Needing advice prayers HEEEEEEElP

honeybelle22
honeybelle22 Member Posts: 70
in Head and Neck Cancer #1
Hi everybody...I sure need you now. Brief recap of "C" history. The cancer du'jour squamous cell. Jan 2010 found in tumor on side of tongue and swollen lymph nodes. Radical radiation and chemo in March. Sept...found again in Paroid gland left side. Surgery to remove that..no lymph node activity. Healing for month. "Shallow" radiation all of Dec. No chemo.
Feb 21 I was in to see Oncologist...no lymph node activity..blood work good. Feb 28, in
to see ENT....same thing..except my voice is so hosrse. He scoped my throat...no sign of cancer but vocal cords swollen. He says from radiation..makes sense. But, he checked my tongue and found nothing. Sounds good right..BUT..when I was home I started feeling around tongue because of odd feelings. And I have found two lumps... 1-small on side toward the front of tongue. 2nd under tongue toward front. I have a PET scan schduled today. And I know that that will tell a lot.
But, my questions are these...should I also demand a CT scan? And from what I know and my history I'm sure these two lumps are positive. So, I guess my option is removal. And hoping cause they are small and to the front it won't be as drastic as it could be...but....am I maxed out on radiation.??? Chemo from what I understand isn't effective here. So, is that it ?? And what's it like after...can I talk...eat...swallow. This seems like I'm just chasing something around and around...never getting ahead of it.
I guess I'm whining some.. But, I scared. More scared then I was in the beginning. The options seem to be getting less and less. You all have so much more knowledge than I do and I hope you can tell me how to handle this. What should I make sure they are doing beside the biopsys etc. Should I demand radiation. Can I demand radiation??? Help

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    Please call your ENT today.
    Honeybelle

    It can be so many things. It's strange that your ENT didn't notice anything and he just did an exam. Might just be radiation side effects. Keep your PET appointment and call your ENT and make an appointment for a visual exam. You still have many avenues left, such as surgery and probably Breachytherapy which is localized seed implantation directly on the tumor site. Please call your ENT and get in soon!
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #3
    It's ok too
    First off, one reason we are all here is so people whine and we have been somewhat where you are so we can share our history to help out. Whine away.

    I would do the pet scan as it will put the highlight of any problem. Second I would get an appointment now with your ENT. Third I would have another ENT check out your tongue also. Make sure they take biopsy's of the two locations now, and wait with wisdom for the results.

    My understanding with my treatments and then finding a spot on my tongue years after. The only option we have is surgery. We can only have so much radiation in an area is what I understand. I had a small spot at back of tongue on side where it connects to side wall. They cut it out and have had no problems in the last 25 months.

    Trust your doctor or find another. Deal with the problem when you know the problem. In your case you do not know if it is cancer yet. Doctor's can not really tell my looking at until they do biopsy so how can anyone else know?

    Praying for wisdom for you and your family.

    Please keep us updated.

    John
  • mixleader
    mixleader Member Posts: 267 Member
    #4
    Good Thoughts
    Hi, Honeybelle. My problems are different than yours, and I have no great medical advice for you. However, you certainly have my best wishes and prayers. My cancer started in my right parotid and I was also told that chemo would not be very effective against it. From what I understand, your PET scan should tell the tale. I thought all PET scans were PET/CT because they include a CT scan as part of the PET. I was told that the PET glows where there is cancer and the CT portion of it locates it in the body. Please somebody correct me if I am wrong. I fully understand your fears as I have been there and I still am fearful for the future. However, I have learned to take it one day at a time and I will not let this beast run my life. Stay strong.

    Roger
  • ccraw44
    ccraw44 Member Posts: 3
    #5
    I will keep you in prayer
    I will keep you in prayer because I know that God guides the physcians hands and he is able to deliver us from all. I understand your being scared. It's hard not to be. It is possible that it is side affects of the radiation.
  • Scambuster
    Scambuster Member Posts: 973
    #6
    PET CT
    Ask your Doctor about getting a PET/CT which is done simultaneously and gives a better and more accurate result.

    There may be reason they haven't suggested this but most likely is they don;t have that machine. If that is the case, demand to be sent to a centre that has the PET /CT equipment.

