Just Diagnosed Squamous Cell Carcinoma of Neck with unknown primary

13

Comments

  • blackswampboy
    blackswampboy Member Posts: 341

    The fears...
    Although we do not know exactly that it is HPV16+ derived at this time, the ENT is only speculating it is a good possibility as he is not a smoker or heavy drinker. We are thinking if it is, it stems from a very long time ago and just lied dormant. Since there is so much uncertainty from doctors relating to HPV16+, seems all we can do is guess a bit. But, I think to myself, does it really matter where it came from? I just want to focus on how to cure the cancer that has possibly stem from it. I understand that if it is HPV related that the response is good.....what a way to wish/hope it's HPV derived.

    If you don't mind me asking, has your spouse or significant other been tested prior or after the diagnosis? If you choose not to answer, that's fine or you can private message me. I'm just curious for our own situation.

    God Bless you for taking the time to share your thoughts and experiences with me and others.

    small blessings
    yes, curing the cancer is our priority now. heartfelt wishes for your loved one's speedy recovery.
    my chemo onc was pretty certain of HPV-16 at my first meeting with him, and testing confirmed. it matters only because prognosis is pretty good for HPV-associated throat cancer. small blessings. ;-)

    also, I do not want my son (or anybody for that matter) to have to go through what I've gone through. not to mention, my son's dear 21-year-old GF! she is the reason for his vaccination.
    knowing what we already know, many HPV-associated cancers should be largely preventable.

    I'm single (divorced), which makes tracking more complicated. even worse, my younger days were spent overseas, and tracking down former significant others is nigh impossible.
    have you discussed getting tested for HPV with a doctor? (edit: never mind, I see your response below about HPV-16 detection with routine PAP smears. thank god for that.)
  • cureitall66
    cureitall66 Member Posts: 913

    small blessings
    yes, curing the cancer is our priority now. heartfelt wishes for your loved one's speedy recovery.
    my chemo onc was pretty certain of HPV-16 at my first meeting with him, and testing confirmed. it matters only because prognosis is pretty good for HPV-associated throat cancer. small blessings. ;-)

    also, I do not want my son (or anybody for that matter) to have to go through what I've gone through. not to mention, my son's dear 21-year-old GF! she is the reason for his vaccination.
    knowing what we already know, many HPV-associated cancers should be largely preventable.

    I'm single (divorced), which makes tracking more complicated. even worse, my younger days were spent overseas, and tracking down former significant others is nigh impossible.
    have you discussed getting tested for HPV with a doctor? (edit: never mind, I see your response below about HPV-16 detection with routine PAP smears. thank god for that.)

    I have so many questions to go over with doc...
    I was wondering if anyone knew of any other test for HPV 16+ detection was available other than the standard finding it through a woman's routine PAP. Seems to me if your partner has the HPV16 + virus which led to the cancer, then the current partner is obviously exposed to that virus.
  • cureitall66
    cureitall66 Member Posts: 913
    RushFan said:

    Very similar here...
    Sounds very familiar. Your friend should do very well...the waiting is the worst.
    I too was diagnosed with an unknown primary in January 2010. BTW; I'm a white male, 49 yrs old at time of diagnosis. Do not smoke or drink at all.

    I had a swollen lymph node that was a concern after not responding to two rounds of antibiotics.
    My ENT then ordered fine needle biopsies etc. The pathologist knew it was cancerous, but was not able to determine type, so my ENT surgically removed the lymph node and sent off slides to Mayo Clinic. Mayo identified it as SCC. I was then refered to M.D. Anderson Cancer Center in Houston. (fortunately, I live 30 miles north of Houston).

    After Right & Left tonsil biopsies and base of tongue biopsies under anesthesia-no primary was found, M.D. Anderson staged me HPV+ T0 N2b M0.

    I was given the option of adding chemo to the standard protocol radiation treatments as the lymph node had extracapsular growth. I opted for chemo...to throw "the kitchen sink" at the cancer and destroy it!

