#80690 09-18-2008 07:04 PM | Joined: Sep 2008 Posts: 10 Member | OP  Member
Joined: Sep 2008 Posts: 10 | Hello all, This is my first post in this forum. I am 46. I had a total glossectomy in April 2008 after being diagnosed of SCC tongue cancer. The lymph nodes were negative. Did not have radiation or chemo. Had a recurrence in July. Had another surgery on Aug 13th. Lower right mandible was removed.Again the lymph nodes were negative. Going to have rads first week of Oct. I have recently come across a website on a China cancer hospital in guangzhou, china. Claimed to have quite advanced researches in mouth cancer and the success rate for cancer treatment is quite high. Does anyone know anything about it?? Since Malaysia is much nearer to China compared to the US, I might consider seeking treatment there. Thanks. Sharifah http://hiduplama.blogspot.com
SCC on the tongue. Stage II. Total Glossectomy 04/07/08. Recurrence in July. Also Stage II. Partial Mandibulectomy 08/13/08. Radical neck dissection in both ops. All lymph nodes negative. Radiation starts 10/10/08
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Joined: Mar 2008 Posts: 404 Likes: 2 |
Hello Sharifah
I am very sorry to read about your glossectomy and then the reoccurence. It certainly sounds like you have some very strong family and wonderful friends to support you (I read your blog)
I know from my own experience and my ongoing treatments that close family and caring friends have definitely helped me in so many ways and continue to do so.
Unfotunately I am unable to assist with any information on the cancer hospital in China, hopefully someone will be able to help you regarding that. I have learnt so much from everyone on this forum over the past several months and I'm sure it will be of assistance to you to.
Karen
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | 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 |
Welcome to OCF. You will find lots of support and guidance in your journey to fight your cancer. Unfortunately I dont know of this place either. Im a bit geographically challenged.
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: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | Sharifah --
If you include the name (or the website link) of the Guangzhou hospital in your next posting, that would enable people here to do their own searches and check out its claimed success rate.
Also, when I first became part of OCF two years ago, there was a woman posting here who had been treated successfully in Hong Kong in 2001. Through the User List button at the top of each page, search for the username karenng -- clicking on her name will give you her profile, which includes her e-mail address. Perhaps she can be helpful.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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Joined: Sep 2008 Posts: 10 | Leslie, Thank you very much for your response and suggestion. Just sent her a private message. Hopefully, she'll respond. Hope your husband is ok now. Btw, the link to the website is: http://chinacancerhospital.comBye, for now. Sharifah http://hiduplama.blogspot
SCC on the tongue. Stage II. Total Glossectomy 04/07/08. Recurrence in July. Also Stage II. Partial Mandibulectomy 08/13/08. Radical neck dissection in both ops. All lymph nodes negative. Radiation starts 10/10/08
| | | | | Joined: Sep 2008 Posts: 10 Member | | OP Member
Joined: Sep 2008 Posts: 10 | Hi Christine,
Thanks for the reply. I'm sure I'll find a lot of helpful information here, in fact, I already have after going through several threads.
Sharifah
SCC on the tongue. Stage II. Total Glossectomy 04/07/08. Recurrence in July. Also Stage II. Partial Mandibulectomy 08/13/08. Radical neck dissection in both ops. All lymph nodes negative. Radiation starts 10/10/08
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | Sharifah -- That link will enable those here who have been through the full treatment process to compare what is offered at that hospital to the best practices in the US, UK, Canada and elsewhere and offer relevant comments. My husband's SCC was removed at the very earliest stage in an excisional biopsy, and he did not undergo any additional treatment. So far so good (knock on wood). As for other relevant postings, you might look for those by misskate, who also had a total glossectomy. In addition to her many replies to questions, she kept a running thread in the OCF Cancer Blogs forum about her diagnosis and treatment.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I am very sure that if the Chinese had a cure for this OC, we wouldn't have to look for their site. It would be on the news worldwide and on every TV Station. Sounds like someone is playing mind games or someone trying to make a few bucks. Better be very careful.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Having spent some time in China and touring different hospitals, the standards of care vary widely, much as in the rest of the world. The claims this hospital make don't sound that different from the claims CTCA makes. This X3 stuff is very curious indeed. I would love to see some data on its efficacy.
I have been through hospitals there that range from dirty and well worn to high rise, stainless steel, marble floors with the most advanced state of the art equipment. With 1.5 billion people, you can bet that China has a cancer problem and the government there is probably throwing much more money at it (in basic research) then we are.
Gary Allsebrook
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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)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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