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not Von Hippel Lindau... now what?

girlypants's picture
girlypants
Posts: 31
Joined: Jan 2012

I had genetic testing done to see if I had the Von Hippel Lindau gene, my urologist swore that is why I got kidney cancer at 28. Well guess what, I dont have the gene. So what the Eff does that mean? Why did I get kidney cancer at 28? Did I do something, eat something, breath something? If just doesn't make sense. I wanted closure and thought for sure I was going to have it. Random occurrence just doesn't cut it for me at the moment. I have to accept it but I just dont know if I can at this point. I have to find a way to not fear life, all I keep thinking is what if I get another cancer. Maybe I should move to organic food, but I love my regular yummy food.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Answer: GET ON WITH YOUR LIFE!!!

And, go get some psychological help "to not fear life".

What was the point in trying to blame your genes? Was it to find an excuse for lifestyle - e.g. "yummy food"? It's still unlikely that your getting cancer was due to a genetic factor but that doesn't mean it was your 'fault'. I bet your medical advisers are (correctly) telling you you're now fine and should recognise that you HAD cancer, don't have now, are very unlikely to get it again, and should just get on with your life. Is that right?

Limelife50's picture
Limelife50
Posts: 420
Joined: Nov 2011

I think it would be much better if you love life and not fear it and look at your situation as a second chance to do some positive things with your life.Don't get to complacent ,keep going in for your checkups at least once a year and sorry to say this but yes you are in the same boat as the rest of us,meaning you probably will never have to deal with cancer again,but sorry there is always that small chance it could return.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

You ask the question that has no answer. WHY did you get cancer. I often wonder - why do children get cancer - why do pregnant women get cancer? Why does anyone get cancer? I do find it distressing that so many younger people are being diagnosed and I'm sorry that it has happened to you. But the advice you've already received is wise - you're alive - your cancer has been discovered (early) - live life with as much gusto and joy as you can muster. Something that always reverberates in my mind is -
nobody knows when they will die - whether they have cancer or not. So living - really living LIFE is the best and only thing any of us can do.

JackieP125's picture
JackieP125
Posts: 55
Joined: Jan 2012

I think we would all like to know "why we got cancer". So far I have no answers. I was just in the wrong place at the wrong time. I am working towards getting on with my life. I have my 3 months post-op tomorrow afternoon. I am looking forward to getting that over with. My first set of xrays to follow. The fear of reoccurrance lives inside all of us. We have to deal with it. We can't let the fear control us.

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

I think you made the same mistake that many on board have made. Pez. Don't eat too much Pez.Especially stay away from the turkey flavored pieces. The broccoli ones are better. If you are not guilty of this, then you are like the rest of us. And there has not been any obvious reason as to why we each were awarded this chance to live with a solo filter. The biggest chance of having kidney cancer is related to living and playing golf in Michigan.

j_rod
Posts: 125
Joined: Mar 2012

...I, myself, stay away from the artichoke or okra flavored ones - they definitely make me ill. I, too, tried to explain why...my past unhealthy habits? Hereditary? The water? Believe it or not, a woman I worked with was discovered to have kidney cancer. After removal of it, she came back to work - it was her last year due to retirement. She finished the school year and retired as planned. She came back this year to sub for a couple of teachers here and there. She and I talked and I asked her what kind of kidney cancer she had...she said she couldn't remember...but that it was rare. I asked her "Was it papillary?" She replied, "That's it!" What is strange about her 'rare' cancer is that I was diagnosed with papillary cancer, too. What are the chances that two unrelated people who had only worked together for 3 years would have developed a rare cancer within two years of each other? I don't have any idea. I do know this....I am living a more honest life right now. I am doing things I want to do, and not doing things I don't want to do. Granted, I don't want to clean the bathroom, but I don't mean that. I mean I say 'no' to duty and obligations that I feel pressured to do because I don't want people to not like me. I say yes to duty and obligation that I want to do. It has been freeing. I haven't turned into a 'b' - I simply say 'no' with a smile on my face.

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

j-rod, I know exactly what you mean about saying no. When I returned to work after my nephrectomy ,I ssaid no to alot of people. Values and priorities changed.....reminds of a story I posted earlier. When I golf with my buddies, and when the search for a lost ball begins, I remind them that my life is too short to spend looking for a lost ball. PLAY ON!!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

GP,

There is nothing random about cancer, at some point in our lives EVERYONE deals with it as a patient, caregiver, or friend. You are at a slightly higher risk than the general population to have RCC visit you in the future, but it is far more likely that you are going to die of old age or by accident first. There are no guarantees, you didn't get to choose when, where, or how you were born and you don't get to choose when, where, or how you will die (not ordinarily at least) and there will be many unanswered questions between those events. Your perspective on on life has been forever changed, you can choose for that to be a good thing or a bad thing. You have received, at an early age, a gift that many go completely without, you have stared mortality in the face and learned a great truth from it, life is but a fragile balancing act and we must make of it what we can while we can, sharing that with others over the next 70 years may provide the answer to "Why me?". You also asked "Now what?", I suggest that when you reach the ripe old age of about 50 and you are looking into the eyes of your first born grandchild you'll have that answer, and it could happen much sooner, but it will take time. The contrast between my first 58 years (prior to RCC) and the 2-1/2 since is very sharp, perhaps it is this way because I was older and very familiar with this disease, but I strongly suspect that it is the same for all of us to one degree or another.

