Newly Diagnosed but Stage 4 - Scared to do Anything!

Hi,

Maybe I've googled too many discussion boards, because I am so scared of doing Anything now. It seems like I'll be so much worse for "quality of life" compared to just going forward as is, with pain medication if/when symptoms worsen. Just want to enjoy my time left with 2 grown children, 2 grandsons, play my guitar, etc., and I need to be able to keep working too.

I am a healthy (ha! who knew?) 60 year old woman and this week I was newly diagnosed with Stage 4 Adenoid Cystic Carcinoma.

My oncologist met with a tumor board and decided against surgery, but recommends radiation therapy. Possibly chemo too.


Any Stage 4 Survivors out there that have enjoyed "quality of life" with or without treatment? I would love to hear from you. In the meantime, Positive thoughts headed your way to be cured of your cancer and to have a terrific day today!
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Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Quality of Life Post Tx
    Welcome....

    Yes, one of the first things most here will tell you...."Stay Off of the Internet", LOL....

    While I wasn't Dx with your specific cancer... I was Dx with STGIII NPV+ Tonsil Cancer.

    I'm a fighter and wish you to consider that path as well.

    My Tx was in early 2009, so far all is good...

    I went through sixteen weeks, four types of chemo and seven of those weeks were with radiation.

    While it was tough, it was all very doable, and survivor rates are good.

    As for quality of life.... I'm now 58.

    I'm actually to a point where my "New Normal", is my old normal.

    I have all taste back, nearly all saliva has returned as well, and I'm not on any meds other than Protonix for acid reflux.

    So to me life is good....actually very good.

    Best,
    John
  • phrannie51
    phrannie51 Member Posts: 4,716
    There are MANY Stage IV cancer survivors here
    living quality lives. Head and Neck cancer is one of those cancers that rarely gets caught early, so most here are Stage III or Stage IV.

    The very first thing I was told when I got here was to stay off Google, and I'm glad I followed that advice...it all bleak and ugly information...and OLD informtaion. Here in this forum you have scores of people starting treatment, going thru treatment, or done with treatment (some for years) to give you the real skinny on life during and after throat cancer treatment.

    I was Dx with Stage III Nasopharyngeal Carcinoma...No surgery, but I've had 35 radiations (tumor was gone before I was done with them)...and 4 chemo's so far, with two more to go. I fully plan on going back to work in September...I fully functional, except my eating habits have been slowed down (fully plan on them returning to close to normal at least).

    You're too young to just give up before you even get started (tho I truly understand the first reluctance to get involved in what seems like a lot of work and misery)...actually going thru treatment is NOT as bad as it may appear when standing on your end looking thru the tunnel...honest to gawd....and SO worth it. Please rethink your reluctance.

    p
  • DrMary
    DrMary Member Posts: 531 Member
    Skiffin16 said:

    Quality of Life Post Tx
    Welcome....

    Yes, one of the first things most here will tell you...."Stay Off of the Internet", LOL....

    While I wasn't Dx with your specific cancer... I was Dx with STGIII NPV+ Tonsil Cancer.

    I'm a fighter and wish you to consider that path as well.

    My Tx was in early 2009, so far all is good...

    I went through sixteen weeks, four types of chemo and seven of those weeks were with radiation.

    While it was tough, it was all very doable, and survivor rates are good.

    As for quality of life.... I'm now 58.

    I'm actually to a point where my "New Normal", is my old normal.

    I have all taste back, nearly all saliva has returned as well, and I'm not on any meds other than Protonix for acid reflux.

    So to me life is good....actually very good.

    Best,
    John

    Internet Addict
    I was on the internet right away when Doug was diagnosed - couldn't help myself. However, I did find several studies that showed radiation/chemo were as effective as surgery against H&NC (and I think they were all stage 3 and 4 cancers). So, don't be scared by the "no surgery decision" (in the old days, that meant bad things - these days, it often means it isn't necessary).

    My husband is the one who had the cancer, so I'll leave it to him to talk about quality of life. I can say that he had just about every bad side effect of the treatment, and didn't looks so great for a few months there, but today (more than a year out) no one can tell from looking at him. He just got back from a business trip to Brazil and then played hockey last night.

