Connie B Posted November 21, 2005 Share Posted November 21, 2005 Okay, after giving this some serious thought and knowing so MANY of us are dealing with the dreaded NODULES, I thought being no one will start up a NODULE SUPPORT GROUP I would start up and make it a STICKY, NODULE THREAD! We have several of us living and dealing with NODULES, Kasey's hubby Fred, Heather, Skdgr81, DonnaG, Dazy, Gail, and myself. So, anyone and everyone dealing with Nodules can post here?? Questions, Concerns, maybe even some Answers. How does that sound??? Nodules aren't fun and when we are told we have them, we fear the worst. I hope this Thread will offer comfort and support and up lifting comments to all of us dealing with them. I have a feeling more and more of them just might pop up. (HOPE NOT)! Quote Link to comment Share on other sites More sharing options...
skdgr81 Posted November 21, 2005 Share Posted November 21, 2005 Now that I know I have a nodule, I find myself talking to it, arguing with it and asking it to leave. All of a sudden when I found out I thought that I felt it growing inside of my chest. I want it out out out out out~! Either myself or a surgeon is fixing to go get it.. is making me nuts! Quote Link to comment Share on other sites More sharing options...
Kasey Posted November 21, 2005 Share Posted November 21, 2005 :lol: Thanks, Connie! Hugs, Kasey Quote Link to comment Share on other sites More sharing options...
Connie B Posted November 21, 2005 Author Share Posted November 21, 2005 Hey Kasey, Thought for sure you would kind of get a kick out of this, but we do have the serious issue of NODULES, and they DO lead for great CONCERN! So, now we have a Safe place to discuss them along with how we feel about them. Honestly, I can't stand the little buggers, but..... Quote Link to comment Share on other sites More sharing options...
Hebbie Posted November 22, 2005 Share Posted November 22, 2005 Connie, Thanks so much for starting this thread! I would love to hear how everyone else deals with the ANXIETY of having this little critters in there! Watching.....waiting....and waiting again... Quote Link to comment Share on other sites More sharing options...
Donna G Posted November 22, 2005 Share Posted November 22, 2005 OK Connie , NOW YOU HAVE SCARED ME TO DEATH! In recent weeks I have been waking up during the night with what seems to be a really bad right ear ache. The weird thing is if I get up in a relatively short period of time it goes away. I never get it during the day time. Well last night at 2 am I had it again. Got up and wondered around for a little while said hello to the dogs who were there to greet me then tried to go back to bed. Well that did not work so decided to "lay" back in the lounge chair. That helped , fell asleep, woke up, ear ache gone. Well I told my husband this morning that it happened again and my opinion it must be from my cervical spine when on the pillow or something. Well he got all upset and said I had to promise to call and get an appointment with the doctor today! "Promise me"- "Promise me!" I said OK. He told me someone at work had head ache , ignored it and it turned out to be a brain tumor! No wonder he was so adament. Well I open up the site this morning and my friend Connie you mention my nodules! ( I have had 2 Cts this year to look at) Hubby is right of course, I had better call and get an appointment!. The weird thing is just a couple of days ago I had a dream that I was having to take Cisplatin again. Yuck! PS I called for an appointment, First available that I am not working is the 29th at 11 am. Turns out that, according to my note book ( I have had for 8 yrs), I am due for my 6 month follow up of the "nodules" this month so I'll ask for that too. Quote Link to comment Share on other sites More sharing options...
