Diagnosis at last...

phrannie51
phrannie51 Member Posts: 4,716
in Head and Neck Cancer #1
I have NPC T1N2M0 Stage III...the primary tumor is at a place in my throat that is against the vertabrae(maybe they all are with this??), so the plan is rads and chemo first. There is also an enlarged node on the other side of my neck, smaller than the original one. He said they'll be cooking those along with the tumor.

I maybe leaving something out...it felt like information was being delivered with a fire hose :)...

Once I found out that we have the IMRT here, I had decided that for radiation and chemo, home is where I'd stay. If surgery was needed, I simply didn't know where I'd go, or if I'd stay home....for now, that isn't in the plan....Now I'm asking you folks...should I have my stuff sent out for a second opinion? And where to? MD Anderson is on my Network, but Mayo is not...

I don't know why I feel so much better....but I DO!!

p

Comments

  • ooo
    ooo Member Posts: 105
    #2
    Hi Phrannie,
    Indeed, knowing
    Hi Phrannie,

    Indeed, knowing what we are facing makes us feel better. I don't know what the standard treatment for NPC is or if you can wait a week or two before starting treatment, but I'd say that two opinions are always better than one. Best of luck!

    Dre.
  • Kyle Gilmore
    Kyle Gilmore Member Posts: 55
    #3
    Welcome to the NPC gang.
    You have almost exactly what I was diagnosed with...Except my t was t2.

    Its gonna be a tough treatment but it seems that our C has been reacting well to all the new treatment like tomotherapy and so forth my tumors started to just disappear after a few weeks of concurrant chemo and rad treatment. There has been alot of positive recovery I have seen NPC patients posting on this board.Doc keeps telling me I am cured.

    What I would suggest is get your self a g tube for your nutrition, start eating as much and often as you can right now and get used to drinking all the water you can. All the side effects really sucked for me but the worst part of everything was me neglecting to be proactive about my nutrition and hydration...It put me in the hospital for a few days in the middle of treatment due to dehydration...was NOT cool. After they instaled the tube it took a bit getting used to but man it saved my life. It seems because where our tumors are that rads and chemo does a number on us with mucus and pain.

    I know it sucks and its so hard to absorb the news but you can go through this and come out the other side with a new found strength and peace regardless of the outcome and circumstances.The people here showed me that they are on point with there knowledge, experience, compassion and true concern for people in our position.

    So get soldiered up and know there are people out here that been there, done that and will be there for any questions or support you might need....At least that is what I found through my experience.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Kyle Gilmore said:

    Welcome to the NPC gang.
    You have almost exactly what I was diagnosed with...Except my t was t2.

    Its gonna be a tough treatment but it seems that our C has been reacting well to all the new treatment like tomotherapy and so forth my tumors started to just disappear after a few weeks of concurrant chemo and rad treatment. There has been alot of positive recovery I have seen NPC patients posting on this board.Doc keeps telling me I am cured.

    What I would suggest is get your self a g tube for your nutrition, start eating as much and often as you can right now and get used to drinking all the water you can. All the side effects really sucked for me but the worst part of everything was me neglecting to be proactive about my nutrition and hydration...It put me in the hospital for a few days in the middle of treatment due to dehydration...was NOT cool. After they instaled the tube it took a bit getting used to but man it saved my life. It seems because where our tumors are that rads and chemo does a number on us with mucus and pain.

    I know it sucks and its so hard to absorb the news but you can go through this and come out the other side with a new found strength and peace regardless of the outcome and circumstances.The people here showed me that they are on point with there knowledge, experience, compassion and true concern for people in our position.

    So get soldiered up and know there are people out here that been there, done that and will be there for any questions or support you might need....At least that is what I found through my experience.

    Food and nutrician....
    While I was having to stew in the wait mode, I read back on here to 2008, and know that getting a tube could be a lifesaver for me...I've been packing away the food like crazy, plus doing high protein drinks (I swear I slosh when I walk my dog). My sister brought over a dozen cabbage rolls and decadent potato soup last night...her goal is to fatten me up. I'm aiming to gain 20 lbs before they start doing a BBQ on my neck and throat. I haven't gained anything yet...but at least I know what I'm taking in is healthy stuff.

    I hear your story, and know that if the Dr. says TUBE, I'll simply say.."when"...

    p
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Treatment Plan...
    Depending on the treatment plan, chemo and radiation are pretty much standard. I was STGIII Right Tonsil HPV+ and a single lymhpnode on the same side. No surgery other than the tonsils coming out.

    Like you, they opted for results from the rads and chemo effect on the tumor first.

    After nine weeks (three week cycles of cisplatin, taxotere and 5FU), the tumor actually melted away.

    They also followed up with an additional seven weekly doses od carboplatin and 35 daily IMRT rads.

