Neck/Chin Lymph Nodes - Leave in or Remove?

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Jaime61
Jaime61 Member Posts: 16 Member
in Head and Neck Cancer #1

Have radiation and chemo start up set for this Wed Nov 3....

Oncologist refered me to an ENT (to locate/size the C) while PET scans and appointments with Chemo, Nutritionist being set up and completed

Met with ENT last week....couldnt find the C location....he discussed removing the lymph nodes and while under do deeper investiagtion for location size of C

When I told him not sure there was time between then and the start of treatments .....he was visually taken back as that isnt his process/steps of going through the treatment....so he said that he was going to call the Oncologist....Radiation DR and discuss the steps....may delay chems/rads

He was back and forth about removing the lymph nodes but leaning towards removal...he said if he cant locate the C they will blast the Rads on both sides of the head from ears down ....he said it would be much more of a powerful treament ...which meant more damage!!.....yikes....

Anyone have the same experience?....cant locate the C?....I mean if one cant find it ....in PET scan or visual...has to be small??....after reading all the comments and side effects and non stop reading of information.....im also learning about treatments of more natural methods....looking at the many successes there ....

I will be discussing the stage and how fast moving is my C with the Docs.....I may delay the start while we/I reevaluate the treatment process.....arhhggggg.....just another day in paradise!!...lol...sometimes a dream sometimes a nightmare.....

 

Jaime

 

 

Comments

  • SuzJ
    SuzJ Member Posts: 427 Member
    edited November 2021 #2
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    PET scan

    should show everything, I am suprised it didn't.

    There are plus's and minuses, plus is if your lymph nodes did not light up like a christmas tree, don't mess with them. Minus is, he needs to look further if he can't find your cancer

  • Jaime61
    Jaime61 Member Posts: 16 Member
    #3
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    SuzJ

    Thanks

    The lymphs nodes lit up.....but not much else...the scan was reviewed with me...there was lite in my mouth but the Dr said it was from muscle movement from my swallowing....kinda strange....they didnt tell me not to swallow...I could have not swallowed for the duration of the scan to get a better reading....

    and thats what I thought...my C needs to be found.....

     

    Jaime

     

  • jerryob
    jerryob Member Posts: 9 Member
    #4
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    lymph Nodes-leave or remove

    I had a simiar issue where the PET scan did not definitively identtify the site of the cancer.  The PET scan showed a minor difference in actividity between the left and right tounsil, but not enough difference to made a determination of the site.  However, the swollen lymph node was on the left side under the jaw line (which had brought me to the ENT in the first place)  had been biopsied and was definitive for my diagnosis.  That inidicated that the cancer was somewhere adjacent, likely the left side tounsil or base of tounge.  My ENT looked for the cancer in the tounsils on that side.  He felt something on the tounsil on the left side and after removing the tounsel confirmed that.  I think he also did a few biopsies on the base of toungue.  He did not remove the involved lymph node.  I don't see how you could start treatment without identifying the site first.  How does the radiologist decide on the treatment field without a good idea of the site.  Are your involved lymph nodes on both sides of your head?

  • Logan51
    Logan51 Member Posts: 464 Member
    edited November 2021 #5
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    same with me

    I was "unknown Primary" with the surgical biopsy of the one lymph coming back Positive for Nasopharyngeal. ENT looked for a tumor during that Op.- no dice. Rad Dr. ordered him to do an 11th hour second biopsy in hopes of finding something he missed some 3 weeks later. Still nothing. Kept the nodes, and the Rads shrunk them back to where they did not protrude.

    Got 56 Gys above the chin/60 to upper neck/68 to lower neck, or throat. Zapped 20 places/session. And, concurrent Cisplatin and 5-FU, but unlike anyone else I know of on the Forum except one man who went thru tx some 30 years ago and spent 8 weeks in a Hospital. Full chemo was split into two 96-hour sessions carrying 2 pumps and the 2 bags of Chemo. Tough battle, got sick and spent 4 nights in a Hospital getting antibiotic drips in week #6, but it was smooth sailing the rest of the Rad sessions. 

    But, that was 13 years ago. Saliva never did come back like it should- like a mixture of mucous and saliva, always spitting to the degree I carry a spittoon when out and about in the car, and a little one with a lid in stores. Have been FT-dependent the last 27 months from Rad damage to the esophagus. Irony is that I spent over $12-K on tooth repair, which included 2 new Crowns and 3 root canals, and now I can't eat the traditional way.

