| | Joined: Mar 2011 Posts: 8 Member | OP  Member
Joined: Mar 2011 Posts: 8 | My uncle (58yrs) was just diagnosed with Stage IV oropharyngeal cancer at the base of the tongue. It has metastasized to both his lymph nodes (~3cm). Tests are being done to determine if it is HPV related and PET scans were done today to see the extent of metastasis.Treatment will start once the tests are done. Any ideas/ suggestions/ inputs will be deeply appreciated as to which hospital to choose (thinking between UPenn-HUP and Sloan),any specific doctor for getting second opinions from and a possible line of treatment.Thanks a lot for maintaining this forum. | | | | | 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 | Hello and welcome to OCF! Im from PA too, the Allentown are which is about an hour north of Philly. There are a few others from your area on here too. All the hospitals you mentioned are very good. Here is a list of best hospitals and also the top cancer centers. Best of luck to your uncle with everything! http://www.oralcancerfoundation.org/resources/cancer_centers.htmhttp://health.usnews.com/best-hospitals
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: Mar 2011 Posts: 8 Member | | OP Member
Joined: Mar 2011 Posts: 8 | Thanks a lot, Christine. Any thoughts on proper diet before treatment starts? He is just complaining of a sore throat and avoiding spicy food but are there any food restrictions at this stage?
Uncle (58 yrs); Diagnosed 03/2011; Stage IVA BOT and both lymph nodes in neck
| | | | | 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 | I have a list of easy to eat foods. Hope he is able to eat all he can now and bulk up before treatments begin. http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621
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 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Well, have him eat as much as he can now prior to the start of treatment.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Yes.. .healthy smoothies, high protien powders, food to bulk up. If he can eat it then he should.
Sorry about your uncle, but you have found an amaingly supportive group here. They have a lot of combined experience and can help with most questions. Take care... and many blessings to you and your uncle.
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Tell him to eat all of his favorite fattening foods he can and as often as he wants. He will surely loose a ton of weight during Tx. When you say it's affected "both" of his nodes, do you mean nodes on both sides of his neck or just 2 nodes on one side? We have a chain of appx 28 nodes on each side of our neck that act as filters for their side if you were to draw a line down the center of the tongue. I would get an opinion from both. If he was a non smoker he has a 70% chance that his cancer slides will test positive for HPV.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2011 Posts: 8 Member | | OP Member
Joined: Mar 2011 Posts: 8 | A very big thank you to all of you. I am so glad I am getting all this support.Sorry for not being clear-the lymph nodes on both sides of his neck are affected. He was a non-smoker but a moderate-to-heavy wine drinker. From the reports and papers that I have been seeing, chances of survival are much better for HPV positive cases. Let's see what the reports say. | | | | | Joined: Mar 2011 Posts: 8 Member | | OP Member
Joined: Mar 2011 Posts: 8 | Thanks a ton, Christine. You have compiled a great list. | | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | What hospital are you at now? Besides HUP you also have Fox Chase in Philly. I had my 2001 surgery at HUP and have been followed there since diag in 1997 and am quite satisfied with my surgeon. I do not know if he does BOT surgery. Where does you uncle live?
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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