    Good luck and check in often - the list was a valuable source of information and support for us.
  • rush1958
    rush1958 Member Posts: 221 Member
    Stage IV Survivor Here
    Howdy,

    I'm a Stage IV - SCC-BOT Cancer survivor. I'm a little over two years out from the end of treatment. I won the trifecta - I had surgery, chemo and rads.

    Everyone is different, so there is no "one-size-fits-all." However, I can attest to a higher quality of life post treatment tnan prior to treatment. The weight loss that occured during treatment cured a variety of medical issues I had prior to diagnosis. Changes in life style since treatment have kept those issues at bay.

    As to the treatment - it is tough. The side effects - they're pretty tough too. Fortunately, I can say that the treatment was worth it and the side effects have mostly faded away into my memory.

    My ability to taste has returned to just about normal. I don't have any issues with swallowing. I don't have dry mouth and I can eat anything, but I can tell that my saliva production is a little less than it was prior to the treatment.

    I recently started a low dose thyroid hormone replacement to treat a sputtering thyroid gland. This was most likely the result of the radiation, but it just requires a once daily pill.

    All-in-all, life is pretty good.

    I know it all seems pretty overwhelming right now, but you've come to the right place. You are amongst a group of folks with a wealth of wisdom.

    Rush
  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    Take a deep breath and exhale....
    Cancernaut,

    We don't know allot about you and I didn't have your exact type of cancer, mine was Base of tongue with removal of over 1/3 of my tongue.

    YOU can't win the FIGHT if you don't step into the Ring.....

    Yes, I read the side affects typed on the internet, but you also have to remember that each of us reacts to treatments differently. What may be terrible for one, may not be so bad for the next person. I can honestly say, during my treatments of Radiation, I was in some discomfort, but was not in any real pain. There are Med's to help keep the pain at bay.

    YOU can DO this, as you will see all the good people here that will answer all your questions. You are 60, 60 is not old, 99 is old and I plan on going to 100 and smoke a cigar like George Burns and Bob Hope at that time, and I don't smoke : )

    I hope you give yourself a fighting chance. Each day is a Gift.

    My Best to You and Everyone Here
  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    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.
  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    one vote for treatment
    Hi Cancernaut,

    To treat or not to treat that is the question. Well, I think the odds for a longer, healthier and enjoyable life are with treatment.

    I am Stage IVa, SCC, HPV+, BOT w/one lymph node, I received surgery, radiation and chemo and actually feel pretty darn good. If I had chosen to not go the treatment route; I assume the cancer was guaranteed to eat me up a little at a time (to scary to think about). With treatments I am hoping to have many more years, good years.

    I am 55 years old and the decision to seek treatment was the only way to go, I have things to do (finish a chicken coop for one). Don’t you have a chicken coop to finish somewhere?

    Be strong, you are young and we will help you traverse the symptoms if you choose to fight.

    Best,

    Matt
  • blackswampboy
    blackswampboy Member Posts: 341
    correct me if I'm wrong, but
    correct me if I'm wrong, but haven't heard from many folks who have "quality of life" when their advanced cancer symptoms worsen.
    for me, the motivation to seek a diagnosis/cure was due to declining quality of life. loss of weight and energy meant that I was no longer able to skate/hike like I once could. trismus in my jaw meant that I couldn't open my mouth wide enough to bite a reuben sandwich. had I allowed the SCC to progress, I have no doubt my quality of life by now would have been even worse.
    as it is, I'm gaining weight again. the past three months haven't been fun, but they're in the past. I plan on living to see my grandchildren, and taking them ice skating. that's quality of life that I absolutely wouldn't have if I'd rejected treatment.
  • hwt
    hwt Member Posts: 2,328 Member

    correct me if I'm wrong, but
    correct me if I'm wrong, but haven't heard from many folks who have "quality of life" when their advanced cancer symptoms worsen.
    for me, the motivation to seek a diagnosis/cure was due to declining quality of life. loss of weight and energy meant that I was no longer able to skate/hike like I once could. trismus in my jaw meant that I couldn't open my mouth wide enough to bite a reuben sandwich. had I allowed the SCC to progress, I have no doubt my quality of life by now would have been even worse.
    as it is, I'm gaining weight again. the past three months haven't been fun, but they're in the past. I plan on living to see my grandchildren, and taking them ice skating. that's quality of life that I absolutely wouldn't have if I'd rejected treatment.

