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efab Offline OP
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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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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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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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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

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efab Offline OP
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My husband is being treated at Sloan.
We have confidence in the surgeon


Efab
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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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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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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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efab Offline OP
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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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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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