My fathers diagnosis earlier this afternoon......depressing to say the least

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  • robinleigh
    robinleigh Member Posts: 297
    #22
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    Jason,
    I wanted to ditto
    Jason,
    I wanted to ditto what everyone here said about remaining strong and positive. Fear and negativity do absolutely no good. I found this site to be so uplifting but had my nerves rattled sometimes when I would surf the web and end up at unreliable sites. Everyone on this site is so well-informed so from my experience...stay away from ones that shake your confidence.

    My husband was diagnosed in January with Stage IV BOT/Tonsil cancer and has just finished all of his treatment. Robotic surgery, radical neck dissection, chemo and radiation concurrently. It is no "walk in the park" but I promise your Dad will make it through! The medical team will guide you and your family through this ONE STEP AT A TIME. Learn about the possible side-effects but don't assume your Dad will have them all. Everyone is different.

    FYI...I'm not sure if your family plans to seek a 2nd opinion. Obviously, there are sooo many amazing cancer centers evidenced by all of the survivors on this site. I just want to pass along that my husband had robotic surgery at Mayo Clinic in Rochester, MN by Dr. Eric Moore who pioneered this less traumatic type of surgery. You can actually watch a You Tube of him/the surgery on the Mayo website. Any interest...I can tell you more.
  • Dale_G
    Dale_G Member Posts: 18 Member
    #23
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    I was stage 4 too
    and my last scan was 'all clear'. This type of cancer is curable. My primary site was at the base of my tongue, metastasized to a lymph node in my neck. Today the neck mass is gone and the primary site is clear.
  • Jason1111
    Jason1111 Member Posts: 64
    #24
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    robinleigh said:

    Jason,
    I wanted to ditto
    Jason,
    I wanted to ditto what everyone here said about remaining strong and positive. Fear and negativity do absolutely no good. I found this site to be so uplifting but had my nerves rattled sometimes when I would surf the web and end up at unreliable sites. Everyone on this site is so well-informed so from my experience...stay away from ones that shake your confidence.

    My husband was diagnosed in January with Stage IV BOT/Tonsil cancer and has just finished all of his treatment. Robotic surgery, radical neck dissection, chemo and radiation concurrently. It is no "walk in the park" but I promise your Dad will make it through! The medical team will guide you and your family through this ONE STEP AT A TIME. Learn about the possible side-effects but don't assume your Dad will have them all. Everyone is different.

    FYI...I'm not sure if your family plans to seek a 2nd opinion. Obviously, there are sooo many amazing cancer centers evidenced by all of the survivors on this site. I just want to pass along that my husband had robotic surgery at Mayo Clinic in Rochester, MN by Dr. Eric Moore who pioneered this less traumatic type of surgery. You can actually watch a You Tube of him/the surgery on the Mayo website. Any interest...I can tell you more.

    Absolutely!
    I am open to all options at this point. My fathers doctor is Dr. Agrawal at the Arthur James Cancer facility at Ohio State. We were told that he is one of the best at what he does and he does this exact type of cancer on a daily basis. After all of the doctor visits to other places, he took one close look at my father for about 30 seconds and found things that others had missed. I can only hope and pray that the source is in one of his tonsils that he takes out on May 5th.


    When your husband had his radiation and chemo did he lose his hair? Weight? I was told to prepare for the worst if he had to go through that and he does so I was just wondering. Any information that you could provide to help me prepare for this endeavor would be greatly appreciated....


    Thank you for the information
  • Jason1111
    Jason1111 Member Posts: 64
    #25
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    Dale_G said:

    I was stage 4 too
    and my last scan was 'all clear'. This type of cancer is curable. My primary site was at the base of my tongue, metastasized to a lymph node in my neck. Today the neck mass is gone and the primary site is clear.

    FANTASTIC!!
    That is fantastic that your test results came back all clear. I cannot wait for the moment in time when the doc says ," You are NED" No Evidence of Disease. Cannot wait.. We all here hope alll goes well for you in the future!!
  • hawk711
    hawk711 Member Posts: 566
    #26
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    Jason1111 said:

    FANTASTIC!!
    That is fantastic that your test results came back all clear. I cannot wait for the moment in time when the doc says ," You are NED" No Evidence of Disease. Cannot wait.. We all here hope alll goes well for you in the future!!

