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#26491 06-30-2004 09:25 AM
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David,

My mom also had what her doctor called a recurrance after the first surgery. Very close to the original tumor but both my sister and I swear it was there all along. She did not get the radiation and chemo the first time around and had to endure a second surgery before the radiation and chemo.

I still think there is a possibility of IMRT for you but the radiation oncologist will know best. My mom who after her surgery with scans showed no cancer and they used IMRT to salvage saliva glands etc. With her IMRT they radiated her facial area on both sides (even though the tumors only came up on the right side) and her entire neck both sides all the way down to her breast bones. They just heavily concentrated on the area where the tumors had come up and gave those an extra strong zapping and those are the areas she had the most problems with after and during treatment but I'm pleased to say that almost 4 months after treatment she is doing well and just had a clean PET/CT scan.

I personally think that going through surgery twice for her and for us as family members sucked but there are people on the site that only had surgery and never had a recurrance. So its not really a question that can be answered as to whether or not you should get radiation.

My prayers are with you....
Dani


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
#26492 07-03-2004 06:12 PM
Joined: Dec 2003
Posts: 207
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Hi David, sorry to take a few days to get back to you -- I was out of town at MD Anderson Cancer Center in Houston this week without much access to email and Internet.

Here's my situation. I went for an appointment to see my ENT in mid-April (three months after my last rad treatment). I had a PET scan scheduled for July, which marked the six-month mark. But my ENT told me to go ahead and do a PET ASAP "for my peace of my mind." I got it done in mid-May and it showed two hot spots (obviously not helping my peace of mind much).

One hot spot happened to be nothing (at least that all my docs and other scans can tell). The other turned out to be in a lymph node in my neck, just below the area where they radiated. It was confirmed during a surgery in which they did an excision biopsy. It's amazing because no one could feel it, not even me. It was just a little tender in that area to my touch. But the doc said it was the size of a quarter...

The theory is that this likely was there all along. So in a sense, it's good news in that it didn't recur in an area already radiated. Of course, the sucky part is that I have to go through radiation again, and add chemo to the mix this time as well... two to three more months of craziness...

Let us know how your appointments go... wishing and praying for the best for you...


Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
#26493 07-04-2004 12:06 AM
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I have learned more through this patient forum and web site than all other sites combined ( at least the non-technical) ones. Thank you. And now; the rest of the story.

Pet scan was clear of 7/2. Radiation oncologist appt on 7/3 said that second small tumor (removed 5/29) that didn't show in CT scan was probably a recurrence, but the end result doesn't matter. The recurrence of untreated SCC is extremely high and radiation is recommended. In fact the entire group of doctors making up the board were unanimous in that decision following my last surgery.

Ten days ago I wasn't ready for all of this. Thanks to y'all, I was at least better prepared to say, "Go." Being fitted for the mask this week with IMRT x 30 to follow. I'll also be receiving amifostine subcutaneously for as long as I can stand it. He recommended getting trays from my dentist for daily flouride treatments and using baking soda and water for brushing. Thanks for your support. My prayers are with all of you.

David


T1N0M0 Partial Glossectomy 2/04, Recurrance w/ another P.G. 5/04. IMRTx33 7/04-9/04. T2N2M0 recurrance in throat, 11/04.
2nd tumor 1/06/05, Chemo 1/11-05 Died 02-16-05 Wife: Brenda
#26494 07-04-2004 01:58 AM
Joined: Apr 2004
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David,

Thanks for updating us on your progress. You're right about not feeling "ready for all of this". Too often with this illness you find yourself confronted with some immediate decisions about things you probably never heard of, or never knew much about before. At least it's good that you have a unanimous recommendation from your tumor board.

Best wishes and prayers as you go through this round -- I hope it puts an end to your cancer once and for all. Be careful with your nutrition and pain management as you go along -- it's really important to help get you through it. (And remember we're here for you when you need it.)

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#26495 07-04-2004 06:36 AM
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David,

Good luck with this go around with the radiation. I also had a daily shot of amifostine for all 37 treatments (they injected in the upper hip/butt area). The only "problem" I had, if you want to call it that, is that the area where they injected would become sore but I alternated from one hip area to the other each time. I still use the flouride trays that my dentist made each night and so far all my checkups with my dentist have been great. Keep us posted and I'll be thinking of you while you make your way through this part of your journey.

Nancy


Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
#26496 07-04-2004 08:29 AM
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David -- it looks we'll be going through IMRT at about the same time. Of course, this is my second round, and I kind of feel like the old pro at the hospital.

I had my second mask done on Friday and am just waiting the docs to say "go", which will probably be sometime in the next 7-10 days. I didn't have the amifostine but used saligen pills instead for saliva. My saliva held up pretty well and I am thankful for that. One of the perks of IMRT typically.

Feel free to email me or send me a PM at any time if you want to talk, vent, ask questions or whatever. I'll definitely be praying for you and praying that the radiation does its job in both of us...

Eric


Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
#26497 07-05-2004 10:22 AM
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David,

Even though your decision was tough, think of Tod Beamer and the others on flight 93 somewhere in the skies over Pennsylvania. They had little information and had to make literally a split-second decision. I am glad you have found enough information to make the best possible decision you had to make for yourself.

I am hoping and praying God will lead you to exactly what you need to fight this horrible cancer.

Ed


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
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