Hi I'm Richard - Just dx'd squamous cell carcinoma Feb 9th
I am 53 and I was diagnosed with squamous cell carcinoma on February 9, 2016. I don't know much more than that as of yet, but I meet with the cancer surgeon on February 29. One lymph node on the left side of my neck is 2.5 cm X 4.5 cm, an the CT scan showed a mild asymmetrical thickening on left base of tongue - possibly a neoplasm. I am working with a cancer Nurse Navigator who is recommending that I see a radiology Oncologist as a second opinion for treatment options, which I intend to do
Comments
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welcome
SQLNOLE,
Welcome to the H&N forum, sorry that you are here, but it sounds like you are describing me.
Stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).
Hang in there, ask questions, it is a learn as you go from here. It is confusing and slow to start, but once you have your plan you will be on your way.
God luck,
Matt
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Welcome to H&N group
Welcome SQLNOE to the group, and also sorry you need to be here. I would recomend a second opinion, bet to a major teaching hospital that has a tumor board. That is where all the doctors, surgeon, Chemo, Radiology,Radiation oncologist, and even a few others all get together and agree what the best treatment is best for you. Mine was Stage 3 SCC just above my vocal cords. Rad came in first and he wants radiation, then the sergeon came in and a few others. The head doctor I wanted is the sergeon and also the head doctor. I did a lot of research and I wanted him. Well I have bad lungs so most options went out the door. The head doctor came in and told me what my options were and we went from there. For me, I made the only choice There was, but never regreated it. They had to remove my larnyx because my lungs were too bad and I would not survive radiation or surgery with out doing this. No anesthesiologist woud put me under unless it was this way. They took 86 lymph glands as a precaution so it was 8 hour surgery, but could have gone up to 15 hours.
Don't go local. We have the best local hospital in all the central valley of California, but I had been seen by an oncologist 9 months ago and told "I do not have cancer". The local hospital survival for cancer is 1 out of 10 make it. I went to Stanford and they are 9 out of 10. I have been cancer free 28 months but they wont say cured until 5 years.
I will say it is a bumpy road you are going down, with many twists and turns. The treatment is rough, but so many have been there and will help where we can. This is a wonderful support group and really helped me when I was in a very dark place. Only about 5 people thought I would make it as I have stage 3 COPD and was kinda a blue-gray color and coughing up onces of blood. 250 people at work and 2 thought I would make it, my own brother and son didn't think I would. I kmew if I got to Stanford and they cut it out, I would be fine. When you go to any doctor, you will have questions so write them down and leave room for answers. After you ask a question and they start to answer, you can go blank, so just hand the questions to them
Bill
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Welcome
I am sorry that you have joined our exclusive club. I was diagnosed stage 3 tonsil cancer, hpv positive with one
lymph node involvement. I had surgery to remove the tonsil and 6 1/2 weeks of IMRT on both sides of the neck with no chemo
and no neck surgery. Look at the following link on how to take care of your teeth
http://www.nidcr.nih.gov/oralhealth/Topics/CancerTreatment/OralComplicationsCancerOral.htm
Also read the following link about research on how to treat HPV head and neck cancer
My last pet scan on sept 2015 showed no cancer and the following CT scan 2 weeks was also clear of cancer.
I am so glad I met the radiation oncologist because he is the one who insisted that I do not need chemo.
you can send me a private message for more information.
Arman
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Welcome Richard. Sorry about
Welcome Richard. Sorry about your diagnosis, but you have come to the right place for support and lots of great information. My husband was diagnosed with tongue cancer in October 2015. He finished his treatment in January 2016 (surgery, rads, and chemo). Every case is different, and meeting with the surgeon and the radiation oncologist sounds like a great plan. my husband got multiple opinions as well. Hang in there...waiting for these meetings is the hardest part. I will be thinking of you as you begin your journey. Glad you found this wonderful group.
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Hi Richard and welcome....
