Wegners vs Cancer

[maria garcia]

I had someone at work ask me about my daughter. When i tried to explain about vasculitis and mentioned organs. chemo. remission. The person asked me if it was cancer? I replied NO! Then she went on to ask if its as bad as cancer. I chuckled for a minute and started thinking. To me the synonym of cancer is death. Because Ive gone through it with my father who died of it. I broke down bcse to out come is so much like cancer (attacking the organs) what do you guys think? Is cancer worse? I don't mean to hurt anyone's feeling I myself am heart broken.

[pberggren1]

There is no way to compare this directly to any type of cancer. Every case of Wegs is so different as is every case of cancer.

[Al]

There is no way to compare this directly to any type of cancer. Every case of Wegs is so different as is every case of cancer.

Phil is right, though there are a few things that can be said about both: They are potential death sentences, or at least, dramatic life-changers, and they are immensely complicated. Which is worse? Wrong question. That's like saying, "too bad about grandma, but at least she died with a full stomach, right?" My father died of cancer too, Maria, so I understand the sentiment. But I choose to look at either as a way to focus one's life. I would like to know how others feel about this....

Al

[HeatherR]

My Mum died of Uterine cancer back in 1999. She was diagnosed too late for any effective treatment and lived 9 weeks (Nov 98 - Jan 99) knowing it was incurable.
My sister-in-law was diagnosed with breast cancer in 2009 and has made a great recovery. Her treatment has been far worse than anything I have gone through so far.
I am visiting an elderly man from our church (one of my Christian Dad's) who has prostrate cancer plus cancer in the spine and he thinks that my disease is worse than his.
Do I think WG is on a par with cancer - no I actually think to be diagnosed with cancer would be far worse as it does seem like a "death sentence" where as, as much as I hate my new best friend "WG" I think it's the better of the two evils.

Today I'm trying to be positive - I visited my father yesterday - he lives in a nursing home and has emphysema - again not something I want.
life must go on and I have a lot of hope

Heather

[delorisdoe]

Here is what I think the two have in common...

Both are scary diagnosis to receive, both are uncertain and both can lead to death.

The treatment. A really good friend of mine got pancreatic cancer at the age of 27. I have learned that only she understands my fear of the cure. I was her rock during treatment as I did not "freak out" when she said things like "if it comes back I dont want the treatment". Hers was way worse than mine. The surgery took out parts of every organ in her body. The chemo is at a very high dose and caused all of the side effects you would imagine.

if i had to chose which illness to have it would depend highly on weather or not I could chose the type of cancer. Did you know that 85% of people with breast cancer survive past the ten year mark? Some people can live a very long time with prostate cancer?
The general public understands cancer. Cancer patients never hear "oh but you look healthy".
Having said that I would chose wegeners over the cancer my friend has.

When people ask you if it is like cancer id answer no. Id Compare it to something more like lupus.

[Chris G]

Well said leigh. Comparing it to lupus is perfect in the sense that many people have some degree of knowledge about lupus. That's what I use as a when I tell people too. Then I go on to explain that some of our drugs are cancer treatments too. But in our case they're purpose is to stop our bodies from attacking itself, by shutting down the immune system. And the drugs are given at lower doses.

[NicShaf]

I agree with Leigh too. I get asked this question a lot. My Aunt just called me on Sunday, and said she had a couple questions about my disease. I'm always open to answering questions, so I told her to shoot. The first think she asked me was "so...do you have, like, a type of cancer?". I've sent her information and pamphlets, and it is still hard for her to wrap her head around. I think I find this with many people I talk to.
As far as being better or worse, I don't know if that is a fair comparison, but I do fear cancer a little more than Wegs. Yes, Wegs has its seriousness too, but the statistics show that most people respond to treatment and achieve remission.
When I first got out of the hospital, I had refused to let anyone explain Wegener’s' to me until I got my biopsy back about a week later (in hindsight, this was a huge mistake). I went home, and succumbed to my urge to read about the disease, the first thing I read was on Wikipedia, and it said something about 95% surviving up to 5 years. It was worded really odd, and I took it to mean that I had 5 years tops to live. I was completely devastated. For the next 6 days, I barely got out of bed, I couldn't bring myself to eat except when my mom made me eat. It was the most horrible experience ever. When I finally got the courage to ask my husband about his thoughts, he directed me to this site, and explained that I misunderstood, and people lived fairly normal lives with Wegener’s', and I was going to be ok.
The point of my long tangent is, I think that is how I'd feel if I got a cancer diagnosis instead of Wegener's. Both have their hardships, but to me, cancer has a heavier fear of death.
And, I guess I can see people's confusion. They have similar treatments (aka chemo), they both attack organs/ healthy tissue, they both can go into remission, they are both life threatening.

[maria garcia]

Thanks to everyone. It was a very hard question for me to post. Im terrified of Cancer seeing my father suffer so much to then die. Every couple of months he would have to get checked and everytime I would get sick until we got the results (usually not good) he lived seven years after diagnoses. I was tramatized after I was young and my dad was my life. Now my children are my life and Im feeling the same way. Everytime Christina does bloodwork or goes to a doctor I get sick to my stomach and my anxiety goes haywire. You guys are the best.

[freakyschizogirl]

When i was first diagnosed my introduction to the disease was my ENT consultant who told me WG, "Its like cancer - but not."

She explained some sort of logic about them being comparable because they both form with granulomas...i have to be honest i didn't really hear a word after cancer.

My Grandad died of cancer in 1991 and my other grandad died before i was born of lung cancer. My step mum is currently battling cancer that is terminal and so is my step - grandad.

The only other thing i would add (be it somewhat insensitively) that if you have cancer and the chemo treatments work for you - you have a shot at a "normal" life - and by that i mean long term remission.

Like a lot of you tho, i dont think i would swap my Wegs journey for a cancer one. But then, arnt we at a higher risk of cancer now because of the treatments for WG??

[HopeinTN]

I felt the same way about explaining it to others and then hearing "well, at least it's not cancer". Yes, but it's no walk in the park. For me, I'm not bad off and many are with Wegs. I felt guilty for having these thoughts and after talking with my mom (who had breast cancer and so did her mom- my sweet granny), she said I can beat this just as she did cancer and I will be stonger because of it. It's all relative. Thanks for posting.