Unidentified Pain

[HopeinTN]

So, to preface, I’m on month 20 of CTX/Pred/Bactrim. I had a pretty bad UTI in April and another one last week, surely due to the immune suppression. However, for a few months I’ve noticed a sharp pain in my back that shoots to the front. It hasn’t been constant until now. Last week when I noticed it again, I couldn’t help but think, it must be a kidney stone that is high in the left kidney. It’s very painful with coughing, deep breaths and now movement. Let me also state that I have not injured myself in any way and not even too athletic at this point. I got in 9 holes of golf on Saturday but had to quit because it was too hot. I didn’t notice any pain while playing but it started again later in the day. Leads me to believe that it’s not a muscle.

Monday, the pain was getting so bad that I went to my PCP and had a chest x-ray (looked ok) and she thought it might be pleurisy but my oxygen was at 100%. I mentioned the recent infections and that I was thinking a stone but the pain was just too high on the left side (back that shoots to the chest). I have had stones and the pain is a radiating pain with them, but never this high, but always the left kidney. She checked my urine and it had lots of blood. Good deal, it has to be a stone. I head to the hospital clinic for a CT scan…no stone. However, the radiologist did mention that he saw a rather large abnormality on the bottom right lobe (they only got a small look at the lungs since it was a CT scan of the abdomen). This came as a shock since this pain is in the left chest area and not the right. The right lung is the most damaged by the Weg’s and I’ve had the middle lobe removed as well as part of the top. (BACK HISTORY)…At my last CT with my Weg’s doctor (Rheumatologist) the radiologist made a comment that the right, bottom lobe has a spot that previously measured at 6mm but now at 1cm. At the time I mentioned this to my doc and she said it was nothing to worry about but possible normal healing from the surgery (May 2011).

I called my pulmonologist and he is getting me in tomorrow. Any thoughts on what’s going on or what to expect. I’m guessing they will need a CT of my chest. Here are some symptoms:

Nausea, pain that shoots from the back to the front, pain when coughing and deep breaths, not a new pain but comes and goes, no injury involved, easily winded, pain started this time around the middle of last week and getting worse by day.

Thanks guys! Katrina

[drz]

Sorry to hear about your symptoms and hope they diagnose correctly and quickly so you get some help to feel better soon. Please let us know what they find and what you learn.

[Pete]

Hi Katrina,

I'll hazard a guess that after 20 months on ctx, it's catching up with you. You may have some sort of bladder issue or potentially hemorrhagic cystitis. Might be worth getting a nephrologist on the case.

Good luck,

[annekat]

I hope they get this figured out soon, Katrina, and you can get some relief. I'll be thinking of you.

[HopeinTN]

Thanks gang! Yep, I agree about the bladder issue and my urologist and I need to discuss it. I had a cystoscopy last October so she could get a good look at it and have something to compare to if the CTX starts causing problems. I've always had bladder/urinary tract issues from a birth defect, but have been doing great until recently.

Good news is that my EKG was fine so we ruled that out. At least with the lung I know what I'm dealing with. Just hoping it's not a new issue.

[Debbie C]

What did the dr. say about having all that blood in yr urine ?

[marylz]

Hope you find out what's going on and feel better very soon. The pain sounds awful!

[mishb]

My husband had that sort of pain on his left side going from the front through to his back and he also thought that he had a kidney stone or two, as he has had them before.
It turned out to be his gallbladder - very inflamed and full of stones.
My daughter also had stones in her gallbladder, but her pain was on the right hand side.
I don't think either of them had blood in their urine though.

I tend to agree with Pete in that it might be the CTX.


Whatever it is, I hope they can help you quickly and relieve you of some pain.

[Pete]

Hi Katrina,

As far as bladder issues are concerned, you need to see a urologist. Nephrologist will address kidney problems.

