#23219 05-17-2007 03:06 AM | Joined: May 2007 Posts: 10 Member | OP Member Joined: May 2007 Posts: 10 | How can I find the best hospital for radiation...? Am so scared...he has THREE diffeent types of cancer...and now a recurrence of squamous cell. He is so so depressed. Has anyone had radiation AFTER surgery? Anyone BEFORE surgery... Please help... efab
Efab
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#23220 05-17-2007 04:14 AM | Joined: Feb 2007 Posts: 176 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2007 Posts: 176 | efab, I had radiation and chemo after surgery. I sent you an e-mail with my phone numbers. Please call me, I have some ideas. Rob J
6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit) 3-9-09 last of 30 HBO treatments.
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#23221 05-17-2007 04:40 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | It sounds like your husband needs to be seen at a comprehensive cancer center, where doctors from many different specialties (radiation, chemotherapy, surgery, etc.) will work together to come up with a treatment plan. You say your husband has three different kinds of cancer, so coordination of treatment would be critical. If travel time is a concern and you are in north Jersey, Memorial Sloan-Kettering in NYC is one of the premier such institutions in the world; if you are in south Jersey, check out Fox Chase Cancer Center in Philadelphia. Both are members of the National Comprehensive Cancer Network , an alliance of 20 leading cancer centers across the US. This network develops the oncology practice guidelines that represent the state-of-the-art treatment protocols. The websites for each center (there are links from the NCCN website) should offer information about making an appointment for a second opinion. All the best -- Leslie
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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#23222 05-17-2007 06:06 AM | Joined: Mar 2007 Posts: 21 Member | Member Joined: Mar 2007 Posts: 21 | Efab,
As suggested by others, I strong you pick a hospital that provides comprehesive oral cancer treatment. Sometimes it is worth it to travel far but he will get the best care. You also need the hospital that has dentists on staff as part of the cancer team (dental oncologist and maxillofacial prosthodontist). I was trained at MSKCC and I can tell you the Dental Service there is one of the best in the world. DP | | |
#23223 05-17-2007 03:43 PM | Joined: May 2007 Posts: 10 Member | OP Member Joined: May 2007 Posts: 10 | My husband is being treated at Sloan. We have confidence in the surgeon
Efab
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#23224 05-18-2007 09:09 AM | Joined: May 2007 Posts: 24 Member | Member Joined: May 2007 Posts: 24 | I HAD RADIATION AND CHEMO BEFORE SURGERY. I WENT TO THE IRELAND CANCER CENTER. THEY MADE IT SOUND THAT RADIATION WAS A BREEZE. 8 MONTHS LATER I AM STILL ON A FEEDING TUBE. I HAD A SELECTIVE NECK DISECTION ON THE RIGHT SIDE. I HAD A PET SCAN THAT SHOWED A LITTLE CANCER ON THE LYMPNOD. MY JAW WOULD NOT OPEN ALL THE WAY I AM DOING EXERCISES NOW. MY DOCTOR DID NOT REALLY WANT TO DO SURGERY HE FIGURED THE CHEMO AND RADIATION WOULD TAKE CARE OF IT. IT DID NOT WANT TO MESS WITH MY TONGUE. WELL MY TONGUE LOOKS GOOD CANNOT STICK IT OUT ALL THE WAY GOOD LUCK THIS IS THE MOST TRYING TIME I HAVE HAD.
SCC T3N1 right side tongue DX7/24/06 44 yrs old Tx 42 IMRT started 9/01/06 Cysplatin & 5fu 2x treatment ended 10/31/06. Partial neck discection 3/07 on right side. Had tracheostomy 4/08. Had total Laryngectomy 6/09
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#23225 05-19-2007 02:11 AM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Robin had radiotherapy six weeks after his surgery,and he is having terrible problems with pain and lip numbness on the side where his secodandary tumour was removed.Now you've got me wondering because his jaw has started to swell up again.
Liz in the UK
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#23226 05-19-2007 10:55 AM | Joined: Apr 2006 Posts: 378 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2006 Posts: 378 | Well, he's already at a premier CCC but you still need to have confidence in the team treating you. I can understand why you feel like you have to second guess the treatment plan under these circumstances.