Dazy Posted November 22, 2005 Share Posted November 22, 2005 ConnieB...WONDERFUL idea!! I have been wanting to start a thread on this very subject - I discussed this with Kasey just a couple of weeks ago. I'm in "scan time" now, and as many nodule watchers (NW's? ) experience, my brain just seems to vacate during those couple of weeks... so I was putting it off 'til after tests. I believe, for many of us who have NEVER been dx'd, we just don't know where to address those fears. I for one, feel like a wuss, complaining about scan worries in the face of the bravery I see on this site every day. How many lurkers are out there, I wonder, dealing with similar issues (nodules) who are afraid to post 'cause they haven't yet received a dx, and just aren't sure they belong, ya know? So thanks, Connie, for a safe place to vent...You nodule lurkers...come on out...share your stories. Let's compare stories, and see if we can give future panicked nw's a place to compare their notes during the wait... I, for one, just got my results back from Nov's scan. The lobulated nodule in the L lower lobe hasn't changed appreciably, nor have the previously noted 3 in the upper/mid lobes of the R, but %#*T...they found "some" new tiny, (<5mm) non calcified suckers in the R lowerlobe ...bummer. Between that, the elevated calcium, the unrelenting asthma...I just don't know. I'll be copying the report, etc. to Mayo - Scotsdale, today. Guess I'll wait to hear what they say... Thanks again, Connie!!! This thread may likely save me hundreds in therapy costs!! ~Stacey Quote Link to comment Share on other sites More sharing options...
gail Posted November 22, 2005 Share Posted November 22, 2005 Me and my nodule go today for the results of my scan last week. One nodule has been there since the beginning--shows up on one scan, not on the next. NO ONE is worried about it, BUt . . . BAC can be multi-focular, can get new tumors, BLAH,BLAH,BLAH Did ask the surgeon if a new one showed would it be a recurrence or a new primary--he said new primary. BTW--going to a viewing for a 20 year old killed on Rt 1 in Mercer County on Friday. My husband coached him one year in soccer and his dad was the assistant. Middle of the afternoon and definitely NOT his fault. Talk about the beer truck from no where. gail Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted November 22, 2005 Share Posted November 22, 2005 I haven't been able to completely avoid the anxiety either every 3 months.I think it is human nature to worry about it. We pretty much hope for the best each time but expect to hear the worst. Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted November 22, 2005 Share Posted November 22, 2005 Me and my nodules, we got a thing going on... Well let's see it's been 42 (some grow, some get smaller, some new, some disappear / none bigger then the size of a pea) months, who knows how long I have had them (probably years) being with Stage IV and slow in developing. For me it's more get the scan to see where I stand, just got to know. I figure I'm not in any pain or discomfort, still get around under my own (not going to break any records) speed, still have a life etc. After 35 months of chemo I'm in the drivers seat which also is a plus. At this point I say the hell with them. For me it's a mind game, perception is everything. Quote Link to comment Share on other sites More sharing options...
Connie B Posted November 22, 2005 Author Share Posted November 22, 2005 Okay my WUSSY NODULE BUDDIES, I sat here last night and typed up my saga on being a NW (Nodule Worrier/WUSS) or as I called it, the DREADED NODULE ATTACK (DNA) I like the short version, NW. ANYWAY, I typed it up last night, and went to hit the submit button and I hit something else, and POOF it was gone! I HATE when I do that! Now if I could just hit a button and make this DREADED NODULE go away, I would be one happy camper! In short, we have been watching my Dreaded Nodule for 3 years now. It has gone from 4mm to 6mm to 5mm to 8mm to 6mm to 4mm back to 7mm down to 5mm. (my reason that it goes up and down like that is, my weight does the same darn thing) KIDDING! On my last CT Nodule Watch, my Pulm Doc said, he had taken ALL my scan's over the last 3 years and he and the Radiologist looked them over to compare. They BOTH agreed that this last Scan in Oct 2005 of my NODULE looked more like SCAR TISSUE. BUT, he still wants to keep a watchful eye on it for a while longer. So, I will have another NW in April 2006. At least I don't have to go every 3 or 4 months for the CT, I have advanced to 6 months now. I also will add that when this little bugger popped up three years ago, all I could think was "DAMN, here I go AGAIN!" Well, I went with THAT feeling for about 6 months and said, to hell with this worry, I can't worry about what I don't know and what isn't there! So, I put the worry on the shelf until I do my Nodule Watch CT Scan Event. I have a good side to this NODULE issue. If it wouldn't have been for my DREADED NODULE, I would NOT have know 3 years ago that I had a Myxoma Tumor in my Left Atrium. Myxoma Tumor is GONE, the Dreaded Nodule, still hanging around. I hope this thread with offer some comfort to all of those that are dealing with the DREADED NODULES! They scar the bageezes out of us, and they aren't to be taken lightly, but we can't let them rule our life either. That's my story and I'm sticking to it! Donna, you had best make that appointment for your DNA!! Don't you have more then ONE nodule? Rich, I just about fell on the floor when I read you have 42??? I know Heather has several also, right Heather? I have a dear friend who is a 7 years LC Survivor and she has been dealing with her DREADED NODULES for 5 years. She started out with 4 and is down to 2 of them now! She's doing fine and is still cancer free. Hugs to ALL, Con Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted November 22, 2005 Share Posted November 22, 2005 OMG Connie No, To Funny! Did you yell help I've falling and I can't get up...Hope you did not hurt yourself! I meant I have had them for 42 months since being dianosed and had them for years prior. The most I ever had (in the beginning) was about 10 or 12 total in both lungs but all very small. Right now there are several--they have never been any bigger then a pea. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted November 22, 2005 Share Posted November 22, 2005 So...does this mean my "Lesion" and I can't hang out with you Nodule Watchers? Because it's pretty lonely out here in Lesion Land. Quote Link to comment Share on other sites More sharing options...
