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.

[Sangye]

I've thought about this question a lot. I think there are common sufferings to both, like many of you have explained already.

I think a lot depends on what type of involvement you have with Wegs, how well the drugs control it and what damage you're left with.

Assuming someone with cancer goes into remission, it's pretty easy to tell if the cancer returns. Yes, they have to live with the uncertainty of it returning, but they don't have to live with as much uncertainty as people with Wegs--especially those whose labs are completely normal despite active Wegs. Another huge difference: if you have cancer there are no limits on what you can do to support your body using holistic methods. MDs even encourage it. After chemo and/or radiation is over you can do full detoxes and get stronger. That isn't possible with Wegs. And while chemo for cancer is at a higher dose, they don't stay on it every day for months (or years).

Personally I wouldn't trade having Wegs for having cancer, but it has nothing to do with the pros and cons. I wouldn't trade anything I have for someone else's conditions.

[drz]

I think both diseases have a range from mild with good prognosis to very severe with death likely soon. We are dealing with both, as my wife has stage four lymphoma, and we view them as equally distressing and debilitating. We have both had RTX IV treatment, lots of X rays, CT scans and other medical tests and treatments. We both take lots of meds and have many medical appointments, usually several a week between the two of us. Neither disease is curable for us and we both have lot of fatigue and various strange symptoms that show up that we have to try sort out. Both of us have poor immune systems and at a high risk of dying from an infection eventually. We seem to take turns so far in terms of who is functioning best on any given day but neither of us has spent much time envying the other person for having an easier disease. Both of us also have another incurable chronic disease we also had to manage for a long time before we got cancer and WEGS. For me, I think learning to deal with diabetes was helpful preparation for trying to manage WEGS. It is actually much more time consuming to deal with diabetes daily than WEGS and many of side effects and symptoms are very similar.(neuropathy, fatigue, weakness, loss of kidney function, eye problems, etc.) I think my wife is very glad she doesn't have the diabetes though.

I don't think anyone is arguing which disease is better or worse, but for us it would be a draw.

[Stephanie78]

I think BOTH are equally horribly things to go thru. I get annoyed when people hear John went thru chemo and I ask what type of cancer he had. When I reply he doesn't have cancer but "wegeners" they reply with "Oh that's good that it's not cancer". Really?!? My experience with John is that WG can be just as deadly. Who gets to decide that cancer patients deserve more concern then patients with other diseases/ailments? I have known several people who have endured cancer (My mother in law just passed away a month ago from Ovarian Cancer). I don't think any disease/sickness should EVER be compared with one another, because to the person/family dealing with THAT certain issue at that time it is HEART BREAKING none the less.
I think the most important thing is for a person to deal with what they have at hand. Don't let others convince you to compare illness's. One case of WG can be WAY different then another. Even with this ONE disease you can't compare peoples cases and think "Oh My God this is going to happen to us".
One thing I learned has been to stop focusing on others problems and focus on ours (Not that I don't listen or have compassion for others, I'm referring to NOT dwelling on what happens to them MAY happen to you). If we dwelt on the "worse case scenerio" all the time, our lives would be MISERABLE!

[Al]

Very well said, Stephanie.

Al

[gwenllian111]

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.

I use lupus as an example often too. People have never ever heard of WG.

[Dirty Don]

WG? What's that? Have never heard of it? Is it cancer? No? You're that sick, huh? You don't look very ill...in fact, you look pretty good. Must be a rare disease or something...not many people get it...Googled it, didn't look good, but you look good...you're a fighter! Anything else we've heard lately? Hehe...it IS a roller coaster on all sides of the coin...hang in there...with advice and knowledge from Al and Sangye, this forum is keeping me aligned in the right frame of mind...most of the time! LOL...take care all!!

[Al]

WG? What's that? Have never heard of it? Is it cancer? No? You're that sick, huh? You don't look very ill...in fact, you look pretty good. Must be a rare disease or something...not many people get it...Googled it, didn't look good, but you look good...you're a fighter! Anything else we've heard lately? Hehe...it IS a roller coaster on all sides of the coin...hang in there...with advice and knowledge from Al and Sangye, this forum is keeping me aligned in the right frame of mind...most of the time! LOL...take care all!!

