Just diagnosed Squamous Cell Cancer on right tonsil and right lymph node(s)

soonermom said:

Encouragement

Also, just to add on my husband's cancer was Stage 4 and he is still doing so well 2 years later so please realize that no matter what news they give you do not give up.  Please tell your wife she can DM if she has any questions as a caregiver.  

Thank You!

MarineE5 said:

Mind at Warp Speed

Mindy22Mike, 

I am sorry that you are here seeking answers to your questions, but glad you found us. There are many knowledgeable people here to help you as you can see by the replies already. 

PEG Tube- I had no choice in the matter as I had part of my tongue removed because of Base of Tongue cancer. I had a Trach and PEG Tube after surgery. The unknown is scary, once you get into the fight, you be focused and be working on beating the beast to get back to your normal self. After treatments were over, 30 Radiation treatments without Chemo, and proving I could maintain my weight, the PEG Tube was removed. Some Doctors want you to have the PEG tube, others would rather you do without, I as mentioned had no choice. The main thing in either case is we need to stay hydrated and continue to swallow liquids so we don't lose the swallow motion. 

What's ahead?- Depending on the Pet Scan next week, you already know you will have Surgery, treatment could change, but I had Radiation only because the Surgeon and Oncologist felt I had clear margins. Chemo was a back-up plan in the event the cancer came back, I am happy to report did not happen. This was in 2004. 

I have a suggestion for you if you can do it, that is to try and not search Dr. Google as a lot of the information out there is outdated. Statistics are scary, but there is only one statistic that matters and that is the number 1 (YOU). You can do this, take a deep breath, I know it is easier said than done, but try to do it if you can. Coming here was a good thing as you can get answers from those that have traveled this path ahead of you, so lean on us, vent when needed, we listen well. 

My Best to You, Your Family and Everyone Here

Thank you!

bugsyboy said:

Pace Yourself This is a Marathon

Sorry to hear of your diagnosis, but glad you posted.  Keep in mind, this is my opinion.  Others may agree/disagree as everyone's experience is different.

First question-is your Cancer HPV 16+?  If so, this type of Cancer responds very well to radiation.  During my treatment, my doctor told me they had a 96% success rate treating my type of Cancer - SCC HPV 16+ at the base of my tongue.  Almost five years later, I'm part of that 96%.  So, find out if you are HPV 16+.  Also, what stage is your Cancer?  Mine was T1N2aM0 - Stage 1, with no defined mass.  I underwent 33 radiation treatments that brought me to the gates of Hell, but here I am almost 5 years later and you cannot tell I ever had Cancer.  Aside from flouride trays and occasional dry mouth, sometimes I forget as well.

My biggest regret was not getting the feeding tube.  I was so dehydrated and had lost so much weight that after my 28th treatment, I was admitted as an in-patient for the last five treatments.  My advice to anyone going through this is to get the PEG tube.  Better you should have it and not use it, than not have it and need it.  Caloric intake during treatment is crucial for your body to continue to function and if you're in too much pain to swallow, you need to get calories via the tube.  You can still try to eat/drink normally, but you need nourishment via the tube if you're in too much pain to swallow.

Pharmaceuticals are your friend.  Fentanyl, Hydrocodone, Hydromorphone, Magic Mouthwash, anti-anxiety, anti-depression, etc., etc.  If you're in pain and your doctor prescribes it, take it.  I kept saying I didn't want to get addicted and my doctor told me not to worry about addiction.  She told me I needed meds to help me eat, let my body rest and heal.  She promised she would get me unaddicted if it became an issue.  It didn't.

One last thing-I live in rural north Georgia.  The doctors here had my wife and I in tears with their diagnosis and treatment plan.  After researching where to go for Cancer treatment, and because our son was living in Houston we chose MD Anderson.  Wherever you choose for your Cancer care, I suggest it be someplace where all they do is Cancer.

The folks on these Boards are the best.  Feel free to post with whatever questions/concerns you have.

Best of luck.

Bugsy

Thank you!

skidog said:

Same story read..

