What a roller coaster....

After my PET scan, the ENT said "only in the two nodes"....I felt relieved hearing that.  Then a week later I see the Oncologist and he says "well, not exactly....there's a spot in the pharnyx that lit up a little bit,,,2.7"....ok so I deal with that idea, thinking it's in the actual throat where I've never had cancer, talk to the ENT, who doesn't feel it's cancer but says he'll biopsy it during the neck dissection.  THEN....I go to the hospital and see the surgery orders, and they say "modified radical neck dissection AND possible biopsy of the nasopharnyx".....now this was the first time I found out that this "spot" is in the nasopharnyx....the last of my reserve nerves and hope got blown out of the water! 

Came home and cried.  Hubby say "ok, we're going to talk to the Dr., and we'll sit there till he talks to us".....he got us right in.  He says he doesn't think it's cancer....he scoped me, and said he doesn't see anything at all.  My problem now is.....he could have told me everything....all of this right after he saw the PET scan, but he didn't.  I don't get it.  But I'm having trust issues....not about his skills, but his ability to lay things out.  If I have NPC agian, I could already be hooked up with MDA, or Seattle Care Alliance....getting a plan of action...I'm trying hard to stay in the day....but once a week I get a new piece of news....which makes me want to start ducking blows....ya know?

p

«1

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    team phrannie

    P,

    I don’t need a biopsy to diagnose you as a great person.  If you apply your compassion for others into getting out of this mess you will do just fine, I know it.

    Sending you extremely good thoughts, good luck and good wishes.

    Your Oregon bud,

    Matt

  • wmc
    wmc Member Posts: 1,804
    Don't like rollercoasters, I want it straight...........

    Have to say Joe said it best. Have the talk. At the first meeting I had I explained that I need to be involved in dissions and I need to be included. I have all the trust and fath in him, but We need to deside what need to be done. He was very open and sends me still a writen copy of check ups the same as he sends my other doctors. He did tell me I could not survive surgery because of my lungs and they would not do it unless I had a full laryngectomy, which I agreed to. I did let him know to just tell me what I need to do and I will do everything I can to help with my recovery.

     Portions of the pharynx lie posterior to the nasal cavity (nasal pharynx), oral cavity (oral pharynx) and larynx (laryngeal pharynx).Just saying pharynx and not which part would have me upset as well.

    Bill

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    Roller coaster from hell

    Don't blame you for wanting off.

    It does sound like you may need to remind your doctor how savvy and pro-active you are, Phran.  

    You are in that zone of knowing just enough to worry but not enough to make your battle plan.  That's the hard part.  Having info trickle in and getting conflicting reports.

    Hope you get resolution soon!

  • jcortney
    jcortney Member Posts: 503
    Sounds like it's time for "the talk"

    Early on. in my second run though. I felt like my ENT/Surgeon was spoon feeding me information.  Now in his defense, he's brilliant and most (probably 90+%) wouldn't know what he was talking about and really don't want the details, just an assurance that it will all be ok.  So, I had to sit him down for "the talk".  I made sure to start the conversation off telling him how much I respect and believe he has my best interests at heart, then proceeded to tell him I wasn't the "average bear" in that I know a lot about my disease and the more information he shared, the better I'll respond to what he wants to do and decisions that need to be made.  I told him it was important to me to not only know what he thought was the most likely, but also what was a definite maybe. We then spent about 20 minutes (a life time in an Cancer ENT's office) and he gave me the good, the bad and the ugly.  I left feeling like I had all the data and felt much better.

    Turned out that he was wrong in what he told me before "the talk".  He said he didn't think it was cancer on my thyroid and if it was, it was not squamous.  Wrong on both counts.  But not having it be a surprise when I woke up recovery room made all the difference in the world.

    Now, like you tell every newbie here, "it ain't Cancer till they say it's Cancer".  Have the talk, know everything you can, I promise you'll feel better when you wake up to a negative biopsy.

    We love you,

    Joe

  • Laralyn
    Laralyn Member Posts: 532
    Hang in there!
    I don't think

    Hang in there!

    I don't think it's too early to contact a doctor at a major cancer center for a second opinion--to get the ball rolling. You can let them know that you're about to have the biopsy, and get everything scheduled to meet with them right after. A second opinion always helps me a lot because then I stop wondering, "Am I doing all I can?"

