Just diagnosed Squamous Cell Cancer on right tonsil and right lymph node(s)
Help! 48 year old, married father of 3. Otherwise healthy and fit. Driving myself crazy. Very scared. Just diagnosed with squamous on right tonsil and a 3cm x 2cm mass in neck. Pet scan isn’t until next week. Terrified. Ive had very minor symptoms that I just thought related to getting older. I’ll be 49 in June. I have periodic reflux, periodic blood in my mucous, or like a thicker brownish mucous. Since diagnosis on Tuesday, I’m noticing a bit of pain or discomfort at the bottom of my throat, noticing dry mouth, slightly bad taste in it. I’ve been a little drained of energy for the past two months. I am so scared and am praying that it is only in the tonsil and neck. Dr says that as long as the pet scan shows that it’s just tonsil and neck, I will have surgery on 3/25, a few weeks later will start 7 weeks of radiation. I’m seeing all kinds of horror stories and don’t know what to expect on my path. Does everyone require a feeding tube? Does everyone lose a lot of weight? Does everyone have a hellacious task ahead of them? What’s the best case scenario for me? the Worst case scenario is terrifying. i have an incredible wife and 3 incredible kids —- 16, 14, and 11. I MUST be healthy and strong for them for the next 30 years. Please help me believe that I will be! Thank you.
Comments
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Feeding tube
My husband is coming up on two years from the end of treatment. All I can tell you is that if they recommend a feeding tube, I know it is a scary thing but please do not think it is the end of the world but rather look at it as a tool to get you through in the best shape possible. My husband had his put in before he started treatment. It ended up saving his life. Four months after treament ended he had it out. People have extremely strong feelings about feeding tubes. Do what feels right to you. No one wants one but we learned to be so grateful for it. It was a slow road to recovery but he eventually returned to work full time, now can eat almost anything thing by mouth. Getting to this point was a journey but keep a positive attitude. You can do it and it sounds like you are blessed with family support. To see him you would really never know what he went through. I will not lie; it can be a very rough and bumpy ride and the response of each patient to treatment is different. I just think in your situation you need to consider doing absolutely everything you can to ensure a cure and a longterm recovery. That means getting your treatment from a comprehensive cancer center where you have a team approach that should include a speech path if you have radiation. Listen to your treatment team and lean on them. You have a great chance for a cure.
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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
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Hello and welcome!
Well, that didn't take long. In just a little over an hour you have had two excellent responses! Take heed for the folks here have gone through it all.
My best input here is to ask you to try to calm down. Stress is not your friend. I know when I first learned of my diagnosis I almost passed out in the examining room chair. But that doc - a local head and neck surgeon, and probably the only one in town - was a very high strung guy, as were his nurses. I didn't feel comfortable with them and ended up going to Cleveland Clinic for a second opinion, and what a difference! The folks there were very calm and reassuring, and that allowed me to be calm while dealing with the side effects of treatment. I'm glad I went there.
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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
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Newly diagnosed
mike, you got this. Just take it one day at a time and things will start to fall in place. As Bugsby said, you want it to be HPV based because it responds so well to treatment. Like yours, mine was in my right tonsil and had metastasized to the lymph nodes in the right side of my neck. They didn’t want to do surgery because of the risk and said radiation would take care of it. It did and i’ll Be cancer free 6 years this summer and doing great.
I did have a feeding tube and not sure how I would have made it without. Radiation is brutal but you can do it. See if you are a candidate for a chemo drug called erbitux. Some of us on the site had that and others had cisplatin. Erbitux has much less side effects.
Go to a big cancer center with the latest radiation equipment.
you got this
keith
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Thank You!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!
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Thank you!KB56 said:Newly diagnosed
mike, you got this. Just take it one day at a time and things will start to fall in place. As Bugsby said, you want it to be HPV based because it responds so well to treatment. Like yours, mine was in my right tonsil and had metastasized to the lymph nodes in the right side of my neck. They didn’t want to do surgery because of the risk and said radiation would take care of it. It did and i’ll Be cancer free 6 years this summer and doing great.
I did have a feeding tube and not sure how I would have made it without. Radiation is brutal but you can do it. See if you are a candidate for a chemo drug called erbitux. Some of us on the site had that and others had cisplatin. Erbitux has much less side effects.
