stats

kim50
kim50 Member Posts: 34
in Head and Neck Cancer #1
Hey Y'all,
I'm not tryin to be too nosy here but I would like a few info. from everyone. This is helpful to me and my hubby as we're dealing with my recurrence from nasal cancer. it's in my orbital eye area now. I'm 50 years old... married 21 years and have an 18 year old daughter and a 16 year old son. My daughter just graduated from high school (yea!!) I work as a teacher's aide and my hubby is a mechanic who owns his own shop. I was 152 pounds, but stress has got me down to 128.


I want to know

1. where were you treated
2. who has had a recurrence
3. time that you've been NED since treatment.
4. type of cancer

I need this for inspiration late at night when I get very scared. Don't know many head and neck cacer victims....most I know are breast and colon. I'll probably be going to Emory for 2nd opinion. For some reason I feel scared that they may say something worse than what I've been told at my dr. here, that I have to get my eye and socket removed. i can deal with that, just don't want to here something worse than that.

Comments

  • Dav1965
    Dav1965 Member Posts: 132
    #2
    My story
    1 I was treated at UNC Chapell Hill it was hard since i was am a Duke fan. They gave me hell for it.
    2 I am having trouble now but its not cancer but radiation related. I have a cyst in the jaw by the ear and the socket that holds my jaw in place is deteriated from radiation.
    3 I have been ned free since Dec 2010
    4 I had squamas cell carcinoma it was called T3N2BM0 I had cancer in my tongue. Its pretty rare since i dont smoke or chew tobaco or drink. They cut off 95% of my tongue and replaced it with part of my thigh. They also did a double neck dissection with cancer on one side in my lymnodes. I have had a few surgeries shaping my tongue so i can try and eat. Now i live off of milk and cereal. I have one more surgery in August and probally one for my jaw as soon as i find someone that can do it. Good luck with your future and God bless.
  • palmyrafan
    palmyrafan Member Posts: 396
    #3
    Stats
    Hi Kim,

    I have multiple meningiomas located: left optic nerve, optic nerve chiasm, cavernous and sphenoid sinuses, carotid artery, skull base, left and right eustacian tubes, left jaw bone and left facial bones (fused into those bones), and of course the lining of the brain.

    I was treated the first time (1994-1997) at:
    The Cleveland Clinic, Cleveland, OH by Dr. Joung Lee, Neuro
    Dr. Pierre LaVertu, ENT (now at Case-Western)
    Dr. Robert Suh, RadOnc

    I have had a recurrence, in my sinsues, skull base, left optic nerve and carotid artery. I am currently being treated at Thomas Jefferson University Hospital in Philadelphia by Dr. James Evans. Interestly enough, Dr. Evans was trained by Dr. Joung Lee so it helps that they communicate about my case.

    I was told that my brain tumors would come back. I was told that radiation therapy in 1996 was to help buy me time for new technologies to become available.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #4
    Mine!
    1. where were you treated

    Head and Neck Surgery Assoc. now CENTA in Indianapolis IN

    2. who has had a recurrence

    The doctors did not want to call it recurrence after 13 years, same type SCC

    3. time that you've been NED since treatment.

    Been survivor for 15 plus years now, 2 plus years since second butt kicking

    4. type of cancer

    Squamous Cell Carcinoma - unknown primary 15 years ago , SCC at back of tongue

    Prayers for wisdom with your 2nd opinion and peace of mind!

    John

    Don't get too hung up on stats, everyone is different and there are tons of variables.
  • luv2cut1
    luv2cut1 Member Posts: 288
    #5
    Stats
    Pats stats are as follows :

    Diagnosed in May 2008 with T2N0M0 SCC of supraglottis. Treated with chemo radiation at Rocky Mountain Cancer Center in Denver. Colorado. Treatment ended in August 2008. Diagnosed with metastatic SCC in the neck in May 2009. Radical neck dissection in June 2009, 4 nodes positive, extracapsular spread and positive margins - stage 4. VERY SCARY STATS given to us. After three opinions, decided on treatment at University of Colorado Cancer Center. While the outcome was far from certain and the stats still scary, CU actually made us feel much more optimistic. Pat is now 20 months out and doing well. I know your situation is different, but even if you do hear something worse it will still give you more information on which to base your decision. Also, if you do hear something worse, you may decide that is not where you want to be treated. All of the horrible stats we heard just made us more confident in the treatment we chose.

    Good luck.

    Myka
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #6
    Not Nosy
    Hi Kim

    I was treated at the Wassanosoth Cancer Center in Bangkok, Thailand.

    No recurrence after 10 months, though I still light up the PET scans. All other tests are clear. The general consensus is lingering inflammation showing up on the PET's.

    SCC Base of tongue, stage 4.

    Second opinions are always a good option, I've had 2nd and 3rd opinions during my treatment. Cheers

    Jimbo
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #7
    Jimbo55 said:

    Not Nosy
    Hi Kim

    I was treated at the Wassanosoth Cancer Center in Bangkok, Thailand.

    No recurrence after 10 months, though I still light up the PET scans. All other tests are clear. The general consensus is lingering inflammation showing up on the PET's.