    So far nearly three years post treatment, all taste and saliva have returned, and all scopes, CT and PET scans have been clean.

    This was all from Watson Clinic Center for Cancer Care and Research in Lakeland, Florida. So for me, my small facility is doing the same as the larger well known facilities....

    It sounds as if your facility is on the ball also.

    Best,
    John
  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    Skiffin16 said:

    Treatment Plan...
    Depending on the treatment plan, chemo and radiation are pretty much standard. I was STGIII Right Tonsil HPV+ and a single lymhpnode on the same side. No surgery other than the tonsils coming out.

    Like you, they opted for results from the rads and chemo effect on the tumor first.

    After nine weeks (three week cycles of cisplatin, taxotere and 5FU), the tumor actually melted away.

    They also followed up with an additional seven weekly doses od carboplatin and 35 daily IMRT rads.

    So far nearly three years post treatment, all taste and saliva have returned, and all scopes, CT and PET scans have been clean.

    This was all from Watson Clinic Center for Cancer Care and Research in Lakeland, Florida. So for me, my small facility is doing the same as the larger well known facilities....

    It sounds as if your facility is on the ball also.

    Best,
    John

    The new pic for your profile...
    Everytime I see it, I laugh....LOL...it's so darn cute...Dogs are just the BEST, aren't they?

    p
  • Pam M
    Pam M Member Posts: 2,196
    #7
    Just Knowing Helps
    Seemed to me, the more I knew about my cancer, and what was going on, the better I felt, too. Once I got my treatment plan mapped out, I felt much better.

    good luck on the fattening up process.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
    phrannie51 said:

    The new pic for your profile...
    Everytime I see it, I laugh....LOL...it's so darn cute...Dogs are just the BEST, aren't they?

    p

    Definitely.....
    We love our dogs.....

    In my life I have been hurt by many people, never a dog.

    JG
  • ratface
    ratface Member Posts: 1,337 Member
    #9
    Pam M said:

    Just Knowing Helps
    Seemed to me, the more I knew about my cancer, and what was going on, the better I felt, too. Once I got my treatment plan mapped out, I felt much better.

    good luck on the fattening up process.

    You are right on course
    Steer a little to the right, now the left a little, there you go Phrannie. Your logic is right on, so go with it. I did exactly that. If you have the choice with access to health care, then there is no reason why you can't make adjustments as the journey and circumstances develop. I stayed with a little local hospital 15 minutes from my front door which just happened to have a cancer center and an IMRT machine. I have also known people to camp out at MD Anderson waiting for the doors to open. The gold standard of treatment is available at many good hospitals. If you are satisfied with your treatment team, and it should be a team, of an oncology radiologist, a chemo doc, an Ent, and a dentist at minimum. A nutritionist is a plus. Then go for it. Start getting treated and you will feel better. After my rads and chemo I wanted a neck dissection. My ENT disagreed. I moved on to another hospital. You are allowed to do that. Your journey begins, all the best.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #10
    ratface said:

    You are right on course
    Steer a little to the right, now the left a little, there you go Phrannie. Your logic is right on, so go with it. I did exactly that. If you have the choice with access to health care, then there is no reason why you can't make adjustments as the journey and circumstances develop. I stayed with a little local hospital 15 minutes from my front door which just happened to have a cancer center and an IMRT machine. I have also known people to camp out at MD Anderson waiting for the doors to open. The gold standard of treatment is available at many good hospitals. If you are satisfied with your treatment team, and it should be a team, of an oncology radiologist, a chemo doc, an Ent, and a dentist at minimum. A nutritionist is a plus. Then go for it. Start getting treated and you will feel better. After my rads and chemo I wanted a neck dissection. My ENT disagreed. I moved on to another hospital. You are allowed to do that. Your journey begins, all the best.

    Late...
    Just read your results news tonight, Phrannie. I, too, was NPC stage-3, but I was unknown Primary. NPC has an excellent percentage of success, and know you'll get there. Reason I'm late is that I'm on 2nd shift, now, working 10-hour shifts, and leaves little time to be surfing. Working 10-hour shifts, Phrannie. Tell you something about NPC recovery, doesn't it!

    Standard for NPC, according to the You Tube multi-part video I watched, which is of the world-wide summit meeting held every 2 years for H&N C, with many of the top Drs in the world in attendance- that standard is concurrent Chemo and Rads to start, and hopefully end. So, you likely should be getting the Rads while also getting the Cisplatin and 5FU chemos.

    I had two lumps maybe a little bigger than Quarters on the left side of my neck, and watched them gradually disappear entirely, Phrannie. If they found a Primary, though- not sure how that'll figure into your treatment, other than it gives them a very definite target to bombard with Rads. Fact it is in the lymph system, though, does likely mean the Rads will be a little more extensive than just being applied a couple places. For me, I got zapped in 20 different places/session.