    Since there was an unknown primary, I was radiated across the pharyngeal axis.
    Treatments were: Radiation Mon-Fri for seven weeks (35 treatments) and Cisplatin-seven infusions... every Monday for seven weeks.

    I did not have a feeding tube, but it was tough toward the end. I started at 210 lbs, finished at 175 lbs. Pain is rough...stay ahead of it with meds. Keep up as best you can with calorie consumption. I survived on Ensure and Boost for several weeks...it can be done!

    I Completed treatments 4/30/2010, I was back at work part-time in June, full time in July.

    My doctors gave me a great deal of possitive feedback and a very good prognosis.
    I was very positive through this tough experience, my wife was unbelievable...so were neighbors, friends, co-workers and church members.

    I have come through this extremely well and feel very lucky / blessed to have done so.

    Today...I'm at 200 lbs. Working out a few times a week. Energy is super. Salivary function is at about 70% of "normal".

    All the best to your friend!

    Thanks for sharing your story...
    Thanks for sharing your story. It means a lot to hear such positive information come out of this ugly thing called cancer.
  • cureitall66
    cureitall66 Member Posts: 913
    josh r. said:

    Great in-put
    I hope you feel better after having all the wonderful in-put from this wonderful site. I was also treated for scc, stage iv, in July-November of 1991. Just imagine what the medical world knows nearly 21 years later! I pray for and wish you and your friend the best of all possible results. Josh r.

    It helps...
    Everyone's stories here are such a great inspiration to those of us just finding out our loved ones are just being diagnosed. The waiting is incredibly emotional. Knowing there are successful endings is so gratifying. God Bless you for sharing and your recovery..
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    HPV testing...
    How is the HPV tested among the rest of us that do not have the cancer as you state your wife has been checked every year? My understanding is that the lower HPV's are usually hard to detect unless you get genital warts, the the higher HPV's (16 +) are found in our routine Pap's as they are the HPV Cancer virus's....but maybe I'm wrong.

    Annual Exams
    That's what I was referring as for my wife being tested....

    Other than tissue from a biopsy of a suspect area, which would be more a biopsy for cancer, not HPV, I only have heard of one test which is supposed to detect HPV..., but I haven't researched that claim.

    It's some oral swab performed at the dentist.

    JG
  • blackswampboy
    blackswampboy Member Posts: 341

    HPV testing...
    How is the HPV tested among the rest of us that do not have the cancer as you state your wife has been checked every year? My understanding is that the lower HPV's are usually hard to detect unless you get genital warts, the the higher HPV's (16 +) are found in our routine Pap's as they are the HPV Cancer virus's....but maybe I'm wrong.

    biopsy
    my understanding is that without a biopsy, there is still no 'easy' HPV test for men.
    but for men or women, you can run an HPV DNA test from biopsy tissue. I'm certain that I had testing following biopsy for HPV-16.

    so when the mayo clinic site says:

    "The HPV test is available only to women; no HPV test yet exists to detect the virus in men."

    I believe that's misleading. it must mean there is no routine test for 'healthy' men that is as easy as a Pap test.
  • HPV testing...
    How is the HPV tested among the rest of us that do not have the cancer as you state your wife has been checked every year? My understanding is that the lower HPV's are usually hard to detect unless you get genital warts, the the higher HPV's (16 +) are found in our routine Pap's as they are the HPV Cancer virus's....but maybe I'm wrong.