    Yes, it's really frustrating to feel like you're only being given partial information. Hopefully that can stop happening for you!

  • kdot2003
    kdot2003 Member Posts: 143
    I am so sorry.  That is crap.

    I am so sorry.  That is crap.  I seriously look up to you and your attitude.  I hope to God its just the lymph nodes.  Either way its clear you have what it takes to survive.    Karen

  • MrsBD
    MrsBD Member Posts: 615 Member
    Roller Coaster

    Phrannie, not only are you amazing, but since he got you right into the ENT, your husband must be awesome as well! I hope you will be able to get going on a plan soon despite the confused information you've gotten. As wonderful as PET scans are, they can't differentiate very well between a little inflammation or a little cancer. I think our doctors try not to alarm us. As JCortney said, we have to tell them we're in the "need to know it all" camp. Prayers and hugs for you.

  • phrannie51
    phrannie51 Member Posts: 4,716
    I think this is how it might go....

    it's hard to tell because of the "possible" biopsy.  ENT said, if he doesn't see anything, then he's not going to biopsy it because it's been radiated and could be hard/long time healing.  So....I wake up from the dissection either with or without a biopsy....If I do have a biopsy, then I'll KNOW the sh** has hit the fan, and going to a large cancer center is my only way out of this mess. 

    It's like where to start?  Email MDA or SCCA and tell them what's going on...now?  Wait to see if I have a biopsy, and get the pathology back?  My head is going in circles....usually, my anxiety doesn't last this long....I've had good days in the last 3 weeks, too.....and maybe it's just because surgery is this week....and that's adding to the anxiety. 

    This neck dissection is another thread I'll be getting to....seems a lot of people here have had them....I kind of remember folks saying that was the easy part of treatment.

    p

  • ditto1
    ditto1 Member Posts: 660
    Hey P

    Last I checked cannot take a bus on a roller coaster, so 1st lets get you off of it.  Second I recently read on the sign outside our church "Worry is just Interest paid on a problem that is not due Yet...."  Ok enough cliche's, I would be a hypocrite if I told you not to worry.  I get nervous when were down to one roll of Charmin.  But as others have said you know so much more now than you (and I) did 3 years ago.  Draw up those memories and how you were tough enough to get thru it, and girl you had some tough times.  But you went from help me to How may I help You.  So Diane and I are praying for you and like you have said a million times It aint till it is.

    We all have your back. 

  • jtl
    jtl Member Posts: 456

    I think this is how it might go....

    it's hard to tell because of the "possible" biopsy.  ENT said, if he doesn't see anything, then he's not going to biopsy it because it's been radiated and could be hard/long time healing.  So....I wake up from the dissection either with or without a biopsy....If I do have a biopsy, then I'll KNOW the sh** has hit the fan, and going to a large cancer center is my only way out of this mess. 

    It's like where to start?  Email MDA or SCCA and tell them what's going on...now?  Wait to see if I have a biopsy, and get the pathology back?  My head is going in circles....usually, my anxiety doesn't last this long....I've had good days in the last 3 weeks, too.....and maybe it's just because surgery is this week....and that's adding to the anxiety. 

    This neck dissection is another thread I'll be getting to....seems a lot of people here have had them....I kind of remember folks saying that was the easy part of treatment.

    p

    I must be missing something

    First off I want you to know that like the others on the forum I wish you the best.  Having said that if something shows up on a PET scan even if it is not visually obvious why not take a small tissue sample.  He is in the neighborhood so to speak anyway.  I personally would want that done and if you have a question about the area healing ask your rad onc.  This is one of these things that if he doesn't exclude the possibility of a recurrence than you will wonder about it every day. It is a tendency for people to think that their doctors are the best but that is not always the case.  I just had bladder cancer surgery and the verdict on my new urologist is not in.  After 4 unrelated cancers in my life I no longer take any treatment or doc for granted. Do your own research and due dilegence, it will benefit you in the long run.  I don't have a problem with my local docs doing minor surgery and biopsies but if things move into another strata then I have and will seek out the best that I can afford.  You come across as a person who has given this consideration so you are already ahead of the average cancer patient.  Take care.

