Hi, it's "What-If-Melanie" here ...

As you well know by now, my Danny is in remission, but I'm always waiting for the "other shoe to drop"... like an idiot... and still posing my "what if" questions periodically related to recurrence and such.

Danny was not diagnosed with tongue base cancer until AFTER his ballooned, infected (abcessed), and excruciatingly painful right neck nodes were surgically removed about seven days after initial presentation. This surgery took place after a week of being hospitalized and receiving one antibiotic after another... without relief, and without a clue as to why the nodes were infected and he was so sick and feverish. They did not know it was cancer until the Lab reported "poorly differentiated" cancer cells (SCC) laced throughout the excised mass, which was so full of infection that it was apparently difficult to say just how much was cancer mass and how much was pus. (For this reason, Oncologists actually had a hard time determining the stage of the neck disease... or the actual size of the cancer mass... but ultimately labeled it N2.) Once the excised nodal mass was determined cancerous, Dan's medical team began looking for the primary and quickly discovered the base of tongue tumor... "about the size of a thumbnail" and it was staged "T1, bordering on T2". His cancer was considered "locally advanced", if I recall.

Anyway, because the nodes had been surgically removed (before they knew cancer was present), we were informed by his ENT and Oncologists that Danny would not be a candidate for neck dissection. Knowing that a neck dissection (along with chemo/radiation) is an important procedure in helping to ensure the cancer is thoroughly "gotten" and reduces the chances of later recurrence, I wondered then (and still do) about the significance of his not being able to have dissection done. It has worried me a great deal.

Question... Do you think Dan's chances of 2-, 5-year survival may not be as good considering a neck dissection could not be performed in his case?

I know that his medical team (probably realizing that cancer may still remain in the neck, or elsewhere, after the nodal excision), did devise what seemed a particularly aggressive treatment plan for Dan... 52 radiation treatments (twice daily, although he could not tolerate but once daily after about two weeks in), coupled with 4 separate weeks of in-patient around-the-clock chemo... 5FU and Cisplatin. His medical team informed us that, because Dan was otherwise healthy, stocky and fairly young (51), they felt he could endure the treatment plan. "We're going to put you through hell and back... but our goal is to cure you."

I've also wondered if it was unusual for him to have so much chemo. (A lot of people do the outpatient chemo treatments at a day-clinic and go home at night.) I have often wondered why Danny received so much... day and night for a week at a time. Do you think it was because a neck dissection could not be done, and perhaps they thought it was his best chance under those circumstances? Dan suffered toxicity in a big way and was in the hospital a lot as a result. (In fact, he spent 62 total days in the hospital throughout and just after the course of treatment because his system was so radio/chemo-poisoned.) I just wonder if, because they couldn't do the neck dissection, Dan had "more than usual" amounts of chemo. And also, in receiving such, did it better his chances that any cancer cells remaining and any that may have traveled via the lymph system to distant locations were destroyed?

Our ENT considers Danny to be "cured". His confidence is much greater than mine, although I'm constantly working on "living one day at a time" and leaving the future to my God.

Questions... Was Danny's treatment plan any different than others for the same type of cancer? Was it special in any way... (to give his ENT the confidence to use the word "cured")? Would you consider his regimen "aggressive"? If so, do you think his survival chances may be increased as as result of his enduring it?

Dr. J... I realize this is long... and must apologize for dumping all this on you today... while, at the same time, hoping you will take a few days if you need to and perhaps address my questions as best you can at some point... just whenever it's convenient.

I so appreciate your role in this message forum. I am thankful for your wisdom, experience and compassion. I know other members share my appreciation and admiration.

THANK YOU SO MUCH!

Best regards,

Melanie

Hello Melanie

I am sure the treatment provided was the best thuoght appropriate for Danny in that circumstance. You will need to ask Danny's oncologist for specific answers.

Best wishes
Vinod (going on holiday tomorrow )

I think your Danny has had a tremendous regimen of treatment which gives him EVERY chance of survival.
It is well known that giving a combination treatment of RT and chemo together increases overall survival rates. The chemo increases the sensitivity of the cancer cells to the RT. As for mopping up in other parts of the body it's best to ask your oncologist. But as chemo is systemic I should imagine it's quite possible - but it's the enhancement effect during RT which is it's main reason for being used.

I wish I had had chemo with my RT. I found the RT very hard - but at the time you will do anything to increase your survival rate.
Why wasn't I given it? COST? - probably - but no one will admit to it.

I had a lymph gland enlarge v quickly over 4 days. I felt very ill and feverish at the time.
I am sure the GP thought it was a lymphoma but my bloods were normal. My feverish symptoms slowly eased after 3/4 weeks.I was overloaded with antibiotics but it remained enlarged for many months- obviously so - until it was removed. -
It was removed 6 MONTHS LATER. My cancer was v. extensive and had burst out of the lymph glands at the top of my neck. I had felt terribly ill again.
The feckin' NHS really let me down on this one.
The Bastards!
I had a radical neck dissection followed by 33 sessions of RT.
Why didn't I get chemo - given my circumstances I should have I feel. What are MY chances!

Good luck to you and Danny

cheers - Tony

Nice to hear from you, Tony. Thank you so much for your thoughts and insight.

I suppose anyone who's been through cancer treatment can question and second-guess it many times over, but what's the point! What's done is done. I'm just a deep thinker and tend to analyze and over-analyze every detail of matters that are important to me... to the point I'll one day drive myself batty for sure! So, who knows about Dan not getting a neck dissection... or you not getting chemo... Cancer is so damned sneaky and unpredictable... Sometimes it feels as though we are all essentially "at its mercy" -- as long as the human brain has yet to figure out the cure of all cures, cancer will always maintain the upper hand and call the shots. Just reading some of the new posts on this site in the past day or so... The 23 year old whose cancer has returned after 3 years... The dear lady who recently buried her husband (after his cancer returned). I'm just growing increasingly tired of feeling the looming dread, lack of control, the powerlessness where my Danny's health is concerned. Instead of being happy about his remission... I seem to be constantly steeling or bracing myself, preparing my psyche for the "other shoe to drop" (the "inevitable"?)... just so that I might not be so completely devastated should the cancer come back. I feel almost like, by letting myself be too content or relieved or carefree or happy... I am letting my guard down... and then, if Dan does have a recurrence, I will not be ready or able to take it, and may completely lose my poor mind the second time around! Does any of this make a grain of sense, Tony, or am I nuts anyway!??

Thanks for caring,

Melanie