    Im a stage 4 Oral cancer patient going on 6yrs cancer free
    Pardon my typing skills but wanted to say I was a stage 4 oral cancer patient diagnosis when I was 45 I am now going on 52. I had all my treatment done at the UofM in Michigan. It started at the rear base of my tongue and spread to right lymph node. Underwent 3 months of radiation,after surgery, and did Chemo through a pick line and chemo pump for 7 days every 4 week of radiation. I went from 220lbs to 148lbs by the end of treatment. I cant even describe the anxiety and the waiting for treatment which took almost 3 months to get ready for before it actually began. I had a 4yr son who will soon be 10 that I was determined no matter what I was going to be around to love and raise. It took me almost 3 years to feel like myself again and a rare form of arthritis in my spine made the radiation treatments almost unbearable for me every day being locked in a mask on a cold hard table, but I made it!! I refused to give up even when there were times I when I wanted too. My great family and friends were my support that help pull me through. I had to learn not to google my chances everyday or read to much into the dark side of this cancer. Instead I accepted my treatment and trusted my doctors and so far they have given almost 6 great years at one time I didnt think I had. Please feel free to ask me any questions I just joined the sight thinking perhaps I could help like so many helped me through my battle.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Im a stage 4 Oral cancer patient going on 6yrs cancer free
    Pardon my typing skills but wanted to say I was a stage 4 oral cancer patient diagnosis when I was 45 I am now going on 52. I had all my treatment done at the UofM in Michigan. It started at the rear base of my tongue and spread to right lymph node. Underwent 3 months of radiation,after surgery, and did Chemo through a pick line and chemo pump for 7 days every 4 week of radiation. I went from 220lbs to 148lbs by the end of treatment. I cant even describe the anxiety and the waiting for treatment which took almost 3 months to get ready for before it actually began. I had a 4yr son who will soon be 10 that I was determined no matter what I was going to be around to love and raise. It took me almost 3 years to feel like myself again and a rare form of arthritis in my spine made the radiation treatments almost unbearable for me every day being locked in a mask on a cold hard table, but I made it!! I refused to give up even when there were times I when I wanted too. My great family and friends were my support that help pull me through. I had to learn not to google my chances everyday or read to much into the dark side of this cancer. Instead I accepted my treatment and trusted my doctors and so far they have given almost 6 great years at one time I didnt think I had. Please feel free to ask me any questions I just joined the sight thinking perhaps I could help like so many helped me through my battle.

    Welcome Terry..
    You have pulled through like a lot of us here.....

    I was STGIII SCC Tonsils and HPV+, going on four years post Tx, so far all clean and clear.

    You should start your own thread and introduce yourself to the group so as to not get lost at the bottom of this post.

    Best,
    John
  • cureitall66
    cureitall66 Member Posts: 913

    Im a stage 4 Oral cancer patient going on 6yrs cancer free
    Pardon my typing skills but wanted to say I was a stage 4 oral cancer patient diagnosis when I was 45 I am now going on 52. I had all my treatment done at the UofM in Michigan. It started at the rear base of my tongue and spread to right lymph node. Underwent 3 months of radiation,after surgery, and did Chemo through a pick line and chemo pump for 7 days every 4 week of radiation. I went from 220lbs to 148lbs by the end of treatment. I cant even describe the anxiety and the waiting for treatment which took almost 3 months to get ready for before it actually began. I had a 4yr son who will soon be 10 that I was determined no matter what I was going to be around to love and raise. It took me almost 3 years to feel like myself again and a rare form of arthritis in my spine made the radiation treatments almost unbearable for me every day being locked in a mask on a cold hard table, but I made it!! I refused to give up even when there were times I when I wanted too. My great family and friends were my support that help pull me through. I had to learn not to google my chances everyday or read to much into the dark side of this cancer. Instead I accepted my treatment and trusted my doctors and so far they have given almost 6 great years at one time I didnt think I had. Please feel free to ask me any questions I just joined the sight thinking perhaps I could help like so many helped me through my battle.

    Your story is inspiring...
    This is the hardest thing I think for anyone to go through....not knowing much through the whole process is difficult. You have so many questions that it becomes overwhelming. Right now we are waiting to head to U of M (as soon as they call us). I'm assuming they will do a PET scan also to be sure it hasn't traveled. Right now we found it in the neck (secondary site) and the base of the tongue (assuming primary site). I don't know if this cancer is known to travel quickly into other areas of the body. I pray it hasn't. We also do not know what stage he is at at this time. I'm sure once everything is reviewed and further tests, we're going to know soon. The ENT seemed to think it was caught early compared to what he's seen before....but we still don't know.