    John

  • jcortney
    jcortney Member Posts: 503

    I think this is how it might go....

    it's hard to tell because of the "possible" biopsy.  ENT said, if he doesn't see anything, then he's not going to biopsy it because it's been radiated and could be hard/long time healing.  So....I wake up from the dissection either with or without a biopsy....If I do have a biopsy, then I'll KNOW the sh** has hit the fan, and going to a large cancer center is my only way out of this mess. 

    It's like where to start?  Email MDA or SCCA and tell them what's going on...now?  Wait to see if I have a biopsy, and get the pathology back?  My head is going in circles....usually, my anxiety doesn't last this long....I've had good days in the last 3 weeks, too.....and maybe it's just because surgery is this week....and that's adding to the anxiety. 

    This neck dissection is another thread I'll be getting to....seems a lot of people here have had them....I kind of remember folks saying that was the easy part of treatment.

    p

    Let's kiss

    keep it simple stupid.

    just tell your doc if he sees ANY mass or swelling you want it biopsied. You said you have faith in his skills, then let him do his job. 2.7 is a VERY low number, could easily be nothing. 

    Joe

  • GavinP
    GavinP Member Posts: 118

    I think this is how it might go....

    it's hard to tell because of the "possible" biopsy.  ENT said, if he doesn't see anything, then he's not going to biopsy it because it's been radiated and could be hard/long time healing.  So....I wake up from the dissection either with or without a biopsy....If I do have a biopsy, then I'll KNOW the sh** has hit the fan, and going to a large cancer center is my only way out of this mess. 

    It's like where to start?  Email MDA or SCCA and tell them what's going on...now?  Wait to see if I have a biopsy, and get the pathology back?  My head is going in circles....usually, my anxiety doesn't last this long....I've had good days in the last 3 weeks, too.....and maybe it's just because surgery is this week....and that's adding to the anxiety. 

    This neck dissection is another thread I'll be getting to....seems a lot of people here have had them....I kind of remember folks saying that was the easy part of treatment.

    p

    Think I'm missing something...

    Hi Phrannie,

     

    I think I must be missing something. Is the neck dissection for a seperate cancer spot to the possible biopsy? Because I can't understand why you're having a dissection before they've confirmed cancer with biopsy?

     

    In terms of being "drip-fed" information I think you need to lay it out to you're specialist that you want to know everything, up front, good or bad. Contacting a specilaist cancer facility sounds reasonable as well.  

     

    Good luck.

  • hwt
    hwt Member Posts: 2,328 Member
    ditto1 said:

    Hey P

    Last I checked cannot take a bus on a roller coaster, so 1st lets get you off of it.  Second I recently read on the sign outside our church "Worry is just Interest paid on a problem that is not due Yet...."  Ok enough cliche's, I would be a hypocrite if I told you not to worry.  I get nervous when were down to one roll of Charmin.  But as others have said you know so much more now than you (and I) did 3 years ago.  Draw up those memories and how you were tough enough to get thru it, and girl you had some tough times.  But you went from help me to How may I help You.  So Diane and I are praying for you and like you have said a million times It aint till it is.

    We all have your back. 

    P

    Sorry you have these added worries. Don't be intimidated by the doc and keep asking questions until you are comfortable with the answers. 

  • phrannie51
    phrannie51 Member Posts: 4,716
    GavinP said:

    Think I'm missing something...

    Hi Phrannie,

     

    I think I must be missing something. Is the neck dissection for a seperate cancer spot to the possible biopsy? Because I can't understand why you're having a dissection before they've confirmed cancer with biopsy?

     

    In terms of being "drip-fed" information I think you need to lay it out to you're specialist that you want to know everything, up front, good or bad. Contacting a specilaist cancer facility sounds reasonable as well.  

     

    Good luck.

    Gavin...he did a needle biopsy

    of the lymph node, and it showed cancer cells....so we know they have to go.  But the PET scan also showed a spot in the nasopharynx that lit up slightly....that's the spot he didn't tell me about until after I heard it from the Oncologist. 

    I DO want a biopsy, dammit....if it is cancer then I won't be waiting for the next PET scan, three months after they radiate the collarbone area to find it out.

