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Joined: Jun 2012
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Hello:

I am new to this forum. My father was diagnosed about 1 mo. ago with tongue cancer - T2 N1 MO stage 3 squamous - left anterior/shallow. He has health insurance at Kaiser in Redwood City, CA. Since he is elderly and somewhat frail and the one pleasure he still has is the "gift of gab" we have asked the doctors to come up with alternative treatment protocols than cutting out half his tongue. Some of treatments involve brachytherapy instead of surgery on the tongue, or neck nodule surgery and brachytherapy. We are trying to find out what centers/doctors are considered tops in this treatment so that we can get a second opinion asap. We are trying to get appointments with Stanford and UCSF, although we do not know how good their doctors are at this kind of radiation. thanks so much for any suggestions.

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Hi! Sorry to hear about your dad, but you have come to the right place for answers and support. While I can't help you in the doctors suggestions area as I am from MA, I can relate to being a caregiver to a parent. It isn't easy, but is very rewarding to be able to give back after all the years they cared for us. Best of luck to you and your dad and please let us know how things go! Hugs!


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
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Hi Boomboom - I just posted links on another forum where you asked about CCC (Comprehensive Cancer Centers). You can get a second opinion at any CCC and a bunch of them are listed here:
http://www.oralcancerfoundation.org/resources/cancer_centers.htm
also rankings here:
http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/
It is important to get a second (or even third) opinion for something this important. Maybe someone closer to your area can also give you information re their own direct experience. Explore this site - see the main page and get any and all questions ready for the doctors or for anyone here. Hope everything goes well with your father. Let us know what happens.


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.)



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Welcome to OCF. You may find some info on brachytherapy by doing a search here and also on the main OCF pages. Not that many patients have gone thru the brachytherapy. I do have a good friend who first had a surgery, then her second round of rads and the brachytherapy was used as a clean up procedure to ensure the cancer wouldnt return for a 4rd time. The OCF does not recommend or refer patients to any one particular location for treatments. The best chance a patient gets is when they go to a top rated cancer center where they treat many OC patients and are more familiar with their special needs. You may get some replies from other members who prefer one facility over another.

I do understand about the choices to preserve your fathers tongue but please make certain that this is the wisest choice. Many members have come thru here with the same difficult choices to make. Some have had to relearn to speak, others relearn to eat again and others have faced major complicated surgeries. In my opinion, staying alive to beat the cancer no matter what the collateral damage should be the primary goal. I am not a doctor but have seen thousands of patients and have a good understanding of what it takes to beat oral cancer. This isnt a disease with many options, its surgery and radiation with or without chemo which will get rid of the cancer. If it were me or my father, I would want to hit it hard with everything I could to ensure survival. Oral cancer is a deadly disease which cant be taken lightly. Im sorry if I came across stern, I am looking out for all patients best interests and by going with an alternative treatment plan it could be more harmful than helpful.

Here is a list of the countries top treatment facilities.

Cancer Centers


Christine
SCC 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 smile
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Left a note in the other posting - he should be able to talk after surgery I was speaking by day 4 and eating okay by day 14. Take care.


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
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Hi boomboom,

Sorry about your situation. I am the friend ChristineB spoke of. I had surgery, chemo, rads and brachytherapy as this was my third re-occurrance. I wish I could have been more aggressive the first time, now looking back on it.
As she states, "hit it with everything you can" and get second opinions if you are not comfortable.
Best to you!


'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."
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Boomboom, I lost 75% of my tongue, and I can speak fairly well (even on the phone) now that I am 18 months post-surgery. As Cindy says, hit the cancer with everything you can the first time and hopefully it will be the last time.

I would do it all over again if I had to...I think it was the best choice: surgery (neck dissection, partial glossectomy, and tongue reconstruction with forearm flap) followed by 30 rounds of radiation.

Many of us (cheryld is also one) have had portions of our tongue removed and we are fine today..... Cheryld is doing very well -- she even went back to acting auditions, so you know she is doing & looking good !

Wishing your dad the best possible outcome whatever your decision. Private message me if you would like to chat. I know you are at the stage where your head is spinning, so I would be happy to help.


DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.

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