Good luck,

[drz]

One urologist told me that CTX meds can some times make your bladder inside look like raw hamburger but I was lucky not to have such reaction, just lots of bladder infections and low WBC while on it but it did help control the Wegs dog.

[HopeinTN]

I keep trying to excuse it as torn muscle but I'm not sure there are any muscled deep inside, and if so, I would think the pain would go around my side inside of straight thru. How am I kidding? Anyway, I met with my Pulmonologist and he's not so sure that the lesion on my right lung that is getting bigger, is normal healing from the surgery. He sent me down for a chest CT and hopefully I'll hear from him tomorrow about the right lesion and the left pain.

I also chatted with my Urologist about the blood in the urine along with 2 UTI's since April, and she will get back to me as well.

All in all, a productive day with my healthcare and getting my work done as well. Just wish the pain would stop!

Thanks all, Katrina

[HopeinTN]

So far, no one can figure out where the pain is coming from. Good news is that the left lung is fine, no stone, no obvious reason from labs... I couldn't take the pain anymore so I called my PCP yesterday and he called me in Tramadol for the pain. It didn't have relieve the pain at all. Finally by 5 last night I was in tears and couldn't take it anymore, so I went to the ER. They gave me morphine, and while it didn't completely relive the pain it helped a lot. She couldn't find an answer to the pain but thinking it could be reflux related? I'm not buying into this as the medicine she gave me for that did not help and she said it would help pretty quickly. This is not a burning pain but more like a stabbing sharp pain. Very similar to kidney stones but in my chest/should blade area. I have no clue what else this could be but I have a sneaky suspicion that it could be Shingles again. The ER doc says no way without a rash. Really, all she needed to do was Google it and she would see that yes, it possible. Why do they dismiss this so quickly? Anyway, I have a script for pain meds and so far it helps so that I can function.

Bad news is that my pulmonologist says that he's almost sure this lesion on my right lung that is slowly getting bigger is not normal healing due to the timeline of when it appeared. He is consulting with a surgeon to see if this could even be possible with the timeline. He also mentioned that it may be that we need to keep a very close eye on it and take a look inside again. Ha, ummm, nope. It would take a lot of convincing to get me to go thru that again.

I have to keep in mind that it could always be worse, and hopefully that will keep me from worrying.

Thanks!

[HopeinTN]

My pulmonologists said today that he thinks the pain is caused bycostochondritis. It’s inflammation in the cartilage that connects the ribs to the sternum. Yep, it’s painful. He wrote me a script for Naproxen to take twice daily. So far, no relief but I will stay optimistic for now!

I didn’t get to switch to Imuran or even go down on my dose of CTX yet…L

As far as the lesion on my right lung that has been getting bigger, I have been referred to a surgeon for possible another lung biopsy. The needle biopsy will not work so it would be another open lung biopsy. Not sure I’m going along with it but I will hear him out. I can’t imagine what they would need to biopsy since they know I have Weg’s. My treatment started in Oct 2011 and this lesion didn’t appear until March 2012, so they aren’t sure it would be healing from surgery, like from the chest tube. Since my surgery was the middle lobe (lobectomy) and the upper lobe (resection) they can’t match it up.

My question is, what could they be thinking it is? Is it worth another surgery?

Take care all!

[annekat]

Wow, another big word, the one that starts with b. I'm glad you have some answers and hope you start getting some relief. Sorry about the CTX... you have been on that stuff a darn long time! But that lesion on your lung is troubling, so I guess I understand their reluctance to take you off it just yet. I guess they want to see if the lesion is Wegs related or something else. Best of luck!

[HopeinTN]

Thanks Annekat! We could watch it, but why not just find out? If it's wegs, then CTX isn't working. However, everything else is stable.

