2nd Surgery

[downunder]

Hi all, I am not a frequent contributor to this forum but let me tell you have utilised its content many a time (mostly in the middle of the night when I have been lost and confused). I am up for a 2nd surgery to remove residual pit tumor that I had partially removed about 2 years ago after which I recieved radio0therapy (sterotactic) about 18 months ago, I am oin the max dosage of Sandostatin, and a host of other hormone replacements. However, my GH and IGF-1 have been trending up over the past 6 few months and advice now is to go to a surgeon interstate and see if he can get more of the tumor out to make my endo job easier in controlling the acromeagly.

I am worried about the 2nd surgery because the nature of the tumor (its size has been described as a giant pit tumor, and its spread around important structures) and the fact that the radiation makes it more difficult to remove present risks which could result in neurological damage. There is also the possibility of a cranial approach to the tumor as it has grown upwards (a very techo term forgive me) into areas where the transphenoidal approach cannot reach.

Has anyone out there had secondary surgery after radiation? If not has anyone considered it and the risks associated?

It a pain because I had just started to work up some leave at work after my last foray into the surgery radiation treatments and if I go again all my leave from work will not be used laying on a beach but in a hospital bed and at home.

Regards.

[Paul Clarke]

Hi DownUnder - nice to see you posting again.

I am sorry for your worries. I have not had secondary surgery after radiation. Surgeons will always balance risk against possible gain and I have no doubt that they are happy to go in again. It must be harder to deal with than the first time around because you know what is coming and it like serving a sentence twice for a crime you did not commit. There is also the gamma knife which is extremely accurate and precise and although quite new is proving to be an extremely successful tool for those "hard to reach little places". I am told that the texture of a pit tumour is different in every patient. With some people, it is clearly dilineated and a different colour and easily seperates from surrounding structures. Others are quite the opposite. The fact that they have laid hands on it in the past is I am sure one of the factors they took into consideration before deciding to recommend surgery.

It might be useful to put all your fears and questions on paper and address them with your doc. He will not mind and in fact in the over-whelming majority of cases, he is obliged to answer truthfully so that youo can make the decision whether or not to have it based on facts.

Please keep us updatedon your progress. It is very easy to state he obvious you have heard so many times before in fumbling attempts to ease your nreves however, when you know it is in front of you, it can be a scary lonely place.

Please let us know if there is anything we can do to help.

Regards,

Paul

[downunder]

Sincerest thanks Paul your comments are appreciated. Yes after the last lot of treatment it took me a while to get on a steady keel. I have just managed to lose some weight, get fit again and appreciating the love of my family again. Perhaps this time around I can better prepare myself and come up with some strategies as to how I am going to deal with the loss of well being I experienced before. I have managed to find a great psychologist who has helped me in the past and I think will help me to get ready and through the next stage.

The thing that frustrates me the most is that I feel not too bad apart from a few minor symptoms. As the Dr explained it though if I persist with uncontrolled acromeagly I stand to suffer as I get older (I am 38 now) from things such as heart disease, higher risk of cancer, arthritis, amongst other things. What I guess I have been asked to do is to risk the relatively good health I have now for better prospects in the future or continue as it is and hope things don't go pear shaped in 20 years time. I can only hope that if they manage to remove most of what is left I can only come out of it feeling even better one things settle down and that the GH & IGF1 start to reduce to somewhere near the normal range. One thing for sure though is that I will be still popping pills, getting jabbed, applying a gel and spraying stuff up my nose for many a year to come however.

Thanks again for you thoughts and congratulations on the service Pituitary Chat provides.

To anyone reading in NSW Australia the Australian Pituitary Foundation is planning a seminar on Pituitary disorders in the coming months. For more info check their web site http://www.pituitary.asn.au/

[JohnwithanhD]

Don't I know just the quandary you find yourself in, Downunder!

I felt fine after my surgery (just the one for me) but my numbers weren't down enough so they gave me drugs -- which made me feel truly dreadful! I am due to start a different drug soon, just as soon as the gastrointestinal problems have settled down sufficiently (over three months since last dose of Somatuline but I am still not back to normal). The new drugs of course will have different side effects -- which I will endeavour to put up with, though it is a difficult choice to sell an acromegalic who otherwise feels OK!