    You mention right lymph node..as I'm trying to get familiar with all the terms and what not...is that in the right neck or near the base of tongue?

    Thank you for sharing your story. I'm so glad you've come here to give some of us some encouragement we so badly need.

    Bless you.
  • cureitall66
    cureitall66 Member Posts: 913
    Skiffin16 said:

    Annual Exams
    That's what I was referring as for my wife being tested....

    Other than tissue from a biopsy of a suspect area, which would be more a biopsy for cancer, not HPV, I only have heard of one test which is supposed to detect HPV..., but I haven't researched that claim.

    It's some oral swab performed at the dentist.

    JG

    Dentists...
    I did read that some dentists have some type of "blue light" that they can use to detect oral warts, etc....but not sure if that was for detecting the HPV in itself.
  • Your story is inspiring...
    This is the hardest thing I think for anyone to go through....not knowing much through the whole process is difficult. You have so many questions that it becomes overwhelming. Right now we are waiting to head to U of M (as soon as they call us). I'm assuming they will do a PET scan also to be sure it hasn't traveled. Right now we found it in the neck (secondary site) and the base of the tongue (assuming primary site). I don't know if this cancer is known to travel quickly into other areas of the body. I pray it hasn't. We also do not know what stage he is at at this time. I'm sure once everything is reviewed and further tests, we're going to know soon. The ENT seemed to think it was caught early compared to what he's seen before....but we still don't know.

    You mention right lymph node..as I'm trying to get familiar with all the terms and what not...is that in the right neck or near the base of tongue?

    Thank you for sharing your story. I'm so glad you've come here to give some of us some encouragement we so badly need.

    Bless you.

    Yes right lymph node in neck
    Hi cureitall, yes it was the lymph node in my neck, like many this is how i noticed even having cancer while shaving one day. When you speak of the U of M are you speaking of the University of Michigan? Dr. Prince was my ENT specialist there and still is they were great! It took almost 4 months for my actual treatment to begin. They have to make a mask for radiation therapy, a lot of preventive Dentistry was needed also, as well as a team planned method of treatment, a full body PET scan is done too, I also had to have a pick line installed for Chemo pump it does take time and can be stressful but the wait is worth a well thought out and planned treatment.
  • cureitall66
    cureitall66 Member Posts: 913

    Yes right lymph node in neck
    Hi cureitall, yes it was the lymph node in my neck, like many this is how i noticed even having cancer while shaving one day. When you speak of the U of M are you speaking of the University of Michigan? Dr. Prince was my ENT specialist there and still is they were great! It took almost 4 months for my actual treatment to begin. They have to make a mask for radiation therapy, a lot of preventive Dentistry was needed also, as well as a team planned method of treatment, a full body PET scan is done too, I also had to have a pick line installed for Chemo pump it does take time and can be stressful but the wait is worth a well thought out and planned treatment.

    Yes, University of Michigan...
    Not sure of the Oncologist's name yet. Hoping to hear this week when he's going down. Do you know what they will do at his initial appointment? We're hoping a Pet Scan will be one of them. Need a stage. Did you have surgery at all? If so, what did they do? Or just radiation and Chemo? Feeding tube? (not sure, if you mentioned in your earlier post).

    You should definitely open a post with your story to tell people. So many people here are looking for some hope and possible answers.

    I may send you a private message at some point if that's ok?

    Cureitall
  • boardwalkgirl
    boardwalkgirl Member Posts: 269

    Yes, University of Michigan...
    Not sure of the Oncologist's name yet. Hoping to hear this week when he's going down. Do you know what they will do at his initial appointment? We're hoping a Pet Scan will be one of them. Need a stage. Did you have surgery at all? If so, what did they do? Or just radiation and Chemo? Feeding tube? (not sure, if you mentioned in your earlier post).

    You should definitely open a post with your story to tell people. So many people here are looking for some hope and possible answers.

    I may send you a private message at some point if that's ok?

