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#195501 12-12-2017 05:43 PM
Joined: Dec 2017
Posts: 1
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Joined: Dec 2017
Posts: 1
Hi there,

Just a quick intro, diagnosed last week with Tonsil cancer, stage 4, 2 lymph nodes. I got my PET results today and they were clear so that is great. I am trying to decide if the treatment differes much between cancer centres.

Today the recommendation was 7 weeks RT and 3 Cisplatin at week 1,3 and 7.

He said surgery was not a good choice for mine and I was wondering if that is consistent with what others have heard?


Looking for potatoes in a minefield
Oropharyngeal Cancer Tonsil + 2 lymph nodes HPV +ve
Not started treatment
Joined: Jul 2012
Posts: 3,267
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267

That's pretty much the same diagnosis I had 8 years ago for tonsil cancer; T1N2bM0. It sounds like the standard of care for oropharyngeal cancer with Chemoradiation, which outcome is on par with surgery, and was suggested for me too. Surgery has made a comeback recently for initial treatment with Robotic or Transoral Micro Laser surgery, otherwise, regular surgery can be pretty invasive. There are many other reasons why surgery may not be preferred.

Cisplatin is often the preferred chemo, if there is no impairment as far as the kidneys, hearing go. If so, they may use another chemo like Carboplatin, that is another platinum based chemo, Erbitux or others.

There's often a question wether to do the three large bag doses, as you mentioned, or weekly smaller doses. Both pretty much have the same outcome, but the three large bag slightly outperforms the weekly doses.

The biggest positive prognostic factor we have for oropharyngeal cancer is if it’s HPV related, which has better outcome, and responds well to radiation treatment.

There are lots of things to go over, if one wants to know, and our Administrator, Christine, and others, may add their words of welcome.

Last edited by PaulB; 12-13-2017 09:02 AM. Reason: HPV

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
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: Dec 2017
Posts: 11

Joined: Dec 2017
Posts: 11
Hi, my husband has tonsillar squamous cell carcinoma strongly positive p16. (HPV). It was seen on PET scan in one tonsil one lymph node. He opted for divinci robotic surgery and got clear margins from pathology reports. Found in only one tonsil and in one of many lymph nodes which were removed. He opted out of radiation and chemo after meeting with both MDs. His surgeon said it was not negligent to recommend close follow up without chemo or radiation as an option, and patients have the right to refuse treatments. Husband would rather live without the side effects linked with rad and chemo for a few good years than life with the other issues. Its a very personal and difficult decision. I did some research, HPV is a different animal than non HPV oral cancers. Good luck to you.

Joined: Jun 2007
Posts: 10,506
Likes: 2
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: 10,506
Likes: 2
Welcome to OCF! You have found the very best resource to help get you thru your upcoming treatments.

As far as treatment plans go, all hospitals should be going by a very detailed flow chart from the NCCN (National Comprehensive Cancer Network) which relies on on a patients info such as their tumor size and location. Im sure there are many other factors that are considered when creating a treatment plan. Im sorry I dont know all the details as I do not have a medical background, schooling, or clinical patient experience, etc behind me. The best thing I can do is give you the link to the NCCN site where you can peruse at your own leisure. If you're wondering if where you get treated makes a difference the answer is YES! Studies have proven patients fare much better when being treated at a Comprehensive Cancer Center (CCC) than a small local facility where they may not be as experienced in treating OC patients. We always advise patients to get the very best medical care you can, trust and listen to what your doctors tell you and do what they say. If you are fortunate enough to get into a CCC then you should be in very good, capable, experienced hands.

One of the very best things I can tell you to help you get thru this is to eat, eat, eat then eat some more smile Have all your favorites and dessert too. Dont worry about gaining weight or going up a size in your clothing. Most patients lose weight during their treatments and recovery. You do not want to go into treatments with cravings. During treatments patients will notice their sense of taste and ability to swallow are compromised making eating difficult, for some this is a huge struggle. Starting right away you should take in a minimum of 2500 calories and 48-64 oz of water every single day until you hit your first year post rads at the very least. If you are on the slim side, you will want to push those calories up to around 3000 daily. Paying careful attention to your intake is one of the most important things a patient can do to help make rads as easy as possible. A word of caution when a patient is having a rough day and thinks its ok to skimp one day they can make it up tomorrow... DONT DO IT!!!! Tomorrow comes and now they feel worse due to not getting enough calories the day before and before they realize whats happening, they've created a vicious cycle of playing "catch up" where they will never get ahead of it. For many I am a gigantic thorn in their side when I nag them about their intake. Every single person Ive nagged that did not heed my warnings ended up hospitalized for malnutrition and dehydration. I nag because I care and Ive been down that road myself and I do not want to see anyone suffer for something that is controllable and doable (not always easy but it is doable).

Anyone who offers to help you, write down their name and contact info. Tell them when the time comes you will let them know what they can do to help. Theres a million and one tiny things that can be a huge help for patients going thru rads. Something as simple as taking out the trash or walking a dog can make a big difference in your day when you arent feeling well.

The American Cancer Society (ACS) has a volunteer driver program you may want to check out. During rads and chemo, patients can be on some pretty strong meds that make driving a bad idea. Plus most of us werent feeling the best and shouldnt get behind the wheel. It takes a couple weeks to get the paperwork done so you may want to get started on it in the near future. Even if you have your caregiver as your driver, it can be a big help for both of you to have someone else take you to yoru treatments once in a while. The ACS also has a program to help cancer patients afford their medications and/or the cost of transportation to get back and forth to treatments. They give patients a $300 voucher at the pharmacy of their choice or you can choose to have it used to cover your transportation. They're available 24/7/365 so call anytime.

Pay careful attention to any changes in your hearing or anything that doesnt seem normal for you after getting the initial round of chemo. Patients given cisplatin can develop high frequency hearing loss and kidney issues. Even if you hear a faint ringing in your ears, speak up!!! You do NOT want to get another dose of chemo if you notice any problems as it could cause very serious negative life long health impairments. Usually with the 3 "big bag" method of chemo, patients will not notice anything until about a week to 10 days later. On chemo days and the day after its vitally important to push the fluids. Im sure you will get extra hydration along with anti-nausea meds when you get the chemo infusion. You want to drink as much water as possible to help flush the poison out of your system.

Prior to starting treatments all patients should see their dentist for a thorough exam. They should have fluoride trays made too. If your doc hasnt mentioned this yet you will want to make an appointment ASAP and get this started. The fluoride trays will help to save your teeth from radiation damage. If you have a tooth or two that isnt in the best shape you will want to have it taken care of immediately. This can delay the start of your treatments which is why I say to do this immediately. Your mouth will need time to heal before starting rads. Pulling teeth after rads brings a whole new set of problems so do it now. Also you should have a full blood panel done including thyroid and testosterone (for male patients). This is easy to do before starting rads but those important baseline numbers are impossible to go back to get down the road.

Wow! Sorry about writing you a book!!! Hopefully you will be one of the lucky patients who sail right thru their treatments barely noticing any side effects. Feel free to ask questions, read and educate yourself so you can be a strong advocate when necessary.

NCCN Guidelines

SCC 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 smile

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