[What Nodule?!?!?]

I has a large NSLC adneocarcinoma in my right lower lobe....I had a lobectomy and partial resection of the middle lobe done in Feb.of 2009 and then did chemo. I was declared cancer free in 2013 and released to the care of my family doctor.

I had my CT scans done every Dec. at the same hospital from 2008 thru 2014.

I was uneasy about my after care and had my scan done at the Cleveland Clinic last Dec. and saw an oncologist there who I supplied with a copy of my 2014 scan.

Imagine my surprise when I saw him for my appointment and he told me the nodule in my right upper lobe was stable and there were no changes since my 2014 scan!!!

What the hell?!?!? What nodule?!?!?

How long has that been there?!?!?

I'm not quite sure what to do.....should I ask for copies of all my scans to try to figure out when it developed???

Do I file a complaint about it???

Do I tell my insurance company they paid for at leastt one misread CT scan???

I had my first panic attack in over three years over this!!!!

[What Nodule?!?!?]

I has a large NSLC adneocarcinoma in my right lower lobe....I had a lobectomy and partial resection of the middle lobe done in Feb.of 2009 and then did chemo. I was declared cancer free in 2013 and released to the care of my family doctor.

I had my CT scans done every Dec. at the same hospital from 2008 thru 2014.

I was uneasy about my after care and had my scan done at the Cleveland Clinic last Dec. and saw an oncologist there who I supplied with a copy of my 2014 scan.

Imagine my surprise when I saw him for my appointment and he told me the nodule in my right upper lobe was stable and there were no changes since my 2014 scan!!!

What the hell?!?!? What nodule?!?!?

How long has that been there?!?!?

I'm not quite sure what to do.....should I ask for copies of all my scans to try to figure out when it developed???

Do I file a complaint about it???

Do I tell my insurance company they paid for at leastt one misread CT scan???

I had my first panic attack in over three years over this!!!!

[Test Time---Had to rescan???]

Yes--I am NED !!!

So relieved to hear the scans were clear after having to go back. The radiologist is the same one that's been looking at my stuff all along and he wanted a better look at the scar tissue from my surgery and the technician evidently didn't have me take a deep enough breath the first time around.

Next time it's just a xray and doc says we can talk about maybe taking my port out !!

Thanks again for the support here !!!

[Test Time---Had to rescan???]

NED !!!!! Thank you for the reassurance---test time seems to be a rough time for me, and the call to come back in made the 'scanixety' a whole lot worse.

So glad to know others really do understand....

Deb in OH

[Test Time---Had to rescan???]

I hope somebody can help calm my nerves and reassure me that all is not hopeless here---I am about ready to get the Ativan out.

I had my six month scan and blood work done this morning... and this afternoon, got a call to go back in to rescan for my lower lungs and kidneys.

I know the technician isn't allowed to say much, but does it sound possible that her reason for it--that I hadn't taken a deep enough breath for the baseline picture before the contrast was administered----could possibly be for real ???

I'll surely be a basket case by morning.

Deb

[Results]

ts---I haven't made up an update of my own yet, but doing very well I have been enjoying NED since last checkup in February and I go for a ct next month....the 'scanxiety' has already started, I am paranoid about every little cough or ache.

I am also trying to figue out where to post for input of others on neurapathy after chemo ??? Something I am having problems with after returning to work and would like to know what might help before I ask the oncologist about it.

Deb

[Results]

So happy for you Bruce !!! You are an inspiration for me since our cases were similar---can't thank you enough for being there when I first started the journey and giving me hope

Deb

[Navalbine]

I'm not sure how helpful I can be, as I am just in the second round of my chemo and still trying to figure out the side effects myself.

I am getting --- 4week/rounds--28 day cycle --days 1 and 8 cisplatim and navelbine, day 15 is just navelbine---and day 22 was supposed to be navelbine too, but it looks like I may be getting that week off coz my blood counts are low and my onc doesn't think I will be able to handle it.