    You'd think HE'D want to know!

    p

  • Barbaraek
    Barbaraek Member Posts: 626

    Gavin...he did a needle biopsy

    of the lymph node, and it showed cancer cells....so we know they have to go.  But the PET scan also showed a spot in the nasopharynx that lit up slightly....that's the spot he didn't tell me about until after I heard it from the Oncologist. 

    I DO want a biopsy, dammit....if it is cancer then I won't be waiting for the next PET scan, three months after they radiate the collarbone area to find it out.

    You'd think HE'D want to know!

    p

    Phrannie

    I think a second opinion is a good idea, so what does it hurt to get that ball rolling? And, heck...you've been thru rads and chemo for NPC, I just fail to see how healing from a biopsy can be harder than that...but I'm a layperson. I would let the doc know that you want absolutely anything in the area that is suspicious to be biopsied. Who wants to be playing the "what if" game three months from now? Not you. I'm sure.

    I agree that you should speak candidly with your doc and let him know that you prefer to play with a full deck...no holding back information.

    More prayers coming your way for sure!

     Barbara

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi P

    Just remember no matter what you will be strong enough to overcome it again. There is a lot Doctors don’t tell us, why I am not sure because like you I want to know everything so that I can make the choice of my treatment.

     

    I will be keeping you in my prayers

    Tim

  • GavinP
    GavinP Member Posts: 118

    Gavin...he did a needle biopsy

    of the lymph node, and it showed cancer cells....so we know they have to go.  But the PET scan also showed a spot in the nasopharynx that lit up slightly....that's the spot he didn't tell me about until after I heard it from the Oncologist. 

    I DO want a biopsy, dammit....if it is cancer then I won't be waiting for the next PET scan, three months after they radiate the collarbone area to find it out.

    You'd think HE'D want to know!

    p

    I'm with you now....

    Right, I'm with you now. 

     

    I agree that the potential spot in nasophraynx should be biopsed... Generaly rule of thumb for Head and Neck cancer is if in doubt, biopsy - Especially with someone thats already had it.

     

    Of course, healing could be an issue in a site where you've had radiotherapy, but thats a small price to pay for peace of mind, IMO and the only way to truly tell if someone has cancer or not is through biopsy. 

  • lifeisDHA
    lifeisDHA Member Posts: 64
    Not being told of everthing up front is frustrating.

    it must be that the number 2.7 is too small. My boyfriend's lymph nodes had value 4.7. Though I think biopsy is necessary. Before my boyfriend had neck dissection the ENT surgeon told him he could wait and see or do the dissection. We asked what she would do if it's her she said neck dissection.  Better be on the safe side.

     

    I pray yours just scar tissue.

  • swopoe
    swopoe Member Posts: 492
    lifeisDHA said:

    Not being told of everthing up front is frustrating.

    it must be that the number 2.7 is too small. My boyfriend's lymph nodes had value 4.7. Though I think biopsy is necessary. Before my boyfriend had neck dissection the ENT surgeon told him he could wait and see or do the dissection. We asked what she would do if it's her she said neck dissection.  Better be on the safe side.

     

    I pray yours just scar tissue.

    What do the numbers

    What do the numbers mean...2.7?  4.7? I am new here and trying to understand. When my husband had his Cat scan last week the report said that 4 nodes might be reactive rather than metastatic. Said nothing about any other nodes. Doc did a neck dissection and took all of them out on right side anyway. Pathology report comes back Thursday. Sorry to go off topic. Wishing the best for you Phrannie. I would want all the information I could have too.

  • phrannie51
    phrannie51 Member Posts: 4,716
    swopoe said:

    What do the numbers

    What do the numbers mean...2.7?  4.7? I am new here and trying to understand. When my husband had his Cat scan last week the report said that 4 nodes might be reactive rather than metastatic. Said nothing about any other nodes. Doc did a neck dissection and took all of them out on right side anyway. Pathology report comes back Thursday. Sorry to go off topic. Wishing the best for you Phrannie. I would want all the information I could have too.

    Those are numbers

    from the PET scan, swopoe....uptake numbers, or basically how bright they lit up.  The brightness in my nodes were 5.....this spot behind my nose was 2.7....the light is caused by metabolic activity....the brighter the more activity, and the more chance of cancer in that place. 

    p