    SCC Base of tongue, stage 4.

    Second opinions are always a good option, I've had 2nd and 3rd opinions during my treatment. Cheers

    Jimbo

    1. where were you
    1. where were you treated
    Geisinger, Danville PA

    2. who has had a recurrence
    None. Thank God, and knock wood.

    3. time that you've been NED since treatment.
    25months

    4. type of cancer
    Metistatic SCC HNC Stage Four Unknown Primary
  • kim50
    kim50 Member Posts: 34
    #8
    sweetblood22 said:

    1. where were you
    1. where were you treated
    Geisinger, Danville PA

    2. who has had a recurrence
    None. Thank God, and knock wood.

    3. time that you've been NED since treatment.
    25months

    4. type of cancer
    Metistatic SCC HNC Stage Four Unknown Primary

    Great info everyone!
    I know
    Great info everyone!
    I know it sounds crazy, but this just seems to help and comfort me, and right now I feel I have to do whatever gives me peace. I pray everyday aand trust in God to help me through this. Sometimes I feel my husband and my daughter are more worried than me. my 16 year old son seems to be coping better than anyone.

    Luckily I am not in any pain except sometimes my arthritic knee bothers me. Other than that I feel fine physically. The radiation I received last year has made me have a lot of phlegm and I have to spit(pardon the grossness), other than that no major side effects.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    Hi Kim

    1. I was treated in Lafayette LA by my local doctors, Big mistake on my part
    2. My C came back 3 times
    3. I been out of treatment for the passed 6 years but not NED
    4. NPC

    I went through this a lot of times and I am still here, I believe mostly because of prayers from my family and friends and keeping positive by focusing on God in my life.

    Hope this helps
    Hondo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    Dav1965 said:

    My story
    1 I was treated at UNC Chapell Hill it was hard since i was am a Duke fan. They gave me hell for it.
    2 I am having trouble now but its not cancer but radiation related. I have a cyst in the jaw by the ear and the socket that holds my jaw in place is deteriated from radiation.
    3 I have been ned free since Dec 2010
    4 I had squamas cell carcinoma it was called T3N2BM0 I had cancer in my tongue. Its pretty rare since i dont smoke or chew tobaco or drink. They cut off 95% of my tongue and replaced it with part of my thigh. They also did a double neck dissection with cancer on one side in my lymnodes. I have had a few surgeries shaping my tongue so i can try and eat. Now i live off of milk and cereal. I have one more surgery in August and probally one for my jaw as soon as i find someone that can do it. Good luck with your future and God bless.

    Rare
    Concerning you statement;

    I had squamas cell carcinoma it was called T3N2BM0 I had cancer in my tongue. Its pretty rare since i dont smoke or chew tobaco or drink.

    It's probably not a rare as you think....primarily due to the rise in HPV.

    I am also a non-tobacco user...never have and at 55 thanks to HPV I had throat cancer..tonsils as mentioned above.

    With the information and my back-ground, the first thing from my ENT, he was suspect of HPV. A week or so after the tonsils came out and confirmed SCC STGIII, the lab results came back and indeed it was HPV+.

    So, not sure if your tissue samples were or weren't tested for HPV, it is on the rise and actually projected to over take tobacco related H&N Cancers within the next few years.

    Best,
    John
  • arndog64
    arndog64 Member Posts: 537
    #11
    Hondo said:

    Hi Kim

    1. I was treated in Lafayette LA by my local doctors, Big mistake on my part
    2. My C came back 3 times
    3. I been out of treatment for the passed 6 years but not NED
    4. NPC

    I went through this a lot of times and I am still here, I believe mostly because of prayers from my family and friends and keeping positive by focusing on God in my life.

    Hope this helps
    Hondo

    1. My husband is being

    1. My husband is being treated at Memorial Hermann Cancer Center in Houston, Texas.

    2. Just finished treatment on 5.24.2011.

    3. Still waiting for our first Pet Scan.

    I find hearing everyones history, very interesting.
  • arndog64
    arndog64 Member Posts: 537
    #12
    sweetblood22 said:

    1. where were you
    1. where were you treated
    Geisinger, Danville PA

    2. who has had a recurrence
    None. Thank God, and knock wood.

    3. time that you've been NED since treatment.
    25months

    4. type of cancer
    Metistatic SCC HNC Stage Four Unknown Primary

    Sweet - Loving your new
    Sweet - Loving your new profile picture.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    My Stats
    Blonde Hair
    Blue Eyes
    6'....

    Oh....,LOL, these stats;

    1. where were you treated

    Center for Cancer Care & Research - Lakeland, Florida


    2. who has had a recurrence

    No Recurrence ~ Hoping it stays that way...

    3. time that you've been NED since treatment.

    Two Years

    4. type of cancer

    Tonsil Cancer STGIII SCC HPV+

    Don't get too hung up on stats, everyone is different and there are tons of variables.

    Best,
    John
  • tesa
    tesa Member Posts: 123
    #14
    arndog64 said:

    1. My husband is being

    1. My husband is being treated at Memorial Hermann Cancer Center in Houston, Texas.

    2. Just finished treatment on 5.24.2011.

    3. Still waiting for our first Pet Scan.

    I find hearing everyones history, very interesting.

