| Joined: Jan 2013 Posts: 65 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2013 Posts: 65 | Charles has been referred to a radiation oncologist. His first round of radiation was in 2001. Is the second round of radiation any more difficult? Sheryl
Wife/caregiver to Charles ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001 Tonsillectomy, RND and six weeks RADS 2/2001 ENT diagnosis from CT scan, SCC in Rt tongue 2/13 25% of tongue removed 2/13 (clear margins) SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014 Surgical biopsy shows cancer in larynx 9/2014 Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014 Recurrences '16 HPV Neg No EGFR Mutations Detected
| | | | 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 | For the RO, Dosimetrist it takes more calculations, treatment planning, and would only be offered if it can be done, and done safely. For the patient, being reirridated can difficult, but depends on the prior radiation, type of radiation, areas to be reirridated, unradiated tissue from flaps, dosage, other issues, but it's never easy the 2nd time around, including emotionally, besides physically. Usually it is reduced radiation in more isolated areas, but woud say it usually is over 50Gy to kill SCC.
Good luck.
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: Jan 2013 Posts: 65 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2013 Posts: 65 | We met with the radiation oncologist. He said Charles is unusual in that he has three primaries. The field of radiation would be larger than most reirridations. Side affects numerous including 5% chance of carotid artery blowout, one in three chance he would not be able to swallow. Plus there is no guarantee that Charles would be 100% cured. So we decided not to sign up for reirridation. We live in an area with an abundance of non mainstream medical practices. I can find research using effective non mainstream help for many cancers but cannot find research for effective non mainstream help for head and neck cancer. Does anyone know of a source for head and neck cancer research using non mainstream methods? I totally understand these may not be cures, but at this point neither are the current mainstream methods. I am just not buying it that there is no effective non mainstream help for head and neck cancer.
Sheryl
Wife/caregiver to Charles ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001 Tonsillectomy, RND and six weeks RADS 2/2001 ENT diagnosis from CT scan, SCC in Rt tongue 2/13 25% of tongue removed 2/13 (clear margins) SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014 Surgical biopsy shows cancer in larynx 9/2014 Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014 Recurrences '16 HPV Neg No EGFR Mutations Detected
| | | | 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 | Sheryl, unfortunately there is no other way to eliminate OC than thru either surgery or radiation with or without chemo. When using chemo alone it will not kill all the cancer but its used to shrink tumors. Im very sorry there are not other alternatives which is why you dont see other procedures discussed on our forum. There are many fraudulent cures out there and clinics that make false claims. Be very careful in your search, these fake cures are nothing more than money making schemes. Quackwatch is full of these "alternative" medical claims. Its terrible how people prey on the sick with their gimmicks.
There have been several members who have gone thru rads more than once. I personally know of several who have undergone it at least 3 times with some also doing brachytherapy. If you havent already gotten a second opinion it might be a good place to start, especially at a CCC where they have more experience in difficult cases.
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: Jan 2013 Posts: 1,292 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,292 Likes: 1 | Sheryl,
Proven scientific medical science methods have deemed surgery and radiation as the only currently approved treatments to kill oral cancer. There is much data on these treatments and outcomes so you can get as clear as is possible what these options look like.
Are there other treatments that can be at least as effective as say chemo is to slow or even stop further growth of cancers? I'd bet there are but there is not the proven scientific medical science to back it up. There is living proof right here of those who have been branded terminal and continue on far past their expiration date.
Since there are no proven data then it is hard to compare treatment options and make an informed decision when including non traditional options.
With each recurrence, QOL factors become a larger part of the decision criteria. These are very personal choices and decisions. When does one elect for more quality but less time or when does one decide to decide to have more time but with more health issues?
If you have time, it can't hurt to look into alternative treatments knowing most are long shots at best and full of hucksters and scams. I am sure there are some who are ethical and have some basis for their hope and offerings. Sorting them out from the sea of garbage is going to be a big challenge.
If you feel your head can remain above your heart, then look. If you feel your heart might take over, then you are just shark bait and probably better to stay away.
These are very difficult choices so seek support as you can.
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: 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 | As mentioned, getting a 2nd or even 3rd opinion at a top CCC may be beneficial. Although each situation, and personal preference is different, I had radiation 5x to my neck. Four were after some radiation oncologists didn't want to do more due to dose limiting toxicities after my initial 70Gy, bilaterally, for oropharyngeal cancer, but found others who would, safely, and then some, using different types radiation and techniques. My last was with Proton Therapy, and there was a 20% chance of carotid blow out, even with it already removed, but still went ahead, and faced other risks from other surgeries, but they were all better than the risks of not doing anything. One RO said the carotid artery is very resilient.
Good luck.
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: Jan 2013 Posts: 65 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2013 Posts: 65 | Thank you to everyone for your concern. Paul, are you able to swallow? Did you require a PEG tube? Currently we go to Wake Forest Baptist CCC, which is rated number one in our state. Which CCC nationwide would you say has the best RO department for head and neck cancer?
Glad to say goodbye to 2014!
Sheryl
Wife/caregiver to Charles ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001 Tonsillectomy, RND and six weeks RADS 2/2001 ENT diagnosis from CT scan, SCC in Rt tongue 2/13 25% of tongue removed 2/13 (clear margins) SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014 Surgical biopsy shows cancer in larynx 9/2014 Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014 Recurrences '16 HPV Neg No EGFR Mutations Detected
| | | | 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 | My current swallowing is slightly compromised due to surgical extraction of all my teeth, but was fine before that, minus the usual trouble during several treatments, side effects. I do have a peg, but not totally tube dependent, which was put in after having only chemo, which effects were worst for me than radiation was later on, so I kept it through the years being compromised already, and the potential need during re-treatment, and my theory was correct.
The best I would say are those that treated me lol, in NYC, where there are more top hospitals, and doctors than any other place in the country, but those listed by the NCCN, NCI, and U.S. News Reports best hospitals are top also, and many are here, elsewhere, if travel or insurance is not a restriction.
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
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