Scared of kidney cancer

• By Sheela
• Posted April 7, 2008 at 6:09 am

Hi Simon

Glad that everything went well with your last surgery. I also had a spinal tumor removed in 2003 - it was on the T10 and so there was worry about me losing the use of my legs. Surgery went well and the surgeon was great - he told me that if i walked into his office, I would be able to walk out after surgery - Initially when i had the problem looked at in 1994/1995 the suggestion was that i leave it in till it grows as it was too risky to take out then - the reasoning behind it was if it does not give a person trouble why disturb it. Also as the years progress so does medical sceince. I could not have agreed more.

Three and a half years ago i was told that i had five tumors in my kidneys - one on my right and four on my left. I was not happy with the surgeon as he wanted to remove both my kidneys. He was less than tactful and i was uncomfortable with him, did not get a good vibe off him - got a second opinion, this time with a surgeon who dealt with VHL patients and i have kept both my kidneys to date. One of the tumors have solified and needs to be removed - this will be done on the 1st of May 2008. Im having a partial nephrectomy done to remove the tumor and have been told that i may have surgery in the future to remove other tumors and thats fine with me. This will my ninth surgery and even though i am scared i know that i am in the best of hands. I cannot have radio theraphy because of its position - it will be difficult to access the tumor in question.

I suggest that you get a second opinion first -a surgeon that deals with VHL patients rather than have someone who had never had any experience dealing with this - i went through my genetics counsellor but am sure that you can contact the VHL alliance in the States and find out which hospital is closest - they can then give you a more informed opinion.

Regards

Sheela

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• By kimbre
• Posted April 7, 2008 at 10:10 am

Hi Simon,

I just found out in December about kidney tumors myself. I lost my mom to kidney cancer (now we know it was VHL). I was very scared too. I am young with 3 little boys. I consulted with 2 doctors here in Seattle, WA and they were good but unable to feel confident in removing just the tumors. I was told by one that he could do a partial but it would be an open surgery. I contacted NIH and he did too. They are doing clinical trials there now on kidney cancer and VHL. I was able to get my surgery done laproscopically and it was amazing. They truly are the experts there and were wonderful. Just shoot them an email and see what response you get. Have you ever contacted them before? They were quick to respond to me and invited me there. I am to return in May for a follow-up appointment. I urge you to at least try to talk with them. The phone number is 301-496-6353. The email is leitec@mail.nih.gov. She will be able to tell you if you are eligible to come. The flight is free and the testing, procedures, etc. I understand where you are right now- I am unsure of what they will find in May, but I do have hope. If tumors are found early and removed, we have a good chance. What is your biggest size tumor? Just wondering because they will not remove anything smaller than 3 cm as a rule. Right now, they are watching another tumor in my right kidney- it is very small.
Take care.
Kim

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• By joyceg98
• Posted April 7, 2008 at 2:22 pm

Hi, Simon.

There are more choices than that. Here's what I would recommend.

1. Take a deep breath. Let it out slowly. Practice this or other relaxation techniques to keep you calm and focused. You can do this.

2. Read the Handbook, especially the section on VHL in the kidneys. Removing the kidneys is NOT the place to start. We fight hard to stay on our own kidney power our whole lives. You can do this.

3. Call us at 1-800-767-4845, and talk with me (extension 4) or one of the hotline volunteers (extension 1). We will coach you.

4. Be sure you know things like: of these things they see on the scan, which are HARD TUMORS and which are CYSTS. Cysts are a non-event. Hard tumors are the ones to watch. See the Handbook for details. You need to know these details to participate actively in your care.

We are here to help you. I look forward to speaking with you.

All best wishes,
Joyce

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• By FridayThe13th
• Posted April 8, 2008 at 4:20 am

Thank you to everyone who replied.To answer the questions (looking threw my medical records) they state:

1.I was found to have to have multiple cystic and solid lesions bilaterally in the kidneys.

2.largest tumor in right kidney is 2.8cm and largest tumor in left kidney is 3.3cm.

I have been accepted to The National Institute of Health and they have explained to me that everything will be free except for the motel.Yes, I understand it is a wonderful chance for me and right now I'm trying to save up the money to get there.It's kinda hard because I have been out of work since last October (awaiting medicaid and disability) and my girlfriend works at a job that she barely makes more than minimum wage.It's flustrating and I've looked sooo many places online trying to find financial aid just to get a motel for the week that I'll be in Maryland but I really don't know where to get the help I need.Any suggestions would be appreciated.

