My oncologist here in the U.S. is the smartest person I have ever met. He is kind and caring and just generally perfect.
I saw him last week for a twice-yearly visit and talked to him about PRD. Told him all that is done in the UK, doctors who specialize in this "curse", clinics for people with PRD. He was very interested in all that I said, but in the end, he wondered why all this attention and these resources are being given to something that is basically untreatable. He did not say it in a mean way, but was genuinely puzzled.
Oh, well......
JDK
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JDKPA
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That sounds like he’s saying that it cannot be ‘cured’ (made to go away completely), which in many/most cases, may be true. Not a very helpful statement! Parkinson’s and Altzheimer’s can’t be ‘cured’, currently, but that doesn’t stop the medical profession from trying to do the best it can to alleviate suffering, and to devote substantial resources to find potential cures.
Hi JDK, there is actually not a lot of research and resources put into PRD in the UK. In fact most General Practioners (our first point of contact) are unaware that PRD even exists. My own GP was very upfront with me and said he had never come across PRD before but that he was willing to learn with me. Late effects clinics are few and far between and are very new. The clinics are again very upfront in advising that they cannot offer a cure. They are about managing the disease and offering much needed support. Oncologists are aware of the problems caused by radiation treatment but tend to refer us on to a consultant who again is probably not familiar with the disease. This sight has been a lifeline for me. For 15 years I felt so alone and honestly I'd given up on life. Now I have a network of support thanks to the PRDA. I have gone through a programme with a late effects clinic and am in a much better place. So that is the why - support, feeling less alone, having professionals that understand and can offer some coping strategies and medications. Why should we keep quiet and get on with it. I will tell anyone willing to listen about this awful disease in the hope that the next person to suffer will not have to feel like I once did.
That must be very dispiriting for you. I’ve worked for years with Americans , and have many friends there from various places. As I understand it, US medicine focuses very much on treatment in general, rather than, for example, prevention and after care. I don’t know if that is anything to do with the financing of treatment. Just a different approach.
To be fair, I believe the PRDA is the only charity here which supports what is essentially a side effect of a treatment, and it’s been a long haul to get the ‘D’ (disease) in the naming of it.
If your oncologist is kind and caring that’s a brilliant start. PRD may not be curable, but it is treatable. I’m able to lead a much less restricted life since understanding my diet better, and that came about from hospital breath tests & courses on FODMAP foods. I did have to fight for that, so if you can, keep putting pressure on the best you can. It’s just a shift of perspective for your oncologist to understand it’s all part of the same process. Good luck 🤞
When I had them, breath tests were a way to check if you could still absorb/digest certain types of sugars (I’m simplifying here!). You take a dose of a particular pre-prepared sugar, then breathe into a machine or a bag, which reads off the gases you are producing. I found I was not managing fructose well, which led me to adjust my diet and reduce the gastric attacks I was getting. I use an app to check on which foods I should avoid or minimise.
It is incredibly tiring to have to fight for help, everyone on this site will understand. It can be hard when friends and family just want you to be ‘cured’ and find it hard to take that in fact we are still suffering. Every little improvement adds up, so I hope you can see a little light soon.
It was the attitude of consultants here for some time. "You're cancer has been cured. Put up with the side effects." Was the attitude. I remember reading on this site a gentleman who felt living with the side effects of his treatment was far worse than living with the cancer and sadly wished he'd not had the treatment. The medical profession is learning all the time. For instance the amount radiation treatment I had for my cervical cancer is now a much lower dose. And much more targeted. So far less damage to surrounding areas. Having suffered with incontinence for some years I'm now self catheterising and it's made a huge difference. My bowels are proving more difficult to get under control. But at least my medical professionals are helping me to find a way to manage these side effects so I can continue to live an active life. Keep talking to your health team and hopefully they will work with you to get things more manageable for you.
I know that my radiation doses 12 and 14 years ago was much more than an endometrial cancer patient is given now. I quit my radiation and chemo treatments halfway through 12 years ago. I decided I would rather die than endure any more. This was also when I changed oncologists to the lovely man I have now, who supported my decision.
I am just so tired of it all.....and so tired too.
The tiredness is the worst. I've been put in iron tablets and take vitamin B12. I do pilates and dancearobics which definitely help. But if my bowels aren't behaving it still wipes me out. It's a never ending balance to keep the body going. Mind over matter and doing what you can to keep going. Hang on to the good days and rest on the bad ones. Hopefully science will eventually work out ways to help radiation damaged bodies and improve our quality of life after cancer. Take care and take charge of whatever you can to feel good. Xx
Wouldn't it be nice if we knew in advance when the good and the bad days were, so we could plan our lives?
I have had low magnesium since chemo, so 14 years ago. My last bloodwork, the level was "critical" so my oncologist worked out a plan since taking magnesium gives me the runs. I am taking a different type of magnesium at night, calcium (which I already was taking), and liquid Imodium in the morning. So far, so good. Will be re-tested in a few weeks. Low magnesium level will make you tired, so I am hopeful.....
I see we there are breath tests for many things.Here is what Dr. Google (LOL) says:
"Breath tests can help diagnose digestive issues by measuring the amount of hydrogen or methane gas in your breath. These gases are produced when intestinal bacteria metabolize carbohydrates. Different types of breath tests can measure your digestion of different sugars and help identify conditions like: Lactose intolerance, Fructose intolerance, Small intestine bacterial overgrowth (SIBO), Irritable bowel syndrome (IBS), and Helicobacter pylori (H pylori) infection."
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Mental Health & PRD
Difficulty emptying bladder
New to here but not new to symptoms