    Cureitall

    According to my Radiation
    According to my Radiation Oncologist, when I asked what stage my cancer was, he said that staging of this kind of cancer is kind of misleading and even though my was staged at IV because it was found in a lymph node, that is not as bad as some other cancers at stage IV.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Yes right lymph node in neck
    Hi cureitall, yes it was the lymph node in my neck, like many this is how i noticed even having cancer while shaving one day. When you speak of the U of M are you speaking of the University of Michigan? Dr. Prince was my ENT specialist there and still is they were great! It took almost 4 months for my actual treatment to begin. They have to make a mask for radiation therapy, a lot of preventive Dentistry was needed also, as well as a team planned method of treatment, a full body PET scan is done too, I also had to have a pick line installed for Chemo pump it does take time and can be stressful but the wait is worth a well thought out and planned treatment.

    SuperThread
    Terry, since you mentioned some of what you went through...which is similar to what many of us have. Though the PICC is not uses as much these days I beleive for chemo delivery as the Power Port.

    Many of us here compiled a SuperThread that offers a lor of the descriptions and processes that we have all gone through.

    It offers tons of links and suggestions, experiences etc....


    SuperThread

    Staging is also mentioned on there...

    Like you, I also had a lymphnode as a secondary, tonsils were the primary.

    H&N I beleive classifys STGIII as a primary and a secondary on the same side, or the size of the primary.... STGIV for mets to the opposite side of the primary.

    STGIV is STGIV, though H&N Cancer does seem to have a pretty good survival rate depending on many variables.

    Anyways, again...welcome to the board, you have found an awesome site with tons of experieince and survivors much like yourself...several years out from treatment.

    Best,
    John
  • Skiffin16 said:

    SuperThread
    Terry, since you mentioned some of what you went through...which is similar to what many of us have. Though the PICC is not uses as much these days I beleive for chemo delivery as the Power Port.

    Many of us here compiled a SuperThread that offers a lor of the descriptions and processes that we have all gone through.

    It offers tons of links and suggestions, experiences etc....


    SuperThread

    Staging is also mentioned on there...

    Like you, I also had a lymphnode as a secondary, tonsils were the primary.

    H&N I beleive classifys STGIII as a primary and a secondary on the same side, or the size of the primary.... STGIV for mets to the opposite side of the primary.

    STGIV is STGIV, though H&N Cancer does seem to have a pretty good survival rate depending on many variables.

    Anyways, again...welcome to the board, you have found an awesome site with tons of experieince and survivors much like yourself...several years out from treatment.

    Best,
    John

    Please feel free to contact me
    Thank you everyone for your warm greeting! U of M has a super staff and were great!!! They do have some UofM cancer treatment centers that are central in the state of Mich. I had all 3 surgery,Radiation, and chemo. The main surgery was done at the main Hospital in Ann Arbor, and my chemo and radiation were done in Mt. Pleasant under a U of M treatment center. Ill try to figure posting my story on the super Thread. Please feel free to e-mail me at [email protected] if I can be of any help about treatment and the steps in which I went through. Or private message Im new so Ill try to figure that out either way Im retired and Im around online most of the time.
  • cureitall66
    cureitall66 Member Posts: 913

    According to my Radiation
    According to my Radiation Oncologist, when I asked what stage my cancer was, he said that staging of this kind of cancer is kind of misleading and even though my was staged at IV because it was found in a lymph node, that is not as bad as some other cancers at stage IV.

    I've heard that too..
    boardwalkgirl,

    I've read that as well. That is encouraging to know.
  • cureitall66
    cureitall66 Member Posts: 913
    CivilMatt said:

    get ready
    Hi cureitall66,

    For me, Stage IVa SCC, HPV+, lower tongue and one lymph node left side of neck (click on CIVILMATT for details).