    When this all began for me
    When this all began for me (just turned 61) I asked the surgeon if I had any other options and he bluntly told me "yes, you can do nothing and wait to go to hospice". He also said it was treatable and "curable". What he did not tell me was how difficult the journey was. There were definitely days when I questioned whether I had made the right decision. When the going got tough, some days I lost sight of all that optimism but then it became a memory when the first CAT scan came back NED. I feel like a traded 6 months for a chance at a lifetime.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    hwt said:

    When this all began for me
    When this all began for me (just turned 61) I asked the surgeon if I had any other options and he bluntly told me "yes, you can do nothing and wait to go to hospice". He also said it was treatable and "curable". What he did not tell me was how difficult the journey was. There were definitely days when I questioned whether I had made the right decision. When the going got tough, some days I lost sight of all that optimism but then it became a memory when the first CAT scan came back NED. I feel like a traded 6 months for a chance at a lifetime.

    Stage-4
    I was stage-3 and am now 3+-years post-chemo and rad, only, treatment. Stage-4 for most Cs is not good, and with some it does kick them into quality of life mode. However, for H&N this is often not the case, as others above have noted. Hope that's the case w/you.

    kcass
  • tuffenuff
    tuffenuff Member Posts: 277
    I'm stage 4a tonsil, 40
    I'm stage 4a tonsil, 40 years old. The only way I could have considered doing nothing is if I were twice my age or the cure rate was less than 10%. I have too many adventures left in me! I think everyone here does also. The treatment is bad but it's NOT THAT BAD and certainly not worse than the alternative.
  • katenorwood
    katenorwood Member Posts: 1,912
    A fellow ACCer
    Cancernaut,
    Hello, and welcome to our group. I also am living with the adenoid cystic carcinoma dx. Please don't give in to the fear of the unknown. Mine was in the right submandiblar saliva gland. I was able to be resected and tried rads but failed miserably. Was effecting my vocal cords and voice box to the point I was hospitalized for it. I decided to back out of it due to my quality of life being effected by it. Now I have to live with my decission (even though my docs agreed) and know my cancer is still lurking. Are your doctors knowledgable and have they treated patients with our rare form of cancer. Mine weren't. I am going to send you a link for a foundation with wonderful promising information on our specific cancer. Don't hurry on a decission not to fight until you have all the facts. I will be thinking of you...and there are a few others with ACC on this site. I will fight on for a cure, and try other options. I hope you find the strenghth to do the same ! Warmest regards ! Katie

    Couldn't get the msg sent so....the site is under yahoo search ACCRF or ACCOI. PLEASE read the info under these links they are specific to our cancer period. Also give treatment options that most doctors aren't aware of. I wish you only the best...and again being informed is the best policy on decission making !
  • Greend
    Greend Member Posts: 678
    Stage 4
    Treated in 1996. Treatments were rough as well as a short time following my completion of treatment but we all made it and I too get to enjoy my grandchildren as a result.

    Hang in there a give it a fight. Great site for information and venting your fears nd frustrations.
  • Billie67
    Billie67 Member Posts: 898
    Greend said:

    Stage 4
    Treated in 1996. Treatments were rough as well as a short time following my completion of treatment but we all made it and I too get to enjoy my grandchildren as a result.

    Hang in there a give it a fight. Great site for information and venting your fears nd frustrations.

