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MAY BE TIME FOR WAR AGAIN

luv4lacrosse's picture
luv4lacrosse
Posts: 1376
Joined: Jul 2010

Been gone awhile as things have been going great. Sunday morning woke up with a huge cellulitis in my face, neck and upper chest. 4 days of hardcore antibiotics and was discharged on 10 days of oral antibiotics. While I was in, a CT was ordered to see if any of the infection required draining or resection which it did not, now for the SHOCK, the CT showed 3 nodules in my right lower lobe of my lung. One was noted back in March and treated like scar tissue or aspiration. Come forward 5 months and the one from march has grown to 1CM x.6 CM and the other two are so small even a fine needle biopsy would not work. Radiology opinion is they resemble lung cancer. I go to see my thoracic surgeon next thursday as he read the report and scan and says he is not 100% convinced it is Lung CA. (whatever that means)
I was told in the beginning that based on my cell type that if it did spread, it would be to my lungs and withing a 2 yr period.

Looking for someone who has had a simillar experience, and just trying to get they lay of the land. I know nothing about lung ca, but have always had the mindset it meant to go coffin shopping.

Hope there have been as many positive advances with lung CA as there seems to have been with head and neck CA.

Prayers and positive mojo is needed.

Best

Mike

NoDuck
Posts: 132
Joined: May 2012

But I can't answer any of your questions. Sorry. But the subject line you chose -- and in all caps no less -- tells me you are a fighter. And that is what it takes to get through all this thatbis being thrown at you.

Encouraging thoughts, good mojo and prayers for you.

Deb

CivilMatt's picture
CivilMatt
Posts: 2841
Joined: May 2012

Hi Mike,

Prayers and positive mojo, you got it.

Sorry about the situation, but it sounds like the doctor isn’t surprised and has a plan too deal with it. I read here all the time about people getting treatment with good results, so keep the faith and stay in the game. I’ll be pulling and praying for you.

Best,

Matt

rush1958's picture
rush1958
Posts: 197
Joined: Jul 2010

Hey old friend. Sending you all the positive MOJO in my arsenal.

Rush

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

Hey Mike, Lots of prayers and positive vibes are heading
your way. I hope you find the answers your looking for
and they are all good ones.

God bless
Tonsil dad,

Dan.

hwt's picture
hwt
Posts: 1836
Joined: Jun 2012

Do hope it's not lung cancer, however, my brother was being treated at Mayo in Rochester for another primary cancer when they found a new primary in lower lobe of his lung at a very early stage. They removed the lower lobe of the lung and he has been NED more than 2 years now. No chemo no rads and as active today as he was before. Prayers sent your way.

phrannie51's picture
phrannie51
Posts: 3621
Joined: Mar 2012

and prayers going your way Mike. The doc isn't "convinced" what he's seeing, so I'm keeping that in the forefront of my mind....it ain't cancer till they say it is.

p

D Lewis's picture
D Lewis
Posts: 1521
Joined: Jan 2010

It ain't cancer till they tell you it's cancer. I started with one 'nodule' in my lungs, and the last PET CT showed three 'nodules.' These were all at or below the resolution level of the scan, and I was told that not every scan will show all the nodules. I am 2 years and 3 months out from end of treatment. For now, the doc says... if the nodules aren't causing any issues, he's not going to mess with them.

It could be 'valley fever' scars, or the result of a long-ago exposure to TB.

Deb

osmotar's picture
osmotar
Posts: 951
Joined: Jul 2011

Mike,

Sending tons of blessing and light your way...

Linda

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Been away a couple days, and come back to hear this...Nothing to mess around with, Mike, any time it gets in the lungs- if that's what it is. Sounds like your Drs have done their job in finding whatever it is early, and hope and Pray that's a good thing. From what little I do know, H&N C that shows in the lungs is not as bad as Lung C- different types of C, and Lung C is the worst of the two. Only advice I can give is what you know- monitor it closely, and urge your Drs to be as aggressive as possible in dealing with whatever it is- error on the side of the aggressive. You got a lotta life ahead of you, Mike, and don't let this thing get in your way. Hey, you and Greg are the only two good people in all of St.Louis, so the city cannot afford to let this thing knock you out (LOL). Prayers are with you, Brother.

Believe

kcass

luv4lacrosse's picture
luv4lacrosse
Posts: 1376
Joined: Jul 2010

Kent, I have heard the same thing. I have allot of unknowns at this point in the journey. I guess getting the staph was actually a blessing as I ended up being scanned almost 3 months ahead of schedule. With my wife being very connected at the same facility I am being treated, she has been able to forward my scans to docs she knows, both surgeons and radiologists and the consensus is the nodules appear to be of a suspiscious nature and resemble a cancer, and not scar tissue or an old aspiration. I guess it is encouraging to hear they are too small to even do a fine needle biposy, so a wedge resection would most likely be in order. Just take out a chunk of lung that encapsulates the three nodes and send them off to pathology. I have refrained from doing any "panic researching" as I did that the first go around and I was a complete mess. I may look around the lung boards for some advice.

As always, you guys are awesome.

Best

Mike

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Prayers are with you Mike....

Like Kent said, sounds like your MD's are on the ball.... Pro-active, not re-active.....

Stay positive brother and fight the fight I know you can.

~John

arndog64's picture
arndog64
Posts: 536
Joined: Mar 2011

damn damn damn!!! I only hope for the best outcome for you. You are one tough fella, I have no doubt, you will come out on top.. Take care my friend....

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Mike:

I am a head/neck cancer (dx August 05) and lung cancer (dx June 07) survivor and am now NED (No Evidence of Disease). For the h/n cancer I had a sizeable portion of my tongue replaced along with a nerve transplant and a radical neck dissection, followed by 33 of 35 scheduled radiation session and several rounds of chemotherapy (cisplatin). Once the steroid wore off (I was like the Tasmanian Devil in terms of energy for about 24 hours following each chemo treatment) I was lying-on-the-bed-in-a-fetal-position-in-the-dark-with-thum-inserted-in-mouth-and-bucket-beside-bed sick for a couple of days. I met with ENT regularly and with OncoMan every 3 months following either a CT scan, a PET scan, or both. Eventually this was extended to six months and then ENT man, after five years said "You know where to find me if you need me" and we were done, with some occasional visits for dilations.

I asked GP in June of 07 why I still had this nagging little cough since I had quite smoking two years prior. He immediately ordered xrays and CT scan. Now, I was seeing GP because of an infection in facial area (cellulitis?), and had begun taking an antibiotic. In any event, the reports back were not good. I've written of this extensively on my CSN profile and blog, but the bottom line is OncoMan said I had as little as 10 months to live. There were nodes throughout both lungs, all lobes. Palliative care, chemotherapy to try to prolong quality life was the one option. Then in August, following another CT to observe growth, it was discovered that all of the nodes but one were gone! Turns out the Keflex I took for cellulitis apparently also took out the lung infection that the docs had misread as cancer based on my previous history.

They put me on a CT scanner to try to get a needle to the nodule for a biopsy, trying a number of awkward positions, but my ribs were not cooperative and it was on to a wedge via VATS surgery (video assisted, less invasive). The deal was, if it was the same kind of cancer (squamous cell carcinoma) and proved to be metastasis, they would not remove the lobe, since they could not know where else it might have gone. But if it was new, they would remove the lobe (lower right). They did the biopsy while I was still under and determined it was SCC, but not whether it was mets, and so elected to remove the lobe.

Following a bout with MSSA (a relative of the staph infection MRSA), I was sent home with a man purse (24/7 picc line meds for the MSSA for a month) and regular rounds of chemotherapy to 'slay the strays'...carboplatin and taxol, nowhere as insufferable as the cisplatin, a walk in the park, in fact, by comparison.

Longer answer than you wanted, but I am NED, still.

Best wishes.

Take care,

Joe

luv4lacrosse's picture
luv4lacrosse
Posts: 1376
Joined: Jul 2010

Joe, your story is very encouraging. Sounds like we have allot in common with the cellulitis / staph. I have had 5 of these since my treatment started with 3 of them coming post treatment. The staph seems to hit me about every 6 months, and since I am MRSA positive combined with the high dose of bilateral neck rads, the docs tell me to just get used to getting the infections.My nodules are quite small and grouped very close together in one spot of the lower lobe of my lung. My doc told me going in that my type of SCC if it returned would go to my lungs and most likely within the first 2 years of my post treatment. If I were thinking, I would have bet the farm in vegas and came home a rich man with that type of inside information.
I go to see my Thoracic Surgeon next Thursday to see where we go from here. Keeping this away from my two sons until I know more as I want to enjoy the last few days with my youngest son before he goes back to school, and I am moving my oldest son into his own place today, so no reason to take a dump on everyones good weekend.

I will keep you posted.

Thanks a bunch for your info.

Stay strong

Mike

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Hoping that soon you'll be telling us "we were so scared - thank goodness we didn't mention it to the boys - now we've got good news to share with them". I'm sure your heads are going wildly in different directions. I hate cancer. Hoping the spots have nothing to do with cancer, but I know the sick feeling we all get when we hear about "spots" is all about cancer. Hoping your docs are amazingly fast at getting to the bottom of it.

Debi16043's picture
Debi16043
Posts: 37
Joined: Aug 2011

I too have had cellulitis since june 2012, now going for pet scan to see if its really an infection or another tumor. Did yours turn out to be cellulitis or new tumor?

luv4lacrosse's picture
luv4lacrosse
Posts: 1376
Joined: Jul 2010

I had Cellulitis, and a new cancer was found when I got a ct scan to see if any of the infection needed to be drained or removed. It was found by accident, and what a blessing because I was not due for a scan until the end of October.

Mike

Noellesmom
Posts: 1275
Joined: Aug 2010

It's not cancer until they say it is so no coffin shopping yet, please.

I know this was a shock but people get the "it looks cancer" nonsense all the time only for it to turn out to be nothing remotely related.

Can certainly understand your concern - follow through with your doctors.

KareGiver
Posts: 289
Joined: Apr 2011

Mike, but hope they find your "nodules to be nothing." My husband is now being treated for lung mets from his tonsil cancer (which he completed treatment for in June 2011.) He had a "nagging little cough" in April which led to a chest x-ray, chest ct and petscan. He now has chemo every three weeks - he is in a study - and just finished his fifth treatment. The last two ct scans have shown improvement. Yeah! They say he has "incurable head and neck cancer" which may be true, but he is fighting it with all he's got. Please keep us up to date and PM if I can be of any help. Prayers your way!

fisrpotpe's picture
fisrpotpe
Posts: 1321
Joined: Aug 2010

i shared with a friend the other day who is a two time survivor as well as i am a two time survivor after he told the local group his scan did not come back clean. " reminder to keep in mind, IT'S NOT CANCER UNTIL IT IS BIOPSIED" everyone in the group agreed as they are survivors also.

Mike, i did not have what you have, but i can say it's not bad before it's bad. keep the head up and believe it's not bad.

john

Crazymom's picture
Crazymom
Posts: 289
Joined: Nov 2011

Prayers your way. Hoping for the best. Ann

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Mike,

You know you got those positive thoughts and good mojo headed your way from me! I also know you got a good team of doc's, so hoping your thoracic guy's intuition is right and it ain't back.

Lot's of support for you here on this site Dude! But none more than from about a mile away from ya!! Need anything at all, let me know.

Greg

ps- sorry so late with this. Been outta town and no internet where I was. Sent you an email when I got back but that was acting up also

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Mike, more positive thoughts your way from this corner. Sure hope it turns out to be nothing to be concerned about. Stay strong partner. Cheers.

Jimbo

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Mike

sending you best wishes that this turns out to be nothing to worry about.
As others have said, we always worry, that won't ever stop but really we know that it's not bad until you know for sure with biopsy results.

hoping this turns out well for you and your family.

luv4lacrosse's picture
luv4lacrosse
Posts: 1376
Joined: Jul 2010

I saw my Thoracic Surgeon yesterday, and when I return from a business trip / visiting my son at Kansas State University Sept. 15th I will have surgery to either do a wedge resection in my right lower lobe of my lung, and or have the right lower lobe removed. I did a pulmonary function test yesterday, and will have a PET scan a few days before the surgery to see if there are any other parts of me to be concerned with. The surgeon says even with the lobe removal, I will only lose 10-15% of my overall lung capacity, and with me being in excellent physical shape, he says I will not even notice it.

For anyone who may have been through a simillar situation, can you give me some feedback?

Thanks

Mike

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

That sounds really positive Mike...

Thoughts and prayers they can deal with it as minimal as possible and for the very best outcome.

Prayers,
John

katenorwood
Posts: 1808
Joined: May 2012

Mike,
We have different dx's...but lung function I battle with every day. 10-15% is a very positive thing ! Thank god you've stayed in high physical condition, it's a great thing ! I'm down to 35%, and they still can't tell me if it's cancer. Nodes are too small and with other health concerns it's a wait and see. I wish you the best of the best outcome ! Keep us posted ! Katie

fisrpotpe's picture
fisrpotpe
Posts: 1321
Joined: Aug 2010

with that news Mike it sure has added hope and increase your positive mental attitude going into this stage of continued survivorship. you took it on and one the first time and there is no reason you should no be able to do the same.

PMA is most important for survivorship and fight
john

KareGiver
Posts: 289
Joined: Apr 2011

Great news! Wishing you the best!

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Same lobe, RLL, Mike. They took the entire lobe, but fortunately it is the smallest of the five. They advised that I might not be able to run any marathons again, but that I could play the piano something I couldn't do before (I know, bad joke, old joke). since I was not interested in running any marathons, I was happy with the outcome; Not counting the MSSA attack, which kept me in for another month, I was expected to stay in for about four days and was on pace to beat that when the MSSA arrived. If they do VAT surgery (video assisted surgery) the invasion should be minimal (I have three scars where the tubes were inserted (the third one coming later for the staph infection) and a smiley face scar under my right armpit. They encourage you, of course, to get up and about almost immediately, and so you will be Igor for a few days, dragging a pole around the hospital floor with IVs and especially the drain device for tubes accompanying you.

You can expect respiration fun about every four hours (where you breathe something through a mask for five, ten, fifteen minutes. The occasional 'mustard gas' (that's what it felt like) may have been part of treatment only because of the infection.

You MAY once or twice find yourself gagging on what comes up from your lungs. I was completely breathless one time, rather scary, and eventually they helped me get a huge chunk of something to come out. That event started in the bathroom and we all had a big laugh about it once we were sure I was going to live.

You can also expect an epidural and you will welcome it, trust me. It is higher up your spine than where pregnant women get them (or so I was told) so it might take two or three pokes to get it in (there is less target area the higher up you go)

Honestly, prior to the infection it was quite bearable. The worst of it, other than the chunk I upchucked, was getting the darned plumbing down my trachea, which they have to do while you are conscious, since you have to be controlling your own breathing at the time. That can be painful, at least if, like me, you have had some interesting surgery done to your oral cavity and neck.

Then again, things have probably improved measurably since 2008.

Hope and Humor, Mike! Make 'em laugh and they'll treat you right.

Take care,

Joe

BrianKrashpad's picture
BrianKrashpad
Posts: 188
Joined: Jan 2011

and prayers Mike. Just keep keepin' on.

Be well.

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