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cancer spreading through tissues?

4harry
Posts: 5
Joined: Sep 2011

Has anyone had chemo, radiation, got a clean ct scan and it came back twice? Husband had two neck surgerys. Surgeon said it was in the tissues...started out scc with 1 tonsil that spread to neck and was around 9cm conglomerate with tumor being 4 or 5 involving couple of nodes. Now we are playing the waiting game while his surgery scar has an open wound from the radiated skin and trismus of the jaw! Does anyone know if there is a lifetime radiation limit...doc said he gave him all he could, which was 30 treatments. I noticed lot on here had 35 to 40 treatments. Any advice greatly appreciated!

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Welcome to the forum.....great people here.

I have never heard of it spreading through tissue...lymphnodes and blood though.

I'm not an expert on radiation, though I did get 35 doses which is pretty common. I know that I have heard, that they usually only do a specific area (such as H&N once)... Though I do beleive there are a few here, HONDO being one, that received rads twice in the same area...though he has pretty much paid the price with jaw problems.

Someone with more knowledge or experience will chime in soon..

Best,
John

4harry
Posts: 5
Joined: Sep 2011

Thanks for the welcome John,

I thought it sounded strange to when his cancer appeared for the second time and the radiation doctor said some of the cells must have escaped and caused a tumor to start growing in his saliva gland and he had to have a second surgery! Thought all the 30 chemo and radiation treatments would have taken care of that. Trying to get him to get second opinion. It's been a long 18 months now. Ready for some encouragement!

Thanks again,
Shirley

KTeacher
Posts: 891
Joined: Jan 2011

Sorry to hear that you are dealing with more cancer. I too had a reoccurance. Aug. 2010 I had surgery on my upper lip, 1 inch was removed, 50 stitches, amazing what the doctors can do. I had radiation. Never really got a NED but where the cancer popped up in June was not seen on PET. I had one lymph node on the left side of the neck, opposite side of my head as last year. Very rare to have been on the opposite side. I have a spindle cell variant and I had perineural involvement last year. I had a neck dissection July 22 and I am finishing my second week of radiation. I can't have radiation where I had it last year so it took awhile to calculate where I would get zapped this time. Non drinker (except for all of the water now!) non smoker and HPV-. I really put the abi in abi-normal. Where are you located, do you have a large cancer center in your area?

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

You are Abi-normal with a capital A - don't recall seeing anyone else here who was non-smoker, non-drinker, HPV negative. I am HPV negative, but I did smoke and drink years ago. I was obese at diagnosis - I often wonder if that played a role.

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

I have not had a recurrance (I had "dirty" PET and CT because one of my lymph nodes did not respond to treatment, not a new tumor), but there are folks here (and some on the Oral Cancer Foundation support site) who have had multiple recurrances. I also don't know much about limits for radiation, but have heard folks talk about "lifetime maximum" and not being able to zap the same area twice - have also seen folks (like Skiffin, I'm talking about Hondo) who HAVE gotten radiated twice in the same area.

I've heard trismus is rough (again - yoo hoo, Hondo). Has your husband been given exercises to do to combat it?

As for having 30 vs. 35 or 40 radiation sessions - it's my understanding that 72 grey (if I recall correctly) is "the limit" - and most of us here got 35 sessions adding up to a total of 72 grey. Your hubby's average amount per day may have been higher than mine, so instead of my 35 sessions, he'd only need 30 to reach "the limit" at the last session.

Hondo's picture
Hondo
Posts: 5655
Joined: Apr 2009

I am very sorry to hear this but don’t give up hope, the body is an amazing machine in what is can take and still come back again. I had radiation twice to the same area of the head 6 years ago and I am still here and doing well. The first time was 63,000rads and the second was 84,000rads it comes with a price but life after is still just as good.

On the Jaw you will need to start using a Jaw device to help keep it open the sooner you start the better. There are two I recommend, a theribite or a Dynasplint both will help him to keep from having the problems I live with everyday.

http://www.craniorehab.com/therabite-jaw-motion-rehab-system.html?gclid=CJrk7ajWkasCFetdTAodjgm6tQ

Wishing you both well
Hondo

mixleader
Posts: 267
Joined: Oct 2010

Hi, Shirley. Something very similar happened to me. I had right parotid cancer and I had surgery to remove the gland and some adjoining lymph nodes. The gland was cancerous, but the lymph glands were clean. I then had 30 radiation treatments to the right side of my face and neck to hopefully prevent any spread and we were confident that maybe this nightmare was over. About ten months after the rads ended, I felt another tumor in the same area and my ENT removed it and found it also to be cancerous. How the heck did this thing survive the radiation? I saw a chemo doc at that time and he recommended no action because this very rare form of cancer tended to be resistant to chemo anyway. So, we hoped for the best. But, a PET scan in July showed cancer spread to my lungs and my lower back. So, now I start chemo for this next week. I guess sometimes things go wrong even with good decisions. I still wonder if there were things I should have done differently, but vision through the retrospectoscope is always 20/20. Oh, yes there were clean scans mixed in with all of this to give us hope and then the bomb fell about the spread. I wish you luck and I sure hope it turns out better than mine.

Roger

tesa's picture
tesa
Posts: 120
Joined: Feb 2011

Shirley and Roger,
my mother had surgery and radiation for paranasal cancer last year. 3 moths after radiation there was growth noted on her ct in an area beside the previous area. After 6 months of total mess up by the doctors in Charleston it had spread to skull base and nerves. Her cancer also does not respond well to chemo. It's one of the rarest and more difficult cancers because of where it is situated, so close to vital organs in the head. We're still praying and looking for other hospitals. She spent 6 weeks at MD Anderson this summer. God is still poweful so we have some hopeful options we're exploring.

One of the problems I think is that because paranasal is so rare, even the top doctors aren't totslly sure about how to treat it.
I hope and pray for you Shirley and Roger.

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

First of all, so sorry you are both having to endure so much. Buzz had a radical neck dissection and radiation for right tonsil cancer 10 years ago. The right side of his neck was radiated. Then last summer he was diagnosed with another primary cancer of the base of his tongue. He again had radiation to both sides of his neck with most of it directed at the left side but the right side received another dose of radiation. So, additional radiation can be given but in the words of our Radiation Oncologist: "You have to break a few rules." There may be a necessary time period between treatments. Buzz is now at his lifetime max for that area. Ask about IMRT radiation. Karen

4harry
Posts: 5
Joined: Sep 2011

Sorry I haven't got back on here but I want to thank everyone for the encouragement on this site! Starting with "Hondo", you sound like a real fighter like my husband. We live in Nashville and have been getting treatment at Vanderbilt Ingram Cancer Center. I will have to check about the total rads he was given. I think it was like 6600cGYS with IMRT. Karen, I will be praying for your husband's recovery. Tesa, how did your mom like MD Anderson Hospital? Tell her not to give up and there are different chemos and trials that might help. Roger, I will pray and hope the chemo treatments work...Larry had 3 of the "big treatments" of chemo every 4th week and then once a week with the radiation. Remember to drink plenty of water to flush it out of your system. And KTeacher, was wondering what is spindle cell variant? We were told that it was spreading through tissues but I think the radiation was the cause. I will check on the lifetime radiation limit Pam...I too have heard that. As for the trismus, we are presently trying to get our insurance to cover the therabite...they said it was NOT medically necessary! They said it was a passive therapy that was only covered if it was his knee. Doctor is suppose to call them though and we will see.
Shirley

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