| | Joined: Jun 2010 Posts: 38 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jun 2010 Posts: 38 | I am 9 weeks post surgery after having a semi-glossectomy and freeflap. I had IMRT, 7000 rads, and Cisplatin ending back in June 2009 after a neck dissection. I had another previous surgery Jan 2008 for a partial glossectomy when I was first diagnosed.
I just had a clear MRI 2 weeks ago.
My surgeon and chemotherapy doctor tell me I should be aggressive as I can to prevent yet another reocurrance.
The radiation doctor is now not really recommending brachytherapy because of the clear MRI. He said the side effects are pretty bad and the treatment would compromise my quality of life much further.
I was wondering if anyone could share and insights.
Unfortunately, my insurance limits me to my local area.
Thank you so much!
'08 SCC Rt tongue,part glossect.
'09 Rt neck dissect, 3 Cisplatin, 35 rad.
Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue.
Oct '12 SCC prev stoma site. SCC inside trachea.
Nov '12 total larengectomy, addl neck disect, pec flap
Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones
How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | I would get a second opinion if possible - a clear MRI is great but I'm an err on the side of caution.. Kind of girl. Good luck!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Cindy,
The decision process to proceed with any treatment plan must be based on the "risks and benefits" of the proposed procedure. "Quality of life" is part of this consideration.
It would be very helpful to have a clearer understanding of the chronology of events (particularly the staging(s). I also am assuming that your cancer was base of tongue. BOT is a very aggressive cancer, unlike cancer in the lymph tissues, such as the tonsils, the tongue is very tough and muscular. Unless your initial staging was stage 1, you probably should have had radiation in the beginning. Now 2/3 of your team is recommending BT. Your medical records can be bundled up and sent to a CCC for review , and as Cheryl recommended, if it were me, that's what I would do.
A clear MRI is certainly good reason for hope but, if it were me, I would want a PET/CT as an additional precaution. Unfortunately, the short time after surgery is probably not going to be accurate and may yield false positives because of the healing from the surgery.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Jun 2012 Posts: 11 Member | | Member
Joined: Jun 2012 Posts: 11 | Hello: I see a reference to sending records to "CCC" for another opinion. Who/what is CCC? I am brand new to this forum and am posting to find info. for my elderly father (83, somewhat frail, with only the "gift of gab" left as one of his main pleasures, and not too keen on making "a big fight" to live a long time at his stage in his life. His diagnosis is T2N1MO squamous. We have asked for alternatives to traditional protocol of partial glossectomy to save his tongue for a while. THey are recommending radiation and brachytherapy and possible surgery for lymph in neck. We would like 2nd opinion asap and to find who are top doctors/clinics in this treatment. My father gets his care at Kaiser in Redwood City, cA. NOt the best in many ways, except supposedly Dr. Subir Nag is a world expert in brachytherapy and he is at Kaiser here (background: http://permanente.net/homepage/kaiser/doctor/subirnag/) thank you so much! | | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Hi Boomboom - CCC = Comprehensive Cancer Center. A list of the best cancer hospitals is listed here: http://www.oralcancerfoundation.org/resources/cancer_centers.htmAlso there is a ranking of hospitals here that you could check out: http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/At the above link, you can also find one close to you by typing in the city or state in the box provided.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | If you are unsure of the abbreviations, check out the following list. Once you have posted a few times you will pick them up easily. List of abbreviations
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jun 2010 Posts: 38 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2010 Posts: 38 | Just wanted to follow up on my post of last November. I went to Hosp of Univ of PA for further evaluation. Wonderful doctors and facility. I had 6000 rads to right neck and a course of Eribitux. I then went to Beth Israel Hospital in NYC and had Brachytherapy to my tongue 3 weeks later. I was very pleased with the treatment and so far the outcome of all of this has earned me a clear PET/CT and MRI after 3 months post treatment. I continue to be monitored closely. The brachytherapy, although sounding grotesque, wasn't that bad at all and other than tenderness, healed quite rapidly. I continue to take speech therapy to "fine tune" my deficiencies and will return part time to work in a few weeks. I feel very blessed.
'08 SCC Rt tongue,part glossect.
'09 Rt neck dissect, 3 Cisplatin, 35 rad.
Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue.
Oct '12 SCC prev stoma site. SCC inside trachea.
Nov '12 total larengectomy, addl neck disect, pec flap
Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones
How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | That is wonderful news Cindy! I never knew anyone who had the brachytherapy and I'll admit that procedure scared me. I'm glad to hear your report on it and thrilled for you that you got clear scans! I'm sure you are relieved!
Enjoy you time off from work and take it easy when you go back! Hope to see you soon to celebrate!
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Congrats Cindy!!! Ive watched you go thru this every step of the way. You certainly did not have an easy time of it, even spending many days in a rehab facility. So happy you are now in the all clear. Sorry Ive been so busy lately that we havent gotten together very much. Time to celebrate your successful treatment and scans!!! Congrats!!!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | |
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