    I felt a lump will shaving, went immediately to the doctor, got past around like a hot potato and was offered surgery, radiation and chemo. I chose all three and I am glad I did. When I saw the ENT, he discovered a spot on my tongue and my neck was obvious. After a fine needle biopsy and lateral neck dissection of the Jugular Vein, the cat was out of the bag. The doctor kept a pretty tight secrete until he was positive (there was a chance it was a cyst). Now at 22 weeks post I am doing well. I sleep very good, I am on no pain medication, I have little saliva, I tire easily and have a (temporary) lack of taste buds. Matter-of-fact, I took out a can of Crisco Shortening today, held it up in front of my parents and brother and told them “this is what many foods taste like to me”. Joe blow and his friends just don’t understand “no taste buds”, but my friends here do.

    Anyway, I ramble on, but thanks to treatments I can still ramble on.

    Best,

    Matt

    Couple questions....
    Civilmatt,

    Wondering when you were diagnosed? I see you are not going through treatment and 22 weeks post, so you were diagnosed approx 22 weeks ago then? Are you considered cancer free at this point?
  • cureitall66
    cureitall66 Member Posts: 913
    RushFan said:

    Very similar here...
    Sounds very familiar. Your friend should do very well...the waiting is the worst.
    I too was diagnosed with an unknown primary in January 2010. BTW; I'm a white male, 49 yrs old at time of diagnosis. Do not smoke or drink at all.

    I had a swollen lymph node that was a concern after not responding to two rounds of antibiotics.
    My ENT then ordered fine needle biopsies etc. The pathologist knew it was cancerous, but was not able to determine type, so my ENT surgically removed the lymph node and sent off slides to Mayo Clinic. Mayo identified it as SCC. I was then refered to M.D. Anderson Cancer Center in Houston. (fortunately, I live 30 miles north of Houston).

    After Right & Left tonsil biopsies and base of tongue biopsies under anesthesia-no primary was found, M.D. Anderson staged me HPV+ T0 N2b M0.

    I was given the option of adding chemo to the standard protocol radiation treatments as the lymph node had extracapsular growth. I opted for chemo...to throw "the kitchen sink" at the cancer and destroy it!

    Since there was an unknown primary, I was radiated across the pharyngeal axis.
    Treatments were: Radiation Mon-Fri for seven weeks (35 treatments) and Cisplatin-seven infusions... every Monday for seven weeks.

    I did not have a feeding tube, but it was tough toward the end. I started at 210 lbs, finished at 175 lbs. Pain is rough...stay ahead of it with meds. Keep up as best you can with calorie consumption. I survived on Ensure and Boost for several weeks...it can be done!

    I Completed treatments 4/30/2010, I was back at work part-time in June, full time in July.

    My doctors gave me a great deal of possitive feedback and a very good prognosis.
    I was very positive through this tough experience, my wife was unbelievable...so were neighbors, friends, co-workers and church members.

    I have come through this extremely well and feel very lucky / blessed to have done so.

    Today...I'm at 200 lbs. Working out a few times a week. Energy is super. Salivary function is at about 70% of "normal".

    All the best to your friend!

    Stage...
    RushFan,

    Were you given a stage (ie. I, II, etc.) other than HPV+TO N2b MO ?
  • Tim6003
    Tim6003 Member Posts: 1,514 Member

    Please feel free to contact me
    Thank you everyone for your warm greeting! U of M has a super staff and were great!!! They do have some UofM cancer treatment centers that are central in the state of Mich. I had all 3 surgery,Radiation, and chemo. The main surgery was done at the main Hospital in Ann Arbor, and my chemo and radiation were done in Mt. Pleasant under a U of M treatment center. Ill try to figure posting my story on the super Thread. Please feel free to e-mail me at [email protected] if I can be of any help about treatment and the steps in which I went through. Or private message Im new so Ill try to figure that out either way Im retired and Im around online most of the time.

    Hi cureitall...
    Thought I would share my experience so far.

    I was diagnosed base of tongue cancer, my tumor was found to be 1.5cm wide at the BOT-base of tongue, that's about the size of a penny and another half a penny the doctor said, and I had one lymph node (left side of my neck) that had cancer in it too. They call that metastasis which Wikpedia describes as "the spread of a disease from one organ or part to another non-adjacent organ or part"

    Becuase the spread of the cancer was from the base of tongue (BOT) to the lypmh node on the left side of my neck, it was considered "regional metastasis". Which combined with the size of my primary tumor (the one at the BOT) put me at Stage III. I was also tested for and was determined to be HPV+ (HPV16 to be more precise). From my understanding had they found cancer in a "distant location" such as my lungs, or liver or what have you, it would have been considered "distant metastasis".