I get most of the side effects --- but the week with the navelbine was very mild compared to the previous week with both---just very tired the next day--but I do get a migraine like type headache every Thursday morning at about 3am (chemo is on Tuesday) that lasts pretty much all day, but is managable with Excedrine.

Deb[/b]

[Post Surgery Update]

I went to the oncologist today---and will be having a port put in and then starting my chemo on the 24th.

I will be getting Cisplatin/Vineorelbine---in a 28 day cycle over 16 weeks.

He said that day 1 and day 8 will be long---but day 15 and day 21 will be short treatments.

Everything is happening so fast now---we chose this treatment because the oncologist said it would not be quite as harsh, I might not lose my hair, and I don't have a problem doing the extra 4 weeks---there is a hospital that my onc does a clinic at a block away from my house---I will do the extra time to maybe lesson the side effects.

My staging has been confusing ---we went over it some more today---the surgeon said 1B---but the pathologist said 2B---I asked for a copy of my report---the parts about the nodes all say clear---the margins are clear--but there is a notation saying:

"Multiple peribronchiolar lymph nodes involved by adenocarcinoma---see general comment"

then the comment says:

"The periibronchiolar lymph nodes containing adenocarcinoma are involved by direct extension from the adjacent tumor mass"

So--the picture the onc drew me showed that the tumor had gotten so big that it began to engulf the lymph nodes---I can be 1B or 2B---we are saying 1B (I think for psychological reasons)

My tumor size was 5.2x4.8x3.6----it also say that the mass abuts and encircles multiple bronchial and vascular structures--but does not appear to invade them. It extends to but not through the pleura and with 1.2cm of bronchial margin.

So---I continue to be a total puzzle to these guys--I'm evidently extremely lucky that this thing didn't get into anything more than it did---the report noted that the mass had evidence of hemorrage and necrosis---the only reason we found it is that I coughed up a little blood.

Soooo----I am trying to be optomistic about all this---and be thankful for what didn't happen.

Now I will be asking ya'll about the chemo and what to expect.

Deb

[Post Surgery Update]

I went for my follow up appointment yesterday and the doctor says am doing very well---Except for the pain management.

I am now supposed to try Lyrica with my meds to see if it will help, they think alot of my problem is being too sensitive to the pain because of my low pain tolerance, and my body producing too much adrenaline making me too tense to react naturally instead of fighting the whole pain process. My blood pressure and heart rate go sky high with the pain--but at least they can see it happening now and know what it's doing to me.

If anyone knows anything about the Lyrica--please share---I don't like what I've found on it so far, except that it may act on the nerves and that may be the source of my trouble.and am almost afraid to take it--I sure don't need to gain 30 lbs on it !!

My surgeon also explained what happened during my operation better, and why it took so much longer than expected---he ended up taking half my right lung---the whole lower lobe and part of the middle one---the lymph nodes were clear---but---the tumor had engulfed a couple of them because it was so big---the nodes were ok---but surrounded by the cancer.

So---I see him again in three weeks then on to my Onc---right now they are suggesting four rounds of chemo over two months to be sure.

I consider myself lucky that this thing wasn't aggressive enough to spread because it obviously had every opportunity to do alot more damage.

The prayers and good thoughts are obviously helping---and the advice has been invaluable---I'ld probably still be suffering in silence with inadequate pain meds without knowing I could ask for better and that I don't have to hurt.

Deb

[Post Surgery Update]

I am so glad I called the nurse and got more meds for the weekend---And-- I am definately glad I didn't wait til I was completely out, coz the one vicodin every six hours he sent wouldn't have done much---it still wouldn't be enough to maintain me---I must be a real pain whimp.

I don't want my doctor to think I'm a druggy or something---but I do want to ask for enough of the right thing for the average person to be comfortable through this (in case he thinks I should be a lot tougher than I am)---is it appropriate to ask about that on here? I have no clue what or how much of anything it takes coz I've never really had to deal with pain and the meds before.