I found a lump on the right seide of my neck in January of 2018. I knew this was not normal and schedule a visit with my Primary care doc 3 weeks later. He didnt think much of it and said to give it a couple weeks and if it's still there..have an ultrasound. Which I did three weeks after seeing him. Ultrasound showed a slightly enlarged lymph node but they said to give it a couple weeks and if it didnt go away to have it Fine needle biopsied. 3 weeks later I had a visit with the ENT at UW Hospital. After several attempts (over 2 dozen) she felt like she got enough material to give me the results in a few days. 2 day's later she called and said there were cancer cells present. At this time...I had already done a ton of research and was prepared for that diagnosis...but it still rocked me pretty good. Healthy 53 year old...never smoked and drank moderately. I received 3 seperate opinions on the diagnosis and treatment options. After a PET/CT scan,  I was diagnosed with  early stage( N1) right tonsil SCC cancer with right side node involvement. Good news...it was caught early and cure rate very high. bad news...treatment options all sucked..in my opinion. UW wanted to do TORS with complete right side neck disection. then possible chemo/rad theray. I then made a visit to Northwestern Medical where they wanted to do chemo/rads only. My third opinion came from Mayo Clinic in Rochester MN. They offered to treat it with right side Proton beam radiation only (6 weeks/5 days per week). After receiving these 3 treatment options my wife and I went to work on researching all option available...and I mean a ton of research. During that time period I made radical changes to my diet..cutting out sugar, eating organic meats/veggies/fruit and continued to exercise. 4 weeks later I had a biopsy surgery on my right tonsil and base of tongue. This was supposed to be a 45 minute deal but the ENT took 7 different swipes at the areas and 3 hours later could not find any cancer. SO...with the results of my biopsy coming up a nothing burger combined with the FNA showing a very small trace of czancer activity, this left me wondering if the radical changes I made to my diet and lifestyle contributed to the difficuly finding the cancer (?)well, long story short...UW's board met and decided that IMRT ro the right side nodes and tonsil would be the best option. I chose Mayo and Proton beam instead.

 

Treatment:

 

I drove 3 hours (one way) every day by myself to treatment. They worked with me on my schedule so that I would have evening treatments on Monday's and Thursday's so that I could stay overnight and then have early morning treatments on Tuesday's and Friday's so that I could be home by noon. Wednesday's I just drove straight there and back. 

 

I worked the entire 6 weeks of treatment (I normally work from home/computer) My boss was very understanding and cooperative.

 

I worked with the American Cancer Society on low priced hotels in Rochester that partner with Mayo for cancer patients to provide affordable accomodations...as low as $19 per night!! nice rooms.

 

Our Insurance initially denied our Proton Beam therapy treatment option...stating that it was considered "experimental" we followed their appeal process which included a well written lettter from the chair of Radiation Oncology Dept at Mayo and my doctoer..Dr. Robert Foote. They rejected his letter and the next step was to have a conference call with a 9 member insurance appeals board. My doctor and I had 20 minutes to convince them that they needed to reverse their decision due to the fact that they were referencing old data from 2014 when they stated Proton beam was experimental. 3 days later we received news that they reversed their intial denial and that my treatment would be covered in full ...after deuctable of course. I was elated. 

 

I continued to do yoga/exercise/and walk a mile or two per day throughout treatments. Breezed thru week 4 but about half way thru week 5 the discomfort in my throat reached about a 3 level and would peak at about a 5 level during the night while sleeping. dry mouth was an issue but just needed to drink ewater and take some magic mouthwash and back to sleep. 

 

I only took tylenol and advil at times to assist with the pain but it was manageabke with out them.

 

Week 6 I took a couple oxycodone at night primarily to help with sleeping but it did help a bit with the pain...which was still around a 5 at it's worse.

 

I did develop a sore on the right side of my tongue but that was expected as It rubbed against a dental fixture and I figured it would be an issue. Hurt to talk at times

 

Mucositis was hit and miss. nothing choking or gaging me. very tolerable.

 

Taste buds remained about 50% throughout. due to the fact that they only hit my right side with the pencil beam. 

 

I didnt need any dental floride treatments or have metal fillings or cavities/teeth remove. Doc said thatls one of the big advantages of this therapy. I brush my teeth 3 times per day and swish saltwater and baking soda up to 6 times per day. 

 

Eating solid food became more challenging around the end of week 4. I found that eating in the bathroom with the shower running on hot steamed up the room and also soothed my throat so that I could eat more comfortably. I told my wife this and she smiled and said..."great, now we can have naked picnics in the bathroom!"

 

I'm now 7 days post reatment. this has been the hardest time I've had so far. Mostly because of the burns to my neck. I'm fair skinned and it really started to take it's toll at the beginning of week six. I've done/tried all the suggestion you all have made but it seems the best for me has been silver sulfadiazine cream...multiple times per day. and at night before bed and mornings when I wake up I remove the cream..very painful and then add a soaked cloth with water and white vinegar for about 15 minutes. then reapply the cream ...which is immediatly soothing and brings the pain from the burns down fron an 8 to a 1. Additionally my throat pain and mouth sore pain is a constant 4 or 5 but manageble when I take some tylenol and ibuprohen and magic mouthwash. All of this was expected and told to me by my doctor.

