| Joined: Jul 2012 Posts: 12 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Jul 2012 Posts: 12 | My dad finished his 35 rounds of radiation and 2 rounds of Cisplatin in early Nov'12. He was doing great. Skin slowly repairing its self. Swelling slowly subsiding. Appetite returning. In Jan'13 he had his follow up scan - results not good. There is a reoccurrence on the left side behind the ear. Directly in the area that was being treated. Radiation is not an option. We are told they cannot operate because of the cancer's proximity to the blood cells would stroke his brain. And we are being told chemo cannot fight it. We've been referred to a Palliative care doctor and prescribed pain meds. Feelings are mixed. I'm shocked that his team of doctors have thrown their hands up and sent us home with a grim prognosis. The system seems so broken. We have reached out to a ND who has success in treating cancer. His symptoms vary day to day and hour to hour. We are trying to stay positive. After all Dr's aren't Gods and we all know they can be wrong. But, it's hard having the anticipation of a grim prognosis hang over our heads. It breaks my heart to see him in pain. How do we bring back some form of normalcy to our lives? Sadly I seem to find strength in my anger these days. We did everything they told us to do and I feel like it left us with no options. What happens next? Any suggestions?
CG - Father, Age 63, Non-Smoker May 2012 - Diagnosed Stage IV Tongue Cancer (Left Side) July 2012 - Surgery (Removed: 70% of Tongue & 77 Lymph Nodes - 3 Affected; Flap Reconstructed; G-Tube) August 2012 - Teeth Removed; MRI Scan: 1 New Affected Lymph Node Sep-Nov 2012 - 35 x Rad & 2 x Cisplatin Chemo
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | I am very sorry to hear about the recurrence. Not knowing the health care system i Canada, I can only offer suggestions that sort of make common sense; whether, they are viable options to you, only you know.
First, get a second opinion. Find a new set of specialists, preferably at a CCC (Comprehensive Cancer Center) that specializes in dealing with cancer patients. They are generally the most knowledgeable and experienced practitioners as they see the greatest volume and the more unusual cases.
Stay positive and use your energy to seek and get that second opinion. Way too early to throw in the towel.
Good luck, Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Your dads situation sounds like mine. I had three of the best places in the US tell me the same thing with my tumor just below the ear and wrapped around the corotid artety. I found a place that does Stereotactic body radiation therapy SBRT. This allows them to hit the cancer with one more round of radiation (possibly 2). The results are mixed but we have had a few on this board who have had success with it and a few not.
It was successful for my last time but they nissed a spot so I am going in for one more set of treatments.
This regime is 5 teatments over ten days so not as bad as IMRT.
I would try to find a facitlity in Canada theat offers Stereotactic radiation and get them your fathers records. Ther may be a chance yet.
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
| | | | Joined: Jul 2012 Posts: 12 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Jul 2012 Posts: 12 | Thank you very much - I'd greatly appreciate that. I will meanwhile ask our Radiologist to see what he can refer.
CG - Father, Age 63, Non-Smoker May 2012 - Diagnosed Stage IV Tongue Cancer (Left Side) July 2012 - Surgery (Removed: 70% of Tongue & 77 Lymph Nodes - 3 Affected; Flap Reconstructed; G-Tube) August 2012 - Teeth Removed; MRI Scan: 1 New Affected Lymph Node Sep-Nov 2012 - 35 x Rad & 2 x Cisplatin Chemo
| | | | 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 | Lea, Im very sorry to hear about your fathers recurrence! Yes, I fully agree with the other responses and seek out a second opinion at another top cancer canter. Go to the highest ranked cancer center you can find. This can mean a huge difference in how he is treated. Try to hurry and find another facility, time is of the essence with recurrences. If it helps, your dad is not alone...I went thru 3 rounds of oral cancer within 3 years. Im now almost 4 years past my last bout and Im doing ok besides some minor after effects. It really hits home with me when a member has a recurrence. Wishing both you and your father all the very best with this! 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: 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 | Irish is actually a terrific dr, but his bedside manner comes and goes - I do trust him though. He's very much a pioneer in his field and pmh is a world class facility. Check and see if there is another cancer center perhaps in bc that will give him a second opinion. So sorry that they've decided against this - maybe ask again see if they have any trials? Also he could be reradiated quite a few people here have been push - ask to see the head of radiation...
Last edited by Cheryld; 03-13-2013 09:46 PM.
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 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Maybe even consulting the Otolaryngology Department at Mount Sinai next door? They diagnosed my husband but referred him to PMH for treatment. The doctor who heads that department is the Chair of Oncology at the U of T. The other possibility I can think of is Sunnybrook. You might have to factor in wait times. I'm truly sorry about what you and your family are facing.
Last edited by gmcraft; 03-14-2013 07:37 AM. Reason: Additional information
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | 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 | Definitely - push! if you don't get answers from pmh go elsewhere though often looking at where he has come from other drs are afraid to get involved. Beg... Cry if you have to. 
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
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