I understand I need to feel a certain amount of pain so I don't overdo things---and that I should expect to feel some----but I tend to start to draw my shoulders up---start to hyperventilate,and then turn into one big old muscle spasm when the pain gets past my management point.

I could be alot more comfortable now--but I am hoarding what meds I have now in case I don't have enough later.

Deb

[Post Surgery Update]

The nurse got back with me in pretty good time, and the doctor gave the ok for something to get phoned in right away.

So---I am a happy camper now

The pain is minimal and the incision itch is thankfully more troublesome.

I have vicodin to use as needed now, so I can save my good meds for during the nites and for any rough spots over the weekend.

I let things get way too far out of hand, and it took way too long to regain control. I'm sure you guys can relate---and now, I understand the warnings completely. I will definately stay on top of it, coz I don't even want to go there again!!

I wouldn't wish what I felt today on anybody---but at least you guys understood the pain and the panic...

Deb

[Post Surgery Update]

well-- I thought I was being a real trooper and doing pretty good there for awhile.

But--now I find myself in about a panic-- because my follow up appointment isn't until Monday morning, and I just realized this morning that I'm not gonna have enough of my pain meds to last til then.

I tried yesterday and again today to back off on it a little to see if I can get by on a little less --but that didn't turn out to be such a good idea. As soon as I cut part of the dosage-- I feel the pain start creeping in and then get to the point I start shaking and about hyper ventilating coz it hurts so bad.

I called the doctors office and am waiting to hear back from them. I hope I was able to make sense to the nurse so she understood what I was trying to say and doesn't think I just want more drugs.

Even if they can just give me whatever my step down meds will be, maybe I can hoard my good stuff for night time and when I totally can't stand it --- and have something to get by the rest of the time.

I had to take the anxiety meds just to get past the panic of being afraid of the pain.

It's crazy what I'm doing to myself---went from being great yesterday to whining and freaking out about pain today.

The roller coaster ride continues...

Deb

[Post Surgery Update]

Hi Everyone !!! My surgery went great--at least that's what they are telling me.

My lymph nodes were clear---so they were able to go ahead and take the lower right lobe and hopefully I am now a survivor!

I'll know more next week after my follow up appointment---I don't know if the surgeon is still thinking maybe some chemo or radiation, or what's next.

He does seem to be a little more interested in my thyroid now and sent me home with double the synthroid dose I was taking. The following is the link to the page my sister kept for me while I had my surgery in case anybody wants to read the story---to log in enter: urban,

and password: sassy1.

http://thestatus.com/index.cfm?fa=patie ... id=5039003

I'll update ya all further when I feel a little perkier---the pains not too bad--but I'm still pretty groggy a lot of the time

[diagnosed today]

Thanks to all of you for the prayers and good wishes---I'm taking my login info along coz they said they have computers available for patients, and I can get on line if and when I get out of bed---if they make it bearable I'll get up !!!

[diagnosed today]

Just an update--the Cleveland Clinic called and has moved my surgery up to Thursday now---better that than a delay coz I was starting to get nervous and needing more of my anxiety helpers.

Had a major meltdown at first coz all the plans had been worked out with kids and the dogs---and the reservations had been made.

But I think I got it back together and am getting things in order again.

Thanks again for all your positive reinforcement and good wishes---I feel more confident and hopeful than I did when I first got here.

I'm gonna go in there and kick some adenocarcinoma butt, coz the lymph nodes are gonna be clear !!!

Deb

[diagnosed today]

Just a quick update----surgery is on for Feb 20th!!

All my testing is ok---no brain mets, hearts ok---everything looks good and my surgeon is still pretty optomistic----he will check out the lymph nodes first then proceed if all is well. He says I'll be up walking with my IV pole the next day and out in 4-6 days.

