Just Diagnosed

[Sangye]

I have a positive blood test and nose biop. I was told I was diagnosed but now they want a lung biopsy. The thing in my lungs the size of my fist (6.5cm, I measured the x-ray and my fist while bored in the hospital) is just to big. My parents are pushing for a biop and referral so that insurance will cover a trip to Cleveland, with a positive diagnosis I can try a weggie drugs and see if they help the growth but It most likely is getting cut out. It is to big for drugs to do any impact and has yet to respond to anything after 7 weeks. The thing has closed itself off in the botom 1/3 of my lung and happy to stay. I will find out wednesday if I can get a biopsy or if they are following doctors orders and just taking it out. I think m parents will help me push for a biop but the thing will in the end get cut out.

Rini, some of this info is incorrect. If it is indeed Wegs it is not too big to respond to treatment. Maybe to the treatment you've had already, but not to the appropriate drugs. Also, Wegs isn't like cancer. There isn't a tumor that needs to be removed. Wegs lesions are your own tissue that has sort of ulcerated. Surgically removing Wegs lesions is not done.

The other problem with doing such an invasive surgery is that you won't be able to travel to CC for awhile. Like Elephant said, the recovery is long.

Here is what I suggest: Contact CC to have them consult with your doctors on your case. They can advise what should be done. This is a free service offered by the docs in the Vasculitis Foundation. Then you can either have the procedure at home or travel to CC and become a patient there.

[Rini]

Rini, you need to get a second opinion. I do go to Cleveland Clinic and see Dr Langford. I did get a little chunck taken out of my lungs, mine was done laporscopy...so the insicions were small. They called it VATS ( video assisted thoracic surgery). Hate to say this, but it was one of the most painful surgeries I ever had. I took me about a year to really get over it. I wished at that time I had a wegs specialist. Anyways, they did comfrim Wegs, they thought it might be cancer. I knew it was a Weggie nodule sitting there to give me some trouble.:0

did they take it all out or did weggie drugs make it go away? ya the surgun explaind the painful part...the after drugs freek me out more then the idea of the surgery...i hate the word epidural & know if they do end up haveing to go the most extream root i will be saying it a lot. once again I am back 2 waiting on second opinions and haveing door 1 &2, drugs and big operation...

[pberggren1]

Unfortunately your case points towards Wegs and going without the drugs is not an option. You are strong and brave and will make the right decision to get Cleveland involved one way or another.

[Chris G]

You do seem to have a confirmed wg diagnosis, so you do need wg drugs. There's no way around that. Pred alone will not send the wg into remission, nor will it shrink your lung lesion. The thought of major surgery must certainly be scary! And it seems like most of us here, think that it MIGHT not be necessary. If your docs would just CONSULT with the Cleveland Clinic docs at this point, and find out whether such a lesion/tumor could be treated with wg drugs, you could get started right away on the drugs you need, and save you having an unnecessary surgery.

[aewaustin]

Rini, I feel for you, I was 20 when I was first diagnosed and I really did not understand much of anything that was going on, it was really hard. I can't tell you how much I recommend going to see Dr. Langford at Cleveland Clinic. She is an expert who works with Wegs every day, and her experience is invaluable. I flew up there from Austin, Texas earlier this year to get diagnosed and it was the best money I have ever spent. Even once you are confirmed Wegs there are still options, and you need to make sure you understand the medicines that are available and what is the best for you. My doctor in Austin has several Wegs patients and she still wanted me to go get the consult with Dr. Langford.

Best of luck to you, and keep us posted!

Anna

[elephant]

Rini, yes they took the whole lung nodule out. Again, see a Weg specialist. LIke Ann said," it is the best money she ever spent." Just give them a call, take it one day at a time. I know this is a scarey and stressful time. Hang in there.

[Rini]

Rini, yes they took the whole lung nodule out. Again, see a Weg specialist. LIke Ann said," it is the best money she ever spent." Just give them a call, take it one day at a time. I know this is a scarey and stressful time. Hang in there.

I got the surgeon to promise to send Clevelend info and help get that contact but in the end all my test results suggest the worst. the Bob blob was infected and in my case they have to try to just remove Bob. it is more then likely that he will take 1/3 of my lung with him. It all depends on what they find inside. No matter what I am in for surgery Friday morning and will most likely be offline for a bit. Thank you for your help and I hope to post back with better news and answers.

[pberggren1]

I wish you the best Rini. We will all be praying for you.

[Sangye]

I'm sorry you have to have surgery but I hope it goes well, Rini.

[chrisTIn@]

...I hope to post back with better news and answers.

I hope so too, Rini. I read your story and all the good advice you got here.

Hope that your docs consult the Cleveland WG-experts before doing anything.
Good luck girl!