Dazy

Hi Max! I've been wondering about you...I even popped in yesterday just to check. Sorry to hear the VF test was just another big question mark...darned test seems to provide those type of ("non" ) results quite frequently. I guess the only time the results are conclusive are if you get a positive...??? I'm still not convinced (completely, anyway ) that it is not what has affected me. Until proven (through biopsy) to be otherwise, I figure it is still "in the hunt", so to speak (though my docs kinda roll their eyes at me when I suggest this, now that I have tested neg. so many times. ) I AM glad that your doctor is taking a pro-active approach. At least you will have some answers, and can move forward with whatEVER may come (Here's hoping for an easily remedied VF, afterall. ) I will be thinking of you, and Inez, and keeping you my prayers!! Yours in HOPE!! Stacey

Yay, Pam!!!! Here's to MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY, MANY......(you get the picture )....MORE!!!! Yours in HOPE! (and AZ Sunshine! ) Stacey

Osiyo, Cherokeedeer! I wanted to extend my welcome and BEST wishes, as well!! I will keep you, and Joe in my prayers. Do you live near Talequah? I have family all around your neck 'o'the woods. I can only echo what has been said here: Your attitude is awesome, and will serve you both well in this battle. Healing hugs for you ((Celie & Joe)) Yours in HOPE!!! Stacey

I'm SO sorry... May your hearts be comforted at this difficult time. ~ Stacey

Good Morning Max! I'm on my way for scans this a.m. but I HAD to check in on you! Sounds funny to hope for VF but here's hoping!! Your pulmonologist sounds like a gem! So many of these docs just seem to have no time for questions. I may PM you for her name, although I am in East Mesa, I am ALWAYS open to options! How large is that nodule? My largest is 1.1cm and I could not get anyone to biopsy it. Thankfully, it has not changed much over the years, but I've grown several new ones. I would love to have more definitive answers as to what exactly this is, although like Don mentioned, even biopsies aren't always conclusive...( I recently underwent both bone marrow and lymph node biopsies - both non-diagnostic ) I still think VF is a possibility in my case, although I've tested negative many times, and the docs kinda roll their eyes, now, when I mention it. BTW - Barb, Valley Fever, also known as Coccidioidomycosis , is a nasy fungus present in the soil of the desert southwest. It is endemic in AZ, and also found in many parts of So. Cal. as well as Texas, New Mexico, and South America. We Zonies tend to be exposed during our summer dust storms, as well as during ANY activity that kicks up dust. Most never even develop symptoms but in a small percentage, pneumonia develops, often followed by nasty, cavitating nodules. It is managed (there is currently no "cure") by anti-fungals, or surgery in some cases. They can perform blood tests, but my research has shown that (negative) blood tests are often inaccurate. NOT a fun disease and occasionally deadly, as well, but DEFINITELY a better alternative than LC. The Valley Fever Center for Excellence in Tucson has alot of info. I'd post more but I'm gonna be late for my scans if I don't get my booty movin' Wish me luck, huh? My prayers for an easy diagnosis and CURE!!! Please keep us "posted" Your fellow Zonie, in HOPE!! Stacey

Hi Max! I haven't visited the site for awhile, so I hadn't seen your post. Curious...did they test for Valley Fever yet? VF nodules can also exhibit uptake on PET. At any rate, I hope you will get some definitive answers on the 16th. I don't know if your insurance will cover it, but Mayo in Scotsdale is an EXCELLENT facility. Dr. Viggiano is a superb pulmonologist, and they have a reputation for getting things done quickly and efficiently. I started there, but my insurance would not cover them, as they were out of network I am due for my next scan this month, and I am planning to have it done there, as I am tired of all the "tail-chasing" these other docs seem to be doing... U of A (Tucson) also has an excellent Valley Fever program (as does Mayo) If it should be discovered to be VF, there is a Dr. Gagliano (?sp) who heads a nationwide research program based there. The waiting is truly awful, but with this wonderful "autumn" weather we are having, it's hard to be too down, huh? Seriously, hang in there! We "Zonies" are a tough breed, ya know? You will kick booty whatEVER it may be!! I will be hoping and praying for the VERY BEST outcome!!! Your fellow "Zonie" - in HOPE!!! Stacey