    I chose treatment
    I chose to do chemo and radiation and surgery wasn't an option for me either if I ever wanted to talk again. I too was diagnosed as stage 4. My oncologist said that stage 4 in the H&N is much different than anywhere else in the body. Much more treatable and curable.
    I just finished treatment 6 weeks ago and starting to feel like me again. I won't lie, treatment (radiation more so than chemo) was tough but doable. I will have my first scan at the end of the month to see how successful we were but both of my oncologists and my surgeon are extremely positive that we nailed it.
    I say please don't do too much research on the Internet because you can find all kinds of horror stories that may not be true or even pertain to you. I never looked once! A nurse at the office recommended this site and I'm so glad I found it. Everyone has been so positive and helpful.
    Lastly, you are young, I say fight and beat this but I can't and don't intend to make that decision for you. People much older than you have done this treatment and are living healthily now. Just keep that in mind. Good luck to you and whatever you decide to do. Come back often, we are always here to tell you how we got thru certain periods.
    Take care,
    Billie
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    Billie67 said:

    I chose treatment
    I chose to do chemo and radiation and surgery wasn't an option for me either if I ever wanted to talk again. I too was diagnosed as stage 4. My oncologist said that stage 4 in the H&N is much different than anywhere else in the body. Much more treatable and curable.
    I just finished treatment 6 weeks ago and starting to feel like me again. I won't lie, treatment (radiation more so than chemo) was tough but doable. I will have my first scan at the end of the month to see how successful we were but both of my oncologists and my surgeon are extremely positive that we nailed it.
    I say please don't do too much research on the Internet because you can find all kinds of horror stories that may not be true or even pertain to you. I never looked once! A nurse at the office recommended this site and I'm so glad I found it. Everyone has been so positive and helpful.
    Lastly, you are young, I say fight and beat this but I can't and don't intend to make that decision for you. People much older than you have done this treatment and are living healthily now. Just keep that in mind. Good luck to you and whatever you decide to do. Come back often, we are always here to tell you how we got thru certain periods.
    Take care,
    Billie

    Hmm...
    Sorry I did not post sooner. I seem to keep missing posts ..busy with work and life I guess...

    ...now there's a point to consider. I was stage III base of tongue. No surgery option for me...only radiation and Erbitux ...and how can one describe the quality of life now (still have pain, comes and goes) eat smaller bites, chew longer, do get tired sometimes (I am 6 months past my last radiaton)...


    ...so here is what makes it all worth while..this past Father's Day when I sat in church and all five of my children and wife sat with me on that row...as I looked down the row at my dauther Georgia 13, my sons Kohle 11, West, 8, Jace 5 and Raylan 2 as well as my beautiful wife ....I knew no matter what, I had quality of life if I only had gotten one more day of life extra from all my treatments and all I went through :)

    And I don't have the side affects or issues some do have on this journey...and my heart hurts for those less fortunate than me every single day. They are always in my prayers!!!

    Best,

    Tim
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    Another Stage 4 weighing in here
    Hi Cancernaut

    I was diagnosed at age 55 with stage 4 Squamous Cell Carcinoma, Base of Tongue with metastises to several lymph nodes on both sides of my neck. Two minor surgeries - one 3 cm lymph node cut out, and tonsils removed during an extensive biopsy process. Eight weeks of oncurrent chemo and rads, which ended just over two years ago. Treatment was very difficult, but very much worth it. I am so very happy to be here now, with my family and friends, and I plan to stick around for a long time. My quality of life is great. I've got a few lingering side effects, but nothing debilitating. You CAN do this.

    A wise nurse told me that the treatment process would "consume" about six months of my life. And so it did. After that, I got my life back.

    Deb
  • mls351w
    mls351w Member Posts: 90
    D Lewis said:

    Another Stage 4 weighing in here
    Hi Cancernaut

    I was diagnosed at age 55 with stage 4 Squamous Cell Carcinoma, Base of Tongue with metastises to several lymph nodes on both sides of my neck. Two minor surgeries - one 3 cm lymph node cut out, and tonsils removed during an extensive biopsy process. Eight weeks of oncurrent chemo and rads, which ended just over two years ago. Treatment was very difficult, but very much worth it. I am so very happy to be here now, with my family and friends, and I plan to stick around for a long time. My quality of life is great. I've got a few lingering side effects, but nothing debilitating. You CAN do this.

