Help! Who looks after which bit??!!

We as a family have lived with VHL for the past eight years, my son is the first in the family, his lesions are predominantly in his CNS. He does however have numerous cysts on his pancreas, and kidneys.

My sons lesions are of the brain and spine consequently we have fantastic consultants specialising is that area. One of these consultants organises the other scans etc for the kidneys, pancreas, adrenal glands etc. which to date has been fine, but now we are facing some changes in those areas too. I know that a urologist will look after the kidneys, but who looks after the gastro side - pancreas etc? Who looks after pheos? (We have a super opthalmologist who looks after the eyes whom we see annually)

Just one other question......My sons last but one CT scan of his kidneys revealed a solid mass of 8mm - his latest CT scan showed that the solid mass isn't a solid mass it is infact a cyst! How is this possible?

On a final note we are in the UK should that make a difference!!

By beccaloo
Posted June 7, 2009 at 7:25 pm
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It sounds like your son and I have the same VHL issues. My problem areas are also the brain stem, spine, pancreas, and kidneys. I'm in sort of a holding pattern right now. "We're" (we means me and all the docs!) watching a hemangio on T7 and my urologist and I are on a yearly kidney check. Enough about me!

Question 1: who watches out for Mr. Pancreas (Mr. Panc for short). I have a gastroenterologist for mine.

Pancreas Story: My pancreas is riddled with cysts and I've had one of them biopsied so far w/good results (it was benign). I knew I had a lot of cysts on it but during a visit w/my urologist we were looking at the kidneys and there was this sort of glowing, really bright image on the MRI scans. I asked him what it was and he said, "Oh, that's you pancreas." "Why is it glowing?", I asked. "It's not. All those little bright spots making it glow are cysts." You could've lit up a city with the amount of glow coming off Mr. Panc!

Question 2: How can the kidney (aka Righty and Lefty) have a growth one day, and nothing the next?!?

I asked the same question. About 3 yrs ago when my urologist (who I love but is here in IL in the US so sadly I can't recommend him to you unless you move over here!) was looking at my kidney images he noticed there was something growing over on the bottom of Lefty (my left kidney which is whole; my right kidney is missing a chunk b/c of cancer back in '01). He noted that the radiologist who wrote the initial report said there was "an area of concern" on Lefty. Well, my doc looked at the pics and gave me the once over and told me that he wasn't 100% clear b/c the images were fuzzy but it didn't look like a solid mass to worry about and it was also too small to do anything with right now. So, 6 months later we repeated and The Thing was still there, same size. A year later, same thing: still there, same size. Then this year: it's gone. Yep. GONE. I asked my doc if he was on some kind of medication himself or if he'd recently had a hard bump on the head. How can it go from "an area of concern" to "Hey! Get this: It's GONE!" And he said that sometimes that happens. Just like one day there's no growth, and the next there is, sometimes a growth dies on its own. Our body is constantly changing and moving and that sometimes this happens.

I know it sounds like sci-fi or something, but I looked at the scans there with him and sure enough: it was there one year and gone the next.

Now I trust my urologist with my life. He's been there from the first day I was diagnosed and he's been an invaluable asset to my medical team. I can't sing his praises enough. And yet I still asked other docs (including my gastroenterologist) if maybe he was wrong and they all said that yeah, sometimes out body does weird things. I'd still, if I were you, maybe get another opinion, but don't be surprised if you get the same results.

I also have to say that living with a glowing pancreas isn't bad. Every now and then I have a bout of pancreatitis where it just hurts and I have to stay on the sofa or in bed b/c it hurts, but other than that, alls well. same with the kidneys. Lefty and Righty have cysts but as long as I have pics taken of them on a yearly basis and none of them become solid or grow, I just live with them.

I hope maybe something here I've said helps. I know I wrote a lot. If you have any questions feel free to ask. Good luck to you and your son. It sounds like he's very lucky to have a mom like you and I'm greatful that you found out about his VHL status early. I didn't find out until I was an adult and I dont know if I'd done anything different but maybe. Anyway, good luck and have a great week!