You arrived here at the exact same time as I did when I was diagnosed. I was scared pea green! This board is great, and you will find needed information, and a safe place to come during treatment....most of us have been there, are there, or just left there
. My cancer was behind the nose (NPC)...but treatment for all of these cancers is pretty much the same....rads and chemo....and possibly surgery. I'm 3 1/2 years out of my first round with the beast....and 10 days out of the second round. Just stick close to this board....we'll hold your hand through this....it goes faster than it might appear from the beginning end of the tunnel.
p
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Welcome, Richard. My hubby
Welcome, Richard. My hubby had stage 4 SCC of the tonsil with lymph node involvement. He is NED after 7 weeks of chemoradiation with cisplatin and IMRT. It was rough going, but we made it.
It's always so hard in the beginning when the news is still sinking in and you're basically in shock. Take your time meeting with all the team members and ask questions. Bring someone with you to all your appointments to take notes and for support. Hopefully you have a caregiver who will walk the journey with you. The treatment decisions can be overwhelming. Just be sure to do your research so you can make an informed decision and then go with your gut.
You found the right place here - lots of supportive folks!
Keep in touch!
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Sorry you had the need to find us.the_wife said:Welcome, Richard. My hubby
Welcome, Richard. My hubby had stage 4 SCC of the tonsil with lymph node involvement. He is NED after 7 weeks of chemoradiation with cisplatin and IMRT. It was rough going, but we made it.
It's always so hard in the beginning when the news is still sinking in and you're basically in shock. Take your time meeting with all the team members and ask questions. Bring someone with you to all your appointments to take notes and for support. Hopefully you have a caregiver who will walk the journey with you. The treatment decisions can be overwhelming. Just be sure to do your research so you can make an informed decision and then go with your gut.
You found the right place here - lots of supportive folks!
Keep in touch!
Best wishes for an easy journey
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Squamous Cell Club member
Richard,
I have been a club member for about 20 years now. I am sure the procedure has improved since I had mine. Unfortunately mine was an unknown primary so they gave me the choice of surgery, radiation or chemo. My first thought was to get it out of me and my ENT was happy about that because it would be easier for him to cut through fresh meat than cooked meat, so after 7 hours of surgery I was 6 pounds lighter from my neck a right shoulder. He removed about 68 lymph nodes. The next step was to follow up with either radiation or chemo. I opted for the radiation because I saw how sick my sister got on the chemo for her breast cancer. After 30 days of radiation they concluded they got it all. Now the draw back!! I don't know what the after effects of the chemo would have been, but about 10 years ago I noticed that I was having a hard time swallowing, not to mention that my deep bellowing voice had now turned to a raspy whisper. The thing you have to realize is that radiation burns everything it comes in contact with. Head & neck cancer is one of the worst areas to have cancer because that is the entrance way to all of your nutrition and your voice. Radiation burned my vocal cords to a crisp and over the years the mustles in my throat and the right side of my tongue have collapsed making it very hard to swallow solid foods and even pills. I have my throat streatched every 6 months to assist with eating but that still doesn't help some foods. Every morning I put my cereal and a hand full of blueberrys or strawberrys into a Bullet blender with milk and drink my breakfast and the same goes for my dinners. I will take whatever my wife is eating and stick it into the Bullet with some water or other liquid and blend it to a thin drink. Actually the tase is still there and I am getting my nutrition.
I am not trying to discourage you whatsoever as all of this beats the alternative. i just want to make sure you have a long sitdown with your Oncologist and have him explain the effects radiation with have on you as opposed to chemo. My sister is a survivor for over 35 years and is a healty 76 year old with no noticable after effects of her chemo treatments. I often wonder if I opt'ed for the best treatment.
Oh! And the most important thing is ATTITUDE!! You are going to kick this evil monsters butt my friend and your strongest weapon is your attitude!!
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Welcome
Welcome Richard.
I was 51 when I was diagnosed with Stage 3 SCC HPV+ in January of 2015. Went through 30 treatments IMRT 7 fields. So far all check ups with oncologist and ENT have been positive.
Coming up on 1 year post treatment and will have my one year scan in March/April.
I do not post a great deal but the information and people on this page are truly a blessing. They have all been through similar experiences and can offer you insight and invaluable information.
You will get though treatments and everyone here will offer support and guidance as you move through each part.
If you have any questions or just want to touch base, you can message me.
Good Luck and Blessings to you.