    Jason
    There are many things that you & your dad will learn going forward. First of all is the treatment. Radiation is a bitc*. It burns your skin, your mouth & throat. Many of us had a PEG or feeding tube inserted to make sure we could get nourishment during treatment. Swallowing will become difficult and the feeding tube can really be a good thing for getting nourishment. I lost 25 lbs or so and many others here lost 60+ lbs, so being nourished and hydrated are very important for your dad. The treatment is hard, but the cancer us curable. I am NED now and have been for 4 months. I am 13 months post treatment and life is getting better everyday. Tell your dad for me to be positive, have faith and then go kick cancers butt!!! We are all here to help you in any way possible. Keep coming back whenever you need answers, want to talk, or just to vent.
    all the best. I'll keep your dad in my prayers.
    Steve
  • robinleigh
    robinleigh Member Posts: 297
    #27
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    Jason1111 said:

    Absolutely!
    I am open to all options at this point. My fathers doctor is Dr. Agrawal at the Arthur James Cancer facility at Ohio State. We were told that he is one of the best at what he does and he does this exact type of cancer on a daily basis. After all of the doctor visits to other places, he took one close look at my father for about 30 seconds and found things that others had missed. I can only hope and pray that the source is in one of his tonsils that he takes out on May 5th.


    When your husband had his radiation and chemo did he lose his hair? Weight? I was told to prepare for the worst if he had to go through that and he does so I was just wondering. Any information that you could provide to help me prepare for this endeavor would be greatly appreciated....


    Thank you for the information

    Sounds like you're on track
    Sounds like you're on track to battle this cancer that IS CURABLE!!!
    My husband's source was tonsil but they were suspicious prior to surgery that it extended to base of tongue, which it did.

    We assumed that he would lose his hair with cisplatin (considered "the big gun" chemo) but it does not cause hair loss, just maybe some thinning. Other side effects that they closely monitor are hearing loss, neuropathy, and kidney function. Any sign of problems in these areas, they will adjust the dosage or only do 2 of the 3 treatments or possibly change to another chemo drug altogether. My husband was monitored closely in regards to these long-term side effects.

    Weight and Nutrition....We started out without a PEG tube so that his swallowing function could stay strong. We were told that if he lost 5% of his body weight they would start considering a PEG tube and at 10% loss a PEG would definitely be used. He made it without until the 4th week of radiation when I begged for it because I knew we were going home soon and swallowing would continue to be difficult. (BTW...My husband started out as a slim guy with not much weight to lose.) We are relieved at this point to have the PEG in place and I still nag for him to continue swallowing through the pain so that his muscles continue to function.

    Maybe too much info. for one reading. I apologize. I know it's overwhelming but, since we're just a bit ahead of you in the process so much is clearly in my mind. I need to reiterate that everyone's journey is unique and our experience is just the path we are finding to get through this battle. It seems that there are lots of similarities in what works for people and it's always good to hear other's "remedies" to deal with side effects.

    My best to you and your family. I prayed for courage and strength and will say those prayers for you, as well.















    5
  • robinleigh
    robinleigh Member Posts: 297
    #28
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    need n update
    Please post soon. Want to know where your decisions are falling
  • youngcsn
    youngcsn Member Posts: 2
    #29
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    Walking with your father
    I was diagnosed with stage 4 nasopharyngeal cancer in September 2010 when I was 31 years old, and I just finished my treatments in March this year. I know very well how it affects your family and still feel like yesterday for me. Read my "About Me" page, I hope that may help a little how I went through it and still going through. Stay behind your father as much as possible, he needs you very very much as much as you need him I am sure. Let me know if you have any questions or need any assistance or anything you like to share.
  • Jason1111
    Jason1111 Member Posts: 64
    #30
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    robinleigh said:

    need n update
    Please post soon. Want to know where your decisions are falling

    So far....
    As of right now, the specialist wants to do surgery to take out the lumps in his neck. He has 3 on the right side of his neck and one on his left. He is also having both of his tonsils removed the same day as his neck disection. The small spot on the roof of his mouth and at the very back of his tongue, the specialist seems to think that radiation will get it without too much of a problem. I have to go back down with my Father this Thursday (April 28th) for an MRI, PET Scan, and blood work. I hope they find his primary in one of his tonsils. I will keep everyone informed as to what is going on just as soon as we find out anything.
  • Jason1111
    Jason1111 Member Posts: 64
    #31
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    robinleigh said:

    Sounds like you're on track
    Sounds like you're on track to battle this cancer that IS CURABLE!!!
    My husband's source was tonsil but they were suspicious prior to surgery that it extended to base of tongue, which it did.

