Oscar Sierra

yensid683
yensid683 Member Posts: 349
in Head and Neck Cancer #1

Or in less polite circles "oh (expletive deleted)

I had my second post rads PET/CT yesterday and the results were not what I'd anticipated.  There is still a hot spot. 

The really odd part is that the same spot was seen on my first post rads PET last October.  At first they were going to take a 'wait and see' approach, thinking that it was likely scar tissue, but the tumor board recommended surgery, so two weeks after the PET, I had a selective neck dissection.  Pathology came back showing a 'few remnant cells' and described them as weak and dieing.  I evidently jumped the gun on NED as the new PET shows the exact same node lighting up.  All I can think of is that the surgeon missed the node, or at least I hope that is the case.

I have an appt with the ENT tomorrow and I'm hoping that this is simply minor, but there is that nagging voice that keeps you awake "what if it's not?" 

I see a number of potential options, none of which makes me all that confident. 

It could be that they read the same images from October, but the RO did say "except for positional differences..." so my pipe dream of a simple mistake seems fruitless.  The RO did say that he would recommend a more in depth procedure and he did say "modified radical dissection" and now I'm wondering what the outcome of that would be.  More extensive surgery, potential disabilities, diminished capacity, permanent loss of some functions (your mind goes to very dark places in the middle of the night).  Not looking forward to it at all.

It could be that this is a left over of the cellulitis and abscess that I had 6 weeks post op, but something tells me that it's not likely.

I suppose I could just do nothing, taking a 'wait and see' attitude, but I don't want that hanging over my head.

No easy choices

I've been feeling so good, great even in the last month or so.  I have my old energy back, I'm traveling for work again (back 6 months), my taste has recovered, saliva is starting up again, and my appetite woke up, so much so that I"m gaining weight.  I lost about 40 lbs through this journey but then again I was 40+ pounds overweight, so I'm back to rabbit food for lunch and I can actually EAT IT! 

I don't want to go back to square one so to speak.

It would be interesting to see if any of the rest of my H&N family have had or heard of similar experiences. 

Any thoughts?

 

Peter

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    I'm part of the less than polite circles....

    so will join you in the "oh ****" expression.  It's hard to to successfully comfort another in the dark of night (the hours when the head committee meets to drive a person crazy with the worst possible scenerios)....so will hope you are reading this in the light of day. 

    The RO said "except for positional differences"....lymph nodes aren't cemented in, and I would think they'd move around a little with changes of weight, radiation damage, etc...they won't move inches, but Dr.s' always talk in millimeters....which are darn small.  At this juncture (new news,  dark of night, worst possible scenerio's) you can't trust your feelings that it isn't reminents of the abcess or cellulitus....I'm a firm believer in gut feelings, but I don't allow myself to take them to heart until daylight. 

    I don't have any experience in any of this (except the fear)....but for now, I'm readjusting my pocket and putting you in. 

    p 

  • Ingrid K
    Ingrid K Member Posts: 813
    #3
    O.S. is right

    Hello Peter,

    Am I reading the post correctly in that you had a neck dissection in October ????  an d now they are talking about doing another one ?  you mean for the other side ?

    I am familiar with the neck dissection and recovery from that....it was way way easier than the radiation treatments were, so I would not let the thought of surgery stop me.

    However, I am not familiar with the need to do a second dissection.  Hopefully someone with more indepth first hand knowledge will chime in here soon.

    Try and not think worst case....I know it's not easy and we all do it.

    Maybe a 2nd opinion ?

    Wishing you well no matter what you decide to do.

     

  • katenorwood
    katenorwood Member Posts: 1,912
    #4
    Aggressive

    Hello Peter,

    I recently went through a similar situation in Dec.  My tumor board takes an extremely aggressive stance at anything that could possibly be a reoccurrance.  They did an extremely deep biopsy of the node butted up to my mastoid, and put in a long acting pain med.  We have different dx's.  But saying this from my experience, ask any and all questions you can think of.  I don't know if the wait and see approach is good or not.  I'm to the point where for me....yes this is what I'll be doing.  If your ENT is experienced with H/N cancers you'll get the answers you need.  Try not to think of the what if's until you have too !  (easier said than done)  And if you need to slay what's left of the dragon, you'll find the strenghth to do it, I promise you !  Keep us posted Peter, and I'll keep you tucked deep in the pocket for a good out come !   Katie

  • yensid683
    yensid683 Member Posts: 349
    #5
    Ingrid K said:

    O.S. is right

    Hello Peter,

    Am I reading the post correctly in that you had a neck dissection in October ????  an d now they are talking about doing another one ?  you mean for the other side ?

