My VHL family

My husband was diagnosed in 2000 when we found the first brain tumor. After many months in the hospital and 3 operations. We finally came home and were tumor free for about 9 years. This past Oct an MRI scan picked up 2 tumors again. They operated on the larger on this past feb, and are waiting til the second gets a little bigger. This surgery was quite hard on the whole family. After the 10 hr sugery he had to be intabated for 3 days, was in the hospital for 6 weeks and on a feeding tube for 2 months. Since then he has lost feeling to the lower half of his right side if his body, and is not looking forward to what the next surgery may do. My brother in law, who also suffers from this disease underwent a surgery on his eye to remove a tumor, which has left him legally blind in his left eye. Just recently we found out that he has a tumor on his pancreas that they are very concerned about and another tumor down his spine that we dont even know if they can operate on, with out leaving him totally paralysed. I have two children that I share with my husband who have had genetic testing done and we are waiting on results. This has been very difficult to watch my family deal with this, and to be scared everytime my 10 year old gets a headache. I am scared and im running out of positivity. Everytime it seems things are going to be alright, another tumor strikes down one of my own.

By joyceg98
Posted September 30, 2009 at 7:18 pm
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Do you have a copy of the Handbook? The first place to start is to find out whether you are being sufficiently proactive, and not letting things get out of control. I don't think so from your description, just suggesting that you check that out.

Secondly, where are you being treated? When you are planning toward a surgery, did you get a second opinion? Did you ask the best expert possible to review the scans and sanity-check the approach? We don't always have time to do that kind of research, but following the screening protocol you are more likely to have some planning time, and that's the time to check and double-check the strategy. Don't worry about bruising the feelings of the doctor -- be polite, and firm that you are certain that he would want you to make sure you are confident in the strategy he is suggesting. You are not questioning, you are double-checking to just make sure there is nothing else that might be a little bit better.

And even with the best-laid plans and the very best surgeon and all the best intentions from everyone, sometimes something goes wrong. We are all human beings, and each body reacts slightly differently to the various treatments, medications, and anesthesias. What can we learn from this experience? Was there an adverse reaction to a medication that you will need to know for the future? One person was allergic to the adhesive used on the bandage. See if you can learn and make a checklist for the next surgery. "Things I wish I had known." Write them down so you don't forget for the next surgery, which will hopefully be years away.

What you are striving for is to gain a little more control in the situation. We all need to feel we are in control. There is a great deal in any surgery that we can't control, but there are things we can control -- things you know about his body that the doctor may not know, and which might make a significant difference in the outcome. Be sure all those things are on your checklist, and don't be shy to pull out that checklist and go through it with the surgeon, the anesthesiologist, and the nursing staff. You are essential personnel. As long as you act like a team member -- not a dictator or a threat, but a team player -- this input is usually welcomed by the doctors.

I hope that helps some. Perhaps other people can suggest some of their own strategies for getting back some of the power and control you have lost in this situation.

It will take work, but hopefully he will get back to where he was before. Especially while he is not at full power himself, he needs you to be his proxy and keep things calm and purposeful and moving forward.

Try to stay in the present. Not down the road worrying about your children, but in THIS moment, with your husband. Think of it as being trapped in a well. There is a real and present problem you need to deal with now. Worrying about what's down the road will not help you get out of this well. See if focusing like that will help you stay on course. I know that's hard. The thoughts will come, of course, just don't focus there. Let it slide by, and stay in today.

And ask for the help you need -- from friends and family -- to take care of the kids so you can have some quiet time for yourself and quiet time with your husband. Just sitting and holding his hand, or reading to him, whatever you two find soothing, will go a long way to quieting your spirit and focusing on what needs to be done now.

All best wishes,
Joyce

By marie3
Posted October 1, 2009 at 8:20 am
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This whole VHL journey can feel like a scarey roller-coaster sometimes. We all feel it. Like Joyce says, take control, question doctors, and be proactive. Some doctors will form attitudes, but too bad. This is YOUR (or your husband's) life.

