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PET -> Lung Cancer?

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Today's PET showed new stuff in the lungs. 2 or 3 very small and hot specks. So I don't feel bad about vomiting in their machine (from the contrast). However, when I mentioned my recent pneumonia to the medical oncologist, he said recent pneumonia is a good sign in my case. In other words it could be pneumonia.

My voice prosthesis is leaking intermittently. I know this because my mucous (from the lungs) are now and then dark brown after drinking coffee. (Not always: most of the time the mucous is clear even with coffee intake).

The immediate plan is (1) another round of antibiotics, (2) fix the leak in my neck between esophagus and trachea, (3) ReScan about 8 weeks after the first two items are resolved.

I would like to know your experience with a voice prosthesis. How long in your experience before they leak? What type of prosthesis? Anyone have a Provox NID?

Rick.

PS. I would also like to hear from patients and caregivers who do not have a voice prosthesis.

Ladylacy
Posts: 474
Joined: Apr 2012

My husband's PET/CT scan showed fluid in his lower right lung with some uptake. We were told that the radiation could have caused the fluid. Since he is feeling better (had something like a stomach virus that took a lot out of him) and not having any problems with breathing, we elected not to do anything about it right now but to check it again in a month, they wanted to drain it right away, without further checking it out and since Joe had been sick for about 2 weeks before his PET/CT scan and I didn't want to put him thru the procedure of having it drained if not needed and besides that his blood tests were good (3 of them since 9/13).

He had a laryngectomy in March 2011 and elected at that time not to have a TEP. Then in April 2012 he decided to have the TEP and when they went in to do the puncture they found a tumor at the cervical of his esphoagus. Told not really operable due to location, prior surgery. He underwent another 35 radiation and 7 chemo treatments and then the PET/SC which showed the fluid. Our cancer specialist told him we could revisit the TEP once he is healed from this round of treatment but my husband has elected to forego the TEP due to all the radiation and once again his throat is closed off. He will undergo a procedure next week to try and open his throat and for the doctor to look around and make sure there are no small tumors that the PET/CT didn't see due to inflammation.

Reading all the problems some people have with the TEP and leakage and aspiration, he has decided that the EL is just as good, never a big talker anyway. But then again a lot of people have no problems with the TEP and do just fine. We belong to a group called webwhispers and they provide a lot of information and good help, just like here, but is a laryngectomy group.

Best wishes, Sharon

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

And you are in mine that the hot spots are only residual from the recent pneumonia.

Always,
John

katenorwood
Posts: 1821
Joined: May 2012

Rick,
I have been scared out of my mind several times by doctors and reports on Pet scans. I have learned that being sick....head cold, pnuemonia, arthritis Ect. can show spots that are suspicious. My rule of thumb with my dx is....always follow up with CT or MRI. And if things are still leaning towards the c, biopsy for specifics. Praying all improves soon for you...darn pnuemonia is a pain ! Katie

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I would like to suggest to your laryngectomee husband that he attempt esophageal speech from time to time. I attended the Pacific Northwest Larygectomy Conference (as a patient), and was told back in the 50's and 60's (before electro larynx and TEP's) about 60% of laryngectomees obtained useful esophageal speech. Today the number is 1%. (It is much like the SpellChecker preventing the younger generation from learning how to spell.) I have developed very functional esophageal speech on my own.

I think there is little downside for trying esophageal speech. (The downside is a lot of frustration for the laryngectomee and for his/her listener.) Start by getting the FREE voice recorder from my website www.richardwalloch.com You see I have absolutely nothing to sell or promote. (My voice recorder application may not work; then, just delete it. It does not modify your computer's registry or anything else.)

Then have him try to swallow or "almost swallow" and then make any sound, like the "k" sound. Then a simple word like "cake". If he drinks Pepsi/Coke and burbs, try to speak thru the burb and right after the burp.

I really believe that if healthcare providers encouraged esophageal speech, about 60% of patients would attain it to some degree. I think the majority of laryngectomees would be able to produce limited phrases of a couple of syllables. I can easily say: thank you, excuse me, sorry, and rest room. I am also practicing the phrases that might be needed in a 911 call: fire, police, and medical.