    I am familiar with the neck dissection and recovery from that....it was way way easier than the radiation treatments were, so I would not let the thought of surgery stop me.

    However, I am not familiar with the need to do a second dissection.  Hopefully someone with more indepth first hand knowledge will chime in here soon.

    Try and not think worst case....I know it's not easy and we all do it.

    Maybe a 2nd opinion ?

    Wishing you well no matter what you decide to do.

     

    Yep

    I had a selective neck dissection on the left side on October 16, 2012, and yes, there is a possibility that they're going to do a modified radical on the same side.  My original DX was SCC, BOT, primary tumor was 3 cm, left cervical lymph nodes involved, largest of which was 6 cm.  From what the RO said, this is the same bugger that was so large, and yes, they're talking about a modified radical on the same side.

    Recovery from the selective was fairly simple, it was outpatient surgery and I was able to go home the same day albiet with a huge wad of bandage wrapped around my neck and an open drain, but the healing was pretty quick.  Despite the tissues being irradiated, I felt normal in just a couple of weeks.  My surgeon was classy in that he did sub cutaneous sutures so there is no railroad tracks along the scar.  If you didn't know what to look for, you'd think it was simply a skin fold.

    I'm trying to put everything in a box and do the Ms. Scarlett response...."I'll think about that tomorrow".

    Time will tell.

     

  • yensid683
    yensid683 Member Posts: 349
    #6
    katenorwood said:

    Aggressive

    Hello Peter,

    I recently went through a similar situation in Dec.  My tumor board takes an extremely aggressive stance at anything that could possibly be a reoccurrance.  They did an extremely deep biopsy of the node butted up to my mastoid, and put in a long acting pain med.  We have different dx's.  But saying this from my experience, ask any and all questions you can think of.  I don't know if the wait and see approach is good or not.  I'm to the point where for me....yes this is what I'll be doing.  If your ENT is experienced with H/N cancers you'll get the answers you need.  Try not to think of the what if's until you have too !  (easier said than done)  And if you need to slay what's left of the dragon, you'll find the strenghth to do it, I promise you !  Keep us posted Peter, and I'll keep you tucked deep in the pocket for a good out come !   Katie

    Agressive Response

    Is what I pursued, my MO and RO both jumped hard on the original dx (stage IVa, HPV+) and the plan was for induction chemo, followed by rads/chemo, and then if there was any residual disease, surgery.  Induction lasted for one round (kidney complications) 33 rads, 7 erbitux and things looked good as I healed from the radiation 'treat'ments, and continue to do so.  I sometimes feel guilty to feel so good when so many other of our fellow warriors are hitting so many recovery issues.

    I have an appt with the ENT/surgeon tomorrow and the biopsy will be something we'll discuss.  He is very experienced with H&N and I trust his opinion.  He does not generally do needle biopsies, his experience is that there is often insufficient tissue for a good diagnosis.  (I asked when this all started close to a year ago).  My original biopsy was done under general anesthesia (thank god for good meds) and he did a punch biopsy of the tumor and surrounding tissues. 

    I have a bunch of options, doing nothing is one, as the hot spot did not change size over the last 5 months.  perhaps it is something benign, or it might be that they simply did not go deep enough to capture the little bugger.  Either way I'll have more information today after my RO calls and after I see the ENT tomorrow morning.

    Thanks for all the great wishes, nice to be in someone's pocket from time to time, especially when we battle the beast.  I'll update as I know anything.  My poor wife is just beside herself.

    Peter Smile

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #7
    Orange Strawberries

    Peter,

     

    You say you feel good and have few complaints.  That sounds like a sign of good times ahead to me. 

     

    I always have a hot spot in my rear door and my colonoscopy always revels “alls well”.  You are still in your first year, your body has taken a beating and your brain is working over time to bring all systems back on line.

     

    Try to relax (good luck) and not fret about the unknowns.  Your team will figure things out and hopefully send you back on your way down Recovery Lane

     

    Matt

  • yensid683
    yensid683 Member Posts: 349
    #8
    CivilMatt said:

    Orange Strawberries

    Peter,

     

    You say you feel good and have few complaints.  That sounds like a sign of good times ahead to me. 

     

    I always have a hot spot in my rear door and my colonoscopy always revels “alls well”.  You are still in your first year, your body has taken a beating and your brain is working over time to bring all systems back on line.

