| Joined: Jun 2004 Posts: 30 National OC Advocate/Speaker Contributing Member (25+ posts) | National OC Advocate/Speaker Contributing Member (25+ posts) Joined: Jun 2004 Posts: 30 | Gina, Dr Urken was my surgeon. He is the best in the world! I'm not just saying that. Sleep well knowing you are about to meet the man who will give you your life back in the best way possible. Be prepared to not be seen until 10PM. Seriously. Bring some snacks with you and a good book. You will be waiting. Dr Urken spends as much time a patient needs, and ALWAYS is late on patient day. In addition to being probably the world's expert in head and neck surgery, he is a stellar human being. He will give you his cell, will respond to messages, and I don't think the guy ever sleeps. He is saving lives. And, he will save yours. On July 12th, you will be filled with hope! | | | | Joined: Oct 2005 Posts: 47 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2005 Posts: 47 | Wow Eva, thanks so much. I did hear good things from my doctor at Johns Hopkins, but nothing like this. Honestly I have been struggling with keeping up my optimism, some days i am ok. Other days i am not sure i have the strength. I guess its the same for all of us. I am going to let my support circle of family and friends know what you said. I am sure it will help them as well.
love and hope to us all..
Gina
scc 4/2004 r side tongue, flr of mouth. neck disection,4 lymph nodes 34x rad,3X chemo 10/2007 r cheek. remove w/graft. 40 HBO dives. 01/2010 r cheek. surgery w/graft 04/2010,surgery remove lower right jaw, reconstruct. 4x chemo 25x rad. clear margins. pet 8/2010 clear July 2012 right side bot cancer. surgery to remove, clear margins 4/2013 Surgery to remove cancer in lymph node near thyroid, clear margins 6/2013 start of rad 25X Chemo 7X
| | | | Joined: Jun 2004 Posts: 30 National OC Advocate/Speaker Contributing Member (25+ posts) | National OC Advocate/Speaker Contributing Member (25+ posts) Joined: Jun 2004 Posts: 30 | I have asked Dr Urken on several occasions about who he would recommend in different parts of the country for what he does...he is always hard-pressed to give me an answer because he feels there is no one who has the skills and experience he has. He trains surgeons around the world. He developed the surgery itself. He is young enough to still have his dexterity, but old enough to have more experience than anyone else. I wish docs out there would be able to say, "I can do this surgery but I know someone better for you." Each surgeon has a specialty these days, and if they don't, they just can't be as good as someone who does. I'm glad your surgeon finally said it! | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | One foot in front if the other - you will get through this try not to lose hope it truly effects you're healing and potential to heal, recover and bea his. Eva- you're fantastic... It's so awesome to know Gina will be in amazing hands... Expecting great news after your appointment. Hugs!
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: Oct 2005 Posts: 47 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2005 Posts: 47 | My doctor got his training from Dr Urken, said he was the best of the best and had always promised to send me to the best place and doctor for me. My doctor is a very good surgeon, i have always felt secure placing my life in his hands. He said he needed to get me out the this atmosphere to a better place (I had a bad meeting with a doctor at hopkins).
Cheryl you correct of course, losing hope will effect my healing. You guys have been great. I feel good.
Gina
scc 4/2004 r side tongue, flr of mouth. neck disection,4 lymph nodes 34x rad,3X chemo 10/2007 r cheek. remove w/graft. 40 HBO dives. 01/2010 r cheek. surgery w/graft 04/2010,surgery remove lower right jaw, reconstruct. 4x chemo 25x rad. clear margins. pet 8/2010 clear July 2012 right side bot cancer. surgery to remove, clear margins 4/2013 Surgery to remove cancer in lymph node near thyroid, clear margins 6/2013 start of rad 25X Chemo 7X
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Eva, thanks for responding to Gina. I knew you really liked your surgeon, but didn't know about his background. I certainly hope I don't need anymore surgeries in the future, but if I do I will consider Dr. Urken.
Gina, I'm glad you are going to see the best of the best! Let us know what he recommends! Keep the positive thinking and hope -- it does help!
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: Oct 2005 Posts: 47 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2005 Posts: 47 | thanks Susan and Eva and everyone else who replied. i will go to sleep tonight having more hope and not feeling so alone. As much as my family and friends love and support me, they can't know what it is like. thanks again.
love and hope to us all Gina
scc 4/2004 r side tongue, flr of mouth. neck disection,4 lymph nodes 34x rad,3X chemo 10/2007 r cheek. remove w/graft. 40 HBO dives. 01/2010 r cheek. surgery w/graft 04/2010,surgery remove lower right jaw, reconstruct. 4x chemo 25x rad. clear margins. pet 8/2010 clear July 2012 right side bot cancer. surgery to remove, clear margins 4/2013 Surgery to remove cancer in lymph node near thyroid, clear margins 6/2013 start of rad 25X Chemo 7X
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | i wish Ron was more into looking at other docs and second opinions but he said he is done...I told him I am NOT but Doc says it is his choice...
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
| | | | Joined: Oct 2005 Posts: 47 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2005 Posts: 47 | hello suez, i can understand ron saying he is done with other docs and second opinions. just don't give up on him. he may change his mind. It is his choice, you can't make him to go other doctors. I know you wish you could, If i were in your position I would. My best friend died of AIDS about 5 years ago and i felt he had sorta given up on doctors and opinions the last two years of his life. I couldn't do anything about it, but support him. When i could push him and talk to him i would, but if he didn't want to hear it i backed off. I just loved him and supported him.
Gina
scc 4/2004 r side tongue, flr of mouth. neck disection,4 lymph nodes 34x rad,3X chemo 10/2007 r cheek. remove w/graft. 40 HBO dives. 01/2010 r cheek. surgery w/graft 04/2010,surgery remove lower right jaw, reconstruct. 4x chemo 25x rad. clear margins. pet 8/2010 clear July 2012 right side bot cancer. surgery to remove, clear margins 4/2013 Surgery to remove cancer in lymph node near thyroid, clear margins 6/2013 start of rad 25X Chemo 7X
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Funnygirl, I just got a claer scan from the University of Pittsburgh where I went for a third round of radiation after a recurance. I had the University of Michiga, MD Anderson and Sloan Kettering look at my condition and they all said surgery was not an option and I had too much previous readiation to consider more. They all said I could get chemo to slow things down but I was looking at a terminal condition. The University of Pittsburgh has a trial they have been running for 4 years using cyberknife radiation w/ Erbitux. Given the alternativs I went with Pitt. I had four sessions of Chemo and five of cyberknife over two an a half weeks. The Doctor running the program over there is Dr. Robert Ferris. You can find him on the UPMC website. Have your doctor send Dr. Ferris your records and he will let you know if you qualify for the trial. It worked for me. Hope this helps.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
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