    From my perspective, Phrannie, I'm glad for you it's NPC. Couple other Cs in our area that are not as patient-friendly for the long haul. That said, there's a number of things for you on the table going forward. Were I in your shoes, now, I would ask your Rad Dr about how much of the Rads are going to be applied to the oral/mouth area, because this may be the key to whether or not a PEG/G tube is gonna be needed beyond doubt. The Primary area you mentioned will make swallowing a bit dicey with the Rad-effects. Got my PEG and Port before any treatment started, and very glad I did. AND, make sure you get your Magic Mouthwash ahead of time, and you might wanna inquire about starting the Flouride Trays ASAP for the sake of your teeth.

    Cannot advise about a 2nd Opinion, other than I would consider it were I you, because of the known Primary. School of thought is to let the Chemo and Rads reduce the Primary, or maybe take care of it entirely, so that if an Op is needed- then less tissue will have to be removed, or altered. Still, MD Anderson is supposed to be one of the best in the entire world, and I can't see any negatives to getting an opinion from there.

    Welcome to the NPC group, Phrannie. We not only survive- we survive rather well. Get used to it!

    Believe

    kcass
  • phrannie51
    phrannie51 Member Posts: 4,716
    #11
    Kent Cass said:

    Late...
    Just read your results news tonight, Phrannie. I, too, was NPC stage-3, but I was unknown Primary. NPC has an excellent percentage of success, and know you'll get there. Reason I'm late is that I'm on 2nd shift, now, working 10-hour shifts, and leaves little time to be surfing. Working 10-hour shifts, Phrannie. Tell you something about NPC recovery, doesn't it!

    Standard for NPC, according to the You Tube multi-part video I watched, which is of the world-wide summit meeting held every 2 years for H&N C, with many of the top Drs in the world in attendance- that standard is concurrent Chemo and Rads to start, and hopefully end. So, you likely should be getting the Rads while also getting the Cisplatin and 5FU chemos.

    I had two lumps maybe a little bigger than Quarters on the left side of my neck, and watched them gradually disappear entirely, Phrannie. If they found a Primary, though- not sure how that'll figure into your treatment, other than it gives them a very definite target to bombard with Rads. Fact it is in the lymph system, though, does likely mean the Rads will be a little more extensive than just being applied a couple places. For me, I got zapped in 20 different places/session.

    From my perspective, Phrannie, I'm glad for you it's NPC. Couple other Cs in our area that are not as patient-friendly for the long haul. That said, there's a number of things for you on the table going forward. Were I in your shoes, now, I would ask your Rad Dr about how much of the Rads are going to be applied to the oral/mouth area, because this may be the key to whether or not a PEG/G tube is gonna be needed beyond doubt. The Primary area you mentioned will make swallowing a bit dicey with the Rad-effects. Got my PEG and Port before any treatment started, and very glad I did. AND, make sure you get your Magic Mouthwash ahead of time, and you might wanna inquire about starting the Flouride Trays ASAP for the sake of your teeth.

    Cannot advise about a 2nd Opinion, other than I would consider it were I you, because of the known Primary. School of thought is to let the Chemo and Rads reduce the Primary, or maybe take care of it entirely, so that if an Op is needed- then less tissue will have to be removed, or altered. Still, MD Anderson is supposed to be one of the best in the entire world, and I can't see any negatives to getting an opinion from there.

    Welcome to the NPC group, Phrannie. We not only survive- we survive rather well. Get used to it!

    Believe

    kcass

    As per usual Kent....
    your words come to the rescue at precisely the exact time I need to hear them. The last two days I've been up in the air again about where to go, and what to do....a "dither" so to speak :). I have appointments with the Oncology Rad Dr. (Thurs) and the Oncologist (Fri) here in town at the end of this next week. I also will be hearing from MD Anderson by Monday.

    GOOD FOR YOU on the work schedule. Long days on shift work...wonderful!

    My preferance would be to stay here for treatment...be home with hubby, and have my sisters close by...on the other hand, there are darn few people here in "small town Montana" who have had throat cancer in any form, and with that, I'm wondering if the only (and there is only 1) Radiologist has ever nuked a person with NPC. I don't know if practice makes perfect when it comes to Rads, or that maybe everything is so high tech, that it doesn't make any difference...but that's why I called MD Anderson.

    Thank you, also...for the practical things to get lined out...like the Magic Mouthwash ready on the shelf. If you think of anything else I should ready and waiting, please share.

    If you can think of any other questions I should ask the Rad Dr., I'd like to hear those, too. I seem to come up with way more questions after The Dr. has spoken and I've left for home. It's hard to think of questions on subject matter where I'm so ignorant.

    p

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