Kasey Posted November 22, 2005 Share Posted November 22, 2005 Come on in, Fay. For you, of course lesions count!!!! Glad to see your computer decided to comply!! Have missed you! Love, Kasey Quote Link to comment Share on other sites More sharing options...
Connie B Posted November 22, 2005 Author Share Posted November 22, 2005 Okay Rich, I'm laughing once again! All I could think was, HOLY CRAP 42 Nodules should amount to a tumor!!! Okay, so I was having a Senior Moment! (I'm not even a Senior yet, for God Sakes)! Fay, pack up your Lesion and Get in Here, the water's fine! Isn't a Lesion the same as a pain in the arse, like a nodule is???? Quote Link to comment Share on other sites More sharing options...
nikkala Posted November 22, 2005 Share Posted November 22, 2005 I'm in the same boat and on the same waiting and watching schedule as Stacey. I hate having these freaking nodules having lost most my family to LC. I especially hate to hear them say"well you're so young so it's probably nothing" My mom was diagnosed with LC at 36. Noone wants to do a biopsy till they grow. Almost seems like the mental anxiety will kill me before the darn nodules do. Anyway, thanks for letting me whine, I have my next ct on Nov 28th and if this one's stable I may not go back anymore just because the tests all the time are driving me nuts. Quote Link to comment Share on other sites More sharing options...
carolhg Posted November 23, 2005 Share Posted November 23, 2005 I have a nodule in my left lung that has been there all of the time. On my last PET scan it decided to light up. My surgeon would not do surgery until he found out exactly what it was. Connie B told me not to worry about it and that it was probably scar tissue. I told the surgeon what she said and he said that was quite possible, BUT he had me to have a biopsy on it anyway. My oncologist and radiologist both thought that it was scar tissue, but hey they were not doing the surgery. The biospy showed the nodule to be scar tissue, so I was able to have my surgery and am currently NED. So I know for sure that those nodules do not have to be bad news. The oncologists have experience with these things and when they are not overly concerned about them I think that is a good thing. Connie B. thank you so very much. I learned to think positive and believe here at this site. I hope that I can offer encouragement to someone else. Quote Link to comment Share on other sites More sharing options...
Fred Posted November 23, 2005 Share Posted November 23, 2005 This is Kasey's DH. Thank you Connie for starting this thread. Yes I have nodules. Found the suckers during my physical in July as my bio describes. With what Kasey has gone through I asked for a CT scan "just to be sure" I was okay. Finding out that you have nodules is very scary. BUT, I refuse to let these nodules control my life. I try not to think about them all the time. Unfortunately Kasey worries about my nodules quite a lot and from what she knows and has been through I can understand her worry. I hate that I am the cause of more worry for her. I'm almost sorry I asked for the scan now that I see how she worries. But early detection is supposed to be good, right? Kasey tells me now that I'm old I talk too much and tend to ramble so will stop now. But I plan to visit often and hopefully give support as well as receive it. BTW, Kasey loves you all as I do for the help you have given her. Fred Quote Link to comment Share on other sites More sharing options...
