#38177 02-08-2005 05:50 AM | Joined: Jan 2005 Posts: 10 Member | OP Member Joined: Jan 2005 Posts: 10 | Hi all,
My 73 year old mother had a tumor removed from her tongue about a year ago and followed up with radiation. It took her P.D. around 4 months to figure out the pain in her ear was not an ear inffection. The E.N.T. had recommended a neck dissection but the radiologist said he thought he could cure it with radiation and that chemo was not necessary. The cancer spread to her lymph and neck area. She had a neck surgery to remove a tumor the size of a fist two weeks ago. They were able to remove ~95/97% of the cancer but could not remove it from within her neck muscle and artery area. The surgeon said she should have more radiation/chemo to try to kill off the remaining cancer. My concern is that the radiation did not seem to work very well the first time. She had it done in Orlando and I am thinking of getting her in a comprehensive cancer center where they may have better treatment and possibly some more advanced options for her next treatment but we are not sure of what to do.
Her current radiologist seems very competent but we want to expore other options. He says he can treat again with more aggressive radiation and maybe some chemo, (he thinks she may not be able to handle much chemo)
Thanks in advance!
Rick | | |
#38178 02-08-2005 06:23 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hello Rick, I am saddened that her primary doctor couldn't have found that out sooner, given her history.
The best long term statistics suggest that a comprehensive cancer center is the way to go. That said you may find that what her radiation onc. is suggesting is in fact the same as what a CCC would suggest. You will only feel better if you get that second opinion. My only concern is that you move quickly on getting that second opinion.
Radiation is effective, I wonder if her recurrant cancer occured outside the area previously treated with radiation?
In any case I wish her and you well.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#38179 02-08-2005 06:29 AM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 261 | I'm so sorry for the roller coaster ride you folks have experienced to date. By all means possible get to a major comprehensive cancer center now! They'll have seen more of this type of cancer & be able to draw from a wider base of experience. Stay with us & let us know how she's doing. Erik
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#38180 02-08-2005 07:40 AM | Joined: Jan 2005 Posts: 10 Member | OP Member Joined: Jan 2005 Posts: 10 | Thanks very much for the input!
I believe the re-occurrence did happen where she was previously treated with rad. The one thing that I was wondering about was if the fact that she chose NOT to have a mask made could have comprimised the effectiveness of the rad. They taped her down for the treatments.
We found a satellite office for M.D. Anderson in Orlando and we will be getting her in there for a second opinion very soon if all goes well!
Thanks! Rick | | |
#38181 02-08-2005 10:41 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Dec 2003 Posts: 116 | I was treated at Moffit Cancer Center in Tampa, if you want a second opinion I recomend them and they are in the top 10 centers in the Country.
SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
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#38182 02-08-2005 12:07 PM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | Rick, welcome to the site. Another possible center is the Sylvester Cancer Center at the University of Miami Jackson Memorial Hospital in Miami. It is a distance from Orlando, but they have a free housing center on site. It is another alternative if Tampa or Orlando won't meet your needs.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#38183 02-18-2005 10:32 AM | Joined: Jan 2005 Posts: 10 Member | OP Member Joined: Jan 2005 Posts: 10 | Thanks all for the info!
She had her second surgery at Selvestor Cancer Center. We now have her setup at M.D. Anderson CCC in Orlando, (we receltly learned they have a facility in Orlando). We feel she has had good treatmeant but she will be better off for her Rad/Chemo in a CCC. It seems like M.D. Anderson really tries to focus on each patient as an individual and they say they have con. calls 2 times with Houston and review patient status and treatmeant.
The cancer that returned was in an area previously treated with Radiation. After meeting with the first rad. onc we decided to switch to M.D. Anderston becaue he is not at a ccc facility and we felt that the first treatmeant was based on his own feeling as opposed to a group approach etc.
I hope we made the right choice to switch.
Thanks, rick | | |
#38184 02-18-2005 11:10 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2002 Posts: 546 | Rick,
I think you are on the right track with getting a second opinion at MD Anderson. I don't know if not having a mask could have compromised your mother's treatment or not, but I do know that Mark's statement about radiation being effective is not entirely correct. It is true that RAD is effective ........most of the time. Some tumors are just RAD resistant. As we were told by both the RAD oncologist and the surgeon after Heather's death, you can blast some tumors to kingdom come and back and they will still not be eradicated. They believe that Heather's second tumor was growing the entire time she was receiving her RAD treatments. Adding chemo to the treatment regimen makes the tumor more receptive to the RAD, thereby making the RAD more effective.
Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#38185 02-18-2005 03:22 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Rick,
I'm not sure whether the lack of a mask would have made a difference. My understanding is that masks weren't even in use when I had radiation (I know I was never given the option), but the treatment still turned out to be pretty effective for me. I suspect it's along the lines of what Rosie said about some tumors being more resistant.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#38186 02-18-2005 04:36 PM | Joined: Jan 2005 Posts: 10 Member | OP Member Joined: Jan 2005 Posts: 10 | Thanks for the info everyone!
I forgot to mention that the most recent pathology report indicated that only one lympth node had cancer and that it had grown to a large mass the size of a fist. The Dr. at MD Anderson said that this node probably had the cancer all along.
Either way it is still worriesome that the RAD was not effective. I hope MD Anderson can come up with a more effective treatmeant.
We are all very hopeful. Mom is feeling much better. I heard the cancer takes alot out of you by your body trying to fight it off.
thanks, Rick | | |
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