 

Let me say a few things about my care team. Mayo is a CLASS act. My doctor is the Chair of the dept and he (out of 6 doctors I visited from other institutions) was the only one to give me his business car WITH his personal email address. I had probably emailed him over 50 times during my treatment course as well as before treatments and he always responded usually within 6 hours. He worked his butt off to help my insurance cover this therapy. And I repeat...He is the chair of the entire Mayo Oncology dept. which means...he has alot of more importand $@&# to do than answer piddly questions I have about a certain side affect I'm dealing with.  Remarkable! The entire support team was extremely helpful and accomodating. Much appreciation.

 

Doc say's the neck should start turning the corner and healing next week. he said the throat area will be another few weeks and then start seeing weekly improvment. 

 

I know that we all have options. we all have reasons for why we chose the treatment plan we did. none is better or worse than the other. I did my research and listened to my gut and chose the treatment option I chose that I felt was best for me based on my condidtion. My story is only here to help many of those who are entering this scary uncertain world of HNC and are looking for testimonials/ideas/stories/options. My journey is far from over...the real proof of my treatment will be in the coming months and years of follow up tests and scans. I'm cautiously optimistic and hoping for the best!! Good luck to all of you here and all of you lurking in the background...doing your research..like I did behind the scenes.!

 

Did I mention that we have six kids still under our roof? 17yo boy, 16yo boy,15yo boy, 9yo boy and twin 8 year old girls (our surprise babies) YES our house is a crazy madhouse. We chose to tell the older boys very early on about my cancer. the littles learned about it last week. I couldnt hide the obvious physical side affects from them.(neck burns/lost 40 pounds/trouble eating foods etc). They are all troopers and handling it very well. as a matter of fact they now enjoy telling "everyone" that I have/had cancer. to the point where I have to draw a line and make sure they ask me first. LOL. So...If I dont get back to any questions anyone might have for me....I have an excuse...busy with all these bodies. 

 

 

 

Thanks for sharing!

skidog said:

Same story read..

I found a lump on the right seide of my neck in January of 2018. I knew this was not normal and schedule a visit with my Primary care doc 3 weeks later. He didnt think much of it and said to give it a couple weeks and if it's still there..have an ultrasound. Which I did three weeks after seeing him. Ultrasound showed a slightly enlarged lymph node but they said to give it a couple weeks and if it didnt go away to have it Fine needle biopsied. 3 weeks later I had a visit with the ENT at UW Hospital. After several attempts (over 2 dozen) she felt like she got enough material to give me the results in a few days. 2 day's later she called and said there were cancer cells present. At this time...I had already done a ton of research and was prepared for that diagnosis...but it still rocked me pretty good. Healthy 53 year old...never smoked and drank moderately. I received 3 seperate opinions on the diagnosis and treatment options. After a PET/CT scan,  I was diagnosed with  early stage( N1) right tonsil SCC cancer with right side node involvement. Good news...it was caught early and cure rate very high. bad news...treatment options all sucked..in my opinion. UW wanted to do TORS with complete right side neck disection. then possible chemo/rad theray. I then made a visit to Northwestern Medical where they wanted to do chemo/rads only. My third opinion came from Mayo Clinic in Rochester MN. They offered to treat it with right side Proton beam radiation only (6 weeks/5 days per week). After receiving these 3 treatment options my wife and I went to work on researching all option available...and I mean a ton of research. During that time period I made radical changes to my diet..cutting out sugar, eating organic meats/veggies/fruit and continued to exercise. 4 weeks later I had a biopsy surgery on my right tonsil and base of tongue. This was supposed to be a 45 minute deal but the ENT took 7 different swipes at the areas and 3 hours later could not find any cancer. SO...with the results of my biopsy coming up a nothing burger combined with the FNA showing a very small trace of czancer activity, this left me wondering if the radical changes I made to my diet and lifestyle contributed to the difficuly finding the cancer (?)well, long story short...UW's board met and decided that IMRT ro the right side nodes and tonsil would be the best option. I chose Mayo and Proton beam instead.

 

Treatment:

 

I drove 3 hours (one way) every day by myself to treatment. They worked with me on my schedule so that I would have evening treatments on Monday's and Thursday's so that I could stay overnight and then have early morning treatments on Tuesday's and Friday's so that I could be home by noon. Wednesday's I just drove straight there and back. 

 

I worked the entire 6 weeks of treatment (I normally work from home/computer) My boss was very understanding and cooperative.

 

I worked with the American Cancer Society on low priced hotels in Rochester that partner with Mayo for cancer patients to provide affordable accomodations...as low as $19 per night!! nice rooms.