Tom
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Thank you all!tomb247 said:Welcome
Welcome Richard.
I was 51 when I was diagnosed with Stage 3 SCC HPV+ in January of 2015. Went through 30 treatments IMRT 7 fields. So far all check ups with oncologist and ENT have been positive.
Coming up on 1 year post treatment and will have my one year scan in March/April.
I do not post a great deal but the information and people on this page are truly a blessing. They have all been through similar experiences and can offer you insight and invaluable information.
You will get though treatments and everyone here will offer support and guidance as you move through each part.
If you have any questions or just want to touch base, you can message me.
Good Luck and Blessings to you.
Tom
Thank you all for the heart felt greetings and information!
I will read them over several times during this week as I await my appointment next Monday.0 -
Jim and RichardJim Willis said:Squamous Cell Club member
Richard,
I have been a club member for about 20 years now. I am sure the procedure has improved since I had mine. Unfortunately mine was an unknown primary so they gave me the choice of surgery, radiation or chemo. My first thought was to get it out of me and my ENT was happy about that because it would be easier for him to cut through fresh meat than cooked meat, so after 7 hours of surgery I was 6 pounds lighter from my neck a right shoulder. He removed about 68 lymph nodes. The next step was to follow up with either radiation or chemo. I opted for the radiation because I saw how sick my sister got on the chemo for her breast cancer. After 30 days of radiation they concluded they got it all. Now the draw back!! I don't know what the after effects of the chemo would have been, but about 10 years ago I noticed that I was having a hard time swallowing, not to mention that my deep bellowing voice had now turned to a raspy whisper. The thing you have to realize is that radiation burns everything it comes in contact with. Head & neck cancer is one of the worst areas to have cancer because that is the entrance way to all of your nutrition and your voice. Radiation burned my vocal cords to a crisp and over the years the mustles in my throat and the right side of my tongue have collapsed making it very hard to swallow solid foods and even pills. I have my throat streatched every 6 months to assist with eating but that still doesn't help some foods. Every morning I put my cereal and a hand full of blueberrys or strawberrys into a Bullet blender with milk and drink my breakfast and the same goes for my dinners. I will take whatever my wife is eating and stick it into the Bullet with some water or other liquid and blend it to a thin drink. Actually the tase is still there and I am getting my nutrition.
I am not trying to discourage you whatsoever as all of this beats the alternative. i just want to make sure you have a long sitdown with your Oncologist and have him explain the effects radiation with have on you as opposed to chemo. My sister is a survivor for over 35 years and is a healty 76 year old with no noticable after effects of her chemo treatments. I often wonder if I opt'ed for the best treatment.
Oh! And the most important thing is ATTITUDE!! You are going to kick this evil monsters butt my friend and your strongest weapon is your attitude!!
Welcome to both of you- to the place nobody wants to be, but is very happy the place is here to share, learn, etc., with others who are going thru the roughly the same thing, or have been thru it.
Jim- 20 years ago? Wow, and congratulations. I'm almost 7 years. What we have in common is the "unknown Primary." And things have changed kinda bigtime, it seems. I gather your's was a C more in your throat, than mine- which came back as Nasopharyngeal from the biopsy sample sent to the U of Iowa lab. Had 2 englarged lymphs on the left side of my neck that told me I had a problem. Had 2 surgical biopsys looking for the Primary, but none found. Tx was NO SURGERY. Instead, Cisplatin chemo delivered in a little more intense way than anybody else, here, and concurrent rads applied in 20 places/session, which did include both sides of my neck. Unlike most, with PEG and Power Port installed before tx began, on the afternoon of day #5 my mouth started changing into what became a trainwreck over an extremely bad weekend that started me using the feeding tube, exclusively; then, on day #8 was started on Morphine to go with the chopped-up Hydrocodone, Magic Mouthwash, Nystatin for Thrush, sips of water, and mostly grin and bear it for the rest of tx; which had a 2-week pause starting on week #5 when I was too sick for any rads, and then week #6 in the hospital getting antibiotic drips that solved my sick problem, and a lot more- the last couple weeks of rads, for me, was easy. And you had such a major Op., instead, that removed all those lymphs, and more? 6 lbs? The rads shrunk my lymphs back to size, and it seems the concurrent C&R got rid of all the C in me, at least for almost 7 years, now. I have had a lot of tooth damage, and am dealing with neck spasms many times/day; however, I do think my tx was a better alternative than the surgical 6 lbs. and 68 lymphs removal you say was "the way" of 20 years ago for unknown Primary- you in 1996, as compared to mine in 2009. I have no burning in my throat, and can swallow okay, though do have a problem with "horse tablet" sized pills. What was your specific C? Biopsy of some sort should have been done, and the cell structure of that sample analyzed by a University lab would have told them what your specific C was. Did they ever tell you?