I know someone who receieved radiation at the new Sloan facility in Baskin Ridge NJ who liked them very much. Jack had his done in Princeton and we liked that Dr - there were several Sloan patients receiving radiation there. Have you had a consult with the radiation oncology doctor at Sloan yet to form an opinion? Also are they talking about doing chemo with the radiation? Regards JoAnne
JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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#23227 05-23-2007 02:55 PM | Joined: May 2007 Posts: 10 Member | OP Member Joined: May 2007 Posts: 10 | I want to thank each of you that have responded to my emails...i wanted to write back sooner but we have been going back and forth to Sloan...from marlboro, nj. just leaned from dr. who had to clear mike for surgery that operation will be 10.5 hrs. threw us both...did not expect this. we are speaking to plastic surgeon tomorrow....and on friday we speak to his surgeon who will fill in all the blanks. sooo many questions. Surgery is set for wed. may 30. have no idea what the plastic surgeon is reconstructing...do know they will be using a 'flap.' from internet learned oral cancer tends to come back...approx. 50% cases have recurrences...no one told us. learning that we have to become VERY knowledgeable so we can double check drs. i want to learn more about chemo...and CYOTHEAPY...although the surgeon only mentioned radiation as 'likely' thus far. as for radiation...there are so many kinds...has anyone heard of 'GAMMA KNIFE' also...if it came back second time...can it come back third? thanks for all your help...this is going to be a long hard road. husband tried this site and it upset him too much...perhaps that will change. G-d help us all... efab
Efab
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#23228 05-23-2007 03:23 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Dear Efab AND Hubby- You gotta stop and take some deep breaths here. And remember that everyone on this site has personal experience in what is happening to you and will help you along the way. #1. Please stop projecting to what might happen in the future because you can't control that. #2. Learn as much as you can about his proposed immediate treatment so you can ask intelligent questions and understand the answers. #3. Get your life organized so that you can be there during the process and fully understand what is going on to the best of your ability.As to this site upsetting your husband, here's a hint for you. When you find a post or a thread that is pertinant to what is happening with him in the present tense- print it and leave it lying around so he can pick it up and read it at his whim. You can also ask him if there is something he might want more info on and search that question and print it for him. My husband wouldn't touch a computer, but I printed 100's of pages of OCF material for him to read and he did at his own pace.Remember- initial diagnosis is panic time- then you switch gears to win the battle. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#23229 05-23-2007 03:41 PM | Joined: May 2007 Posts: 10 Member | OP Member Joined: May 2007 Posts: 10 | Dear Amy, I appreciate your help...but I can't help feeling that making sure...by asking questions and getting 2nd opinions can and will impact what happens in the future. printing relevant pages is a great idea...thank you. as for getting organized... i am trying
I am sorry for your loss...efab
Efab
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#23230 05-24-2007 03:56 AM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | Efab, Listen to AMy. She's a smart lady and knows what she's tlaking about.
I had radiation after surgery (mine was 17 hours...talk about being thrown for a loop!)
The "flap" they referred to is either a tissue- only or a tissue and bone transfer from one part of the body to another, in this case to the face and jaw.
Have they said anything about a possible mandible or palette involvement? This will dictate where the flap is taken from.
In my case, they removed 40% of my jaw. The flap came from my lower leg. They removed the fibula for use in rebuilding my jaw, however the tissue they removed didn't provide adequate bloodsupply for their needs. To get that, they did a second, tissue only flap from my forearm. This also necessitated some skin grafts, which to be honest were the worst part of the ENTIRE surgery.
Radiation most comonly used for Head and Neck cancers seems to be IMRT, which is highly precise. I've heard a bit about the gamma knife, but not a lot in this context.
Your husband sounds to be a lot like me. For the first couple of weeks after I was diagnosed, I couldn't even type in the word "cancer" on the computer without having an anxiety attack.
Once I did, I started to learn, and to develop the tools I needed to fight this beast. He will get there, just give him time Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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#23231 05-24-2007 03:30 PM | Joined: May 2007 Posts: 10 Member | OP Member Joined: May 2007 Posts: 10 | Dea Wayne, Hope you are recovering and coming back to yourself. We met with the plastic surgeon who is the chief of staff for plastic surgery at sloan...dr. cordeiro...he explained about the flap and expects it to be soft tissue only. He floored us when he told us about the extended time frame for recovery...and that he may or may not be able to speak again. are you able to speak? we meet with the surgeon tomorrow and will learn more. surgery is on the 30th. problem is he doesn't believe what the drs say...he has had THREE totally different unrelated cancers in less than 3 years...and now a recurrence. i don't know how much more he can take. efab
Efab
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#23233 05-25-2007 02:27 PM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | Efab
the recovery has been much longer than I expected it would be. I'm nearly a year post surgery and I can only go for about 4 or 5 hours without needing a rest.
I am able to talk, chew...everything. The surgical scars are fading really well..unless I point them out, people don't even notice them. I really feel for your husband. I can't imagine having 3 different cancers so close to one another. I understand him starting to lose faith but he has to work hard to keep his trust in his Doctors; they are his BEST chance of beating the Beast Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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