[Debbie C]

I don't understand if the ctx isn't working after all this time and the lesion is getting bigger WHY are they not giving you something else besides wanting to do another biopsy. Do they think you have something else besides wg ? I had a partial middle lobectomy also cuz the 2 needle biopsys wouldn't work and I don't think I would go thru that surgery again,they would have to be VERY convincing why I should. I would demand to try something else before going under the knife and get of that damn ctx. And how did your pulmy come up with the b---------- dxed ??? These drs. kill me or I think they are trying to. Good luck,keep us posted and I hope the pain goes away

[HopeinTN]

LOL! I've spent a while trying to figure out what you ladies where meaning by the "b" word. It's actualy "caused by costochondritis". My bad. What is causing the pain is costochondritis.

Yes, I too have lots of questions for the surgeon,

[annekat]

LOL! I've spent a while trying to figure out what you ladies where meaning by the "b" word. It's actualy "caused by costochondritis". My bad. What is causing the pain is costochondritis.

Yes, I too have lots of questions for the surgeon, LOL. If I'd read it more carefully I might have figured out that you'd accidentally slurred two words together. But it's still a big, scary word! And the bad thing is the pain.

[Debbie C]

LOL! I've spent a while trying to figure out what you ladies where meaning by the "b" word. It's actualy "caused by costochondritis". My bad. What is causing the pain is costochondritis.

Yes, I too have lots of questions for the surgeon,

That's too funny ,I didn't notice that either so now it's the "c" word !!!!!

[drz]

They can tell you what they want to rule out by the biopsy. Have they or can they scope it or isn't that an option to see what it looks like close up? There are other things that can cause growths in the lungs and I suspect some of them are worse than Wegs so that may be what they want to determine. Keep us posted. We care!:hug2::hug1::sad:

[HopeinTN]

I'm still laughing about the "b" word. Yes, it's very painful to breathe deep, laugh, cough, sneeze, drive a car... Hopefully I'll get relief soon. I will start the Naproxrn tomorrow but for today it was Hydrocodone. It helped for sure.

Due to the location, the only way to get to it is open lung biopsy.

[mishb]

LOL! I've spent a while trying to figure out what you ladies where meaning by the "b" word. It's actualy "caused by costochondritis". My bad. What is causing the pain is costochondritis.

Yes, I too have lots of questions for the surgeon,


I knew it was the "C" word. I have had costochondritis a couple of times and my daughter has gone to the ER quite a few times with it.

Unbearable pain and not too mention what it's like to wear a bra - OMG

Plenty of pain killers, rest and heat packs.

I wonder if Sangye has a treatment for it.

I hope it goes away quickly.

[HopeinTN]

I'm sorry you and your daughter had to go thru it but happy you can relate. I was thinking it was something they made up to shut me up. It's crazy painful and not sure why the ER doc didn't even suggest it.

[chrisTIn@]

I'm very sorry you have to go through all this pain. Hope you 'll soon feel a relief! I can relate to almost unbearable pain in the region you describe. In my case they found 'calcification in costosternal first ventral rib-attatchment' and eventually it hurt like hell! :crying: the pain has now diminished quite a bit, and I can sleep again. According to the specialists I consulted, there is no direct relation to Wegs/GPA, but I still wonder... Get better soon, and keep us posted!

[HopeinTN]

Thanks Guys! I still have the pain and will run it by by my doc tomorrow. I'm metting with a surgeon at the request of my docs to talk about a lesion on my rt lung that has been getting bigger. I'll here him out and pray for the best. I
ll update ya'll soon.

Take care.

[annekat]

I hope it goes well tomorrow, Katrina, and I hope and pray you get some answers about what's going on, what needs to be done, and can look forward to an end to the pain!

[Alysia]

Good luck katrina. My praying is with you.

[Debbie C]

Good luck with the drs., Katrina. Hope they can get you off the ctx soon and not have to do surgery. Why don't you suggest they try something else before cutting you open again. Hope the "c" thing gets better also !!!!

