Newly Diagnosed but Stage 4 - Scared to do Anything!

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  • CMOD54
    CMOD54 Member Posts: 2
    #22
    7 weeks out from rad and chemo stage 4
    I felt the same way did not smoke or drink very much but ended up with tongue cancer that spread to my lymph nodes on one side unfortunately you are automatically considered stage 4. Recovery has been tough but the prognosis is very good. I cannot comment on the quality of life without treatment, but I would say you would just be waiting around for the other shoe to drop. I had 8 weeks of radiation, and 2 rounds of Chemo. Finally starting to get my taste buds back actually woke up Monday and could taste my Starbucks Vanilla Bean. Just starting to eat food but tongue and throat are still really raw so its tough. But listening to people on this site and their stories make you believe you will get through it. Working may be tough I took off 2 months, the first month after treatment was really tough, but I am 7 weeks out and finally starting to feel semi-normal. Good luck, this is my first post so hello to everyone you are an inspiration!
  • Dav1965
    Dav1965 Member Posts: 132
    #23
    CMOD54 said:

    7 weeks out from rad and chemo stage 4
    I felt the same way did not smoke or drink very much but ended up with tongue cancer that spread to my lymph nodes on one side unfortunately you are automatically considered stage 4. Recovery has been tough but the prognosis is very good. I cannot comment on the quality of life without treatment, but I would say you would just be waiting around for the other shoe to drop. I had 8 weeks of radiation, and 2 rounds of Chemo. Finally starting to get my taste buds back actually woke up Monday and could taste my Starbucks Vanilla Bean. Just starting to eat food but tongue and throat are still really raw so its tough. But listening to people on this site and their stories make you believe you will get through it. Working may be tough I took off 2 months, the first month after treatment was really tough, but I am 7 weeks out and finally starting to feel semi-normal. Good luck, this is my first post so hello to everyone you are an inspiration!

    Stage 4 Also
    I had 3/4 of my tongue cut off and replaced along with double neck dissection. Plus i had radiation and chemo. I had so much radiation some of my jawbone was eaten away plus i have a cyst in my jaw bone now.

    I fought as hard as i ever had. I still hurt daily and i take 2 60mg of morphine a day and 6 oxycodones when i need them. But when i get to play with my Grand babies its all worth while. I am a 46 year old white male.
  • kerry501
    kerry501 Member Posts: 1
    #24
    stage lll survivor here
    hi!! i was 19 when i was diagnosed with stage lll larynx cancer, and here i sit 9 years later, and no sign of it coming back (knock on wood) so far. You can beat this, and while some days will seem never ending, others will fly by, I had radiation and chemo therapy, and a feeding tube. never give up the fight my friend!
  • akotke
    akotke Member Posts: 37
    #25
    Quality of life? YES!
    I was diagnosed with stage 4 tonsil cancer in November 2010. Treatment sucked, recovery sucked but now I'm doing really well. I'm eating anything I want, I am working full time, taking care of my family again and just recently started school. I totally understand how much fear is involved. I didn't want to have chemo, radical neck dissection, or radiation. However I am very blessed to have had cancer in a time that all of these things were available to keep me around for my kids. I might be a little worse for wear but I am enjoying life, food, and being with my family and friends.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #26
    akotke said:

    Quality of life? YES!
    I was diagnosed with stage 4 tonsil cancer in November 2010. Treatment sucked, recovery sucked but now I'm doing really well. I'm eating anything I want, I am working full time, taking care of my family again and just recently started school. I totally understand how much fear is involved. I didn't want to have chemo, radical neck dissection, or radiation. However I am very blessed to have had cancer in a time that all of these things were available to keep me around for my kids. I might be a little worse for wear but I am enjoying life, food, and being with my family and friends.

    I know this is an older post ...
    but I'm glad it came up again...it reminds me of where I was and am now and is a great inspiration to read.

    I pray all on this thread are doing well!!!!