     

    Try to relax (good luck) and not fret about the unknowns.  Your team will figure things out and hopefully send you back on your way down Recovery Lane

     

    Matt

    Odd that you should say

    Orange Strawberries.  Just a month or two ago I could not eat either, too sour a taste and I had to have extra water to chew and swallow.  Now I can eat both without the need to sip water, and the tastes have improved, so I'm comfortable saying that saliva is slowly awakening.

    I am working to relax, take it one step at a time and not go to the worst case scenario.  I'm usually a 'glass half full' person so this is a different attitude for me.  My confidence was so shaken to hear the RO say 'no change'.  I had a chat with him today and there is no mistake, no error in the read, no impact from the abscess, so it will be up to my ENT tomorrow to hold my hand and tell me what we're going to do.

    Doing nothing is not an option, my RO said that at this point, it's curable, but it could become metastatic and non-curable without intervention, so I"m going to step into the ring and see what happens.

    It's great to vent and even better to get help from our group.

  • patricke
    patricke Member Posts: 570 Member
    #9
    OH X, ONE STEP AT A TIME

    Hey Peter, this new issue is bad news for sure, in that, no one wants to be in limbo about whether or not there is a beast guerrilla cell in hiding.  You just have to take it one step at a time, self-talk your way into remaining calm and sane, and once you have all of the information, do what needs to be done.  Congratulations on all of the progress that you have made, this is an unexpected detour, but not a derail of recovery.  Hang in there; keep it movin forward..............*

    PATRICK

  • yensid683
    yensid683 Member Posts: 349
    #10
    patricke said:

    OH X, ONE STEP AT A TIME

    Hey Peter, this new issue is bad news for sure, in that, no one wants to be in limbo about whether or not there is a beast guerrilla cell in hiding.  You just have to take it one step at a time, self-talk your way into remaining calm and sane, and once you have all of the information, do what needs to be done.  Congratulations on all of the progress that you have made, this is an unexpected detour, but not a derail of recovery.  Hang in there; keep it movin forward..............*

    PATRICK

    A journey of a thousand miles

    begins with one step, though at this point it's more like step 884,267....

    I intend to keep it moving forward, no matter what, Life is worth living.  The corny quote says that the brave die but once, the coward dies a million times. 

  • yensid683
    yensid683 Member Posts: 349
    #11
    UPDATE

    I saw my ENT today and the good news is that there is no evidence of the primary tumor (god I hate that scope snaking through my nose) and I'm doing well.

    The node is not exactly the same one though, the scan report notes that this one is in a different location and because it is somewhere near the thyroid cartilage, I have been referred to a head and neck specialist with the necessary skill set to address this.  I'm encouraged that my ENT recognizes that this needs a special touch, but also concerned that the specialist would see me almost immediately.  I have an 8:30 this coming Monday. 

    So, once again dear friends, into the breach!

    Thank you all for your patience and support, I feel so much better every time I share this with you and read your comments and suggestions.  While we all hate the reason that we joined this forum, I do love the people on here, even if they're only images on a screen.

    Peter

  • patricke
    patricke Member Posts: 570 Member
    #12
    yensid683 said:

    UPDATE

    I saw my ENT today and the good news is that there is no evidence of the primary tumor (god I hate that scope snaking through my nose) and I'm doing well.

    The node is not exactly the same one though, the scan report notes that this one is in a different location and because it is somewhere near the thyroid cartilage, I have been referred to a head and neck specialist with the necessary skill set to address this.  I'm encouraged that my ENT recognizes that this needs a special touch, but also concerned that the specialist would see me almost immediately.  I have an 8:30 this coming Monday. 

    So, once again dear friends, into the breach!

    Thank you all for your patience and support, I feel so much better every time I share this with you and read your comments and suggestions.  While we all hate the reason that we joined this forum, I do love the people on here, even if they're only images on a screen.

    Peter

    GOOD NEWS, BAD NEWS; IT'S ALWAYS SOMTHIN

    Yo Peter, so it's the good news/bad news situation, which is always better than the bad news/worse news situation.  The NEPT is indeed good news, your ENT referring you to a specialist, and the specialest seeing you sooner than later is more good news.  Maybe the specialist plays raquetball with your ENT, so he did him a solid by getting you in; thus, I wouldn't be pulling the alarm bell about that.  So, maybe get involved in some diversive activities this weekend, see some commedies, laugh a lot, and do what you do to have some fun.  Also, I suggest that you do a little conscious positive self-talk to smack down the negative trolls, and whatif imps that want to have their way with you; you show'em whose boss!

    PATRICK

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