    We assumed that he would lose his hair with cisplatin (considered "the big gun" chemo) but it does not cause hair loss, just maybe some thinning. Other side effects that they closely monitor are hearing loss, neuropathy, and kidney function. Any sign of problems in these areas, they will adjust the dosage or only do 2 of the 3 treatments or possibly change to another chemo drug altogether. My husband was monitored closely in regards to these long-term side effects.

    Weight and Nutrition....We started out without a PEG tube so that his swallowing function could stay strong. We were told that if he lost 5% of his body weight they would start considering a PEG tube and at 10% loss a PEG would definitely be used. He made it without until the 4th week of radiation when I begged for it because I knew we were going home soon and swallowing would continue to be difficult. (BTW...My husband started out as a slim guy with not much weight to lose.) We are relieved at this point to have the PEG in place and I still nag for him to continue swallowing through the pain so that his muscles continue to function.

    Maybe too much info. for one reading. I apologize. I know it's overwhelming but, since we're just a bit ahead of you in the process so much is clearly in my mind. I need to reiterate that everyone's journey is unique and our experience is just the path we are finding to get through this battle. It seems that there are lots of similarities in what works for people and it's always good to hear other's "remedies" to deal with side effects.

    My best to you and your family. I prayed for courage and strength and will say those prayers for you, as well.















    5

    By all means.....
    say anything that you feel I need to know. The experiences and difficultities are exactly what I want to hear. The more I know and can relay to my father the better, as I don't want to get suprised by anything going into this. Thank you very much for all of your info Robin. I hope we, as caregivers, can learn and have our loved ones back to normal as soon as possible.


    Take Care!
    Jason
  • march31
    march31 Member Posts: 6
    #32
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    hubby diagnosed 3/31
    I am very sorry to hear your news jason. My hubby was diagnosed on the 31st and his c seems to be all the left side of his neck and his tonsil, thankfully petscan was clear. he is scheduled for surgery may 2 and they will follow that with radiation. we feel very fortunate that they found this on a fluke and we have great confidence in our doctor. the worst part of this ordeal has been the waiting and the endless test after test. I just posted on this board yesterday because my frustration level was through the roof and my level of anger was scary, i find this board so helpful in just the short time i've been here. In these past few weeks i am learning that that its ok to be angry at whoever i want to and to cry when i need to and cleaning my house from top to bottom is amazing therapy. I also would like you to know that our sons ages 27 & 25 held up really well for a week or so and then just lost it one day and spent the day hugging, crying and laughing with their day, so i think in a way the positive of this ordeal is that we appreciate those in our lives more. And on Oct 17,2004 I lost my vital mom to this disease so I understand at every level as a child of a parent with cancer how you feel. My mom's was caught way tooooo late so please dont think that I am saying the same will happen with your dad. our parents are the ones who give us our strenght and now they need ours. I wish you and your family all the best and will pray for you....we will beat this disease...Kathy
  • buzz99
    buzz99 Member Posts: 404
    #33
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    Hope
    Jason, I know you are dealing with so many issues and emotions right now. All of us here know exactly how awful you must feel. My husband, Buzz, was diagnosed with base of tongue cancer (Stage IV) August 2010 and he started treatment in September. He finished treatment January 10 (2 rounds of chemo, 33 rads with Erbutux). It was a difficult experience but I can tell you now that he lost very little weight (he has a PEG tube), and is almost fully recovered. He is eating 100% and no longer using the tube. He feels better every day. You can look forward to such a recovery for your dad. The stats we read about were 50/50 but now we are told Buzz has an 85% chance of cure. So, don't believe the 50/50. We will be here for you every step of the way. I am glad to be behind this and able to help others as I was helped when we were in the midst of this difficult journey. Karen
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #34
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    WELCOME TO OUR GROUP
    Hi Jason, sorry you find yourself here, but more imortantly, welcome and you will find comfort and support from all of us. I was diagnosed with SCC with the primary being in the Right Tonsil with 19 nodes showing cancer in my neck. I was stage 4B due to the aggressiveness of the cancer. I had 3 surgeries and Chemo and rads and last Wednesday I receieved an "all clear" from my ENT using a throat scope and physical exam.

    I am another example from many who have not just survived, but have beat this horrible disease.

    Best!!

    Mike

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