Just my $.02,

Gary

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

That's a sobering thought. I've just recently read an article about how our immune system plays a large part in destroying cancer. In this article it mentioned that EVERYONE has as many as 10,000 cells a day, that have gone haywire and morphed into cancer cells. However our immune system generally does it's job and eradicates them. So..the "Why me?" is not too valid.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Fox, I've made the same point recently but I've not seen the article you referred to. If you could retrieve a reference for it without too much trouble, I'd be keen to read it myself. I hope your march to victory continues in full stride. T.

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

What I had done was search "the immune system and kidney cancer" or 'Cancer and the immune system." Not exactly sure. Maybe tonite I can look again. I'm off to my scan now. It's in the upper 80's and I am riding my bike and going to enjoy the afternoon.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Enjoy the ride. I know I'm not the only one with all my fingers crossed for your scan results. I'll be watching out for your news.

It was below freezing here but the sun has blazed all day so we got up to 10C. which, I guess is 50F - perfect for me. In the upper 80s my prognosis would be even shorter!

Go MDX!!

j_rod
Posts: 125
Joined: Mar 2012

I, too, like good food. I used to like wine, too. Like the people here mentioned...we don't have the answer for why some people actually develop cancer vs. those that don't. Take my older sister, for example. We were all waiting for her to develop cancer or heart disease or stroke. She doesn't exercise, never has. Overeats and is overweight by quite a lot. She is 4'10" and weighs over 200 lbs. She has high blood pressure and is pre-diabetic. She smoked - she quit last year. She drinks - I don't know how much, but last time I saw her she was putting away a 12-pak a night. But, she didn't get cancer, I did. Where my lifestyle in comparison to hers is better, it is not pristine. But I don't think anyone asks for cancer. I do think it is like everyone mentioned here, something has gone wrong perhaps with our immune system. I have been working on that by finding more information on increasing my immunity. So far, so good. I found a supplement at my local health food store that they say "they sell a ton of it." I work as a teacher and I have not been sick this year. I hope this supplement is working. When I got the news that my kidney mass was cancerous, I went in the store. The clerk kept asking me if she could help. I finally said yes. I asked if there were any remedies for cancer. She asked if it was for me or someone else. I told her it was for me. She said yes - she went to the back room of the store. She said they sold an awful lot of it. It is expensive at $60 - but at the time, I felt anything was worth a shot. It has had actual trials and it shows that it increases the body's natural killer cells. It has even been mentioned on some reputable cancer sites that it does to work. It is called AHCC by Source Naturals - I was going to type the information of the label but it is too long. If you need more info, I well send you a private message. I will try to find the links which talk about this supplement.

j_rod
Posts: 125
Joined: Mar 2012

http://www.mskcc.org/cancer-care/herb/ahcc
It is the Memorial Sloan Kettering Cancer Center. Great info.

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

I've looked. I can not find the article stating that up to 10,000 cancer cells are knocked out of our bodies each day by our immune system. Others better at internet searches may find the reference.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks for the link Jan. It never was just Alice in Wonderland and Timothy Leary who discovered the magic of mushrooms! I think I'll investigate more for myself. It's in a different category, I think, from the Graviola tree. The huge money involved in cancer drug development with consequent defensiveness and potential for corruption makes it fertile ground for conspiracy theorists. So, I always take stories with headings like "CANCER KILLER – Natural Cancer Cell Killer 10,000 Times Stronger Than Chemo!"

http://natural.tv/2012/01/05/cancer-killer-natural-cancer-cell-killer-10000-times-stronger-than-chemo/

with a pinch of salt (don't risk more salt than that!). At the same time, we need to remember that just because you're paranoid doesn't mean they aren't out to get you!

So, I looked into soursop a little further and found this interesting

http://cancerhelp.cancerresearchuk.org/about-cancer/cancer-questions/can-graviola-cure-cancer

which concludes with the caveat:

"We do not support the use of graviola to treat cancer. Our advice is to be very cautious about believing information or paying for any type of alternative cancer therapy on the internet. You may find it useful to read our section about searching for information on the internet."

An item like AHCC is more worth following up on when it gets mention on the MSKCC website.

j_rod
Posts: 125
Joined: Mar 2012

As a teacher, I have to teach research at the most basic level for 6th and 7th grade students. Since it is an introduction to research, I focus on the most important and most basic of skills. First, I teach students to not believe everything they read. I tell them to consider the source. If the source is reliable, they may use it in their research. If not, forget it. I teach them how to decide if a source is reliable. Since you are already well versed in this area, I will not give a lesson here....suffice it to say, I took the basic skills I needed to pursue my advanced (Master's) degree, and brought it to their level. I was very surprised to find a section on Sloan Kettering's website, but pleased, too. So, speaking of natural remedies, why do you think people are flocking to Mexico for natural treatments? Why are apricot kernels banned for sale in the US? What about almonds? I will go back and look for links on that, but when I mention these things to others 'in the know' they confirm that people are going to Mexico for these treatments.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

The use of medicines not derived from plants is a fairly recent development. I don't suppose many people need excuses for a trip to Mexico. Also, with immigrant populations come cultural innovations which can easily develop a bandwagon effect.

That's pretty valuable teaching you're doing and it must be very rewarding.

Most nuts are very valuable foods. The ban on sale of apricot kernels in the USA is probably due to their cyanide content coupled with inadequate hard evidence of anti-cancer propensity.

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