[HopeinTN]

The appointment went well with the surgeon. He agreed that it's not healing from the surgery due to timing and the location. It a nodule that is 2.9 cm wide and 1.3 cm deep and is located in the pluera o fthe right lung. It would be just under the shoulder blade on my back. It's slightly bigger now than it was in March 2013. It was first noticed in March 2012. He says that due to the location a needle biopsy will not work and the only thing that we can do is an open lung biopsy.

He mentioned that it could be fluid, air...and when I asked what else, he said let's not think about that now. Fine by me. The radiologist did note that it's soft tissue so I'm scrathcing my head about it being fluid or air. Oh well, I will try not to think about it and just breath deep while I can.

They determined it wasn't cancer before dx so slim chance of that now. I guess if it's disease activity, why is the CTX not working after 21 months? The tricky part is that I've never had Weg's symptons, only pain in chest since I had nodules in the pluera space as well as lung tissue.

Anyway...I hope everyone had a great weekend!

[Pete]

I guess the next questions include are you having the biopsy and when?

Good luck whichever path you take. (When you get to a fork in the road, take it! -- Yogi Berra, famous American baseball player)

[HopeinTN]

If the CT shows that it is getting bigger in 3 months, then yes, a biopsy. Not excited about it but at least this time it shouldn't end up in a lobectomy.

[Debbie C]

Well Katrina you are still kinda where you were before you went and saw the docs. They aren't willing to take you off of ctx and try something else ? That may just be a nodule that is getting bigger. And what does the timing have to do with the fact that you are not healing. I had a partial right middle lobectomy in July 2010 and it healed ....I'm confused ??? Hope they don't have to do an open lung surgery especially if it is only air !! Keep us posted also hope you are feeling better from that "c" thing you had going on !

[HopeinTN]

I'm trying really hard to get them to take me off the CTX and I was going to 6/25 but this came up when I went to mu pulmonologist for the pain from the Costochondritis. While my rheumy said it was normal healing, this doc disagreed and now so has the surgeon. By timing they mean it would have shown up closer to my surgery date if it were healing (scar tissue). Surgery was May 2011 and it popped up in March 2012.

I'm guessing that if it continues to get bigger, it wouldn't be air or fluid, but what do I know.

Hope that make more sense. I'm not sure It does, or I can make sense of it all.

[Debbie C]

My quess is that it is another nodule in your lung....but what do I know...hoping the best for you:hug2:

[Alysia]

Hi Katrina.
I agree with Debra. I dont see any good in waiting more 3 months without changing anything. it is possible that CTX is not "doing his job" and it is time to try something else, maybe RTX, and then wait and see what is going on. maybe you should consult with more docs ? (second and third opinion).
take care and dont let them "neglect" it anymore.

[annekat]

If it is a Wegs nodule, it is hard to understand why CTX is not helping it. It worked so well to clear up my lung issues. But then I never had anything they called a nodule, just widespread smaller lesions. I sure hope they get to the bottom of it soon and we all get to find out what the conclusions were. I agree you've been on CTX too long and three months seems like a long time to wait for the biopsy if you are going to have one. I hope you are getting something that helps your pain.

[HopeinTN]

I agree with ya'll but I also have the mind set that not much can change in 3 months. Right? I mean, I have no symptons and I didn't in the begining other than massive pain in the area of my middle right lung. The recent pain I'm having is not weg's related and is in the left chest area.

Good news is that the naproxen is working and I have not noticed a pain from the Costochondritis in a couple of days.

[annekat]

Katrina, you know your body and what is going on with it a lot better than we do. No, 3 months is not that long, and your judgement in going along with the docs makes sense. I'm glad you are WG symptom free, and that the pain from the "c" word is being helped with naproxen.

[HopeinTN]

Thanks! Yep, that crazy word! Cracks me up.

I can worry until the cows come home but it won't do me or anyone around me any good. I do realize they have been watching it since March 2012 and it has doubled in size, but will 3 more months hurt? That's just what I need to say to make it sound better I guess.

