it's hard to stay positive in your situation. I know I'd struggle. I started getting BCCs on my scalp a couple of years ago and they're going to keep coming now. They invariably have to be cut out under local anaesthetic but they missed on that was in my ear canal which then had to be cut out and skin grafted. That totally healed over leaving me with no ear hole. So they did it again. Then that healed over too! Going in this month to have it opened again.

I don't know if this helps but your suffering has helped the experts reduce radiotherapy doses so that others don't have to suffer in the same way.

All the best. 

Ian. 

Hi Ian

I never completed the radiotherapy..it made me too sick, vomiting for 24 hrs after then slept for a fortnight. The doses as with the chemo were experimental, my parents had enough and took me home.

Best wishes with opening your ear cananal..have they considered using a stent ?

My mum has  had a couple of skin legens removed, one from hear head..close call but she was lucky and didn't need a graft. 

My entire abdomen is skin grafted..with little muscle underneath. I had septic pseudonymous whilst i was neutropenic which destroyed it..it took several grafts before it took 

Hello I had treatment for acute lymphoblastic leukemia from the age of 2 till 7. And yes I've have problems with my heart. Which I'm now undergoing test to see the extent of the problems.  I also have memory problems as in short term memory.  My long term is ok. I've also got problems with my muscles in my legs. I was discharged from my specialist in 2004 so I've no one to ask about these things.