| Joined: Jan 2015 Posts: 15 Member | OP Member Joined: Jan 2015 Posts: 15 | Hello All, On March 27th I underwent a second neck dissection for a persistent tumor buildup on the left side of my neck. They did a horizontal and vertical incision because there was extra "junk" that needed to be taken out. My surgeon successfully removed all cancer which was seen by the naked eye. I had positive lymph nodes in lvls 2-4 that had extra nodal extension. This is not a recurrence, it was microscopic cancer cells that were there from the start. It's very concerning because it survived through the Chemo-Radiation from last fall. The tumor board met up 2 weeks following my surgery and were worried about how quick the cancer came back, so they're recommending a 4 month Chemo Treatment Plan which consists of Erbitux and Taxol. The medications will be given through IV once a week for 16 weeks. My other option would be to let it ride and hope that there are not any microscopic cells left behind. It's been 3 weeks since my surgery and they said they would like to get the Chemo going before week 8 post-surgery. The Chemo Doctor said that if I don't do anymore treatment as of right now... I have a 30% chance of the problem not persisting, and a 70% chance of it coming back. But if I do the 4 month Chemo Treatment he can't statistically let me know how much better my chances are of the cancer not coming back. There's also no guarantee that my bad cells will be responsive to these Chemo-therapies. Keep in mind that one of the possibilities is that I'm already completely cured right now. This is a tough decision and I would like to hear what all of your opinions are. If you were in my shoes how would you approach this situation? Thank You.
Last edited by BrandonK427; 04-21-2015 12:10 PM.
Male, 23 year old�Dx 6/17/14 with SCC R Lateral tongue CT scan clear lymph nodes 6/20/14 HPV-, form-smoker, casual drinker Right Hemiglossectomy Surgery 6/24/14 (Not reccurrence but went to NCCC instead) Right neck diss., trach, radial free flap, right tongue diss. surg 8/11/14 PT1N2B..3 positive lymph nodes out of 13 Extranodal extension present 9-15-14 IMRT (35x) and Cisplatin (2x) begun 10-21-14 peg in. 11-4-14 IMRT rx comp. 1-9-15 peg out 3-27-15 Recurrent tumor in lymph node, Left neck diss. 10-29-15 passed away
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Sorry for your troubles BrandonK. This has happened to me several times. I'm surprised they didn't suggest radiation also, but your prior radiation, less than a year, may factor in. I would say the targeted therapy/chemo combination is better than nothing, but I would seek alternatives, having choices are always good, and select the most extensive treatment anyone can offer due to your history, negative prognoses, like ECE, lower nodal involvement, if it can be done safely, and maybe a 2nd opinion, preferably at a top CCC.
Good Iuck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Hello Brandon, my approach would be to treat this as aggressively as you can. Your cancer has already proven resistant to both chemo and radiation. You had extra nodal extension. There will almost certainly be microscopic cancer cells remaining. Personally I don't like the odds of 30% likelihood of cure at your current status. As Paul says please get a second opinion from a top CCC. Thinking of you, Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Given it came back quickly means your strain of cancer is tough, also being non HPV adds to it being harder to cure. You are so young it is harder to say give it all they can as you have a long life to live with side effects. For us older folks, long term QOL is less an issue. You have a tough choice but you are young so you will bounce back faster than most here. Get another opinion at a top CCC if you can. Good luck
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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Brandon,
I've been in your shoes also, and doing nothing probably isn't a good idea. If you can, seek another opinion at a top cancer center.
Wishing you the best!
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: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | Hi, Be has agressive as possible and kill this volture once and for all. Dont take any chances with this. Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | Joined: Jan 2015 Posts: 15 Member | OP Member Joined: Jan 2015 Posts: 15 | I am going to schedule both a 2nd opinion at another CCC in Michigan and speak to a Holistic Doctor in the next upcoming weeks and get back with you all. The last week I've been on vacation so I've been putting as little thought into my situation as possible. But now it's time to take responsibility again starting with cutting out as much sugar as possible. I talked to a Holistic doctor and he said he would like for me to go on a Ketogenic Diet which consists of using good fats for energy instead of a bunch of carbohydrates such as Pizza's, Pasta's, Fruits etc. Looks like I'm going to have to start going green and meats all the way.
So if I were to go this route and try to avoid the chemo... And if the problem does persist, it would occur sometime in the next year or two if any microscopic cells form into another tumor. My chemo doctor said 'he wouldn't think I'm crazy if I were to do that' which I understand I have to be aggressive as possible on the subject. Unfortunately Chemo kills good white cells along with the bad and I'm sure the side effects won't be so friendly.
I have about 3 weeks to decide if I want to start the Chemo so I'll keep you all posted.
Male, 23 year old�Dx 6/17/14 with SCC R Lateral tongue CT scan clear lymph nodes 6/20/14 HPV-, form-smoker, casual drinker Right Hemiglossectomy Surgery 6/24/14 (Not reccurrence but went to NCCC instead) Right neck diss., trach, radial free flap, right tongue diss. surg 8/11/14 PT1N2B..3 positive lymph nodes out of 13 Extranodal extension present 9-15-14 IMRT (35x) and Cisplatin (2x) begun 10-21-14 peg in. 11-4-14 IMRT rx comp. 1-9-15 peg out 3-27-15 Recurrent tumor in lymph node, Left neck diss. 10-29-15 passed away
| | | | 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 | Brandon, I understand you are trying to find an alternative to the regular OC treatment. I know how brutal it can be and the long lasting effects it has on your body. I have seen several members attempt to go that route. Unfortunately they realized too late that the only medically proven cures for this horrible disease is the standard treatments of surgery and radiation with or without chemo. PLEASE!!! Be use caution when seeking anything besides the scientifically proven treatments. There are far too many scheming medical "professionals" out there who make false claims and ultimately harm patients who believe in their methods. A special diet can help make you healthier but will never cure cancer. Any doctor who claims it will does not have your best interests in mind. If you check Quackwatch you will find the diet you mentioned. When something makes the Quackwatch website that means it doesnt work, its another bogus claim. Quackwatch, Ketogenic Diet 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: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Brandon, I agree strongly with your Chemo Doc. You have an Aggressive recurrent cancer. If you want to survive this , you must treat it aggressively. Treat it with the treatments that have been proven to work. Surgery coupled with chemo and or radiation . Why would you not listen to the Drs who have huge experience with treating this type of cancer? Your white cells will recover from the chemo. Hopefully the cancer cells won't. Will a ketogenic diet help? Absolutely not. I don't want to read of your demise because you got sucked in by woowoo. Please ,please, listen to the experts in this. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | 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 | Brandon, in my husband's case, the microscopic cancer cells went straight to his lungs and the doctors found five or six lesions. It did not take a year or two, it took all of six months when they became visible on the CT scan. Prior to that, it could be they were there already but remained undetected because they were microscopic. When a patient has lung metastases, he is already in the palliative stage. Timely action is extremely important in cancer treatment.
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. | | |
Forums23 Topics18,244 Posts197,127 Members13,314 | Most Online1,788 Jan 23rd, 2025 | | | |