Richard- you don't mention an ENT or PET scan. They involved, and happen, yet? Never really heard of a C Nurse Navigator. ENT has to do a biopsy to confirm it is C, then present it to Chemo and Rad Drs. for their opinions on the options. PET scan is done to see if it has spread, and therefore they can actually tell you what "Stage" your C is. Are you near a big city with a large C Med Center? I only ask these things in concern that you will get the tx you should.
kcass
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stay strong
I had almost the exact same thing as you except on the right side. It has been a tough road with the radiation part but we have to do whatever it takes it we want to go on living. I had about the same size tumor at the base of my tongue and one lymph node that was enlarged. I elected to have the surgery and radiation. I didn't want to do chemo if I didn't have to because I had a liver transplant done in 2014. My surgeon and oncologist believed that with the type of cancer I had P16 HPV that I didn't have to do the chemo if I didn't want to. I'm 5 months post radiation and was NED at 3 months. I scheduled for another CT scan in March. Hopefully eveything will stay the same. There will be some hard times but remember it's just for a few months and you'll be done with it all. then you can start healing. I stil have constant twitches on the side of my neck which is weird but that my ease up eventually. I'm going to a massage therapist and that helps a great deal. Highly recommend that when your recovering. This site has a lot of information to help you prepare for this journey. It helped me a lot.
Good luck,
Gary
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kcassKent Cass said:Jim and Richard
Welcome to both of you- to the place nobody wants to be, but is very happy the place is here to share, learn, etc., with others who are going thru the roughly the same thing, or have been thru it.
Jim- 20 years ago? Wow, and congratulations. I'm almost 7 years. What we have in common is the "unknown Primary." And things have changed kinda bigtime, it seems. I gather your's was a C more in your throat, than mine- which came back as Nasopharyngeal from the biopsy sample sent to the U of Iowa lab. Had 2 englarged lymphs on the left side of my neck that told me I had a problem. Had 2 surgical biopsys looking for the Primary, but none found. Tx was NO SURGERY. Instead, Cisplatin chemo delivered in a little more intense way than anybody else, here, and concurrent rads applied in 20 places/session, which did include both sides of my neck. Unlike most, with PEG and Power Port installed before tx began, on the afternoon of day #5 my mouth started changing into what became a trainwreck over an extremely bad weekend that started me using the feeding tube, exclusively; then, on day #8 was started on Morphine to go with the chopped-up Hydrocodone, Magic Mouthwash, Nystatin for Thrush, sips of water, and mostly grin and bear it for the rest of tx; which had a 2-week pause starting on week #5 when I was too sick for any rads, and then week #6 in the hospital getting antibiotic drips that solved my sick problem, and a lot more- the last couple weeks of rads, for me, was easy. And you had such a major Op., instead, that removed all those lymphs, and more? 6 lbs? The rads shrunk my lymphs back to size, and it seems the concurrent C&R got rid of all the C in me, at least for almost 7 years, now. I have had a lot of tooth damage, and am dealing with neck spasms many times/day; however, I do think my tx was a better alternative than the surgical 6 lbs. and 68 lymphs removal you say was "the way" of 20 years ago for unknown Primary- you in 1996, as compared to mine in 2009. I have no burning in my throat, and can swallow okay, though do have a problem with "horse tablet" sized pills. What was your specific C? Biopsy of some sort should have been done, and the cell structure of that sample analyzed by a University lab would have told them what your specific C was. Did they ever tell you?