    A wise nurse told me that the treatment process would "consume" about six months of my life. And so it did. After that, I got my life back.

    Deb

    stageIII/IV
    I was diagnosed at stage 3 base of tongue and progressed to stage 4 right before treatment started. I was given choice of surgery/light radiation, heavy radiation/chemo, or do nothing.
    I went with radiation/chemo.
    First of all, don't go to any site but this one (imo).
    These are the best group of people to confer and comiserate with.
    Only you can decide how to deal with this. The treatment can get rough and the side effects can be tough. But I NEVER thought about doing nothing. I think that "doing nothing" is not in anyone's vocabulary that posts on this site. This is a group of fighters. Personally, I don't know if quality of life would be to wait around to die. In my case, I fully recovered and have no lingering effects, so I might not be the best person to discuss this with you.
    I had a yearly check-up last month and have been "clean" for 6 years.
    Sorry if my attitude is a bit harsh, but there it is. If you decide against treatment, then that is your decision and I respect the reason behind it.
    My sincere best wishes to you and yours whatever you decide!

    Mark S.
  • patricke
    patricke Member Posts: 570
    ONE MORE WEIGH IN
    And in this corner is a stage 4 bot, diagnosed in July of 2000, treated with radical dissection surgery in September of 2000, followed by 35 radiation zapps, but no chemo. I was the healthiest person I knew at the time of my diagnosis (e.g., ran regularly, lifted weithts, surfed, ate my greens and antioxidents, etc), but cancer is, as we know, an equal opportunity disease. None of the treatment was a walk in the park, and I, like the rest of the crew, have adjusted to a new normal. Overall, my quality of life is great, all things considered, in that, I am doing just about everything that I did before my cancer attack, but I have had to adapt, and modify. Everyone's situation is unique, in the midst of a lot of commonalities with others who have been or are in similar diagnostic and treatment situations. I believe that the key to one's quality of life has more to do with attitude, flexibility, and adaptibility than with the situation itself. I believe that it is worth going thru the gauntlet of treatment, to come out the other side and be able to keep having fun with your family; it was for me. Lastly, I don't believe in throwing in the towel to let cancer win without giving it my "A Game Fight." I just had a delightful week with my two kids and grandson. Life is good, I'm just happy to be here!

    PATRICK
  • osmotar
    osmotar Member Posts: 1,006
    patricke said:

    ONE MORE WEIGH IN
    And in this corner is a stage 4 bot, diagnosed in July of 2000, treated with radical dissection surgery in September of 2000, followed by 35 radiation zapps, but no chemo. I was the healthiest person I knew at the time of my diagnosis (e.g., ran regularly, lifted weithts, surfed, ate my greens and antioxidents, etc), but cancer is, as we know, an equal opportunity disease. None of the treatment was a walk in the park, and I, like the rest of the crew, have adjusted to a new normal. Overall, my quality of life is great, all things considered, in that, I am doing just about everything that I did before my cancer attack, but I have had to adapt, and modify. Everyone's situation is unique, in the midst of a lot of commonalities with others who have been or are in similar diagnostic and treatment situations. I believe that the key to one's quality of life has more to do with attitude, flexibility, and adaptibility than with the situation itself. I believe that it is worth going thru the gauntlet of treatment, to come out the other side and be able to keep having fun with your family; it was for me. Lastly, I don't believe in throwing in the towel to let cancer win without giving it my "A Game Fight." I just had a delightful week with my two kids and grandson. Life is good, I'm just happy to be here!

    PATRICK

    Life is good
    Patrick,

    I have to agree with you about the unique situation each of us goes thru..I just spent the weekend at the Grand Canyon with family, a year ago I was starting my chemo treatments...I have way too much life ahead of me.

    Linda
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    osmotar said:

    Life is good
    Patrick,

    I have to agree with you about the unique situation each of us goes thru..I just spent the weekend at the Grand Canyon with family, a year ago I was starting my chemo treatments...I have way too much life ahead of me.

    Linda

    Grand Canyon
    :)
    This post made me smile. I just spent two weeks camping in the high Sierra. Gotta love those sunrises and sunsets.

    Deb