Hello from another ~ AZgirl!! Just wanted to extend my welcome, and let you know your family will be in my prayers! I hope your Mom's chemo goes well today, and that she'll enjoy many more NED years to come! Not too many of us "Zonies" on the board...please don't hesitate to ask if I can be of any help to you...Hang in there! Yours in HOPE!! Stacey

Hello! Just wanted to extend a welcome to you - and prayers for healing to your family! I don't have much firsthand knowledge of Essiac Tea, but I found some info. from the American Cancer Society's website: http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Essiac_Tea.asp?sitearea=ETO I have heard of "Chaparal Tea" (Made from "Chaparal", aka Creosote, here in the Southwest) having similar anti-cancer properties, as well. Personally, I believe in "integrated" medicine...a blend of the natural, and when/if that doesn't work, the traditional medical modalities...as long as one does not interfere with the other. My BEST wishes to you & your family! Your father is lucky to have such a devoted daughter, and advocate on his team!! Yours in HOPE!! Stacey

Hi Nyka! You have great wisdom - there is inherent balance in ALL things - whether one can identify it at the time, or not, the balance exists. For every GOOD, a BAD...and vice-versa. It is simply part of the whole "cosmic" balance of the universe. Or so I have been taught... The power is in our perception of it all, and what we choose to FOCUS on. Your focus IS POSITIVE!!! Your great strength will do much to carry you, and your dear Hubby, thru the bad times, 'til you can GET BACK to the GOOD!!! (I hope that makes sense... ) I "heard" COBRA mentioned in this thread. Have you looked into that option for keeping insurance? NOT cheap, but MUCH less expensive than going without. Sending MANY hugs, and prayers your way for continued strength, and healing!!! Yours in HOPE!! Stacey P.S. A belated HAPPY Birthday to your Hubby!!! From one August baby to another...

Hello Connie! I just wanted to add my welcome, too. I'm also sending prayers for healing from way out West. May the rads kick the #$@* out of the LC and soon have you hanging out with NED!! BTW - Love the screen name. I'm a Creek Girl, too. (Actually, I'm Creek/Cherokee, and a couple other things thrown in... ) Yours in HOPE!!! Stacey

Uh, oh - Kasey & Fred are minding the Pub??? Oh - we are in trouble!! Well, this round is for Cindi - I miss her so, but I am SO glad she is well. No one can serpentine like Cindi... Hope to "see" ya soon, buddy!! I'll have a bucket of well-chilled Corona's. I'm counting on Reece joining me for a couple, just so he can see what the Pub is all about. Whatd'ya say, Reece? Here's to HOPE!!! Health, and NED!!!

Oh Teri - I have avoided the site for a couple of months, and just read this... I am SO sorry!!! Bill's infectious, good-humor will certainly be missed - I am just so saddened to read this. Please accept my heartfelt condolences, and wishes for comfort during this difficult time... I will keep you in my prayers. And next time I am in Sedona, I will find a special promontory to sit upon, and will burn some sage and bury a crystal there in Bill's memory. Hugs for you, Teri. You have been a wonderful, caring wife & partner. May you find peace, and solace in the memories of the wonderful adventures you've shared together. Bill knew the secrets of the spirit, and as such, his will be with you always, 'til you meet again... With Hugs & Sympathy, Stacey

Randy is right - a chest xray would be a good place to start... However, not ALL nodules/tumors show on an xray. And there is no blood test for LC - but, if he has an enlarged node, they may be able to find a reason for that - abnormal white cell counts, etc. that may help them pinpoint whether it is infection, or something else going on... Painful, enlarged lymph nodes are usually infection, whereas painless, enlarging nodes are often malignant. None of this helps if he won't go to the doc, though... Personally, I think it is selfish of someone to refuse such a thing, when they have loved ones who are concerned, and worried. I hope he will reconsider for YOUR sake, if not his own... Wishing you good results, and lots of stength and luck!!! Yours in HOPE!! Stacey