I sorry to have become a hot-air advocate for esophageal speech. If you don't expect too much and don't get frustrated, I don't see many downsides. Esophageal speech can be developed while still using a voice prosthesis and/or an electro larynx. You don't have to give anything up to start trying esophageal speech.

And a speech therapist will probably be needed to gain proficiency, the first steps can (and probably should) be taken by the individual. No need for a therapist if the patient can't make any sound at all.

bjw1955's picture
bjw1955
Posts: 67
Joined: Apr 2012

Rick I haven't been on here for awhile, my thoughts and prayers are with you, I too have a trach, I know there not fun, but I'm thankful to be alive. bjw1955

Hard12Find
Posts: 204
Joined: Sep 2012

Can't comment on your conditions, but know we are all here for you as you have been for us. Pretty sad state of affairs when we are "hoping for" a pneumonia diagnoses......
I hope things get better for you soon.
Jim

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

I think her name here was Silver Fox or Silver Foxette. She's on FB (Roxanne Jacobs). She's on my Friends list (I'm Pamela Suzette Mullins). I think she had a similar experience with her prosthesis, but I think her leaking was her stoma.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I am not the final authority on terminology; but here goes: After a total laryngectomy, the airway is separated from the foodway. The foodway (esophagus) connects the mouth (and nose) to the stomach. The airway (trachea) connects the neck stoma to the lungs. So saying the voice prosthesis leaked into the stoma and leaked into the trachea or leaked into the lungs is saying about the same thing. I can tell the color of the fluids leaked into the trachea only when I cough them out my stoma. Didn't mean to get word picky. Rick.

CivilMatt's picture
CivilMatt
Posts: 2927
Joined: May 2012

Hi Rick,

If I had to bet a cup of coffee on it, I would lay odds on the pneumonia lighting up the scan. I hope your esophageal speech continues to improve as you wish. Now, my radiation voice doesn’t sound like anything to complain about.

Is that dog real? If it is, you should hade a big hug and some pets.

Best,

Matt

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

She was very real until about a year and half ago. I post her pic, and I use ToBeGolden as a nickname in many places on the web because I would like to imitate her personality.

Like all dogs, she would threaten what she was afraid of. So ra****s, deer (the first time she saw one) and even the first time she saw a snowman. But she would never go after a cat or a snake. She would go up to snakes and smell them but never bite. So she might threaten a malmute but a small dog could case her all over the place.

Once a neighbor's girl (about 5 years old) blew into Peanut's ear. The dog just ran away and hid in the rather thick bushes.

I almost never had her on leash. Also remarkable she learned that I picked up her poop. She might wander through the woods for many tens of minutes, but she would ALWAYS come back to the path and poop almost in front of me.

Finally, she could dive completely under water and retrieve (usually broken tennis balls) from the bottom.

We got her at an age of two from a family who could not put up with her. Too much energy. The photo was taken when she was about four and I photoshoped the background and added a light via photoshop.

I had another Golden previous to Peanut, his name was Angus. And as usual, he was generally off leash. Once a person on the next block threw a good size rock, hitting the dog in the side of the head. After a dazed moment of two, the Golden picked up the rock and brought it back to the person. Dropped the rock at the person's feet, and just sat there. What a way to win an argument!

Wish I could learn to react to hostilities (real or perceived) in this way. Rick Peanut and Angus.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

This is what I think happens a lot: A person has his dog on a leash. When they approach strangers, the person becomes frightened that the dog may jump on the stranger. So the dog's person tenses up. Dogs are very good at picking up emotions. So all the dog learns is that his/her person gets tense when approaching strangers. So strangers must be a treat. I can see people every day teaching their dogs to be afraid of strangers.

And when I said that my dog was off leash, this does not mean she was out by herself. I was always walking her, and she always knew where I was.

CivilMatt's picture
CivilMatt
Posts: 2927
Joined: May 2012

Rick,

Of course I am sorry about Peanut and Angus, but loved the stories. They will send me into dreamland with a smile on my face.

I use to have a beautiful collie named Oregon, he was the gentlest dog. After he past, I buried him on top of Yellow Stone Mountain (in the foothills of the Cascades). Now, from many locations in the Willamette Valley I can see the exact spot he now sleeps.

Best,

Matt

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