Don, if you're aligned and in the right frame of mind after all those meds and the wacky comments like this one, you must be a strong fighter!

Al

[Chris G]

WG? What's that? Have never heard of it? Is it cancer? No? You're that sick, huh? You don't look very ill...in fact, you look pretty good. Must be a rare disease or something...not many people get it...Googled it, didn't look good, but you look good...you're a fighter! Anything else we've heard lately? Hehe...it IS a roller coaster on all sides of the coin...hang in there...with advice and knowledge from Al and Sangye, this forum is keeping me aligned in the right frame of mind...most of the time! LOL...take care all!!

How about......."I googled it and it says it can be fatal in 5 years! I'm so sorry!"
Or......"Wagner?" No. Wegener's. "Wagner's"........nevermind.

[Al]

How about......."I googled it and it says it can be fatal in 5 years! I'm so sorry!"
Or......"Wagner?" No. Wegener's. "Wagner's"........nevermind.

I personally think that GPA is a better term (and maybe more medical to the kibitzers), though "Guppy" doesn't have quite the same ring as "Weggie"!

Al

[delorisdoe]

How about......."I googled it and it says it can be fatal in 5 years! I'm so sorry!"
Or......"Wagner?" No. Wegener's. "Wagner's"........nevermind.

until a few monts ago I thought my doctor had a speech impedement...I always thought I had wegners and could not figure out why he said it was weg a ners.

[Al]

until a few monts ago I thought my doctor had a speech impedement...I always thought I had wegners and could not figure out why he said it was weg a ners.
Last summer I consulted with Drac's mentor at the U. Washington, a Scottish guy who insisted on using the German pronunication--"Veg-e-ner's". Yeah, well, perhaps that s more accurate, but I still can't see c alling us sufferers "Veggies".

Al

[elephant]

I have telling people for a long time Wegeners is like Lupus, because most have heard of Lupus.

[mama2005]

I don't think we can compare cancer and wegeners. these two diiseases may share treatments and some symptoms but they are two totally diffrent diseases. I will keep my WG over cancer. I know some day with the drugs that we are treated with we do have a higher risk of developing cancer and that to is scarry.

[mishb]

I received the all clear from Haematology/Oncology today.
They do not want to see me ever again (they hope). I am all clear from any blood borne cancers and they were actually 100% certain that I don't have any type of cancer at all.

My Lymphocyte readings are still higher than normal but no where near as high as they used to be and not high enough to denote cancer. It is still the inflammation keeping them high.

When they told me back in July that they thought I might also have lymphoctytic leukemia I was actually non plussed about it.
I have never been a glass half empty or half full type person....to me the glass just has something in it. I guess I'm just a realist.
I have faith in my doctors and in the medical system and had faith that whether it was cancer or WG or both, that I would be well looked after.

On another note, I seem to be running out of specialists. ENT already told me there wasn't much they could do anymore and don't want to see me until June next year.
Haematology and Oncology have now told me they don't wont to see me..ever.....that just leaves Rheumatology and Immunology.
Here's hoping that one day I can get rid of them too :thumbup:

[Kimbangu]

When I was first diagnosed I was told "it's worse than diabetes but not as bad a cancer" which I must say, was not a very diplomatic way of putting my mind at rest.

We need to remember that none of these conditions are mutually exclusive, there must be people with vasculitis who also are diabetics for instance.

At one point I told my neighbour I had WG. He was speaking to me about a week later and said "Well, my sister has been a nurse for nearly 40 years and she said she has never heard of it" - like I was making it up or something!

[Sangye]

That's great to hear, Michelle!! :thumbsup:

[drz]

I don't think we can compare cancer and wegeners. these two diiseases may share treatments and some symptoms but they are two totally diffrent diseases.

My wife attends a cancer support group and brought home some ideas from their last speaker to discuss. The oncologist answered one question about treatment by answering that the person would not have survived the treatment due to their age. The number they generally use is 70 years of age since the medical community agrees that all major body organs start to decline from age and by age 70 these organs are unable to survive some of the aggressive treatment used to treat some cancer. If your organs have been damaged from another disease or event, the age limit for surviving treatment might be lower. Since some of treatments are similar for GPA, I believe this may also apply to us. I know my body had been damaged by years of diabetes and some evaluative medical procedures so I feel lucky to have survived the aggressive treatment I needed to contain the GPA.

