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Thread: Daughter here trying not to drop her basket

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    Welcome Lindsey! So glad that you found this group - everyone is very helpful and informative. I was diagnosed in 2011 after a week in the hospital - my first hospital admission diagnosis was pneumonia, but was later determined that the spot was WG. Happy to say that my lungs are clear now. I am now 30 and have had a hard time dealing with the WG, but I have a strong support system in my family. Good luck to your family and your dad!

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    Hi Lindsey - Welcome to our group (not that you would have chosen to be here!). I can relate to your story - I am the 'dad' who contracted WG and one of my daughters was feeling very much like you do. It is very scary for all concerned in the early days as we generally all start from a position of zero knowledge and the initial information seems to be full of doom and gloom. I came through after a period in hospital and, although life has certainly changed, I lead a reasonably normal life again now.

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    You are wonderful, all of you! Thank you everyone so so so much for taking the time to read my post and reply with such warmth and helpful information. ((( BIG HUGS TO YOU ALL )))


    My Dad's pulmonologist appointment didn't go as well as we had hoped. The doctor said the nodule, although small, looks highly suspicious of a cancer tumor. He said that with Wegener's there are multiple nodules present in the lungs and at least one nodule in each lung, whereas my Dad only has a solitary nodule. He said because of where the nodule is located and its small size, it will not be possible to do a biopsy, so a lobectomy would be indicated after he gets Dad's PET scan results.


    The pulmonologist did give Dad's rheumatologist the go ahead to start going heavy on his WG treatment, but that just doesn't seem as important anymore. Sigh...


    I think I am still in shock. I just wasn't prepared for it to be anything more than WG in his lung. I mean I knew there was a possibility, but I guess I was being too Pollyanna.

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    Quote Originally Posted by LindseyRN View Post
    My Dad's pulmonologist appointment didn't go as well as we had hoped. The doctor said the nodule, although small, looks highly suspicious of a cancer tumor. He said that with Wegener's there are multiple nodules present in the lungs and at least one nodule in each lung, whereas my Dad only has a solitary nodule. He said because of where the nodule is located and its small size, it will not be possible to do a biopsy, so a lobectomy would be indicated after he gets Dad's PET scan results.
    Lindsey, I was diagnosed in April of 2012 and am in the process of coming off a decent sized flare up that started back late summer. I wanted to chime in and say that I too have nodules in my lungs. They were rather large and hollow in November when the first chest x-ray was taken. Now, they are starting to show some signs of healing--they are more opaque and have started to shrink slightly. I am still not back to 100% of my lung function and fatigue easily because of the lung damage. But, the good news is that they are healing--albeit slower than I would like them to be healing. I have a shot of my side-by-side x-rays here.

    The lungs will heal over time. Right now, let the docs get on the treatment for the disease and hope that they can stop any further lung damage from the wegs. With the sinus issues, find a good ENT who knows the ins and outs of the disease and is willing to go the extra mile to help your dad.

    I agree with everyone else here, get him on-line on the forum and let him start reading our stories, and let him know that he is certainly NOT ALONE in this struggle.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    I think this pulmy is possibly flawed in that thinking. I am sure that Wegs can present with one nodule. I might get a second opinion from an Interventionary Pulmonary doc.

    Do you know what meds your dad will start on?
    Phil Berggren, dx 2003

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    Quote Originally Posted by pberggren1 View Post
    I think this pulmy is possibly flawed in that thinking. I am sure that Wegs can present with one nodule. I might get a second opinion from an Interventionary Pulmonary doc.

    Do you know what meds your dad will start on?
    I don't know...the pulmonologist sounded pretty confident.


    I did get them to place a PPD, but he said since my Dad has been on a small dose of pred, it probably won't result in a true reading even if he does have active TB. That's probably why his Quantiferon gold TB blood test was indeterminate I'm assuming.


    His rheumatologist said she will give him high-dose prednisone (60 mg) and Rituximab.

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    I am glad to hear he will be starting treatment soon with RTX versus the Cyclophophamide which is much harsher. I hope your dad will join this Forum. He is so blessed to have you as a daughter.
    Phil Berggren, dx 2003

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    Hi Lindsey, Did you get a copy of the CT? If so how does it read? The radiologist will usually indicate what the chances are that the nodule could be cancer, TB, WG (might say inflammatory). Also, I hate to disagree with your doc regarding WG not presenting as only a single nodule, but I do. No where in anything that I've read through the years about WG's says that it only presents only as multiple nodules in the lungs or one in each lung. (This doesn't mean I'm an expert, but I would think if this were the case it would be well known.) Does this pulm doc have any experience with WG's at all? Even though your pulm sounded confident (that's their job as they wouldn't want you to think they were an idiot) doesn't mean he is. He could be reading from a book with no real life experience with WG's. Also where is the nodule located in the lung?

    I would encourage you to call the Cleveland Clinic and make an appt with a specialist to get some definitive answers before having a lobectomy. That is very invasive and I'm surprised that they are unable to do a wedge biopsy. You should be able to get into the Cleveland clinic relatively quickly from what others have posted.

    Also a suggestion is to get copies of all records as you go along. This will make things so much easier in the long run especially as you pick up or change doctors.

    On the up side don't panic. I know that your visit didn't go as planned, but don't assume the worst. I've had reads on CT's that say "can't rule out cancer." I would be more interested in what the pathologist found and his conclusions which are based in fact not speculation. Unfortunately the only way to tel what the nodule is, is by biopsy. The question is whether or not a lobectomy is required. As my doctor recently told me "the issue is the tissue." Please get a second opinion. Best wishes and please keep us posted.
    Last edited by windchime; 02-07-2014 at 12:09 AM.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    I'm sure I have read of people on here who got a WG dx but only had one or maybe two nodules. Others have had smaller, scattered lesions throughout the lungs. WG doesn't present the same way in everyone. You might do a search on here. I remember Katrina posting for a long time about a nodule that they weren't sure was WG, though she had been diagnosed and was getting treatment. But it kept growing and they thought it might be cancer. In the end, I think it wasn't either cancer or WG but some kind of benign tumor. I may be remembering this all wrong. So if you want to search her posts, I think her username is HopeinTennessee.
    Anne, dx'ed April 2011

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    Hi Lindesy,
    welcome to the forum. I am sorry for you and for your family for all you are going through. I understand how tough and scary it is for you as a daughter. I think that it is harder to be the one who is taking care, then to be the sick one.
    your dad was diagnosed fast enough and this will help him recover sooner and easier. rtx is a great med. he couldnt got a better one.
    as for the lungs issue: I had a mess in my lungs in the acute onset, some docs thought it maybe cancer (lucky to me they didn't tell me so at that time), but it was not. I never had any noodles. this made my diagnosis more hard. since in my begginning they didn't consider WG, my lungs were cleared by pred only, 60 mg, in about 2 months. scars remains.
    I echo the others about second opinion of lungs doc. and get a copy of the CT. differnet docs can read it differntly.
    I am sending my prayers to your dad and lots of hugs to you. he is blessed to have you. please continue to write.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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