    My mother was treated at
    My mother was treated at MUSC in Charleston, SC for paranasal.

    She finished treatments at the end of August 2010.

    Recurrence in Feb. Her type of cancer has a high recurrence rate the 1st 2 years. We are going to MD Anderson to try to avoid this beast coming back again.

    Like I told you before, your recurrrence is in the same place as my mother's so you're not alone.

    Hang in there and keep praying.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #15
    arndog64 said:

    Sweet - Loving your new
    Sweet - Loving your new profile picture.

    arndog
    thank you, ma'm. :)
  • Fire34
    Fire34 Member Posts: 365
    #16
    Stats
    Kim
    1) University of Chicago, Participated in a clinical trial with Erbitux
    2) No reccurence
    3) 16 months Ned
    4) Stage IVa SCC of the right lymph nodes HPV+, unknown primary
    Wsihes & Prayers
    Dave
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #17
    Fire34 said:

    Stats
    Kim
    1) University of Chicago, Participated in a clinical trial with Erbitux
    2) No reccurence
    3) 16 months Ned
    4) Stage IVa SCC of the right lymph nodes HPV+, unknown primary
    Wsihes & Prayers
    Dave

    Stats
    1. where were you treated-Quad City Regional C Center, Bettendorf, Iowa
    2. who has had a recurrence- none yet
    3. time that you've been NED since treatment- 26+-months
    4. type of cancer- Nasopharyngeal, stage-3 w/unknown Primary

    kcass
  • buzz99
    buzz99 Member Posts: 404
    #18
    Stats
    Buzz was treated 9 years ago at Presbyterian Cancer Treatment center in Albuquerque. He had right tonsil cancer and had a right radical neck dissection in which 2 nodes were positive for Squamous Cell Carcinoma He also had radiation therapy. Last summer he was diagnosed with a new primary Squamous Cell Carcinoma of the base of tongue. He again was treated with Chemotherapy at Presbyterian Cancer Treatment Center and Radiation at the MD Anserson Cancer center here in Albuquerque. He now has a new spot on his tongue which developed between the first and second PET scans and a metabolically active area in the right neck which has grown in size and brightness between scans. Don't know if this is a recurrence or cancer persisting despite treatment. No NED for us. Karen
  • kim50
    kim50 Member Posts: 34
    #19
    buzz99 said:

    Stats
    Buzz was treated 9 years ago at Presbyterian Cancer Treatment center in Albuquerque. He had right tonsil cancer and had a right radical neck dissection in which 2 nodes were positive for Squamous Cell Carcinoma He also had radiation therapy. Last summer he was diagnosed with a new primary Squamous Cell Carcinoma of the base of tongue. He again was treated with Chemotherapy at Presbyterian Cancer Treatment Center and Radiation at the MD Anserson Cancer center here in Albuquerque. He now has a new spot on his tongue which developed between the first and second PET scans and a metabolically active area in the right neck which has grown in size and brightness between scans. Don't know if this is a recurrence or cancer persisting despite treatment. No NED for us. Karen

    This information is
    This information is wonderful. So many different stories, treatments, and places of treatments.

    Karen, I'm really sorry. I'm going through the same thing sweetie with recurrence and this cancer thing really SUCKS!!

    We'll just have to keep praying and encouraging each other on here. A year and a half ago I had no idea I would be in this situation.

    I don't know about y'all, but I'm really wondering why it's taking so long to find a cure for this. I'm 50 years old, and this cancer crap was around when I was a little girl. These scientist need to step it up and give cancer the "beat down" as my son would say.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #20
    kim50 said:

    This information is
    This information is wonderful. So many different stories, treatments, and places of treatments.

    Karen, I'm really sorry. I'm going through the same thing sweetie with recurrence and this cancer thing really SUCKS!!

    We'll just have to keep praying and encouraging each other on here. A year and a half ago I had no idea I would be in this situation.

    I don't know about y'all, but I'm really wondering why it's taking so long to find a cure for this. I'm 50 years old, and this cancer crap was around when I was a little girl. These scientist need to step it up and give cancer the "beat down" as my son would say.

    Technology
    Yes it does still suck that they haven't found a cure yet....

    But at least survival rates are much better these days and the technology for early detection and detection in other areas which may have been missed in years passed are huge.

    I at least feel,if I had to have cancer, this is the best time ever as for treatment and cure rates.

    Best,
    John
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #21
    STATS
    Hi Kim, I can relate to what you are asking for, and this is always an interesting read.

    I am 46, married with two kids in college.I was diagnosed last July with Tonsil CA Stage 4-2-B with Mets to 19 Lymph Nodes. I was treated at Siteman Cancer Center, Barnes Jewish Hospital, Washington University School of Medicine. This facility is the only NCI rated center in the state of Missouri. I will be 8 months post treatment next week and just had a CT of my Chest and Neck come back clean. I have not had a re occurrance.

    You can do this, it will will be hard, but very doable.

    We are here for you.

    Best!!

    Mike

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