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withdrawing from treatment

PostPosted: Mon Apr 07, 2014 9:41 pm
by plum

just wondered if anyone has any experience of withdrawing from treatment and if so, did things really get as bad as they say?

i have no complaints about the treatment that i have received. all has been according to the standard protocol (surgery, radiotherapy, drug treatment), but none of them work (as in cure or make a noticeable improvement) and yet they each provide a little present of side effects - buy one get several others free. while the side effects individually are minor, add them up and include reduced competencies and abilities - i have lost my livelihood, my stamina, my physical and my mental capacities due to this thing - and it becomes harder to bear.

so i decided to withdraw from medical treatment. some was easy - just telephone hospital appointments and cancel. avoid going to gp etc, stop renewing prescriptions etc.... but i had an injection booked for today so i went, intending that to be the last one. however this was not accepted. a doctor came to talk to me and at least she agreed that i am getting 'worse'. but apparently i am getting worse more slowly than if i was not on the injections. well whooppeee excuse me if i am not skipping around the room with glee.

so i just wondered if anyone else has reached this stage and if so, what happened?



Re: withdrawing from treatment

PostPosted: Tue Apr 22, 2014 1:52 pm
by member_38167
Dear Plum,

I really feel for you with your dilemma. I have never withdrawn from treatment, but I did resist radiotherapy for about 2 years because I felt that the side effects might be worse than the condition. Some doctors were more understanding of that position that others. Fortunately, I reached a kind of compromise where they offered me gamma knife, which I accepted.

I feel strongly that you have the absolute right to determine your best course, and that medical practitioners should not try and bully you into accepting treatment that you do not want. But, if it were me, I'd want to make that decision based on the best available information and evidence - not doctors wanting you to have something because it is the 'standard practice', and not because I was in denial about the consequences of refusing treatment.

Have you tried posting your question on the acromegaly support group on Facebook? As it's international it has a wider readership I think, and you may be able to find someone with direct experience to help you.

I'm so sorry that this horrible condition is proving so tough for you. I hope that you get some answers to help you soon.

Re: withdrawing from treatment

PostPosted: Thu Apr 24, 2014 7:56 am
by plum
hi and thank you so much for your reply.

you are so right that it is best to make an informed decision.

it was really easy to withdraw by the way ... and no follow-up from anyone to find out why appointments have not been made.

but i saw sadness in family, the macmillan counselor and the endocrine sister. I suppose that makes sense as they see the 'other side' of all this stuff, beyond the blood tests.

no bullying, but i agreed to go back onto the injections treadmill until my next appointment with the endocrinologist. and that appointment has been brought forwards by 3 months.... now to work out what to say without sounding as though i am criticising / whingeing.

best wishes


Re: withdrawing from treatment

PostPosted: Thu Apr 24, 2014 3:48 pm
by member_38167
Hi Plum

Wishing you the best of luck with your appointment - I hope your doctor is understanding and respectful of your feelings.

One thing to factor into your equations: I guess the pain/discomfort/inconvenience of your medicine-related side effects may weigh heavier in your mind than the pain/discomfort/inconvenience of what are at the moment hypothetical side effects of the condition. What I mean is that it's easy to say you want a natural childbirth until your contractions start! I don't want to put you off your decision, which I think is a perfectly valid one, but just thought that's something to bear in mind.

Things I find helpful in being assertive with doctors (if required): dressing slightly formally (maybe a bit like you were going to a business meeting), having someone with you (I find medical staff generally are a bit more respectful if it's two against one!), not being in a 'submissive' position physically ie. stand if they stand, sit if they sit, being well prepared in terms of questions, research etc., shaking hands at the start of the meeting - it's a meeting of equals, looking them straight in the eye, respecting their advice and experience, but being willing to state the undeniable fact that it's your body and you have an absolute right to make any decisions about it as long as you are of sound mind - which you clearly are!

When I had my first child in France, after a couple of days in hospital the doctor said I should be ok to go home the next day once the paediatrician had checked my daughter. The next morning the doctor came on her rounds with a large posse of staff. She stopped at my bed and told me I could go home the next day. I told her that her colleague had told me I was fine to go on that day. She gave a derisory laugh and said "I don't think it's up to you to decide when to leave hospital!" I don't think she appreciated it when I told her that as far as I was concerned it absolutely was, and that a hospital is not a prison! I've met lots of lovely, dedicated, hard-working doctors since, but there are a few for whom it's all a power game.

Best of luck,


Re: withdrawing from treatment

PostPosted: Sat Apr 26, 2014 7:58 pm
by plum
Hi Fiona

I like that idea of dressing quite formally for the appointment
I tend to bumble in to the room somewhat haphazardly so I'll try smartening up - it should make him notice something is 'different'..... so long as he doesn't assume ah she's clean and presentable therefore she's doing 'well'. (ugh i begin to hate that word).

Do you find it helpful to have someone in the appointment with you? my sister came with me for a couple of them early on in this saga, but I found that it was harder to speak openly about some of what I was going through because I didn't want to upset her / cause her to be overly protective towards me etc. But it was extremely useful having her there for the 2 sessions that she came to because we were able to plan beforehand and then remind each other of questions to ask. Also afterwards it was useful to have someone with whom to discuss what had been said, and she was able to take notes also, which meant that we had a better record of the doctor's answers.

Anyhow, I'll be seeing him in a month so I'll report back.

thanks for your support


Re: withdrawing from treatment

PostPosted: Sun Apr 27, 2014 8:03 am
by Carl
If at all possible I'd recommend taking someone with you. I always had my wife with me for my appointments, it really helped as she would remember parts of the visit that I wouldn't and vice versa. I also noted down all the things I wanted to say on a piece of paper before going to make sure I didn't forget anything.


Re: withdrawing from treatment

PostPosted: Tue Apr 29, 2014 7:57 pm
by plum
Hi Carl

Thanks for the advice.

I've started to write notes in preparation so I don't forget. Although I'm not sure what the main question is any more.
Basically need to find a polite way to tell the doctor thanks for everything, your effort is much appreciated but i'm not just a bag of hormones and i'm still feeling rubbish. and without sounding too moaney moaney.

Best wishes


Re: withdrawing from treatment

PostPosted: Wed Apr 30, 2014 6:35 am
by member_38167
Hi Plum

I do find it useful to have someone with me, though I only tend to take someone for 'important' meetings.

I know what you mean about feeling constrained because of not wanting to upset others. Would it help if it was someone who wasn't family - a good friend maybe? Someone who's quite practical and down to earth?


Re: withdrawing from treatment

PostPosted: Wed Apr 30, 2014 8:12 am
by Pat
Hi Plum

Would it be helpful to ask the question about any other/newer kinds of treatment available? You may have discussed this already though.


Re: withdrawing from treatment

PostPosted: Thu May 22, 2014 4:06 pm
by plum
Hi all
thanks for your support etc.
I've had my appointment. Dressed up quite smart, had my pre-prepared questions etc.
Then it came out wrong.....and I feel quite pathetic.

Anyhow the upshot is that I'm still on the lanreotide. Its advantages are that it suppresses tumour action (albeit not fully) and might eventually maybe possibly make the tumour smaller. And one (of the many) risks with high GH is the negative impact on the heart, which they want to protect.

I was offered the chance of moving onto an equivalent: sandostatin LAR. Does anyone have experience of that?
He said that the needle is even bigger than the lanreotide needle.
Well there's a no-no already.
And in fact the problem for me is bigger than just which injection.....

And, if I have understood correctly, I am not going to get better, so I just have to put up with it.
(That sounds as though he was unkind - he was actually sympathetic.)

all the best