Thanks again and God Bless all of you,

Simon

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• By dibeal2111
• Posted April 8, 2008 at 10:55 pm

Hi! I am a vhler who has had brain surgery, ELST surgery, and two kidney surgeries. I am also a research participant at NIH. Have you contacted a social worker at NIH? They may be able to help find some sort of accomidations for you during the trip. This is your health and is your left tumor gets much bigger it may complicate the surgery so you really should get out there ASAP.

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• By JLowrey
• Posted April 10, 2008 at 10:19 am

In 1996 I found out I had VHL every doctor I talked to had no experience in dealing with it. I serched the internet and found the Cleveland Clinic they were able to help me They have delt with VHL patents from around the world. I discovered that I had masses on both my kidneys they had to remove my left kidney and half of my right. I went 11 years on that half a kidney with no side effects but VHL finally caught up with me againand in Nov of 2007 I had my last partial kidney removed, I now have to take dialaysis but I am alive and looking forward to a transplant which all the doctors around Cincinnati where I live tell me I have to wait 5 years but the doctors at cleveland clinic are talking about 1 year. I have learned one thing about dealing with a disease like VHL, go the the best and Clevland Clinic is the best. when everyone else wanted to remove both the kidneys in 1996 they beleive the opposite they gave me 11 more years of freedom.


Good Luck
Jeff

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• By Frupper
• Posted May 10, 2008 at 6:52 pm

Hi Simon,
I had kidney tumor surgery last year. It was laparoscopics surgery where just cancerous tumor was removed (2cm). No blood in urine at all. I returned to work after 14 days (5d I was at hospital, 9 at home) . I will have periodic check next week, I hope it will be O.K. Don't worry new methods of surgery comming every day and you just need found somebody with experience with VHL.
I have tumor in my spine for two years (8mm TH1) still without symptoms.
David, 29

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• By picko
• Posted May 26, 2008 at 9:41 am

hi simon i had a full nephrectomy last may (i live in England) i spent 10 nights in hospital (had a big infection) and then 4 months off work recovering, i am still suffering discomfort from the wound site, i have now got problems with my other kidney i have been told that i have cronic kidney disease stage 3 and a tumour on my pancreas not going to be beaten by this illness think positive and hopefully everything will work out for you. take care

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• By heavenlykaelee
• Posted May 27, 2008 at 9:26 pm

Hi Simon,

Hang in there. I was diagnosed with VHL last February with numerous tumors on my kidneys (8 on my right and 3 on my left). My had dad had VHL and died in 1998 from complications after being on dyalisis. I showed no symptoms what so ever, but after my doctor found out about my dad he pushed me I finally got tested. On 3/31/08 I had an Open Partial Bilateral Nephrectamy performed and they removed 2 of the largest ones on my right and performed cryo therapy on the rest. My surgeon did an unbelievable job in saving both kidneys, and I just returned to work last weekend. It has been a tough recovery, but manageable with my family's support.

My point is: there are procedures out there that can be performed to save your kidneys. It just requires the right doctors knowing what to do.

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• By Hermvr
• Posted September 19, 2008 at 8:20 am

Hey there Simon,

I have just read all the posts and was wondering how everything went ? Everybody is correct in saying "shop" around until you find the doctor that you feel comfortable with and that has the knowledge.
I have been diagnosed with VHL in 1999 with large tumors in my eyes. All was removed and I am currently still clean. I have been informed though by the VHL group in South Africa to have my kidneys scanned/ This was done and I was shocked to find that there are numerous tumours on both kidneys of which the biggest was 5 x 6 cm.
Numerous doctors told me that I will loose the kidneys, but I found a doctor that sent me for so many tests that my medical care was exhausted. All this was worth it though as I am currently at home recovering from the surgery (which was suppose to have been Bench Surgery but it turned out that it went better than expected) and feeling great. My kidney was saved and I am scheduled for the next op in 3 months time.

What I want to say, is this:
It's natural to be scared of this, however, you are now with the NIH which I believe is brilliant. We do not have such facilities in SA and I was thinking of having my op's done in the States.

Secondly, have faith my friend. My life has changed after all this and faith carried me through. (as well the "angels" calling themselves doctors and nurses !!)

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