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Thread: Daughter here trying not to drop her basket

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    Quote Originally Posted by windchime View Post
    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.
    Cindy, below is my Dad's chest CT report verbatim.


    ------------------------------
    Chest CT with contrast


    History: Wegener's Granulomatosis


    CT of the chest was performed after injection of 100 mL of nonionic contrast.


    Multiplanar imaging was obtained.


    The pulmonary arteries are normal. The aorta is normal. The lung zones are well seen and there is some chronic change in the lung apices. There is a spiculated density in the posterior apical left lung. This should be further evaluated with PET scanning to be sure that this is not a malignant lesion. This is approximately 1.5 cm in size. Mediastinum is intact. No infiltrate pleural effusion or other findings are seen. There is no adenopathy.


    Impression: Apical left lung spiculated density 1.5 cm in size, etiology is undetermined. Recommend PET scanning. Mild chronic lung changes.
    ------------------------------


    I honestly did not ask the pulmonologist if he has had experience with Wegener's patients. I wish so hard that I had asked. He appeared young to me (mid-40s maybe?). I think I was in such shock that he thought it to be a malignancy that I wasn't really having lucid thoughts. As a nurse, I am on my A-game with my patients, but with my Dad I was just his daughter. All I seemed to hear was "malignancy...Wegener's doesn't present with a solitary nodule...Wegener's is always present in both lungs...does not look like an infection...PET scan...removing left upper lung..."


    As for Cleveland Clinic, he told me he wants to wait and see what the PET scan shows and then he would consider going forward with an appointment there. He says he is still feeling overwhelmed with what the pulmonologist said yesterday, so he does not want to plan that trip right away. I guess if I were facing the possible diagnosis of cancer, that would be my top priority as well. I'm hoping and praying constantly that this isn't his case though, but the pulmonologist seemed so sure...

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    Lindsey, your dad can make his own appointment at Cleveland Clinic with Dr. Langford. I would seriously go ahead and do that.
    Phil Berggren, dx 2003

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    My Dad also went to his ENT today. His rheumatologist made him the appointment on Monday so he could review Dad's sinus CT with him. My Dad said the ENT told him his gums had completely cleared and healed and the only other thing of note on his assessment is his left nasal passage was more inflamed than the right, but this inside of his nose did not look very bad at all. The ENT also said, "Hopefully this thing in your lung is inflammatory due to Wegener's and can be cleared up with treatment." Of course my Dad said he thought he may just be trying to make him feel better.

    All of my Dad's complaints/symptoms are on his left side (headache, tearing eye, runny nose, scalp tenderness). Go figure when you read what the CT showed.


    If I may, I am going to post my Dad's CT sinuses results:


    ------------------------------
    CT Sinus


    History: Wegener's Granulomatosis


    Multiplanar imaging of the sinuses show opacification of the left maxillary sinus and left ethmoid. There appears to be thinning of the medial wall of the maxillary sinus. The frontal sinuses are clear. The oral pharynx and nasopharynx are normal. The nasal septum is midline. Wegener's granulomatosis cannot be excluded, but the changes most likely are due to sinusitis.


    Impression: Sinusitis predominantly involving the left maxillary and ethmoid sinuses. Minimal adjacent nasal turbinate edema is present.
    ------------------------------
    And just for the heck of it, my Dad's chest x-ray:


    History: Cough


    2 views of the chest are obtained. Visualized osseous structures are intact. The cardiac silhouette is upper normal size with atheromatous change if aorta. No airspace consolidation or airspace edema. No large pleural effusion. No pneumothorax.


    Conclusion:
    1. Atheromatous changes aorta.
    2. No airspace consolidation or airspace edema.
    ------------------------------

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    Quote Originally Posted by pberggren1 View Post
    Lindsey, your dad can make his own appointment at Cleveland Clinic with Dr. Langford. I would seriously go ahead and do that.
    My Dad's rheumatologist has his written consent for my Mom, sister, and me to be able to obtain all his medical records. I'm considering taking the liberty and having them faxed to Cleveland Clinic. He wouldn't mind, BUT getting him up there is another animal (I'm certain I could do it, however). Right now all he can think about is what's going on in his lung though.

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    I believe that is why he needs a very experienced Pulmonologist, one that is Interventional.
    Phil Berggren, dx 2003

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    Hi Lindsey, It's okay to be his daughter and not a nurse during this time. Don't be hard on yourself for forgetting things, we all do it. That's why many on here advocate keeping a list of questions that you take with you when you go to see your docs. I have lists for each doc I see. It works well.

    I'm guessing the the pulm doc was saying they would have to do a lobectomy IF if was malignant. The location of the tumor is a concern since a lot of lung cancers present in the upper lobes. I went through this scare myself since my last nodule is in my upper right lung. The spiculated borders are also a concern, but this can also be ground glass which can be indicative of WG's or an inflammatory process. There are a lot of parallels, unfortunately. The CT report DOESN'T indicate that the nodule could be malignant instead it says, "to be sure that this is not a malignant lesion." I keep going back to the positive ANCA and the pR3 which are the markers for WG's.

    The PET scan while not 100% accurate will hopefully get you going in the right direction. Does your Dad have it scheduled yet? I know this all so scary for all of you and my prayers are with you. Be gentle with yourself and know that we are here for you no matter what the diagnosis.
    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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    Quote Originally Posted by LindseyRN View Post
    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.
    Hi Lindsay, (watch out, I'm a total rambler, got you beat by a mile)

    I'm so sorry for what you're going through right now. I wish that on no one.

