Pretty scared

[TCP]

Hi. I am due to see the oncologist in just under two weeks and to say that I'm scared in an understatement. I had a pituitary apoplexy in 2017 and that's how they found the 2.5cm cystic-type tumour. It seemed to be pretty stable but then the vision in my left eye was being affected a fair bit so I was scheduled for surgery in September 2018. All but 1.1cm was removed. Last month I was told that the tumour was regrowing around a carotid artery and that the surgeon said he couldn't operate as it was in a difficult place and it would only keep on regrowing. He said I'd be put forward for radiotherapy.

I have many underlying conditions, Ehlers Danlos, Postural Orthostatic Tachycardia Syndrome, Adrenal and Thyroid Insufficiency, Non Alcoholic Fatty Liver, Diabetes, Small Fibre Neuropathy, Autonomic Dysfunction, Mast Cell/Histamine issues and spine/neck problems. I am worried about my ability to be well enough to attend these sessions every day as I am quite poorly and practically housebound. I am worried about the side effects as I already have fatigue, weakness and nausea daily. I am also petrified about the consequences of having radiotherapy in the longer term in case of cancer, damage to the brain etc. I so wanted to be reassured! Can anyone help?

[member_41389]

Hi
Please don't get too stressed about this before you meet the oncologist.
I had surgery in 2016 which was unsuccessful due to the fibrous nature of the tumour and it being wrapped round the carotid artery in my left cavernous sinus. I had radiotherapy in 2017; this was done using a Gamma Knife, also called stereotactic radiotherapy, and was done in one day - started about 07:00 and finished by 16:00.
This is done under the care of an oncologist. As she said it's her job to deal with the lumpy bits, the endo sorts the hormones and the others join in when relevant.
Unfortunately we seem always to be complex patients and there is inevitably a lot of tooing and froing. I found the oncologist was actually the person who dealt with me as a whole far more than any others as their roles seemed focused on just a bit of what was happening to me.
I hope you find a way through the maze but the radiotherapy was, for me, not as bad as the surgery.
Take care and keep in touch.
Tim

[TCP]

Hi Tim

Many thanks for your reply. Yes, I am getting pretty stressed, to be honest as my other conditions have been getting worse recently and my autonomic dysfunction (possibly from the trapped nerves in my neck) is making my BP very low, heart palps, gastroparesis, etc symptoms are much worse. I am pretty dizzy and nauseated. I'm hoping to talk to the GP tomorrow. I am currently doing ECGs, checking oxygen levels, and mainly watching my BP.

The appointment for the oncologist has already been delayed their end by a week and I am hoping to be able to get to that appointment but can't see me being able to do 6 weeks of 30 sessions. My local hospital uses a Linear Accelerator (I checked out their pdf) and it mentions the masks for brain tumours and I cannot see them referring me to have the Gamma Knife like you had, which I guess would be in Birmingham (I have looked at their information online and it looks great). I will have to impress upon them my situation as regards my health as I am practically housebound and have been for years.

The Gamma Knife sounds good and would be much better for me and the results tend to be more reassuring. I think I meet the criteria for it regarding the type, location, and size of tumour. Do you know how much it would cost to pay privately for it? I know it is supposed to be cheaper than conventional radiotherapy. The neurosurgeon said that he couldn't operate and it would only keep growing, so radiotherapy is my only option. I know that it carries risks and the side effects can be hard to deal with especially if you have underlying disorders. Some people I have spoken to have had a lot of problems and others nothing at all occurred.

Yes, I agree many doctors just focus on their area of expertise and cannot see the whole picture at all.

Anyway, I hope you continue to do well.

Trish

[member_41389]

Hi Trish
The question of referral for Gamma Knife is not just a case of "you have to do what we tell you". The balance of risk and benefit is quite complex and decisions should be based on the conclusions of a Pituitary MDT in a tertiary centre of excellence. You must have to opportunity to discuss the options with an oncologist and if necessary with a radiologist as well as your endocrinologist or other relevant doctors. The Gamma Knife approach does appear to have some benefits in terms of reduced risk of hypopituitarism but may not be appropriate for all. In particular I was told that if the tumour is too close to the optic nerve then it was not a good choice.
The whole point of this is that you have to accept the balance of risk since you must give informed consent for whatever treatment you undergo.
Have you discussed this with the Pituitary Foundation Nurse Helpline? I found them very good at spending time to let you ask the questions and their answers were more informative than the consultants most of the time. In fact the removal of the time pressures of the typical outpatients appointment was a benefit in its own right. They can't give direct advice but they understand the language and can translate from "medical" to "personal" in a way which doesn't seem to get included in most doctor's training.
Take care
Tim

[TCP]

Hi. The consultation wasn't a pleasant one. The consultant was quite overbearing and authoritarian. It was conventional radiotherapy only to be offered to me and they didn't show any interest when I explained my health situation and my possible inability to attend 25 sessions. Take it or leave it. I mentioned Gamma Knife and he completely dissed the therapy. I'm in a state of limbo and I don't know what to do.

[member_41389]

Hi Trish
I'm sorry you had an unpleasant meeting wit the oncologist. I can only suggest two things at the moment; I confess I'm having some issues with co-morbidities at the present which tends to hamper thinking.
Firstly talk to your GP and ask for a second opinion on the form of radiotherapy offered, they are, hopefully aware of your situation and may be willing to liaise with alternative services to find a way for you. However the second opinion is your right under the NHS.
The other alternative is to ask your GP for a direct referral to Birmingham or another closer centre of excellence for pituitary disease.
Sorry I can't be more useful.
Best wishes
Tim