By TinaDiane
Posted June 7, 2009 at 11:49 pm
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My pancreas glows also. Tumors and cysts can make an organ glow on a PET/CT scan. Usually they can tell a cyst from a tumor, but not always. A good radiologist, who can look at serial scans, and has seen MANY VHL patients is the best went having these scans read. Ultrasounds of kidneys also help with tumor/cysts diagnosis.
An endocrinologist can also monitor your pancreas. He or she specializes in that organ. But remember, your scans are only as good as the folks who read them, so going to a center where they have seen VHL before is really a PLUS.
Best of health to us all,
Tina

By joyceg98
Posted June 8, 2009 at 10:47 pm
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In fact there are two kinds of doctors you might need for the pancreas:

(1) a surgeon, to monitor the size of the tumors, where they are, and whether they are cysts or tumors, in order to determine when or if they need to be removed. Some of the pancreatic tumors can grow to be cancer that will spread, so we have to watch them carefully.

(2) an endocrinologist for the functional issues (are the pancreatic enzymes getting to your digestive system on time in the correct amounts?) Evidently the cysts and tumors cause "endocrine insufficiency" more frequently than has been appreciated in the past. We did an article about this in our newsletter last January.

There are terrific doctors in the UK. As everywhere, VHL experts do not grow on trees -- you have to hunt for them (including networking here), and/or "train" them, sharing our handbook and newsletter and helping them get hooked into the worldwide chain of information about VHL. Just think -- you are not only helping yourself, you are helping someone else with VHL who will be glad to find the expert you helped to create!

Best wishes,
Joyce

By Myway
Posted June 9, 2009 at 5:51 am
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Thank you! It becomes a little clearer now!!

Joyce I saw the article in the Jan newsletter, and gave it to my son's neurosurgeon (yes I know, but at the time my son was in hospital having just had a spinal tumour removed and we were concerned for him as he was showing a number of symptoms described in the article and as he has numerous cysts on his pancreas one of which we know to be 'large'....) he felt that someone else should be brought in to have a look - be pro-active instead of re-active! My son had an blood test to see if there were raised levels of enzymes, the test came back normal. But as yet we haven't seen anyone to discuss this further with, hence my question - who looks after which bit?, so I can start requesting some help with this matter.

Thank you to you all for your input - it is so appreciated! :o)

By TJ7334
Posted June 9, 2009 at 11:43 am
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It's good to know who is responsible for looking after what. However, how do you get them all together when it comes to making as a decision as to what needs treatment first?

My friend with VHL has tumors in the spinal, cerebral and kidney areas. The head doc says one particular growing tumor has to go right away, but before it could be removed, the neuropathic wrap-around pain and the leg/foot numbness began due to certain spinal tumors. Now the spine doc says a couple of spinal tumors have to go first. But the kidney doc is saying those tumors run cancerous risks and he wants them out soon.

How do you get the experts together to touch base and decide what's most important....especially when they're all saying they should go first?

By Myway
Posted June 10, 2009 at 4:07 am
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That is a very good question!

We haven't been in the situation of kidneys versus spine, although my son has had a lot of surgery recently it has all been neurological.

We have two neuro consultants one surgical the other radiation, their simple way of viewing each growth and which to deal with first and how, is to ask which one has the most risk attached to it if left, which is most life threatening? For example, my son was due to start a 6 week course of radiotherapy to treat a spinal tumour when he had a brain scan which revealed a tumour with a large cyst - immediately it was decided that the brain tumour with cyst was more life threatening than the spinal tumour, so they resected the brain tumour and the radiotherapy was put on hold until afterwards.

I know that they write to each other with outcomes from scans and appointments with us, they also meet to discuss cases - is this something that could be suggested to the relevent parties?

On our side of this, we ask question after question as to the risks that will be encountered if tumours are left, resected or treated with radiotherapy/radiosurgery and don't stop until we are satisfied with the answers and subsequent decisions made.

I am sorry that is all I can offer it is just the criteria that has been used so far with the surgeries and treatment my son has received and in particular the past few months, it appears to have worked, as he is still very much with us, and his neurological situation still under control.

Good luck to your friend

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