Wasn't treated for childhood leukaemia but for Hodgkin's disease as a young adult. After a scare about breast cancer risk it transpires that I'm having cardiac problems. A likely late effect of radiotherapy or adriamycin or both! It's 30 years since I finished my original treatment - I'm awaiting an echo and ct scan to see exactly how much damage has been done, however I feel a bit miffed that I have not had any screening for this. The heart effects are now affecting my quality of life a lot and is compromising my employment so I feel resentful that I possibly could have managed this earlier had I been aware.

Hi i just wrote a long post but the website doesn't seem to be working well . Just lost what I wrote to you. il try again.

Im sorry to hear you have been diagnosed with heart problems after your treatment. Its poor you wernt offered more help and support after treatment.  

Im intrested to know how they found out you have heart problems and not breat cancer, sounds quite the misdiagnosis . hope you now get the right treatmenta and support x

anonoymous123

Not a child, but think I have late sideffects....I had radiotherapy in 1996, aged 56 after a breast lumpectomy. For the last year I've been having tests on heart and lungs and only yesterday are the doctors really saying that yes this could be late effects that I am having. I am tired and breathless with restricted lung function and have apparently had a silent heart attack in the past. I have just been told that my spinal scoliosis does affect my thorax, not the lumbar region. I also have sore ribs low on the left which don't seem to show in any scan! What I want to know, is there any one anywhere in the UK who really knows about this? I have asked to be referred but I get the impression that they don't know who to refer me to!

Hi AlieOxon, 

I saw your post and just wanted to give you our cancer nurses telephone number in case you wanted to talk this through with someone. Their number is 0808 800 4040, which is free to call from a UK landline, Monday - Friday (except bank holidays) between 9.am - 5p.m. 

I hope your symptoms become more manageable and you get to the bottom of this soon.

Kind Regards, 

Steph, Cancer Chat Moderator

Hi like you I was treated for ALL when I was young (16 months to 4 years) I am lucky I don't have heart problems  probably due to the drug that causes it wasn't available in the 1970s when I was treated. I do have a thyroid problem though as yet untreated, I have suspected rheumatoid arthritis.. also undiagnosed  due to needle phobia and like you (it seems) I have a collection of other probable related causes...are you willing to chat more ? Would be interested to chat ..

Midnight fish 

Hi. I know this is such a late reply. im so sorry I never saw your comment. I havnt loged in in years. i found an old post of mine online and decided to log bk in. im sorry you seem to be suffering from the treatment. I would be willing to chat on here if thats possible. 

Hi anonoymous

Thanks for reply..am happy to chat 

Midnightfish

Hi anonamous

Am still battling long term side effects. Previous query rheumatoid arthritis symptoms resolved a year ago after had a craniostomy. Still have 2 more brain tumours pending gamma knife treatment in the next 2 years .i have been told i will always grow more. Am having fortnightly haem appointments to try and prepare for this but held back by needle phobia and ptsd. Now have lost feeling on right side of face,have lost hearing on right as well as lost taste...apparently had the tumours since 1976 as a result of the cranial radiation..they never thought to warn me..or do any scans.

Midnightfish

Hi . Just logged bk in after some time. Wondering how you are doing now? Hopefully better x