To radiate or not to radiate?

To radiate or not to radiate?

Postby member_38167 » Mon Aug 20, 2012 7:27 pm

Hi, I'm a newbie. I was diagnosed with acromegaly 18 months ago and had surgery in march last year. However growth hormone levels are still too high so hospital have started to discuss radiotherapy with me.

I have been mulling this over for a couple of months, but am still not much closer to reaching a decision. On the one hand, I look at the likely side effects, particularly hypopituitarism and think 'jeez, is this really better than the acromegaly?!!'. On the other hand, I wonder if I'm being very naive to be considering going against medical advice by refusing radiotherapy.

Does anyone have any insights to help me in my dilemma?
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Re: To radiate or not to radiate?

Postby plum » Mon Aug 20, 2012 7:53 pm

hi

i have been in the same situation as you.

i was diagnosed almost 2 years ago and had surgery shortly afterwards.
when i went for follow up appointment radiotherapy was mentioned and i was too scared to enter into sensible conversation about it. like you i was scared of losing more pituitary function.

in the end the decision was taken out of my hands. first of all the PCT refused to fund radiotherapy. so i thought phew and thought no more about it. then, about 10 months after surgery i got a phone call from the hospital to say that funding had been found and i would have radiotherapy before the end of 2011. gulp.

i did not know how to decide so i asked why they were so much in favour and why they thought that it was so important for me. the endocrinologist said "becasue you still have active disease". the neurosurgeon said "to protect your optic nerve"

everyone is different and every situation is different depending on the size and location of the tumour etc. so the reasons that they gave me might not be the same as they give you.
but i accepted what they said and had radiotherapy about 8 months ago.

good luck with a very difficult decision.

do you have a consultant / GP that you trust enough to get their opnion and to ask them WHY they think that? you should have it?

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Re: To radiate or not to radiate?

Postby member_38167 » Mon Aug 20, 2012 9:06 pm

Hi, thanks for your reply. How are you feeling post radiotherapy? I expect it was a bit of a relief to have the decision taken somewhat out of your hands?

I have yet to have someone I trust tell me that radiotherapy is my best option. My gp is not great and my consultant has frustratingly gone to ground. The registrar I saw in her place had a starting point of 'well, you're not cured so we need to fix you' which sounds similar to advice you received. The registrar representing the radiologists understood my concerns, and said she wanted to see a new MRI and bloods before making a definite recommendation. In the meantime I am having a trial of lanreotide.

I'm confused because the doctors seem to downplay the poor experience that some people have post radiotherapy, but I'm conscious that those who have a more positive experience may just be too busy living their lives to tell anyone about it. I just don't have a good feel for whether in general people who've had it feel it was a good decision in the long term.

Tossing a coin is beginning to look a good option!
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Re: To radiate or not to radiate?

Postby plum » Wed Aug 22, 2012 6:35 am

you are right that it was a good idea to have the decision taken on my behalf.
but i still needed to trust the reasoning behind it.

i think that, from the doctors' view, a damaged pituitary gland can be overcome with medication while a damaged optic nerve cannot be made to see again. so it is a question of which damage is the one that they can deal with. before all of this started i didn't even have paracetamol at home so having to take all of these medications with the risk of having to take more if the pituitary fails is awful. but i also enjoy being able to see.

as for how i am feeling: hard to say. no pain, that is for sure. in fact that went post surgery. the immediate post radiotherapy effects eg dizziness, sore gums, seem to have gone. i was put on dexamethasone temproarily and that messed up my sleeping but that has worn off as it is about 7 months since i last took it. the latest MRI, taken 6m post radiotherapy shows no tumour growth, which means the main aim of the radiotherapy seems to have been met so far. but i realise that it could have just been resting and gathering its strength ready to start growing again so i draw no conclusions yet.

i am also on lanreotide and have been since february 2011. it would have been earlier but the 'kind' PCT delayed in agreeing to pay.

good luck and i hope that you find someone you can trust. eg keep in touch with the radiology registrar (before she moves on to her next posting), or how about the endocrine nurse?

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Re: To radiate or not to radiate?

Postby member_38167 » Wed Aug 22, 2012 2:53 pm

Gosh, the more I think about this, the more of a dilemma it becomes! Is the endocrine nurse the one employed by the society? That would be a good idea I think.

I too would proceed if they told me my optic nerve was at risk. At the moment there is only a small residual away from the optic nerve and for the moment it is not growing, though that may change of course. To add to the complexity, my eyesight is somewhat at risk from an entirely unrelated source as I had an attack of optic neuritis last year which could recur.

At least as you say there has been very little actual pain involved in all this. I had an ear infection a couple of months ago where my ear drum burst and I had more pain in 10 minutes of that than I've had from acromegaly over however many years I've had it.

I got my letter confirming the ocreotide test. I love the way it's called a ocreotide challenge! It's like when I try to make a chore fun for the kids by turning it into a competition! :D
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Re: To radiate or not to radiate?

Postby plum » Wed Aug 22, 2012 6:04 pm

hi
you could contact the endocrine nurse within the pituitary foundation or do you have one at the hospital? eg who gives you the lanreotide / octreotide challenge? who tests you for hydrocortisone etc etc?
all the best
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