Tracy, I am so sorry to hear of your struggles. I haven't been around for awhile and thought I'd check on you. I'm just bummed the news isn't better ALL the way around. I SO get what you are talking about. My hubby left me AGAIN in April, and just does not seem to grasp the gravity of the situation. Sometimes I get frustrated as well, when someone doesn't seem to understand how SCARY THIS IS, and it is no fairytale - not everyone gets their happy ending... Positive thinking is good, but sometimes you just need an acknowledgment that it BITES!! That said...I AM sending ALL of my BEST thoughts and prayers to you, Tracy. Hang in there!!! Thank Heavens you have your dear Aunt Kasey on your team!!! HUGS!! Yours in HOPE!! Stacey

Hi Mary! I'm with you...I'd WAY rather be whale watching!! Sorry you find yourself here - but now that you are, please know you now have a support network of MANY!! We'll do what we can to help alleviate the fears. I'd write more, but my 'puter is giving me trouble...I'm ready to re-format it with my Remi... ...if you get my drift... Good luck next week!! Yours in HOPE!! (& Watch!) Stacey

Thinking of you, Tracy. I am sending HUGS and prayers for good results! Yours in HOPE!! Stacey

I'm a "nodule watcher" myself. Yup...it can be a bit scary in the beginning, and establishing effective communication with a doc you are comfortable with can be one of the most frustrating, although important, steps you take. It sounds like a reasonable approach, 'tho I, like Kasey, think a 3 month follow-up IF your PET is negative is in order. PET/CT would be useless for your smaller nodules, but it could detect uptake in the larger nodule. And even if PET did show uptake, it very well COULD be from histo. It is pretty standard to do a biopsy if PET lights up - but even then, it could be things other than cancer (histoplasmosis, coccidioidomycosis, TB, infection, inflammation, and more...) I'll be praying for a good outcome! In the meantime, pull up a chair, hang out awhile, and let us help you deal with "scaries" when they hit. Your gonna be fine! (put down those smokes, though, okay?? ) Yours in HOPE! (& Watch) Stacey

Hi Betts ~ I'm so sorry you find yourself here, but if you must walk this path, these are a great bunch to hold your hand!! I just wanted to welcome you, and wish you, and your Dad ALL the best! As you have seen here, there is HOPE!!!! Even in the face of some pretty grim stats - this place is FULL of survivors! I just know in time you will see that your Dad will be among those SURVIVORS!!! He has reasonably good health, and a stellar daughter on his side...how can he lose? I will be sending up all the prayers and positive thoughts I can muster, on his behalf! And some healing hugs for good measure! Hang in there & keep the faith!! Yours in HOPE!! Stacey

Hi 2weimies! Ya know...I'm not positive, but I think they usually do a CT immediately prior to, (and/or during...?) any biopsy procedure - for localization of the nodules. Not sure, but someone here can probably shed some light on that. Or, maybe you could ask your doc on Sat. PET can light up for other reasons, too. I've read of others who have undergone biopsy of an "active" nodule - and been pleasantly surprised after surgery, to discover it was benign! I continue to hope & pray that is the case with you. We can ALWAYS hope for a "houdini" nodule, too, huh? Can't hurt to hope! Hugs & BEST of luck at your appointment! Yours in HOPE! Stacey

