Bad news, need a 2nd op

Bad news, need a 2nd op

Postby member_42793 » Mon Mar 09, 2020 11:21 pm

Hi everyone
I had surgery to remove a tumour in my pituitary in July 2016, which didn’t remove all of it unfortunately. Anyway follow ups went well, all medication was stopped as my pituitary regained full function. Scan in 2018 showed little change other than very slight growth in line with expectations, so my next scan would be 2020, well I had the scan and met with my consultants in clinic today and unfortunately for me it’s has grown at an “aggressive rate” and I have been put on the list for surgery which will be in the next couple of months. Following that any residual will be dealt with by radiotherapy ☹️.

This does mean I’ll likely be on medication following the op for the rest of my life, but if that’s the consequence of ridding me of this growth once and for all so be it. I’m really nervous as I’ve been through the operation before and it’s not a pleasant experience, I’m also worried about scar tissue causing complications in the op and I have absolutely no idea what to expect from radiotherapy after. It’s all quite a lot to take in. I was hoping I’d be well into my 40’s before any 2nd operation.

On the plus side I’m very lucky to have a top surgeon and endocrinologist. I hope this COVID-19 doesn’t prevent me getting the treatment I need.

Karl
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Re: Bad news, need a 2nd op

Postby Carl » Tue Mar 10, 2020 9:50 am

Sorry to hear this Karl.

I had most of my pituitary adenoma removed in 2013 and luckily it has not regrown. It is always a fear that it will, so I understand why you are concerned.

Depending what medication you are referring to, it isn't the end of the world if you end up on tablets. I take Hydrocortisone daily and have a 12-weekly Testosterone injection. The daily tablets are easy to manage although of course they are a pain at times, I rarely forget to take them due to a fairly fool-proof reminder system, my wife! We are lucky in that most pituitary hormones are fairly easily replaceable with a synthetic equivalent.

Hope the 2nd Op goes ok.

Regards, Carl.
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Re: Bad news, need a 2nd op

Postby member_42793 » Tue Mar 10, 2020 7:48 pm

Hi Carl

Thanks for the reply, yes I’m not concerned about the medication if I’m honest. I’m just a bit peeved because the first operation although went to plan certainly wasn’t a pleasant ordeal as you’ll know yourself.

Then there’s the real unknown, Radiotherapy..... I really don’t know what to expect. The problem with my particular case is the speed of re-growth which is an added concern. Just a bit all over the place at the moment. Long term I’m not really sure what the expectations are which is bothering me.

Cheers
Karl
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Re: Bad news, need a 2nd op

Postby member_41389 » Tue Mar 10, 2020 8:33 pm

Sorry about you needing a second operation. The Bristol group recently had a briefing from the new neurosurgery team about changes in the arrangements at the hospital (Southmead). It became clear that the techniques have moved on a good bit since 2016 (I had my op that year as well).
The prospect of radiotherapy also weighed on me - I had it in 2017 since the operation was not a success. However it was done at the Bristol Gamma Knife centre - it took 1 day from start to finish and was mainly boring - lying still for hours with your head in a clamp was not great but they gave me a mild sedative and that did the trick.
Everyone's experience of the pituitary journey seems different and it also seems characterised by long periods when nothing happens then suddenly things change and then they slow down again.
Take care of yourself and don't get too stressed by the prospect of more treatment.
Tim
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Re: Bad news, need a 2nd op

Postby member_42793 » Wed Mar 11, 2020 11:17 am

Thanks Tim,

I appreciate the reply. Did Radiotherapy prove useful for you? I’ve heard it can take a while for any improvements due to the small doses, but I’m unsure if that’s true or not. Did they wait a few months before the radiotherapy or was it done quickly after your op?

Sorry for the questions. You’re right though, it does seem no pituitary journey behaves the same. Hopefully they can get all of it out for me, although I’m aware that’s extremely difficult.

Best
Karl
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Re: Bad news, need a 2nd op

Postby member_31784 » Wed Mar 11, 2020 2:49 pm

Sorry to hear your news, I had a very similar experience which resulted in a second operation followed by radiotherapy about 6 months afterwards.
For me the worst part of radiotherapy was the preparation for the mouth guard and fitting of the frame, I unfortunately had an allergy to the contrast dye for the mri. The actual sessions were very quick and efficient- I was at the Royal Marsden. About three weeks into the treatment I started to feel nauseous and tired and my hair fell out in two places. After the treatment I was very tired and low energy for a few weeks but then fine. As far I as can recall what was left of the tumour was reduced immediately although not totally eradicated, but I’ve had no further regrowth. Hope all goes well.
Best wishes
Karen
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Re: Bad news, need a 2nd op

Postby member_42793 » Wed Mar 11, 2020 5:00 pm

Thank you Karen, that’s really useful information.

I’m so glad this forum still exists, because it helped me massively the first time round and is doing so again this time. You get real life answers rather than ambiguous information provided by NHS etc.

I’ve just been called to say my CT Scan with the dye has been booked at Southampton for Sunday, so that’s quite quick.

Thanks again for taking the time to reply everyone, it’s really helping me stay positive.

Cheers
Karl
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Re: Bad news, need a 2nd op

Postby plum » Tue Mar 17, 2020 6:35 pm

Hi
I had radio therapy 12 months post surgery. Because in my case I needed cyberknife which wasn't allowed by the ccg. Apparently it's slow to show an effect on benign tumours. Because by definition they grow slowly.
I've had no apparent reduction in tumoursize but I suppose that I could say that it hasn't grown either.
I agree with Karen about fatigue.
Also... if you have family history of glaucoma please tell them and make ophthalmic appointment. Because the steroid treatment for radio therapy is very strong.
Good luck with it all.
Plum
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Re: Bad news, need a 2nd op

Postby member_41389 » Tue Mar 17, 2020 8:25 pm

Hi
Sorry for the delay in replying.
The radiotherapy does appear to be doing something now, 3 years down the line. It's a bit uncertain but they think the tumour might have shrunk a bit (gone from 10mm in one direction to 9.8!) and my IGF-1 has reduced from 48 to 43 but that's with octreotide LAR 30mg a month as well.
It's all very slow and frustrating but we're still here so can't complain too loudly.
Take care
Tim
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Re: Bad news, need a 2nd op

Postby member_42793 » Tue Mar 24, 2020 11:58 am

I’ve just been called by my surgeon this morning to inform me my operation won’t be going ahead for the time being due to the virus outbreak... I understand the reasons, but I can’t help but feel really paranoid now. Only two weeks ago I sat down and they told me it was growing aggressively & that it needs to come out followed by radiotherapy, now I’m not sure when I’ll have it removed. I was told this morning that if things don’t calm down in the next 2-3 months regarding the outbreak or Coronavirus then I will go straight to radiotherapy. But everything I’ve read so far doesn’t seem to show real results of shrinking tumours. I was also warned at my meeting with my endocrinologist and surgeon 2 weeks ago that its possible it could grown outside of the pituitary void into the brain area and that’s stuck with me and all I can think about. I’m not sure what the risk is of that exactly or timescales or even what it would mean, I’m just so anxious now.
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