Take care,
Marie

By BriannaB
Posted October 1, 2009 at 5:26 pm
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Thank you for your replies. And yes we are very proactive and have a Wonderful team of surgeons, and doctors working with us. We have a wonderful surgeon as the main Brain and spinal surgeon and many others. We live in Canada and we usually go to the university of edmonton hospital. As for the testing and whatnot we are on top of things. Its just stressful and tiresome on everybody. And now with the brother in law having tumors the family is having a hard time trying to stay positive when the odds are not that great

By gill-05
Posted October 7, 2009 at 10:14 am
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Hi Briannab i just read ur post and want to tell you to try and stay positive i myself have vhl and have lost 1 kidney and a third of the other one just recently and have 9 family members that have it also one of them being my 3 year old son which has just been confirmed by dna testing in the last couple of days .We are heartbroken at this news but it's not the end of the world although some days it has felt it.Like your family we just get over one thing then something else happens but the most important thing is we all have each other .Wishing you and your family best wishes take care and try and stay positive xx

By joyceg98
Posted October 8, 2009 at 12:52 am
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Don't forget to live between tumors. It's easy to get so stuck looking at the down-side that we forget to enjoy the good times.

Count your blessings -- maybe even write them down. Everybody is dealing with something. What are some of the wonderful things that have happened in your life in the last year or two? Starting with your 3 year old's arrival on the scene! A diagnosis of VHL is a challenge ... and an opportunity to protect him with information about his health that most people don't have. Use it to your advantage and his.

Best wishes,
Joyce

By live
Posted October 9, 2009 at 12:43 pm
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It took a while to get used to it but Joyce is absolutely correct - don't forget to live in between tumours. Being miserable does'nt help. Anything can happen - I've lost a couple of family members before their 40's (it's usually the surgical complications) with VHL, but then others have gone on well past their 70's. I can't risk being miserable and scared and wonder what's next just to make it to 80 - that's not living. My grandmother in the days when no one knew about VHL had gone through many surgeries and made it to 58 ( she always looked at life in the positive life - she was a teacher). Her last words to my grandfather on the hospital bed were - "We had a nice run together didn't we Fred?"

By BriannaB
Posted October 11, 2009 at 12:37 pm
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I am really grateful to all of you who have posted comments. I usually can manage to stay fairly positive. My husband is the same, he usually doesnt let it get him down. But my Brother in law is a differnt story. He is totally depressed and noone can seem to snap him out of it. The doctors just told him that he may also have renal carsonoma. (spelling) and may need a transplant. But they might not be able to do it because of the tumor in his spine. He's very afraid of dying from this and soon. And Im not to sure how to keep his spirits up and a positive attidude. If you have any suggestions..(other then therapy, hes doing that now) It would be very helpful.

By joyceg98
Posted October 12, 2009 at 3:39 pm
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Brianna, we need to talk. Please call me 800-767-4845, ext 710.

If you get this message today, my best time would be this afternoon before 6 pm eastern time.

Thanks,
Joyce

By joyceg98
Posted October 12, 2009 at 4:03 pm
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First, take a deep breath.

I see that you are being seen at the University of Edmonton. The good folks there see a good bit of kidney cancer, but not a lot of VHL. Doctors who have not seen much VHL usually do not understand it well, and may over-react. Of course I don't know for sure that this is true, but let's take this one step at a time and validate what your husband is being told, just to make sure.

There is one urologist who I know has seen a good bit of VHL in Canada: Dr. Steve Pautler at the University of Western Ontario. It would be good to get Dr. Pautler into the conversation, or send the scans to him for a second look, before you panic. Call my office to get his phone number - 800-767-4845, ext 4. Ask whoever answers the phone if they would please look up Dr. Pautler's phone number for you.

Read the Handbook section on VHL in the kidneys. http://vhl.org/handbook, or write to vhlpub@vhl.org and ask for a copy of the handbook. This is essential background reading if you have anything going on in the kidneys.

Now let's go through this one step at a time.

All VHL kidney tumors are renal cell carcinoma, that is, cancer. Take another deep breath. This does NOT mean it's about to kill you. It does mean that we need to take this very seriously and make sure that it won't get nasty on you. VHL tumors start out as very small baby tumors that have no idea how to spread to other organs or do nasty things to you. Consider them warts. As you know, you can live with most warts for years and years. But if one begins to turn colors, or grow funny, the doctor will recommend you take it off before it turns into something more nasty. That's basically what we have to do with kidney tumors. The trick is that they are on the inside, not the skin, so you can't see them with the naked eye. We will need scans and experts to help us choose the moment to act.

There is a very great distance between discovering a kidney tumor and needing dialysis. You only need 25% of one kidney to take good care of your needs, without even changing your diet. So you have a backup system and if we plan carefully, he will never need dialysis. He may not even need surgery this season. But the strategy around VHL is different from what a regular urologist is accustomed to dealing with, so we need to get an opinion from someone who knows VHL.

Best is to call me, or even better call Dr. Pautler's office and ask him to review the scans and talk with you and your local doctor about how to manage this situation.

All best wishes,
Joyce

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