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Old 10 July 2015, 23:34
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Difficult Decision

Some here know me, most do not. I post little and read much. There is great breadth and depth on this board in many areas of expertise. In hope of reading some quality thought on a difficult subject, I will summarize my medical situation.

(Mods please move to appropriate forum if this is out of place)

After two years of neck pain, swallowing issues, and an increasing speech impediment, detailed scans revealed a tongue malignancy with possible lymph node & salivary gland involvement. A June 5th biopsy confirmed it and surgery was done on June 15th. 25% of the tongue base was removed along with lymph nodes and a salivary gland. The significant malignancy was a lymph node with a rare form of cancer (hyalinizing clear cell carcinoma) which can be aggressive. There was a perineural invasion approaching midline of the tongue.

The question is whether to go through radiation therapy to ensure the elimination of stray cancer cells. A post-surgical PET scan revealed no lingering cells, but this type of cancer, the pathologists stated, does not always show clearly.

The pathology team from the surgical hospital states the radiation is clearly necessary due to the perineural invasion and the spread to a third level lymph node. (the malignancy bypassed the first two levels of lymph nodes, indicating it may still be in transit)

A second team of oncologists and pathologists, including a leading expert on hyalinizing clear cell carcinomas, flatly recommended against radiation, stating "it is tempting to throw the book at this" but suggested the risks of radiation outweigh the risks of recurrence. Radiation, they stated, may or may not prevent recurrence but will result in loss of swallow ability, loss of teeth, jawbone damage, a permanent gastric feeding tube, and a lessened ability to withstand future surgery in the event of recurrence. Instead, they recommended physical examination on a periodic basis for evidence of recurrence.

The radiation oncologist, who has treated many salivary gland cancers, stated the radiation side effects are not as dire as stated by the other team. He stated there may be some loss of salivary glands, resulting in dry mouth which can contribute to tooth decay. Proper dental care may mitigate decay issues. Difficulty swallowing may occur, he said, but is not permanent. There will, he said, be the usual fatigue and discomfort associated with radiation therapy, but all recoverable shortly after treatment.

If performed, radiation will be centered on the neck around the base of the tongue and pharynx, which will affect the entire throat area.

Incidentally, throat cancers are generally caused by tobacco use and/or heavy drinking. I have never smoked and have never been a heavy drinker. In fact, my brother and I compared notes on family history. Due to excellent genealogical records, we determined I am the first on either side of the family to have cancer. All our ancestors, including aunts, uncles, and cousins, going back as far as several hundred years, passed from heart disease or brain hemorrhages.

I have initiated an Agent Orange claim with the VA.

Your thoughts are welcomed. The ultimate decision is mine, but I am seeking informed comment.
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Old 10 July 2015, 23:41
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FWIW I did radiation on an extremely different area than what you are looking at -- in my cancer, the team offered a 75% chance of no further issues if I just went with monitoring, and a 95% chance if I went with radiation -- it just seemed at the time, to make sense to go with the higher odds.

Good luck on your final decision....
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Old 11 July 2015, 00:02
8654maine 8654maine is online now
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Lefty, sad to hear. I hope you the very best.

First: PET scans do have false negative. Meaning they can be negative even in presence of remaining cancer cells.

Second: Hyalinizing clear cell carcinoma is, indeed, a very rare type of throat cancer. As such, a concensus on best treatment options has not been reached. The opinion has been surgical excision with or w/o radiation. Your tumor boards' opinions reflect the lack of concensus.

Third: the fact that bothers me is the perineural spread and spread to tertiary lymph node. There is a risk of metastasis with this.

Fourth: I see many folks in the ER who have complications from surgery and radiation, especially to the neck. One of the scariest patients to treat is post-neck radiation patients. They usually come in with complications related to aspiration, swallowing, breathing, ventilation and bleeding. Be prepared for a tracheostomy tube and/or G/J tube (feeding tube). This is not a rare thing or a minor thing.

Lefty, good luck in whatever you decide. If you decide to forge ahead with the radiation, make sure that the team is willing to deal with the complications and not hand you off to someone else.

Speedy recovery.
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Old 11 July 2015, 05:19
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Voice box, chemo and radiation.

Tooth issue, the VA has handed me over to local dentists and they are saying I might be looking at being put in a hyperbolic chamber (tube) for a root canal.

I have some permanent hair loss where radiation went around my neck.

Taste is coming back, some things are still odd, some toothpaste makes me sweat.

Dry mouth most of the time, water bottle is permanently stuck in my hand.

If my cancer returns, I've had my limit of radiation so it would have to be just chemo and or surgery.

I choose the most aggressive treatment because I figured that I probably only had one shot.

So far I'm still clear.
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Old 11 July 2015, 07:57
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Thumbs up

I'd most likely do what you've done---to ensure it's gone. Good luck with attacking this.
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Old 11 July 2015, 08:02
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I don't know enough to offer advice. I'll lift you in prayer.
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Old 11 July 2015, 08:06
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Thanks much for the replies.