Yes, like I said many moons ago, I sometimes felt guilty that I didn't have any of the symptoms, but because I don't it's made a lot of oher stuff, such as this, difficult.

I can hold out 3 months...I think I can, I think I can...

[Debbie C]

As long as his office plants aren't dying you should be o.k.!!!! But I would watch for any signs that might be different. 3 months may not be long time than again it may be ( don't want to scare you ) My dr doesn't want to see me until Oct. and than he doesn't want a scan done before I go up there,he said he'll see once I'm there.I'd rather have the news before I go up not after than have to go all the way back up there. Keeping my fingers crossed everything will be fine and it will shrink on its own,I'm glad your not feeling the pain you were before.......Take care.

[HopeinTN]

LOL! Very true. I will definately keep a close eye on it and after awhile you get schooled on what is worth mentioning and what is not.

Good luck to you too Debra. That sounds off too. Hurry up and Wait!

[HopeinTN]

Ok, so maybe the "not going to worry" attitude is wearing off. I think I'm kind of worrying and 3 months sounds like 3 years. The radiologist notes this place as pleura-based or extrapleural nodule and another calls it a pleural-based lesion. Call me crazy but this doesn't sound like fluid or air. Can't they see the difference in fluid, air or a nodule in the CT?

Has anyone out there with Weg lungs, had a lobectomy, started treatment and had this happen?

"There's no place like home...there's no place like home..."

Thanks all!

[HopeinTN]

Checking in to see if anyone knows if they can tell the difference between fluid or air on a CT scan? I have an email in to my Doc but thought I'd start here. I see they (radiologist) have called it different things on the CT over the last year (lesion, nodule, soft tissue).

I said I wouldn't worry about it, but can't stop thinking about it and what it might be.

[pberggren1]

Where is it located?

[mishb]

Katrina, you can't continue with this doing your head in. :sad:

Just get back to them now, tell them you want it looked at - put yourself out of the stress and wonder.

I don't know how you are still managing, you poor thing :hug2:

[HopeinTN]

I don't know how I managing but I've always been strong and positive so I guess that helps. It's located in the right lung and it's a pleural or extrapleural based nodule. It also says, it's a soft tissue density located between the 5th and 6th ribs posterolaterally. The size has changed from 6mm in length in October 2012 (start of treatment) to 1 cm in March 2013, and now at 2.9 cm in length and 1.3 cm in depth as of June 2013.

The rheumatologist had been telling me it was normal healing...until now.

Thanks guys and I credit this group with keeping me sane most of the time.

[drz]

Hope you get some answers soon and get it addressed if some thing is needed. In the mean time denial and positive attitude about it is sounds like a good thing to keep you sane. If it turns out to be a problem you will be able to deal with what ever is needed at that time. It is nerve racking when doctors don't know or agree as to what is going on. I think I just might make a trip to Mayo or Cleveland to try get a more definitive answer as to what is going on and what is needed if anything to address it just to try get some answers and resolve the issue. Your quotes though seem to suggest some sort of scar tissue which would seem logical as some thing would need to fill in the space for what section of lung was removed.

I will get an X-ray at Mayo Friday and ask them about what my chest x-ray looks like as I should have some scar tissues from past bleeding in the lungs when I was coughing up cups of blood three years ago. My internist heard some crackling at last checkup but my endo didn't hear anything on Monday so I wonder how variable the crackling noise in lungs tend to be and what it means.

[HopeinTN]

DRZ- Thanks for the info. It is nerve racking but in the big picture, I can surely wait and see what they have to say. I do trust my docs and I did see Dr. Seo at Hopkins at the beginning of the year but while he had the CT notes, he didn’t have my films. I may check back in with him.

It would be normal to have scar tissue, but this didn’t even show on the CT until almost a year after surgery and 5 months after start of treatment. It can be a variety of things possible from the surgery I assume but it’s scary. I think it’s now bigger than any of my other nodules ever were.