    I was not offered surgery. My treatment (tx) plan was to be radiation for 7 weeks (35 sessions) and a chemo drug called Erbitux. Again, from my understanding I was not offered the traditional chemo drugs known as "platinum chemo".


    So again, my only treatment (tx) was radiation and Erbitux.

    I had a heck of a reaction to the Erbitux (which they said was actually a good sign in that the drug was effectively doing what it should do). I also had severe and very painful burns to the neck (you can see a picture of my neck on my expressions tab).

    I finished my treatments on January 21, 2012 (I was diagnosed October, 20, 2011) and I started my treatments November 20, 2011.

    I was given a PET/CT scan BEFORE treatments (tx) began to determine if there was cancer anywhere else in my body which of course would determine the treatment.


    3 months after my last treatment I was given another PET/CT scan and was given an very good report (there were still a couple of hot spots so they call them, but it was determined this was from the post treatment radiation). The tumor in my tongue was no longer there and my lymph node had shrunk to the size of a pea (from being the size of just under 3cm)

    Every month I am seen by my ENT and my oncologist and the ENT does a scope and finger exam each time, my oncologist does a finger exam and a scope as well. Each visit I have been given an all clear with both doctors.

    At 6 months out I had a head and neck CT scan and was given a NED (No Evidence of Disease) which of course is what we all want to hear.

    About 1.5 months before I was diagnosed and before my left lymph node swelled up, I was begining to feel "bad". I kept telling my wife I felt like I was trying to come down with the flu or something like mono...I was very tired and just felt awful as each week pasased. Only when my lymph node swelled up in September did I then see a doctor (my primary care physician - PCP) who then ordered anti-biotics for 10 days, nothing happened so we tried another type of anti-biotic for another ten days, still nothing happened and that's when my PCP sent me for a CT scan of the head and neck where the mass at the base of my tongue - BOT was discovered.

    I had a feeding tube put in my stomach wall BEFORE my tx ever began, I lost 70lbs druing my treatment and was tube fed 100% from about 5 weeks into my radiation all the way mid-May. Again, my tx started November of 2011 and ended January 2012.

    At my worst I was on 6 - 7 Narco a day for pain as well as I wore two Fentynal patches...keep in mind I was a big guy when I started and that might be the reason for so much pain meds (I started treatments at 320lbs), yeah, I know, really big guy :)

    I am no doctor and I believe most of my points above to be correct with regards to metastisis and staging...

    I am now eating most foods (can't do spicy foods or much fruit, it still burns) and my throat is half the size it used to be. I have to chew very well before I swallow and I do have pretty bad dry mouth (no saliva)..I chase almost all of my food with milk when I swallow. I have 85-90% of my taste back I believe and I am practically on no meds of any kind (I do have a stash of Utram pain meds I take now and then when my throat flares up with pain)...I've been told by my oncologist this may be the case (pain in throat) for a bit longer.

    I feel gooda and have lots of energy and don't have too many bad days (bad day being a day with pain and / or no energy).

    Sorry for the LONG post ...but I know what you are facing / going through as a caregiver and I wanted to get as much as I could in the post.

    Praying your loved one does well....eat, eat, eat and get all the nourishment you can before tx's begin!!

    Best,

    Tim
  • cureitall66
    cureitall66 Member Posts: 913
    Tim6003 said:

    Hi cureitall...
    Thought I would share my experience so far.