Connie B Posted November 23, 2005 Author Share Posted November 23, 2005 Okay, I have a gut feeling this thread is going to really grow! Oh well, at least we have eachother to share our hopes and fears and giggles with. These little buggers really do rub you the wrong way, don't they? I'm with you Fred, in that I'll be darned if I'm going to let them control my life. I wasted two years right after I was dx.d with lung cancer, sitting and planning my death and that got me NOWHERE but depressed and not a fun person to be around for my family and friends. So, I got up one morning and rather then think about dying, I said to myself, HOLY COW, I'M GOING TO LIVE! And I got out of bed and that was the end of doom and gloom. I felt so bad for what I put my family and friends through back then. It is what it is, and when and IF it becomes something other then a NODULE, then I will deal with it then and NOT before! Life is good and I'm THANKFUL TO BE HERE with or without a NODULE! Quote Link to comment Share on other sites More sharing options...
skdgr81 Posted November 24, 2005 Share Posted November 24, 2005 Hi, I have been all over the net with this nodule thing and I am confused. Is a nodule a cancer to small to call a tumor or is it " maybe cancer/maybe not"... what all could this little bugger be.. All i know is i want it to go away Quote Link to comment Share on other sites More sharing options...
Connie B Posted November 24, 2005 Author Share Posted November 24, 2005 Nodules are nothing until they become something or until they are biopsied and 99% of the time they don't do biopsies on nodules. Nodules can be Scar Tissue, they can be an infecton, or fungus, and yes they can be cancer, and they can sit for years and years and years and never do anything. To have a lung surgery of sort to remove a nodule really isn't a good thing to put someone through. This is not just a little surgery. Your nodule is working your up and your getting all worked up over something that on your next CT scan could be GONE. And YES that CAN and DOES happen. You could get hit my a truck on the sidewalk, but does that mean you won't walk on the sidewalk anymore? HONEST I REALLY KNOW how our minds play tricks with us, and how we can become a basket case over something that we have NO CONTROL over. My Grandson has leisons in his brain. They Mayo Clinic told us, this is just part of his DNA. It's NOTHING TO WORRY ABOUT. Are we concerned? SURE, but there just sitting there doing NOTHING and they my do that the rest of his life. I'm sorry your not feeling well. I know you have something going on, but HONEST I REALLY don't think it has anything to do with your nodule. Hugs, Con Quote Link to comment Share on other sites More sharing options...
Connie B Posted November 24, 2005 Author Share Posted November 24, 2005 Sam, I have copied the message that Dr. Cunningham had post to your question a few days ago. I am just trying to calm your nerves a little. Hugs, Connie DR. CUMMINGHAM WROTE: Posted: Mon Nov 21, 2005 6:11 pm Post subject: It is standard procedure and is perfectly appropriate in your case. Tiny nodules are found all the time and your risk of lung cancer is low. Paraneoplastic syndromes don't give you transient shooting pains that move around a lot. This doesn't sound like lung cancer (or any kind of cancer, for that matter) to me. As always, though, the best person to answer these questions is your doctor who has all the information. Good Luck, Casey Cunningham MD Quote Link to comment Share on other sites More sharing options...
Donna G Posted November 29, 2005 Share Posted November 29, 2005 Saw Dr. Von Weiss today. My Ct of the chest is tomorrow at 8 am. It turns out that the radiologist thinks my nodules are "stable" . It is my lingula he wanted to look at! ( I said to myself what is that!) I had to look that up! lingula lower portion of superior lobe of left lung; below cardiac notch My tumor was high in the apex of my right upper lobe of lung 8 yrs ago December 3 it was found. So wait and see. Donna G Quote Link to comment Share on other sites More sharing options...
Donna G Posted December 1, 2005 Share Posted December 1, 2005 Nurse just called. She gave me a very "technical report" of my Ct I had yesterday. "It's fine. No worrisome changes" Quote Link to comment Share on other sites More sharing options...
Debi Posted December 1, 2005 Share Posted December 1, 2005 Donna- Just happened to 'peek' in here and saw your post. Am glad that things are okay!! Quote Link to comment Share on other sites More sharing options...
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