I am eager to get off the CTX if this is no disease related, and I want to know it’s not cancer (unlikely). The only reason I even think about it is that the skin cancer I had (DFSP) has been known to come back and in the lung. That and my Granny on my Mom’s side had lung cancer.

All I can do is hurry up and wait. Oh, and be thankful I have ya’ll on this forum!

[Alysia]

Hi Katrina,
my praying is with you. you are so strong. hold out.

[HopeinTN]

Has anyone else out there had a similar situation in that nodules popped up and got bigger while on treatment or after surgery. If thsi is surgery related, although it doesn't make sense to me since it starting showing up alomost a year after the surgery, what could it be?

Thoughts? I tried using google, but th eonly that comes up is lung cancer info and that's not really wahat I'm asking (something that would show up on a CT that could be surgery related).

Thanks again!

[HopeinTN]

I made it thru waiting 3 more months for the follow-up CT. Unfortunately, the area they are watching has indeed continued growing. I had a PET scan today to make sure nothing else is going on and I will get the results tomorrow when I meet with the surgeon. He is recommending we go ahead and schedule another open lung biopsy. He’s not comfortable with the growth rate over the last 15 months. Keep in mind, I’m still on CTX, and on month 24.

I’ll have more news tomorrow.

Take care All!

[annekat]

I'd been wondering how you were doing, Katrina. Sorry to hear that thing is still growing and that they think you need a lung biopsy. That is such a long time to be on CTX... I hope what they find will shed some light on whether that is still justified. I'll be looking forward to hearing what more you find out.

[Alysia]

Hi Katina,
I am sorry to hear about the growing of that area. I hope your docs can handle it asap. good luck tomorow !

[Debbie C]

Katrina, I have been wondering where you have been. This is just ridiculous that you have been on CTX for 2 years and things are getting worse. Are you able to go to another dr or even up to the Cleveland Clinic for another opinion on your meds ? Good luck tomorrow,I hope you don't have to have another biopsy ( had one too and it's no picnic ):hug2:

[HopeinTN]

Hey gang! The place that is getting bigger lit up on the PET Scan along with lymph nodes in my chest. The surgeon for sure what’s to go in an get a look. Apparently inflammation or infection lights up and not just cancer. He’s not worried about cancer but we need to know what’s going on.

The surgery is 10/29. He will first remove the lymph nodes in my chest with a small cut at the top of my chest and if they do not show any signs of cancer he will go into my lung thru the same scar. It will be first with the camera and if scar tissue doesn’t allow that to work properly, the a small cut. This all sounds familiar, but I hoping the difference this time is I keep the remaining lung I have.

I did see Dr. SEO at Johns Hopkins back in February and he said he thought I could stop the meds but talked with my docs and they decided to stay on the treatment plan. I was set to get off the meds about 8-10 months ago but the spot on the right lung started showing up and has since, more than doubled.

I can’t help but think that it’s disease activity and time for another plan.

Thanks all!

[Debbie C]

Katrina, I'm so sorry to hear you have to go thru that. Does Dr. Seo know whats happening now? I am just so surprised that they have not done anything different with you in so long and now this. If inflamation lights up has your sed. rate gone up ? Maybe there is no infection just inflamation. How much of your lung did they take the first time. When I had mine done , it was a partial right middle lobectomy. Hopefully they can go into the same spot. And thank God its not cancer. I will keep you in my prayers and hope by removing everything ...the lymph nodes and the nodule things will start getting better.:hug2:

[HopeinTN]

I haven't followed up with Dr. Seo and may consider doing that. The first surgery was a rt middle lobectomy and partial upper and yes, he can go in the thru the scar. My SED and CRP have been elevated but I've been told that could be many different things causing that.

Thanks Debra.