Comment for the thread on thoughts about dying. Is it better to die from the disease or die from a treatment trying to contain the disease???

[Dirty Don]

drz, isn't the treatment part of the disease? just a thought! Seems to me: no disease, no treatment...just a different way of looking at it. Therefore, they are one and the same...helps me 'contain' MY thoughts about what is going on inside my body, as well as the rest of us. Take care...

[Dryhill]

drz, I agree with Dirty Don that the disease and treatment are one and the same, however if you must split the two I feel I would rather die from the treatment than the disease. My reasoning is it means I was fighting the disease right upto the end and would not let it get the better of me.

[Sangye]

I have never liked the idea of "fighting" a disease. That means someone who dies from it is a "loser."

I don't care if I die from Wegs, or the treatment or a complication or a banana peel. Death is still death!

[Dirty Don]

Pretty much a less stress approach Sangye...and pretty much agreed here...I've found, to date, that 'fighting' WG is not the best way to go as that attitude inherently brings about the worst thing I could imagine with this disease...stress...not good, don't like it, doesn't work well. I follow the docs' advice, do my best, keep looking forward...some days the smiles come, many are fraught with questions and concerns, and some days are just not very good...but it's not a matter of winning or losing at all at this point...I got to 'see the noose' this summer, could reach out and touch it, didn't take it, have worked very hard to get back, still not there, but am better off for the working forward than the 'fighting off' of a disease I don't understand. Whew! Did I say all that...interesting mood tonite!! Take care!

[Al]

I have never liked the idea of "fighting" a disease. That means someone who dies from it is a "loser."

I don't care if I die from Wegs, or the treatment or a complication or a banana peel. Death is still death!

You always cut to the chase, Sangye! Anyway, the ANCA are not purposely dragging you to the mat. They are just doing what they think is their job. Too bad their job is out of balance....Do you remember Goethe's parable about the Sorcerer and his Apprentice?

[Sangye]

Pretty much a less stress approach Sangye...and pretty much agreed here...I've found, to date, that 'fighting' WG is not the best way to go as that attitude inherently brings about the worst thing I could imagine with this disease...stress...not good, don't like it, doesn't work well. I follow the docs' advice, do my best, keep looking forward...some days the smiles come, many are fraught with questions and concerns, and some days are just not very good...but it's not a matter of winning or losing at all at this point...I got to 'see the noose' this summer, could reach out and touch it, didn't take it, have worked very hard to get back, still not there, but am better off for the working forward than the 'fighting off' of a disease I don't understand. Whew! Did I say all that...interesting mood tonite!! Take care!
LOL It sounds like you're in a good place with all of it.

[Al]

Pretty much a less stress approach Sangye...and pretty much agreed here...I've found, to date, that 'fighting' WG is not the best way to go as that attitude inherently brings about the worst thing I could imagine with this disease...stress...not good, don't like it, doesn't work well. I follow the docs' advice, do my best, keep looking forward...some days the smiles come, many are fraught with questions and concerns, and some days are just not very good...but it's not a matter of winning or losing at all at this point...I got to 'see the noose' this summer, could reach out and touch it, didn't take it, have worked very hard to get back, still not there, but am better off for the working forward than the 'fighting off' of a disease I don't understand. Whew! Did I say all that...interesting mood tonite!! Take care!

Don, you do indeed seem to be in a Glenn Miller way tonight. Sure you have the right meds? We will indeed take care, lest we meet up with literary forces beyond our abilities to control....

(This is good; very good! [Now, can you say all that in haiku form (for those who don't know, Don's racket was teaching the kiddies what they needed to know)?])

[Sorry about my own mood; it's all Don's fault for being so darned eloquent.]

Al

[Dirty Don]

LOL, you two are soooo funny, it's so nice to see that and laugh with you. Yes, Sangye, I'm in as good a place as I can find right now...and that's my sole purpose as it affects me and mine and those near me. Yeah, yeah Al...but Glenn Miller??? Hmmm, maybe Miller was eloquent, as far as his time went, but The Doors are much better....LOL...yes, I do search for the upside, constantly...

[Al]

but Glenn Miller???
Remember "In the Mood"?)

Al