    I say that because we were in the same boat at my diagnosis. I was in the hospital after trying to find an answer for five months, and the ER doctor told me right out that I have cancer in my lungs that has metastasized from who knows where. My husband was a four hour drive away with my three year old daughter, and he told me that the only thing I can do is start 'making plans'. I also had nodules in my lungs, one lung actually - left lung, and they were substantially large. They did do a biopsy, and the team I had brought a pathologist in the room so that we know right there and then. (Weggies Unite: How it all started) I had Wegs, and funnily enough it was the best news in the world. I figured it was the Universe's way of giving me perspective. Ever since I've been grateful in a sick sort of way...

    Biopsy is the only conclusive way to tell you have WG.

    The other stuff is all 'circumstantial evidence'.

    Also the medical profession will do their darn-est to not diagnose WG, I think it's because the treatment sucks so much. I am willing to put down a wager that the TB they speak of with your dad has nothing to do with TB. Why they are so willing to go in the direction of TB when autoimmune hits 20% of the population, I have no idea. Well I do. Because the treatment for each is not only opposite, but also can negate the other.

    I think though that if your dad's doctor found WG in a biopsy, then that needs to be treated pronto. IF the pulminologist is right and there is a risk of cancer, then the treatment for the WG will not contradict the treatment for the other possibility. I'm willing to bet that the cancer scare is not cancer either. I've talked to so many people that are treated for the wrong thing by the medical profession who is a bit in the dark on this, all while avoiding treatment for the right thing... lungs, heart, neuropathy, sinus, and on and on.... if you've got WG and know it from a biopsy, I think the assumption should be that if the disease is not under control, anything else that is weird or out of the norm is directly related to the WG. I think this is a life saving strategy to live by. Also I don't trust anyone who uses the term "typically in WG ....." although all our stories sound similar in so many ways, each and everyone of them has something that is different from the others. There is no 'typical' in WG, so don't let that statement get you going. Trust your gut.

    Best of luck, and I think you go with the biopsy and demand treatment for your daddy. Sounds like you know what you're talking about when it comes to med-world. Even the best docs are in the dark when they have no experience with this disease. That's why it's so important to find a doc who has a good history with this, as it is just as much science as art when it comes to treatment and keeping on top of this elusive little problem child, Wegener's Granulomatosis. Most of the post diagnosis mortality with WG comes from either over treatment or under treatment, so finding the right doc is crucial to longevity.

    There are some great stories on my blog from other Weggies. Feel free to check them out so that you can see the full struggle and outcome of some of them. Weggies Unite: Other Weggie Stories

    Big hugs!

    marta
    Last edited by marta; 02-07-2014 at 02:32 PM.

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    Hi Cindy, I've been reading all the posts and I want to first welcome you to our "family".I am sorry with everything that is going on with your dad. I know how scared you all must be. This disease will hit you out of nowhere. I was glad to hear his mouth and sinuses seem to be getting better. I have involvement in my lungs, and at first first they that I had lung cancer also. They tried doing 2 needle biopsies but could not get enough to dxed. So I ended up having a partial right middle lobectomy which showed wg.At first I had several cm size nodules but with treatment they went away. I currently have 2 mm size but there was a time when I just had 1. So for them to say it is not wg because there is only 1 nodule is not true.Rituxan usually takes time to work but the pred is probably what help heal his gums and sinuses and given time it will probably clear or at least shrink that nodule. Even if you get a neg anca blood test back that does also not mean he doesn't have wg. I know you can't entirely rule out cancer but it looks more likely he has wg than anything else.I would give the meds a chance to work before you have such an invasive procedure like a lobectomy.I also go to the Cleveland Clinic and you get get in usually the same week. My thoughts and prayers are with you and your family and I am sure your Dad will start to heal soon. Keep us posted
    Life isn't about how you survive the storm, but how to dance in the rain !

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    You guys are so great and so supportive. I appreciate every single one of you! ^^^^

    My Dad went back to the pulmonologist this morning just to have his TB skin test read (negative). When he asked if they had scheduled his PET scan, they told him the scheduler was out of the office for the day and for him to check back on Monday. 72 hours is a long time for my impatient father to feel as if he isn't moving forward! I honestly don't see why a scheduler has to make his scan appointment. Could they not just fax the doctor's order to the imaging center so the imaging center can call my Dad to make the appointment? I used to be an outpatient CT nurse and that's how it worked. I don't get it.

    Monday I should be home from work midday and I plan to make a call to Cleveland Clinic. The only medical records I don't have full access to are from his ENT visits, because I didn't go with him to those appointments. I will have to talk to my sister to see if she put our names on his release of records paperwork when she went with him. (Yes, we have him spoiled. We fill out all the new patient paperwork for him and just tell him where to sign. Ha ha! He is perfectly capable of filling out the tedious forms himself, but he doesn't object when we take the clipboard!)

    My Dad said he's feeling pretty good today. He said he is not having as much sinus congestion today and when he does have to blow his nose, his mucus is much thinner. He has two more days on his antibiotic and still taking the light dose of prednisone 20 mg. He also mentioned he only had one brief headache today and did not have to take anything for it. I'm still hyper-concerned about his cough. It seems as if his coughing is fewer and farther between though, but he still does have it. Anyway, I'm glad he felt like doing something other than sitting around the house today. He is visiting friends who live near his and my Mom's lakehouse about 40 minutes away.

    As for me, I still feel like I could crumble every time I think about my Dad's lung nodule. What if...what if...what if. It has been consuming my thoughts which makes getting through the day pretty difficult. I sure hope this gets easier for both of us (my Mom and sister too).

    ((( BIG HUGS TO YOU ALL )))

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    Please keep us posted Lindsey. We are all here for you and your father.
    Phil Berggren, dx 2003

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