[drz]

I made it thru waiting 3 more months for the follow-up CT. Unfortunately, the area they are watching has indeed continued growing. I had a PET scan today to make sure nothing else is going on and I will get the results tomorrow when I meet with the surgeon. He is recommending we go ahead and schedule another open lung biopsy. He’s not comfortable with the growth rate over the last 15 months. Keep in mind, I’m still on CTX, and on month 24.

I’ll have more news tomorrow.

Take care All!

Thanks for the update. Keep us posted.

[HopeinTN]

Will do. Thanks all for the well wishes. The surgery is Tuesday and I should be home by Friday or Saturday at the latest.

[annekat]

Best wishes for the best possible outcome, Katrina!

[drz]

Hope you get results quickly and some good news about it!

[Alysia]

good luck Katrina in the surgery. I am sending you my praying :hug2:

[mishb]

Good luck Katrina,
I hope it all goes well and you have a pain free recovery

[HopeinTN]

Thanks all! I'm sure it will be fine. I'll post again once I'm back from the hospital and they say more ike 3-5 days.

[HopeinTN]

I had the surgery on Tuesday and came home Saturday night. Still waiting on the pathology report from the lymph nodes and golf ball size mass. The mass had attached itself to 3 ribs so they had to cut all 3 ribs and re-construct them. PAINFUL!

I’ll update soon but in too much pain to do so now. Thanks all!

[annekat]

Wow. That's a lot to go through. Thanks for the update, I hope the pain starts to diminish soon, and here's wishing for the best possible results from the tests. Good you got rid of that thing, in any case, I guess...

[Debbie C]

OH MY GOSH !!!!!! I know you must be in pain:sad: I hope the report comes back good and a least you got rid of that mass you had. Now maybe they will get you off of ctx and give you something else. My prayers are with you that you start to feel better soon and the test come back good. Get some rest :hug2:

[Alysia]

Hi Katrina,
thanks God you are safe home and after all. It sound SO tough. I hope that from now on things will only get better. I am sending you my praying and gentle hug :hug1:

[Rose]

Hi Katrina

I have just read through this thread from the beginning....what a terrible 4 months you have had to endure both physically and psychologically. Soon you will have some relief as I think the not knowing is sometimes worse. I wish you the best possible outcome for the biopsies. At least that is now over and like Alysia, I hope things will only get better from now on.

Rose

[HopeinTN]

Great news, No Malignancy! The lymph nodes contained Granulomas (this is part of the Wegener’s) and shows that my disease may be active. I will meet with my Rheumatologist 11/22 to determine next steps on this. The thoracic surgeon is confident that the entire mass was removed completely, along with the surrounding tissue and bone from 3 ribs (which have been re-sectioned with some kind of mesh), but we will discuss more at my next appointment. By far the most pain I have endured.

As far as the tumor that was aggressively growing in the pleura space and on to my ribs, it is not malignant but it is, get this, another rare tumor called a Desmoid Tumor which is also called Aggressive Fibromatosis. I have not yet researched this but was told they are typically not Malignant but in some cases, damage can be done to nearby structures causing organ dysfunction. The treatment for these tumors would be to watch it’s growth rate and surgical removal which is sometimes followed by radiation and chemotherapy. A lot of this I will discuss on my 11/22 appointment. Great news is that thw rumor was removed, and my lung was left untouched!

Honestly, I’m still not clear on most of this but will have much more info after we meet with the surgical team again at the end of the month. My surgeon is very good and also very excited to run my case by a team of others to discuss and has made me an appointment with an oncologist (this is hard to understand).

Forgive me if this is scattered but I have been staying out of it and drugged up as this pain is nothing I’ve ever experienced before.

Notes from the surgery:

• Surgery started at 11:00 am lasted 5 1/2 hours instead of 3 as originally planned
• The Docs removed a golf ball size mass from the right pleura space. The mass was attached to 3 ribs and had to remove this area of all 3 ribs.
• They were forced to make 2 incision points instead of just 1.
• First incision point through throat to get to the Lymph nodes, Second incision point in the posterior distal region of the back to get to the lung/rib area since they could not get to it from the first.
• Entire mass was removed.
• Recovery time and pain may be a bit longer/more strenuous due to losing portions of 3 rib bones and 2 incisions, affecting both muscles and tissues on both sides of the body that are used even in simple breathing.
• Stayed at Vandy for 5 days.