    Tim
  • Pam M
    Pam M Member Posts: 2,196
    #27
    Jumping on the Bandwagon
    Yet ANOTHER stage four, spread to nodes survivor. I, too, was told that up-front surgery would not be an option for me - I was very disappointed, and worried. I was ANOTHER one who foolishly spent way too mucy time Googling my cancer - my odds - my folly. I tell many people on the fence about treatment - for most people, it's two months (including getting ready), then a couple three weeks feeling pretty bad, then it's recovering. Doesn't seem like much time when compared to the rest of your life. And that's assuming you're one of the ones who have a rough time of it. Not everyone sufferes terribly during treatment - most all of us are somewhere between horrific and uncomfortable. I think I only recall seeing one person who said they were going to stop treatment because it was so bad. Treatment for me wasn't fun - but it sure beat the bleep out of having cancer.
  • Whitedove2012
    Whitedove2012 Member Posts: 2
    #28
    boardwalkgirl said:

    My diagnosis was Stage IV
    My diagnosis was Stage IV HPV+ squamous cell carcinoma with unknown primary. Found in lymph node in right side of neck that they had said was a branchial cleft cyst. According to my dr. they graded it a stage IV due to the fact they know it didn't start there, he said it doesn't mean quite the same as when they stage some other cancers. Don't know if he was just trying to make me feel better or not, but he seems like he is always honest and upfront with me. He says they probably will never know where my primary was and my prognosis is good. So don't give up before you fight. I know it seems scary and there will be days you will wonder why you are fighting, but look around you and see the people you love and you will know why.

    36 yr old neice diagnosed with stage IV squamous carcinoma last
    My neice, also has soriasis and it causing the cancer to grow faster. the tumor board met today and called her and told her they recommend surgery first then treatment. she is facing vocal cord removal, a breathing tube and temporary feeding tube. she was totally against this at the first meeting with doctors, now the board of 5 are telling her they highly suggest it as the survival rate increases. the soriasis will limit the chemo from being as effective on cancer. I want to get radical and take her somewhere where she will survive this without having such evasive surgery at such a young age. i know the body can heal if you give it the right combination of nutrients. can you reach out to me with any suggestions.
  • Whitedove2012
    Whitedove2012 Member Posts: 2
    #29
    boardwalkgirl said:

    My diagnosis was Stage IV
    My diagnosis was Stage IV HPV+ squamous cell carcinoma with unknown primary. Found in lymph node in right side of neck that they had said was a branchial cleft cyst. According to my dr. they graded it a stage IV due to the fact they know it didn't start there, he said it doesn't mean quite the same as when they stage some other cancers. Don't know if he was just trying to make me feel better or not, but he seems like he is always honest and upfront with me. He says they probably will never know where my primary was and my prognosis is good. So don't give up before you fight. I know it seems scary and there will be days you will wonder why you are fighting, but look around you and see the people you love and you will know why.

    36 yr old neice diagnosed with stage IV squamous carcinoma last
    My neice, also has soriasis and it causing the cancer to grow faster. the tumor board met today and called her and told her they recommend surgery first then treatment. she is facing vocal cord removal, a breathing tube and temporary feeding tube. she was totally against this at the first meeting with doctors, now the board of 5 are telling her they highly suggest it as the survival rate increases. the soriasis will limit the chemo from being as effective on cancer. I want to get radical and take her somewhere where she will survive this without having such evasive surgery at such a young age. i know the body can heal if you give it the right combination of nutrients. can you reach out to me with any suggestions.
  • Billie67
    Billie67 Member Posts: 898
    #30
    Whitedove2012 said:

    36 yr old neice diagnosed with stage IV squamous carcinoma last
    My neice, also has soriasis and it causing the cancer to grow faster. the tumor board met today and called her and told her they recommend surgery first then treatment. she is facing vocal cord removal, a breathing tube and temporary feeding tube. she was totally against this at the first meeting with doctors, now the board of 5 are telling her they highly suggest it as the survival rate increases. the soriasis will limit the chemo from being as effective on cancer. I want to get radical and take her somewhere where she will survive this without having such evasive surgery at such a young age. i know the body can heal if you give it the right combination of nutrients. can you reach out to me with any suggestions.

    Start this in a new post
    And I think you will get a better response. Simply click on "start a new post" and copy and paste your original post.
    In the mean time, where does she live? Maybe someone on here can direct her to a place where they know.
    Can't wait to hear back from you?
    Billie

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