    Scam
  • seenanN
    seenanN Member Posts: 24
    #7
    Prayer
    I would ask my ENT for MRI since it does better job with the soft tissue and you do not have to worry about more X-ray in you body.
    my prayer is on your way

    seenan
  • honeybelle22
    honeybelle22 Member Posts: 70
    #8
    fisrpotpe said:

    It's ok too
    First off, one reason we are all here is so people whine and we have been somewhat where you are so we can share our history to help out. Whine away.

    I would do the pet scan as it will put the highlight of any problem. Second I would get an appointment now with your ENT. Third I would have another ENT check out your tongue also. Make sure they take biopsy's of the two locations now, and wait with wisdom for the results.

    My understanding with my treatments and then finding a spot on my tongue years after. The only option we have is surgery. We can only have so much radiation in an area is what I understand. I had a small spot at back of tongue on side where it connects to side wall. They cut it out and have had no problems in the last 25 months.

    Trust your doctor or find another. Deal with the problem when you know the problem. In your case you do not know if it is cancer yet. Doctor's can not really tell my looking at until they do biopsy so how can anyone else know?

    Praying for wisdom for you and your family.

    Please keep us updated.

    John

    Thank you so much
    First thing I want to say is thank you so much. I don't think I can quite measure the lift I got as soon as I can back this morning to read these posts. Each one of you makes fear go away and lifted me up. Thank you.
    I went for PET scan yesterday and will get results soon. And ENT Appt. Friday. sooo..that's D-day.
    Have any of you heard of the Moffett Cancer Center in Tampa. I am not going there now but am thinking of seeing if I can get a referral if there's any problems that show up. I may not be able to because of insurance but can try. In my area in Fla. it's considered the best but for me a very LONG trip but might be worth it.
    If we could figure out a way to put support like this in a bottle. "RX SUPPORT"..we'd put big Pharma out of buisness. And we'd ALL be rich.
    Will post soon. Thank you with all my heart..Rose
  • honeybelle22
    honeybelle22 Member Posts: 70
    #9
    Scambuster said:

    PET CT
    Ask your Doctor about getting a PET/CT which is done simultaneously and gives a better and more accurate result.

    There may be reason they haven't suggested this but most likely is they don;t have that machine. If that is the case, demand to be sent to a centre that has the PET /CT equipment.

    Scam

    PET/CT
    Scambuster, That's something I've never known about. I've had both but they where done on two different machines and I thought used two different drugs. Iodine for CT that gives you that really wield feeling in your body and something else for PET. In PET the drug they give I have no sensation or feeling from and I have to sit for one hour before scan. but not with CT. NOW, yesterday...they said they did a LARGE picture of neck...took 25 mins..then sent me to pee LOL and then came back for 2nd scan of 25 mins. FULL body. Is that what you mean ??? Very extensive.
    I once asked my Radiologist if with all the rays we soak up from PET CT X-RAYs MRI and radiation would hurt animals. Seems to me it must be a lot in our bodies by now. Something to think about. Bless you Rose
  • honeybelle22
    honeybelle22 Member Posts: 70
    #10
    seenanN said:

    Prayer
    I would ask my ENT for MRI since it does better job with the soft tissue and you do not have to worry about more X-ray in you body.
    my prayer is on your way

    seenan

    seenan
    I was just thinking about that...see above. Scary isn't it. I've had MRI's but I've noticed the DOCs have to have a good reason to use it to get through insurance. Rose
  • honeybelle22
    honeybelle22 Member Posts: 70
    #11
    ratface said:

    Please call your ENT today.
    Honeybelle

    It can be so many things. It's strange that your ENT didn't notice anything and he just did an exam. Might just be radiation side effects. Keep your PET appointment and call your ENT and make an appointment for a visual exam. You still have many avenues left, such as surgery and probably Breachytherapy which is localized seed implantation directly on the tumor site. Please call your ENT and get in soon!

    YES SIR
    Ratface, did as you said..I went for PET and ENT Friday. Also, Wed I go to opthamologist for a blocked tear duct..resulting from my surgery on my Paroid gland. I'm expecting an irrigation. Not a pleasant experience but needed now. Lov ya Rose
  • seenanN
    seenanN Member Posts: 24
    #12
    honeybelle22 said:

    seenan
    I was just thinking about that...see above. Scary isn't it. I've had MRI's but I've noticed the DOCs have to have a good reason to use it to get through insurance. Rose

    Prayer
    Hi Rose,
    I am praying for the good outcome of your Friday visit.
    Seenan

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