Richard- you don't mention an ENT or PET scan. They involved, and happen, yet? Never really heard of a C Nurse Navigator. ENT has to do a biopsy to confirm it is C, then present it to Chemo and Rad Drs. for their opinions on the options. PET scan is done to see if it has spread, and therefore they can actually tell you what "Stage" your C is. Are you near a big city with a large C Med Center? I only ask these things in concern that you will get the tx you should.
kcass
I live in Charlotte. The ENT ordered a CT scan from my eyes to the the top of my lungs, which showed the extent of the enlargement of my one lymph node. Then he did a FNA of the node which showed two markers for SCC. The nurse navigator works for the hospital and she helps to keep the process going and to make sure that all of the bases are covered.
The surgeon is Yale undergrad and Harvard Medical School, so he is top shelf.
I don't know the stage yet, but from what I have read it is III or IV, since there is already nodal involvement.
Also, I am sure that I will headed for a PET scan in short order after Monday....0 -
squamous I hate that word
Hey, I'm like the others and hate to meet you here. I had my left tonsil removed and the cancer spread to my lymph nodes on left side. I had 35 rad treatments and double dose of Cisplatin chemo and 4 months after treatment still suffering. The good news I keep hearing is that the cure rate is high. Right me about anything and I'll try to answer. Mine was hpv related and didn't even know my wife had it. She has since left me and I feel sorry for the poor soul she meets next.
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Welcome. This board helped
Welcome. This board helped me tremendously and still does. Everything changes during treatment from day to day and week to week and there is such a wealth of information here. I think waiting is the hardest part. Once you have a plan time will move faster!
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Doc visit today
My wife and I met with the head and neck cancer doc today. He was able to find the primary tumor, which is at the junction of my left tongue base and tonsil. He discussed the various options and we are leaning towards transoral robotic surgery plus removing 8 or 10 lymph nodes down left side of neck to test for spread. Only the big one has been tested thus far via FNA. He said that if the safety margin showed no extra capsular spread and the other lymph nodes didn't either, then we would not need rad or Chem, just monitoring going forward. Does this ring true to you guys? We go to see robotic surgeon on Thursday and scheduling second opinion then also.
Has anyone had robotic surgery at junction of tongue and tonsil?0 -
think soSQLNOLE said:Doc visit today
My wife and I met with the head and neck cancer doc today. He was able to find the primary tumor, which is at the junction of my left tongue base and tonsil. He discussed the various options and we are leaning towards transoral robotic surgery plus removing 8 or 10 lymph nodes down left side of neck to test for spread. Only the big one has been tested thus far via FNA. He said that if the safety margin showed no extra capsular spread and the other lymph nodes didn't either, then we would not need rad or Chem, just monitoring going forward. Does this ring true to you guys? We go to see robotic surgeon on Thursday and scheduling second opinion then also.
Has anyone had robotic surgery at junction of tongue and tonsil?Others speak of davinci robotic surgeries in that general area.
As for the C&R: yes, that sounds logical. First, you have to heal from the Op. As they monitor it, if something shows then that'll bring at least the rads into play. Doing rads as only a saftey play can be a negative, as rads to the same place a second time is a risky business. Sounds to me like your Dr has a good plan in place for you.
kcass
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I only had surgerySQLNOLE said:Doc visit today
My wife and I met with the head and neck cancer doc today. He was able to find the primary tumor, which is at the junction of my left tongue base and tonsil. He discussed the various options and we are leaning towards transoral robotic surgery plus removing 8 or 10 lymph nodes down left side of neck to test for spread. Only the big one has been tested thus far via FNA. He said that if the safety margin showed no extra capsular spread and the other lymph nodes didn't either, then we would not need rad or Chem, just monitoring going forward. Does this ring true to you guys? We go to see robotic surgeon on Thursday and scheduling second opinion then also.
Has anyone had robotic surgery at junction of tongue and tonsil?I only had surgery and no chemo or radition. Mine was a tumor in the supraglottic just above my vocal cords. They removed my larynx and 86 lymph glands, 48 on the left and 38 on the right. I was checked every two months the first year and now every 6 months. 29 months and I have never been CT or PET after surgery. No need as they got it all, and them some.
I have read and heard very good things about robotic surgery.
Bill
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