Thanks for the well wishes and I will have more on to report at the end of the month on My Wegener's status from the pulmonologist and Rheumatologist as well as the status of this Desmoid Tumor/Aggressive Fibromatosis from the Oncologist. Hopefully by them the pain will diminish and I will be getting up and about.

[drz]

Thanks for update on what happened. It sounds like a real ordeal for you so I hope recovery goes well for you and that whatever treatment you get is successful.

[vdub]

I had 3 lymphs taken out about 5 months pre-dx wegs. Doc said it was the strangest nodes he had ever seen. I doubt they were checked for granulomas.

[Rose]

That certainly is great news. Having that off your mind I am sure is going to help with a speedier recovery from the surgery. Can only get better from now on.

Rose

[annekat]

Katrina, what great news that there is no cancer, that you got the offending mass out, and that your lungs were not affected! So sorry to hear about the pain, and I hope that will subside soon. I had a rare, non-cancerous tumor in my breast once which was removed. Much easier procedure, no comparison, except that I wonder if Weggies, or future ones, are prone to other rare and weird things happening medically. I know I've read at least a couple people on here say they always get the weirdest things. In any case, best wishes to you, and I'm looking forward to the next update.

[Spud]

Hi Katrina, i do feel for you, pain is a curse. One mistake i made in the beginning was that i blamed Wegeners for everything that went wrong. Just a thought, i sincerely hope it gets sorted soon. Good luck and do take care. Brett

[mishb]

Ouch, ouch, ouch. :crying:

Gosh, I hope you are pain free soon. I'm so sorry that you had to go through so much of it, however, excellent news that it isn't a malignant mass and that they managed to get it all

Get lots of rest ......... and the bubble wrap and cotton wool, is on it's way

Very gentle hugs to you :hug1:

[Debbie C]

Katrina,that is great news:hug3:. Did they say that it may return again and do have to take other meds since it is another rare disease? Hope the healing is fast for you and they can get a good treatment plan under way. Let us know what happens on your next appt.

[Alysia]

Hi Katrina.
thanks God for the news. it seems that you have a good team of docs.
I must say that you are a very brave girl. I admire your ability to endure the waiting period and then the surgery and all the rest.
I hope that from now on things will only get better.
take care :hug1:

[HopeinTN]

First off, I got engaged over the weekend! No date set, but we dated, broke up and dated again for 6 years, so no plans to rush it now.

I also had a great update from my docs recently. I have now stopped taking the Cytoxan for Wegener’s and will get to lower the Prednisone dose by 1 mg every month. He said he considers it in Remission since this latest incident did not involve Wegs. YIPPEE!

Also, no radiation or further treatment for the Desmoid tumor that was removed. While it wasn’t malignant, it’s treated as if it were due to aggressive growth rates, typical proximity to vital organs and the high probability of it coming back. For that, I will have a CT every 3-4 months. While this stuff is a nuisance, it could be worse and I’m still above ground.

Thanks again to everyone for all the love and prayers.

Merry Christmas to all and be safe traveling!

[Debbie C]

Congratulations on everything,Katrina.Glad you are finally off ctx. and in remission.Let us know when the wedding is,I've always wanted to come to Nashville !!
Merry Christmas and have a Happy,Healthy New Year !

[annekat]

What Debra said..... same congrats from me! Wishing you the best in life from now on! :thumbup:

[mishb]

Congratulations Katrina, :hug3:

What a wonderful early Christmas present - on all counts.

I will be heading down your way in April 2015 - I think that sounds like a fantastic date for a wedding ......just saying :flapper: