From Head & Neck Cancer

[ToBeGolden]

I am scheduled for a lung biopsy next week (week of Oct 22). I gotten to this point the hard way:

July 2010: Radiation for layngeal cancer.

Nov 2011: Total Layngectomy (removal of vocal cords)

Jan 2012: More Radiation and Lite Chemo (not much nausea; no hair loss)

Oct 2012: PET Scan detected “stuff” in the lungs.

I use all three methods to regain speech after removal of vocal cords. 1) Electrolarynx: a vibrator held to neck or chin, 2) TEP voice prosthesis, a one-way valve surgically placed between the trachea and esophagus, 3) esophageal speech - “swallowing air” and burping. I consider myself “intermediate” in all three methods.

I was forcefully retired in 2008 due to the economy. I took a year off. Was a census taker in 2010. Just as I wanted to seriously look for work, laryngeal cancer struck.

I never smoked. However, I was exposed to extensive second-hand smoke during my formative years. I lived with three chain smokers, father, grandmother, and uncle. There seemed to always be two lit cigarettes in our flat. I think everyone born in the 1940's (or 50's) was a smoker whether or not he/she lit up. (Sorry for the political statement.)

I am a sober alcoholic (have not drunk in 20 years). No recreational drugs. Very dull person, overall.

My nickname, ToBeGolden, refers to Golden Retrievers. I've always wished I had their personality. Once a neighbor threw a rock and hit my Golden in the head. After a dazed moment, Angus picked the rock up and returned it. Dropped it as my angry neighbor's feet. What a way to win an argument. Wish I could learn to react in such a manner.

I see the rapids ahead, and the waterfall beyond them. What is the best route thru the rapids? How can I avoid not be smashed against a rock? Of course, I worry about the waterfall. Is there a way to beach my craft and not launch over the waterfall? But the challenge of the waterfall is a little ahead. I have to figure out whether to attack the rapids on the right, left, or center. RickW.

[chloesmom]

Hi ToBeGolden,

Welcome to the LCSC board. It sounds like you've had quite the journey so far.

Good luck with the biopsy. "Stuff" in the lung on the PET scan can be infection, inflammation, or tumor, but until they can get a tissue sample, it is unknown what that rally is.

I am hoping for infection or inflammation for you, but either way, keep in touch with us and let us know how you are.

There are a lot of fantastic people here, and we will want to keep up with you.

Cindy

[dianew]

I welcomed you earlier under another thread - but did not have much of your story. You certainly have "been through it" and obviously have a great attitude - which I believe is half the battle. I love the ToBeGolden idea - wouldn't the world be a wonderful place if we could all adopt that outlook?

Cindy is right - "stuff" in the lungs can be anything and I will be thinking good thoughts that yours is just some minor inflammation.

Others will be along soon to welcome you - please let us know how you are.

[ToBeGolden]

This is definitely more than you want to know. I am having intermittent aspiration thru my voice prosthesis (which is a valve between trachea and esophagus). You remember my vocal cords have been removed. So at least a couple of times a week liquid gets into my lungs when I drink. Voice prosthesis periodically fail (leak); and their median lifespan is 3 months. I've had mine 11 months.

I have decided to have the voice prosthesis removed (rather than replaced). Reason? 1) I've obtained usable esophageal speech, and my esophageal speech is improving every week. 2) The voice prosthesis takes a lot of cleaning (going inside the neck with little brushes) and all voice prosthesis will leak after a number of months. If I need chemo again, I don't want to be bothered with a leaky valve in my neck. I can barely manage the prosthesis now when I'm at my best, there will be no way to clean it etc when undergoing chemo. And the prosthesis provides a nice route for all that chemo-produced vomit to get get into my lungs. Once the prosthesis is removed, my stomach is connected to my mouth and my lungs are connected to the hole in my neck (stoma). There is no way for vomit to get into the airway. One small advantage for having a total laryngectomy.

The oncology plan is not to biopsy but see if the stuff in the lungs grow with a repeat CAT Scan. Will keep you posted Rick.

[dianew]

You are obviously very knowledgeable about your situation and I am sure are making the best decision. Please do keep us posted. This is also just a great place to come and vent if you need to, although I know you have an exceptionally good attitude.

Diane

[CindyA]

Dear ToBeGolden,

First of all I like your reason for chosing the name ToBeGolden. That will be a story I will remember and re-tell if you don't mind. I was just wondering how your Cat Scan went? Is your speech still improving? Just checking up on ya.

-CindyA

[ToBeGolden]

Bad News: My repeat CT showed that most of the seven lung nodules had minimal growth over a 6-week period. So I'm scheduled for a lung needle biopsy next week. I was hoping that the stuff in the lung was aspiration pneumonia, but it does look like cancer.

I plan to eat ultra-healthy and follow the advice of the professional healthcare team. Although retired, I keep busy throughout the day. Night is when anxiety raises its head. You've all been there. My insomnia is allowing me to finish reading a number of novels. Rick.

[michellep]

Rick,

I'm sorry to hear this but keeping yourself busy with your books it a good thing. Please let us know what happens and just remember.....we care ((hugs))

[dianew]

I am also sorry to hear this, but I focused on the word minimal. If cancer, perhaps this means it is very slow growing giving plenty of time for treatment options. Please let us know how the biopsy goes.

Unfortunately it seems nighttime and anxiety do seem to go together -- I do a lot of reading also. Anything you'd recommend?

[ToBeGolden]

If I didn't mention it: I'm scheduled for a needle biopsy of the lung next week. I should have the results by the end of the week. Thank you for all your support. So I will soon learn whether I am a true member of this little group or merely a fond admirer. Rick.

[chloesmom]

Hi Rick,

Good luck on the biopsy and let us know how it goes.

I too love your name=ToBeGolden and the story behind it. What a story about your golden. I have two labs and they are fantastic dogs. They are both the picture of unconditional love.

Keep us posted on what's going on with you.

Cindy

[AnnieRSA]

Hi Rick. Been reading your posts and updates. It is so endearing that you chose such an apt nick. My first dog will always be a golden. And now you have given me reason to cherish it even more.

Wish you the very best with the biopsy and here's a prayer for God's choicest blessing for you.

Sent from my iPhone using Tapatalk

[ToBeGolden]

Back home after biopsy. Anesthesia (Due to Myclonic Jerks) -> biopsy -> lung collapse -> overnight in hospital -> clear liquid diet (bah!) -> can't pee -> catheter at 2 AM -> still can't pee -> catheter again at 7 AM -> finally can pee (yippee!) -> hole in lung heals -> home -> sleep -> sleep -> sleep -> finally awake.

Pulmonologist said he took a lot of sample; he said he hoped they would be "adequate". Results Monday from Medical Oncologist.

Told not to cough for fear of reopening hole in lung. Usually have coughing fits. So on lot of narcotic cough medicine. Coughing almost reduced to zero; but knocked out. Okay state for a couple of days. Better than risk injury to lung. Very muddy thinking today. Won't drive or use sharp tools. Rick.

[dianew]

Rick - am glad the biopsy is done and you are now home. Really sorry about the collapsed lung -- they were worried about mine (only have one) - but I got lucky. Am glad that is behind you. I hate the waiting between the test and the results -- so I think sleep is a good way to go for the moment.

Love the picture!

[CraiginPA]

FYI, I read somewhere a doctor wrote that the right amount of biopsy material to get these days is a "boatload." Obviously an exaggeration, but when I had my 2nd bronchoscopy biopsy, 24 samples were taken, which was 2 or 3 times as much as from the first.

Best hopes,

Craig

[AnnieRSA]

Thats looking very positive Rick! glad youre getting all the rest you need.

Just out of interest...how does the lung "collapse" and what happens after? Does it mean that lung is then useless after it collapses? Is there nothing that can be done to undo the collapse?

Sent from my iPhone using Tapatalk

[ToBeGolden]

I'm going to take a shot at explaining a collapsed lung; then I will look the information up and correct my explanation if necessary. (I know that's backwards; but very me.)

Under Normal Non-Diseased Conditions: The lungs sit in the chest cavity. When the diaphragm moves down, the volume of the chest cavity increases, and the pressure exerted by the air trapped in that cavity pushing on the lung decreases. Since the pressure pushing on the lungs from the chest cavity is less than the pressure of the atmosphere air arriving from the mouth nose, air flows into the lungs. The chest muscles provide the force to push the air out of the lungs.

Under Best Conditions: The hole made by the needle biopsy heals immediately. However, sometimes the hole does not heal, so there is a leak between the air spaces in the lung and the air of the chest cavity. Under these conditions there is no pressure difference between the pressure at the mouth and the pressure pushing on the lungs. In other words, the pressures inside the lungs "leaks" through the hole making the inside and outside pressures equal. There is no pressure difference to force air into the lungs.

If the patient has two marginally good lungs (which was my case), the patient can breathe with the unaffected lungs. (No sports activities.) After all, a lung is removed for some cancer patients.

The pain is very well controlled with a small amount of hydrocodone; pain was not a problem at all.

I had a chest tube from which a small amount of blood and gunk was leaking for about a day. I will need to ask whether the tube was in the lung or just in the chest cavity. My guess it was in the chest cavity.

The hole in the lung heals, like any wound. And the lung works once again.

I didn't notice anything. However, I was on 2 litters of oxygen while in the hospital. So I guess the extra oxygen compensated for not have one lung functional for a time.