He talked to my oncologist and we will talk afterwards about any possible need for chemo or radiation--he also said I may qualify for a couple clinical trials they have through Cleveland Clinic.

I've been listening to this Guided Imagery cd they gave me that's supposed to help-- and so far it does sorta seem like it puts me in a better place mentally.

Hopefully I am ready for this---I've tried to keep up with everything---but was kind of thankful when a Case Manager contacted me from the insurance company (AdvoCare) and assured me that all is well there, and to call if I need anything or have any questions.

I also got a page all set up at thestatus.com--- a site to keep family and friends updated on your condition.

If any of you can think of any helpful pre-surgery things I an do that would be helpful, it'd be greatly appreciated---right now I'm sorta in a hyper mode getting ready---but I'm sure the fear part will kick in pretty soon.

Deb

[diagnosed today]

Thanks for the positive thoughts---of course I am trying to be as optomistic as possible.

After thinking about my tests Tuesday,I decided maybe I better not go alone---I sure don't want to be stuck in Cleveland trying to get home during rush hour if for some reason they tell me I can't have my surgery.

I sorta figured I should be realistic--I don't have to do this alone-- and there are those that truly do want to help me through this.

Deb

[diagnosed today]

I met my surgeon yesterday---I feel good about this guy.

And he agreed with my oncologist and is also saying 80% chance cancer free with surgery !!!

I go up Tuesday for the day---he wants a nuclear stress test and a ct of my brain---then I talk to the anesthesiologist. If all goes well---my surgery will be the 20th.

He is going to check lymph nodes for mets first --and if all are ok, he will remove the mass and I will be cancer free---no radiation or chemo. BUT if there's any sign of mets he will close and I go back to the Onc to kill the spread first.

So ---I am in better spirits than I have been in quite awhile.

He said I am really unlucky to have two cancers---but very lucky that I am young for this ---and that they are unrelated ---and that the thyroid thing is no big deal---don't worry about it for now.

He also said my mass is about the size of a small plum-- he thinks it is an adenocarcinoma that thankfully is not in the pleura ---it looks contained---my lymph nodes looked good on my pet---and I am an excellent candidate because I'm not sick--- the only symptom is coughing a little blood.

So--unless something shows up I am tentatively staged as 1B NO MO .

It is such a relief to know what I'm up against and to have a plan !!

[diagnosed today]

You guys are awesome---thank you so much for your replies and support. I was feeling pretty low and alone when I posted and the response was much more than I expected.

It's comforting to know that someone understands what I am trying to deal with.

I already have a prescription for klonopine---I started having panic attacks almost a year ago that they had blamed on peri-menopause. My doctor says just to let him know when I need more or if it is not enough to handle the stress.

Right now I am still taking vicodan for the collapsed lung and it is keeping me pretty calm.

It was reassuring to hear that I am not alone in finding that the meds help to cope---I was sort of afraid I was creating another problem by trying to numb the feelings and slow the racing mind. But, I was finding that I can't stand myself and just want to be alone unless I can mellow out and calm down.

Thank you all for being here,and for making me feel better about myself and what is happening to me.

Deb

[diagnosed today]

I just got the definate diagnosis of nsclc today after three months of tests and being on a roller coaster of emotions.

The oncologist is calling it stage 1 and says we caught it early--but-- my mass is pretty big--3.8x5cm, in the lower right lobe.

I am scheduled to go to the Cleveland Clinic to talk to a surgeon on Tuesday---and to have ressection done asap. I've already had my pft and am operable, and have had a ct/pet done with no sign of any lymph node involvement so far.

They have found that I also have papillary thyroid cancer---but that is supposed to be more treatable and is to be tackled later.

Needless to say---I am a mess---trying to be positive---but still dealing with a partially collapsed lung from my ct biopsy Tuesday---and also impatient to fight this before I get sick or start to weaken.

I don't know anyone who has a clue about what this is like.