Good Morning, and welcome to "Nodule Watch"... Yes, it is scary, but we'll help you get thru it. I'm on watch, too, as you'll see in my profile. First of all - deep breath. Okay, better? LOTS of nodules are from causes OTHER than cancer. In fact, current studies from Mayo show that as many as 97% of nodules SMALLER than 1cm are benign!! They can result from infections, (like what you experienced last year) inflammation, scarring, and even auto-immune disorders. Has your doc mentioned the size? Presence of calcification, or edge/shape characteristics? (I guess not...when I re-read your post, I see you are still awaiting results... Sorry...) Many of these factors will help your docs determine what this is. One thing nodules are is a wake-up call, huh? After MANY failed attempts at quitting smoking (I started at 12, and smoked 1 - 1 1/2 packs 'til I was 39.. ) my nodules freaked me out enough to finally quit. When is your follow-up? The waiting makes me truly crazy - you may want to call your doctor's office, or the radiology canter where you had your scan and ask if you can pick up the report. Then, at least you'll know somewhat where things stand. I will be praying that the li'l booger just disappeared - POOF!! It does happen - people go in for a follow-up CT, and voila! Nodule is GONE!! Or, shrinking. Sending LOTS of positive thoughts for good results. Hang in there. You'll be fine! And if you need nodule info...let me know. I have TONS!! Yours in HOPE!! (& Watch) Stacey

Hi Katie ~ I am so sorry for your loss. It is so unfair how quickly LC can change EVERYthing. I know your Mom must be proud of your family's efforts to fight back, and affect a change for those who will battle in the future. I was so moved to read your family's story, that I (and the rest of the "team" ) will be satellite hiking here in AZ, as well. I would be honored to carry a stone with your dear Mom's name on it to the top of Superstition Mtn. if that would be okay...? PM me, and we'll "chat". Sending LOTS of comforting (((HUGS))) and the very BEST of wishes to you, and your brother, in your endeavors!! Yours in HOPE!!! Stacey

Stormwatch ~ I don't have any answers, but I have PLENTY of prayers, and positive thoughts to send your way. Hang in there! Yours in HOPE!! Stacey

I think pre-op testing before a consult is maybe rushing it a little - or maybe the doctor wants a more complete picture of your health prior to making his recommendation at the time of consult...?? As far as PFT's go - that is simply pulmonary function testing. It's easy...you sit in a booth, usually, while they have you breathe, blow etc. and take measurements. Sometimes they will have you inhale an irritant (methacholine, for example, for those with asthma) then they'll usually have you do the same breathing exercises after taking a bronchodilator - albuterol, for example. Really, they just measure your lung volumes, and ability to exchange oxy in the lungs. PFT's are painless, and probably a good idea to have prior to your consultation - they really can't even determine whether you are a surgical candidate, or not, without them. I think surrounding yourself with loving, positive people, and bringing 'em along, as well, is a great idea! And we will do all we can on this end to help chase the mindfreaks away! This is a scary path but YOU CAN DO IT!!!! Sending comforting (((HUGS))) & prayers!! Yours in HOPE!! Stacey

Yup...that is what VATS (Video Assisted Thoracic Surgery) is - a biopsy and resection technique, much like the endoscopic surgeries performed for so many other conditions. MUCH smaller insicions, and quicker recovery. I'm guessing that with the peripheral location of your nodule, they are unable to biopsy it via bronchoscopy. Have they mentioned doing a CT guided needle biopsy, first? Seems that might also be a reasonable idea. Your Sis is right...try not to panic. (Easier said than done, huh? ) It must be really hard -especially when you've just barely recovered from the PE. I'll keep you in my prayers. Hopefully, you will soon have some answers. Yours in HOPE! Stacey

DEEP BREATH...in - one, two, three, four...out - one, two, three, four...I hope that feels a little better. NO ONE CAN PERFORM SURGERY WITHOUT YOUR CONSENT!!! That said...even if you need a VATS resection (and again, I would, if I could!) I think you do, indeed, need to find a doc you are comfortable with, ASAP!! Maybe you could check some of the other cancer centers in your area... You may also contact Mayo Clinic. They are usually willing to at least review your scans, reports, etc. and render an opinion based upon same. I will check for other resources, but you may want to visit the Bloch Foundation at: http://www.blochcancer.org/main.asp Keep breathing...you WILL get thru this!! Yours in HOPE!! Stacey