Hello from Cambridge, UK

[reddragon]

Just wanted to stop by and introduce myself. I'm reddragon, usually called Red, and live near Cambridge UK.

I'm not even really sure since I should be here yet, but am trying to get a heads up on GPA/Wegeners. My 27 year old son (who lives in the US) was recently told that he has small cell lung cancer. Panic as you can imagine. He went for a 2nd opinion and yesterday the 2nd Dr. called him and told him that he has anca in the blood and he thinks he actually has Wegeners. He's got to go back for further tests but in the meantime I'm trying to get my head around what such a diagnosis means for the future.

I'm finding it difficult to believe that there could be two such different diagnoses and wondered if any of you had encountered a diagnosis of lung cancer which then proved to be Wegeners.

Many thanks in advance
Red

[Dirty Don]

Welcome on behalf of your son Red...not a place you ever expected to be...but it's a place your son needs to tune into for as much info as he can get. What his dx means for his future is rounds of drugs, looking for better ways to live, many docs (preferably WG specialists btw), lots of ups and downs, and a constant awareness must be maintained of the state of the disease...it doesn't go away, just hides if properly treated. I had extensive lung damage at first...my pulmy said once that he didn't get to see many people like me with lungs like I had at the time...but they cleared up, had to be the high doses of pred and breathing rehab/albuterol. I'm glad your son doesn't have cancer, but WG appears to be more difficult to control at times and most certainly will affect his life for many years to come. Best to you both.

[Rose]

Hi and welcome

They thought that I also may have lung cancer when I had my first x ray in hospital when first diagnosed in 2008..... and also 2 other possibilities TB or "a rare disease called Wegeners Granulomatois". Turned out to be WG. I know that quite a few people have been told they had lung cancer on initial diagnosis as I think it can, in some cases, present like that on x-ray. I have infact had a few scares since where they thought again I had cancer but it turned out to be scar tissue from the damage done by WG before treatment. I hope your son gets a diagnosis soon so he can start on treatment as soon as possible before further damage is done. If it does happen to be WG they will want to be sure beyond all possible doubt before they commence treatment as the drugs used are pretty toxic. The road ahead is going to be tough but as Dirty Don says, the best thing your son and you can do is educate yourselves about this disease ...and you have found a great place to start.

Rose

[reddragon]

Thanks Dirty Don & Rose. I appreciate your replies. From the little reading I've done so far it seems like it's a lifelong battle ahead of him. He is also bi-polar and has PTSD (courtesy of Afghanistan) so it's going to be a real struggle to get him to stick to a drug regime (as and when it's decided upon). I'll advise him to come to the board and ask any questions he may have.

Red

[annekat]

Welcome, reddragon. It seems like I've seen several on here whose docs initially suspected lung cancer before their WG dx. I'm sorry your son has the other issues in addition to WG and I thank him for his service, whether it was with our military or yours. It would be nice if he could come on the forum himself, but I'm glad you are here on his behalf and I wish you both the best. This really is the place to be for support and info regarding WG, and feel free to ask any questions, share any stories, concerns, etc. We have a sense of humor on here, too, and there are people here who love animals, gardening, sports, and music, among other things, so sometimes share things that aren't WG related. Most of all, I hope you and your son will feel less alone by being here and get some questions answered. Hang in there.

[mishb]

Hi Red and welcome.

It looks like it doesn't matter what Country you are in, the diagnosis for the lungs all appear to be around the same.....a tumour or TB
Once I had my lung xray and CT, I was also asked if I had been near anyone who has TB, or does cancer run in my family.
It turned out that I did in fact have this little unknown condition called WG, like the other wonderful people on this forum.

Do some forum searching of things that you may be wondering about - or feel free to ask away. There is always someone on here, that may know the answer, because we are from all parts of the world.

I hope your son gets some real answers quickly and some treatment to help him.

[Geoff]

Hi Red, Sorry you have had to look us up but you couldnt have come to a better place for support, info etc.
I dont live that far from you, in fact I visit Cambridge (Addenbrookes) for my ongoing treatment.
If you want to gain first hand information about WG which may help with your understanding of your son's problems, then I would recommend you get in touch with the Cambridge Vasculitis Support Group. There is a meeting coming up shortly with 2 guest speakers, one about the possible side effects of RTX and another talking about neutritional needs etc.
I will PM you with the contact details.

[reddragon]

Well, it's official - my son has Wegeners.
Does anyone know of a Weggie specialist in South-Eastern Kentucky, who they can recommend?

[Pete]

Your best bet is the Cleveland Clinic. I would estimate it's about a six-hour drive. The docs there are top notch and will give your son excellent care.

btw, my wife is originally from Paintsville. That's the basis for the drive time estimate to Cleveland.

[annekat]

I'm sorry to hear your son indeed has WG, but glad that now you both know and can proceed from here. I'm sure Pete's advice is good, as the CC is considered about the best. But 6 hours is a long drive and I hope someone can recommend some good doctors or clinics closer than that, and they could consult with the CC or he could go there a couple times a year or so in addition to seeing more local docs. As a west coaster, I know little about that part of the US and have no clue about driving distances. You can check the Vasculitis Foundation website for a list of specialist, under Support>Medical Consultants. But I suspect there are docs not on the list who are competent to treat Wegs, in many bigger cities and at university medical school teaching hospitals. Of course, the better you can get, the better, and if he can make it to CC, that would be ideal.