 

Our Insurance initially denied our Proton Beam therapy treatment option...stating that it was considered "experimental" we followed their appeal process which included a well written lettter from the chair of Radiation Oncology Dept at Mayo and my doctoer..Dr. Robert Foote. They rejected his letter and the next step was to have a conference call with a 9 member insurance appeals board. My doctor and I had 20 minutes to convince them that they needed to reverse their decision due to the fact that they were referencing old data from 2014 when they stated Proton beam was experimental. 3 days later we received news that they reversed their intial denial and that my treatment would be covered in full ...after deuctable of course. I was elated. 

 

I continued to do yoga/exercise/and walk a mile or two per day throughout treatments. Breezed thru week 4 but about half way thru week 5 the discomfort in my throat reached about a 3 level and would peak at about a 5 level during the night while sleeping. dry mouth was an issue but just needed to drink ewater and take some magic mouthwash and back to sleep. 

 

I only took tylenol and advil at times to assist with the pain but it was manageabke with out them.

 

Week 6 I took a couple oxycodone at night primarily to help with sleeping but it did help a bit with the pain...which was still around a 5 at it's worse.

 

I did develop a sore on the right side of my tongue but that was expected as It rubbed against a dental fixture and I figured it would be an issue. Hurt to talk at times

 

Mucositis was hit and miss. nothing choking or gaging me. very tolerable.

 

Taste buds remained about 50% throughout. due to the fact that they only hit my right side with the pencil beam. 

 

I didnt need any dental floride treatments or have metal fillings or cavities/teeth remove. Doc said thatls one of the big advantages of this therapy. I brush my teeth 3 times per day and swish saltwater and baking soda up to 6 times per day. 

 

Eating solid food became more challenging around the end of week 4. I found that eating in the bathroom with the shower running on hot steamed up the room and also soothed my throat so that I could eat more comfortably. I told my wife this and she smiled and said..."great, now we can have naked picnics in the bathroom!"

 

I'm now 7 days post reatment. this has been the hardest time I've had so far. Mostly because of the burns to my neck. I'm fair skinned and it really started to take it's toll at the beginning of week six. I've done/tried all the suggestion you all have made but it seems the best for me has been silver sulfadiazine cream...multiple times per day. and at night before bed and mornings when I wake up I remove the cream..very painful and then add a soaked cloth with water and white vinegar for about 15 minutes. then reapply the cream ...which is immediatly soothing and brings the pain from the burns down fron an 8 to a 1. Additionally my throat pain and mouth sore pain is a constant 4 or 5 but manageble when I take some tylenol and ibuprohen and magic mouthwash. All of this was expected and told to me by my doctor.

 

Let me say a few things about my care team. Mayo is a CLASS act. My doctor is the Chair of the dept and he (out of 6 doctors I visited from other institutions) was the only one to give me his business car WITH his personal email address. I had probably emailed him over 50 times during my treatment course as well as before treatments and he always responded usually within 6 hours. He worked his butt off to help my insurance cover this therapy. And I repeat...He is the chair of the entire Mayo Oncology dept. which means...he has alot of more importand $@&# to do than answer piddly questions I have about a certain side affect I'm dealing with.  Remarkable! The entire support team was extremely helpful and accomodating. Much appreciation.

 

Doc say's the neck should start turning the corner and healing next week. he said the throat area will be another few weeks and then start seeing weekly improvment. 

 

I know that we all have options. we all have reasons for why we chose the treatment plan we did. none is better or worse than the other. I did my research and listened to my gut and chose the treatment option I chose that I felt was best for me based on my condidtion. My story is only here to help many of those who are entering this scary uncertain world of HNC and are looking for testimonials/ideas/stories/options. My journey is far from over...the real proof of my treatment will be in the coming months and years of follow up tests and scans. I'm cautiously optimistic and hoping for the best!! Good luck to all of you here and all of you lurking in the background...doing your research..like I did behind the scenes.!

 

Did I mention that we have six kids still under our roof? 17yo boy, 16yo boy,15yo boy, 9yo boy and twin 8 year old girls (our surprise babies) YES our house is a crazy madhouse. We chose to tell the older boys very early on about my cancer. the littles learned about it last week. I couldnt hide the obvious physical side affects from them.(neck burns/lost 40 pounds/trouble eating foods etc). They are all troopers and handling it very well. as a matter of fact they now enjoy telling "everyone" that I have/had cancer. to the point where I have to draw a line and make sure they ask me first. LOL. So...If I dont get back to any questions anyone might have for me....I have an excuse...busy with all these bodies. 

 

 

 

Amazing story. Thank you for sharing.