    I was diagnosed base of tongue cancer, my tumor was found to be 1.5cm wide at the BOT-base of tongue, that's about the size of a penny and another half a penny the doctor said, and I had one lymph node (left side of my neck) that had cancer in it too. They call that metastasis which Wikpedia describes as "the spread of a disease from one organ or part to another non-adjacent organ or part"

    Becuase the spread of the cancer was from the base of tongue (BOT) to the lypmh node on the left side of my neck, it was considered "regional metastasis". Which combined with the size of my primary tumor (the one at the BOT) put me at Stage III. I was also tested for and was determined to be HPV+ (HPV16 to be more precise). From my understanding had they found cancer in a "distant location" such as my lungs, or liver or what have you, it would have been considered "distant metastasis".

    I was not offered surgery. My treatment (tx) plan was to be radiation for 7 weeks (35 sessions) and a chemo drug called Erbitux. Again, from my understanding I was not offered the traditional chemo drugs known as "platinum chemo".


    So again, my only treatment (tx) was radiation and Erbitux.

    I had a heck of a reaction to the Erbitux (which they said was actually a good sign in that the drug was effectively doing what it should do). I also had severe and very painful burns to the neck (you can see a picture of my neck on my expressions tab).

    I finished my treatments on January 21, 2012 (I was diagnosed October, 20, 2011) and I started my treatments November 20, 2011.

    I was given a PET/CT scan BEFORE treatments (tx) began to determine if there was cancer anywhere else in my body which of course would determine the treatment.


    3 months after my last treatment I was given another PET/CT scan and was given an very good report (there were still a couple of hot spots so they call them, but it was determined this was from the post treatment radiation). The tumor in my tongue was no longer there and my lymph node had shrunk to the size of a pea (from being the size of just under 3cm)

    Every month I am seen by my ENT and my oncologist and the ENT does a scope and finger exam each time, my oncologist does a finger exam and a scope as well. Each visit I have been given an all clear with both doctors.

    At 6 months out I had a head and neck CT scan and was given a NED (No Evidence of Disease) which of course is what we all want to hear.

    About 1.5 months before I was diagnosed and before my left lymph node swelled up, I was begining to feel "bad". I kept telling my wife I felt like I was trying to come down with the flu or something like mono...I was very tired and just felt awful as each week pasased. Only when my lymph node swelled up in September did I then see a doctor (my primary care physician - PCP) who then ordered anti-biotics for 10 days, nothing happened so we tried another type of anti-biotic for another ten days, still nothing happened and that's when my PCP sent me for a CT scan of the head and neck where the mass at the base of my tongue - BOT was discovered.

    I had a feeding tube put in my stomach wall BEFORE my tx ever began, I lost 70lbs druing my treatment and was tube fed 100% from about 5 weeks into my radiation all the way mid-May. Again, my tx started November of 2011 and ended January 2012.

    At my worst I was on 6 - 7 Narco a day for pain as well as I wore two Fentynal patches...keep in mind I was a big guy when I started and that might be the reason for so much pain meds (I started treatments at 320lbs), yeah, I know, really big guy :)

    I am no doctor and I believe most of my points above to be correct with regards to metastisis and staging...

    I am now eating most foods (can't do spicy foods or much fruit, it still burns) and my throat is half the size it used to be. I have to chew very well before I swallow and I do have pretty bad dry mouth (no saliva)..I chase almost all of my food with milk when I swallow. I have 85-90% of my taste back I believe and I am practically on no meds of any kind (I do have a stash of Utram pain meds I take now and then when my throat flares up with pain)...I've been told by my oncologist this may be the case (pain in throat) for a bit longer.

    I feel gooda and have lots of energy and don't have too many bad days (bad day being a day with pain and / or no energy).

    Sorry for the LONG post ...but I know what you are facing / going through as a caregiver and I wanted to get as much as I could in the post.

    Praying your loved one does well....eat, eat, eat and get all the nourishment you can before tx's begin!!

    Best,

    Tim

    Thank you so much for sharing this....
    Tim6003,

    Bless your heart for sharing this with me/us. What a journey this is. I've been trying to take notes for my loved one so that we can compare his to others...I think this will help him tremendously knowing he is not alone.

    I may send you some messages periodically if that is ok. I do have some questions on the HPV testing they did if you could provide me with some info...

    Thank you,

    Cureitall66