Go to a big cancer center with the latest radiation equipment.
you got this
keith
Thank you!
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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!
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Thank you!ERomanO said:Hello and welcome!
Well, that didn't take long. In just a little over an hour you have had two excellent responses! Take heed for the folks here have gone through it all.
My best input here is to ask you to try to calm down. Stress is not your friend. I know when I first learned of my diagnosis I almost passed out in the examining room chair. But that doc - a local head and neck surgeon, and probably the only one in town - was a very high strung guy, as were his nurses. I didn't feel comfortable with them and ended up going to Cleveland Clinic for a second opinion, and what a difference! The folks there were very calm and reassuring, and that allowed me to be calm while dealing with the side effects of treatment. I'm glad I went there.
Thank you!
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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!
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Same story read..Mindy22Mike said:Thank You!
Thank You!
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.
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forgot to mention...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.
Im now 8 months NED! life is back to normal. slight dry mouth on right side of throat in the morning when i wake up..BUT i'm a mouth breather when i sleep. Taste is back 85-90%. Never lost all taste during treatment..about 50%. You can do this. I would definitely look into Proton beam . I would definitely get a second opinion, and find a center that offers Proton beam rads.
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Mindy22Mike
EASY. You are in the worst of times- before the Op. and tx, when all you can do is worry. You haven't even had a Pet Scan yet. The worst-case scenarios rarely happen, nowdays. H&N tx has advanced BIG TIME over the past 20 years. Your survival rate will most likely be in the 95+% range. And yes, the tx is rough, but don't hold back on telling your Drs. how you are coping, and they'll prescribe what you need to get you thru it as painless as possible. We all survive the initial bout with H&N, and now there's new technology that's making return bouts survivable. Within months after tx you will no doubt remember what you've been thru, but will look at life as being very good.
Your C is different from mine, but others have no doubt been thru what you will be. I'm a 10 year survivor. Man-up, keep a positive attitude, and you'll be just fine. A lot of the long time survivors are no longer active on this forum, but there are plenty of them. Was only in the early days when the C medical knowledge & tech were developing, since I started on this forum in 2009, did we have a number of members who are no longer with us- mainly because their 1st bout wasn't treated as it would be now.
As will all Cs, the key is how early it is caught, and then the specifics pertaining to how it best can be dealt with. And, if you have the $ and insurance, can always go to or get a 2nd opinion from one of the top C Medical Centers. Feeding tubes are sometimes optional (wasn't for me), but I kept my G-tube for over a year after tx and I used, just in case- so it was no big deal to me. Went back to work a month after my last Rad, too. And if you think I had pushover C- check out my profile page.
Believe you can beat this thing, and you will.
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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.
Thanks for sharing!
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Thank you!Logan51 said:Mindy22Mike
EASY. You are in the worst of times- before the Op. and tx, when all you can do is worry. You haven't even had a Pet Scan yet. The worst-case scenarios rarely happen, nowdays. H&N tx has advanced BIG TIME over the past 20 years. Your survival rate will most likely be in the 95+% range. And yes, the tx is rough, but don't hold back on telling your Drs. how you are coping, and they'll prescribe what you need to get you thru it as painless as possible. We all survive the initial bout with H&N, and now there's new technology that's making return bouts survivable. Within months after tx you will no doubt remember what you've been thru, but will look at life as being very good.
Your C is different from mine, but others have no doubt been thru what you will be. I'm a 10 year survivor. Man-up, keep a positive attitude, and you'll be just fine. A lot of the long time survivors are no longer active on this forum, but there are plenty of them. Was only in the early days when the C medical knowledge & tech were developing, since I started on this forum in 2009, did we have a number of members who are no longer with us- mainly because their 1st bout wasn't treated as it would be now.
As will all Cs, the key is how early it is caught, and then the specifics pertaining to how it best can be dealt with. And, if you have the $ and insurance, can always go to or get a 2nd opinion from one of the top C Medical Centers. Feeding tubes are sometimes optional (wasn't for me), but I kept my G-tube for over a year after tx and I used, just in case- so it was no big deal to me. Went back to work a month after my last Rad, too. And if you think I had pushover C- check out my profile page.