Sorry I cannot help more directly with your question, but you have sympathy from me as the choice seems to be between feeling lousy now or generally fine now but even lousier later!

John

[Paul Clarke]

Hi Downunder / John,

I am sorry there is not a lot I can do for you however, there is a cure out there - the problem is the time it takes to get it. When you are feeling unwell and the stuffing knocked out of you, it is sometimed difficult to find the fight you need however, if there is one thing I have learned over the years - it's never give up the fight.

Pit Chat is a soft place to land in bad times. At least here, people speak the truth when they say things like "I know how you feel" because they do. You also don't have to start with convincing people that you are ill.

Keep up the fight - we are all behind you.

Regards,

Paul

[dgrs]

Like the other replies I'm in quite a different position from where you find yourself. I've had two operations and currently undergoing radiotherapy. Am also on Sandostatin (max dose like you) and they're trying to get me pegvisomant.

A full cranial approach was mentioned to me in passing at one point but it never came to that. I've not seen anyone in these rooms who has had a procedure like this but Paul can correct me if I'm wrong.

I was told that tumours have different consistencies. Some are like rubber balls and they can virtually pop them out, others are more fibrous in nature - like mine - and these are more problemmatic as they kind of reach out in a tenticle like fashion (very technical). Maybe, thinking logically, a transphenoidal approach isn't as suited as a full cranial procedure when the tumour is like this. As you say you're is growing upwards does this mean there's potential pressure on the optic chiasm? I think this was the main reason for my first op over anything else.

Don't know if this makes you feel any better, but I was expecting my second op to be much worse. One of the consultants even used the expression tumour hunting. However, in the event the second op was far easier. For the second op they did extra scans (morning of the op and these were used as a kind of GPS guidance system I think) and I think the surgeon knew exactly which pocket of tumour he was aiming for and that was it - he wasn't interest in going digging. I think everyone knew pre 2nd op I'd still need radiotherapy but this was a further debulking exercise. 2nd time round I didn't even have nose packs (1st time had a fat graft and nose packs).

Sorry none of this is much help. You and others have highlighted the issue. To go all out now for as near a cure as possible or accept the status quo and hope it continues. All the best with it and let us know what you decide.

Best wishes,

Dave

[Paul Clarke]

Hi Dave,

It is of great help to many people who are yet to be in your position. Also, being an old fuddy-duddy, I am a firm believer in a problem shared is a problem halved.

Keep on typing - please,

Thanks,

Paul

[claire d]

Hi Downunder,

I'm sorry I can't offer any words of wisdom but like everyone else, I'll be thinking of you.
Making these decisions is tough. I've had two unsuccessful transphenoidals for Acromegaly, despite it being a smallish
tumour and will probably have to decide about radiotherapy in the next few months. So a bit the other way round to you.
My surgeon commented that the second time the tumour was 'fibrous' - this sort seem to be harder to get rid of.

I did find the second 'op' less scary - just knew what to expect I suppose! I also had less discomfort this time immediately
after the surgery.

Let us know how you are getting on.

Best wishes,

Claire

[jasonp]

Thanks everyone for your thoughts and best wishes (I have signed in from work under a new login as I have forgot my original sorry for the confusion).

Latest is that I just had another MRI last night the results of which are being expressed posted to the surgeon interstate and hopefully I will get a call from him tomorrow. Advice from his end at this stage is that the tanscranial approach is the likely method.

I have come to terms with the op somewhat after speaking to a few people I have ran into who have had this surgon operate on them. He is apparently one of the best in the country at this area of the brain. However, the thought of having my brain exposed is a bit off putting to say the least.

Who knows rsutls may be that Acro is controlled and a new light will dawn on life for me!

Will post when more is know.

Regards.

[Paul Clarke]

Hi Dave,

If it is any consolation, the worst part of any surgery is the lead up to it - the anticipation. Once work begins, something positive is happening that is going to increase the quality of your life. The only thing you have to worry about is getting better.

We are all thinking of you. Please keep us updated and if you have any questions, don't be afraid to ask.

Regards,

Paul