I should have also stated - the surgery required a tracheostomy and an NG feeding tube. Since the surgery I have not been able to take anything orally. Swallow tests indicated some aspiration. The NG tube will be replaced by a gastric tube on Friday 7/17.
The trach was removed on 7/3, a great relief. If you have not endured one, it is a nightmare of deep lung suctions and discomfort.
I am fortunate to retain speech ability, although my voice is forever changed, something of a raspy Elmer Fudd (better Fudd than dead, someone wrote me)
Radiation, if we do it, must be done starting NLT 7/17.
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Old 11 July 2015, 08:29
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Whichever route you take, I pray you heal quickly.
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Old 11 July 2015, 09:14
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So sorry to hear this.I wish you the best and a speedy recovery sir.
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Old 11 July 2015, 09:17
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Best of luck with your recovery Lefty. The SOCNET family will be pulling for you.
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Old 11 July 2015, 09:19
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No advice to offer, but my best wishes to you for a full and speedy recovery.
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Old 11 July 2015, 09:44
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Prayers out for a full and speedy recovery.
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Old 11 July 2015, 09:48
8654maine 8654maine is online now
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Lefty,

Glad the Trach tube was removed. So you can breathe OK through your nose and mouth?

When you get the G-tube, I suspect that you'll get it via PEG procedure.

If you decide on radiation, you'll get a rough, thick skin patch around the neck. It will look like a bad sun burn on a chronic smoker. Just a side effect of the radiation.

If your test showed aspiration, avoid the temptation to eat. You do not want to add Aspiration Pneumonitis to your complication.

I would also carry your most recent Medical condition, surgery, and medications on a piece of paper/file card and carry it with you everywhere. EVERYWHERE. You never know what may happen.

Also, IF you get into a medical condition and have to be transported to a hospital, try to get EMS to take you to the hospital that has your specialist/doctors. It will likely make your care much smoother for you.
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Old 11 July 2015, 10:41
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Yes, I am breathing easily, able to speak (that was not a sure thing), and can sleep okay.

Fortunately the surgical/oncological team who have treated me also staff the VAMC where I would receive radiation, therefore I would have the same doctors throughout the process.

We also have argued strongly for copies of all reports and records, which we have received and kept. HH6 maintains a briefcase of all reports from initial scans to biopsy to surgery to post-op to current recommendations. The briefcase stays with us as you recommended. We never give anyone a copy of anything without retaining our own.
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In every organization there will always be one person who knows what is going on.
This person must be fired.

"For the mission, then. As long as he functions, I will humor him."
"If you don't humor him, you may find out how well he functions."

Last edited by Lefty; 11 July 2015 at 10:52. Reason: Added comment.
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Old 11 July 2015, 11:14
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Lefty- I wish I had some advice to offer, instead, best wishes and you are in our prayers. Good luck and speedy recovery brother.
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Old 11 July 2015, 15:48
Chesie Chesie is offline
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Lefty,
This advice comes from a surgeon familiar with the issues you are currently facing. If I understand correctly, You underwent partial glossectomy, with radical neck dissection on the affected side. If that is the case, I agree with your surgical team that adjuvant radiation therapy is not advised.
Most head and neck cancers are very sensitive to radiation and chemotherapy, so much so that for many locations surgery is only performed for failure of chemo-rad. However, most head and neck cancers are not clear cell rumors. Yours is pretty rare and less sensitive to radiation. Surgical excision remains the treatment of choice, especially at tongue base, involving submental salivary glands. If advanced, neck dissection on the involved side is also done.

There is no consensus that radiation after surgery is helpful in clear cell cancer. However, it is well established that radiation after radical neck dissection carries a whole list of long-term problems. Permanent swallowing difficulty, aspiration and dental decay are common. Less common, but causing catastrophic short-term problems, would be carotid artery rupture from radiation arteritis. I took care of one gentleman who developed this, and it was not a pretty way to go.

From what you described, I would not get radiation if I were in your shoes. It sounds like your surgeon cleaned out all the cancer. If, on the other hand, you did not undergo a neck dissection, then radiation treatment would be a reasonable follow-up treatment with a far lower risk of long-term complications. You can do a neck dissection or radiation, but doing both is entering the realm of diminishing returns.

Good luck!
I wish you an uneventful recovery. As an aside, the feeding tube likely won't stay in for long. Once you have healed from surgery, you will likely stop aspirating and be able to eat.

Regards,
Danny
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Old 11 July 2015, 16:03
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Quote:
Originally Posted by Chesie View Post
Lefty,
This advice comes from a surgeon familiar with the issues you are currently facing.....
Hear, hear.

Wish you the best Lefty.
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Old 11 July 2015, 17:21
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Nothing to offer other than hoping for a good recovery, Lefty.
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Old 11 July 2015, 17:28
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What a heartless bitch cancer is. Prayers out, Lefty.
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Old 11 July 2015, 18:20
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No advice, but well wishes and prayers.
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