Believe you can beat this thing, and you will.
Thank you!
0 -
Amazing story. Thank you forskidog 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.
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Just read this again. AmazingLogan51 said:Mindy22Mike
EASY. You are in the worst of times- before the Op. and tx, when all you can do is worry. You haven't even had a Pet Scan yet. The worst-case scenarios rarely happen, nowdays. H&N tx has advanced BIG TIME over the past 20 years. Your survival rate will most likely be in the 95+% range. And yes, the tx is rough, but don't hold back on telling your Drs. how you are coping, and they'll prescribe what you need to get you thru it as painless as possible. We all survive the initial bout with H&N, and now there's new technology that's making return bouts survivable. Within months after tx you will no doubt remember what you've been thru, but will look at life as being very good.
Your C is different from mine, but others have no doubt been thru what you will be. I'm a 10 year survivor. Man-up, keep a positive attitude, and you'll be just fine. A lot of the long time survivors are no longer active on this forum, but there are plenty of them. Was only in the early days when the C medical knowledge & tech were developing, since I started on this forum in 2009, did we have a number of members who are no longer with us- mainly because their 1st bout wasn't treated as it would be now.
As will all Cs, the key is how early it is caught, and then the specifics pertaining to how it best can be dealt with. And, if you have the $ and insurance, can always go to or get a 2nd opinion from one of the top C Medical Centers. Feeding tubes are sometimes optional (wasn't for me), but I kept my G-tube for over a year after tx and I used, just in case- so it was no big deal to me. Went back to work a month after my last Rad, too. And if you think I had pushover C- check out my profile page.
Believe you can beat this thing, and you will.
Just read this again. Amazing story. Thanks for sharing.
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just diagnosed
You are in the right place for info.... yes , this is a terrible and scary diagnosis, but please get a feeding tube !!! I did not have one until I was at the end of my treatment and let me tell you, it saved my life, I had dropped 70 lbs, yes treatment is horrible, but lean on this community for help, everyone here has different stories and we all have been through this, myself stage 4, but I am still here today, you will be tested,, take all your pain meds, and do not be affraid to ask for help. You will be a warrior, I am 1 year myself, keep strong, and put on as much weight as you can before treatment starts, you can do this... be the Storm!!!!
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Welcome
Mindy22Mike,
Welcome to the H&N forum, where everyone in this forum has “walked in your shoes”. Being scared and the anxiety a cancer diagnosis creates is normal, so you have that going for you. You will learn a lot about cancer and treatment options quickly. You will have no choice, if you want to get a handle on this (life event).
My cancer was stage IVa, SCC, BOT, 1 lymph node, HPV+ (surgery, rads & Erbitux). Very similar to you, a normal healthy 55 years old with a blasted; “WHAT THE HECK IS THIS LUMP?” . Well, it all began in November 2011.
I had 2 PEG tubes. One as bad as it gets and the other one very good. Looking back, I may have tried to go through treatments without a PEG, but that is only because this forum told me to “DRINK LOTS OF WATER AND SWALLOW OFTEN”. Drinking lot of water and swallowing often has become a mantra to me and I preach it to all new members. So be on team CivilMatt do what I recommend (it really is important, some members forget how to swallow, (no joke)).The PEG or NO PEG members are very divided on the subject and I could see some of the NO PEG members trying to knock the PEG out of the doctors hand during insertion (take that with a grain of salt).
Not everyone has a “hellacious task ahead of them”, there are a few members who do not bring it up (unless pressed) that they had a pleasant ride through cancer treatment. I always hope that each new member will join that club. If not, there are a number of side effects to leave lasting memories for you.
The best case scenario is you are cured with minimal permanent side effects, the worst is the opposite.
I think you will do fine; you will make it through treatments and go on to enjoy life with your incredible wife and incredible kids-15, 14 and 11.
Now, I am going outside to work on shelves and enjoy the sunshine. AND I am going to enjoy some ice cream today and a candy bar.
Matt
P.S. I still drink maybe 10 glasses of fluids daily and I used 2 Xyilimelt tablets at bedtime last night.
0
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