    Returned to work a month after my last Rad session as a metalworking job shop Inspector, which required a lot of walking and very little sit down time. Took a couple weeks to get used-to. Couple months later was playing golf again, and eating whatever I wanted (why my esophagus gradually collapsed over time is a mystery). Retired from my job some 6 years later due to a spine problem unrelated to my C. 

    So, even if you are an unknown Primary, if I can make it thru said Rads (without a caregiver), so can you. 

  • BeagleDad
    BeagleDad Member Posts: 108 Member
    edited November 2021 #6
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    Since you asked for opinion ....

    And this is JUST opinion.

    After having gone through TORS to remove my tonsil and simuiltaneous radical neck dissectionto remove 11 lymph nodes prior to chemo/rads, I say "cut me, grab that crap, get it out of my body and throw it away"  The fewer cells in your neck, the less they have to radiate.  

    ANything you can do to lessen how many rads you need, in my opinion, is a good thing.  Surgery makes a scar, and causes some numbness.  Radiation kills things like salivary glands, muscle structure, taste buds ... and some of those muscles are pretty important like esophageal and swallowing-related.  

    For a long time I questioned my decision about my surgeries, but after finshing treatment and NOT experiencing half of what most of the folks here experience(d), I am completely glad I did.

    Swallowing issues are hard enough when you know they will go away after a few weeks post treatment .... I could not IMAGINE having to deal with them long-term.  

    One thing my radiation doctor noted to me was that "our" treatmewnt is one of the worst because we are dealing with very soft and moist tissue.  He pointed to his arm and said that if we radiated there I'd have some pain and burning, but I don't need to use that arm all day every day for my survival like I do my throat.  

    Jaime, I had a SIGNIFICANTLY "better" time through radiation than most folks on this forum.  I attribute that to the lower dose of radiation I had.  ANd I had a lower dose of radiation because I endured that surgery (the tonsil part was the hard part not the neck dissection).  The more of those cancer cells that go into the trash can at the hospital, the fewer they have to radiate.  

    It is your cancer and your choice and you are doing the right thing by gathering as much info as you can and  here and as you can see, even our experiences and advice runs the spectrum.  

    Good luck to you and prayers in this difficult decision.  Have you considered a different oncologist for a 2nd opinion?  Even if you have to self pay that, might be well worth your money.

    Don aka Beagledad

  • Jaime61
    Jaime61 Member Posts: 16 Member
    #7
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    Thanks All for the comments - and to clarify

    I skipped few tid bits of info ....brain moving faster than my typing fingers I guess....

    I have done the sonogram...inclusive...lumps are there! right side only...MRI confirmed lumps are there...inconclusive...gee thanks.....biopsies done...P16 staining with Naso Pharangeal posibility...referred back to Oncologist/ENT for confirmation/location....PET scan done ...nodes lite up....but nothing else is conclusive as far as location....

    just thinking logically....find the location ...size....operate if it makes sense/acess etc......then dial in treatment accordingly....rather than balst both sides of the head/neck ....hmmmm...but hey Im just a bussiness guy not a doctor

    thanks again for the comments

    Jaime

     

     

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    #8
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    PET scan Cannot always distinguish

    Pathological lymph nodes:: 

    PET cannot always distinguish between lymph nodes which are enlarged because of infoammation, infection, and even being Overworked becquse presence of cancer elsewhere but not yet malignant themselves.  There are several reasons they become enlarged and THE ONLY WAY, to find out if and which ones are actually Malignant is a Biopsy.

    He cannot depend on a scan to tell which ones are truly cancerous.

    I had 80 removed in Bilateral neck dissection ( that was apart from my Glossectomy, etc), 55 out on right and 25 out on Left. Of course, not all were malignant and my point is, the PET Could Not pinpoint which nodes were ACTUALLY malignant. Some were more Suspicious than others.

    Well, that's not accurate enough, see?? It takes a biopsy and Surgery to Remove them, and / or heavy dose radiation. I got BOTH.

    I'm a tiny female of 70.5 pounds... I was 64 pounds when I went through that 7+ hour surgery... I survived. 5 surgeons and my lead surgeon just e mailed me this morning.

    I'm still in the hospital with bacterial pneumonia ...having some trouble.

    Anyway, scans are not infallible and are not used to do a definitive diagnosis. " It ain't cancer until the Biopsy says it is" The Path report will tell the tale.

    ALSO, they Frequently do Neck Dissection as a Preventative, if they can determine you are at high risk for lymph node involvement. To lessen your chances later.

    Hoeever, there are 200 lymph nodes in the Neck.

    In the whole body there are @ 600 lymph nodes.

    I had 80 removed from my neck.  ( I have a large mass still in Right neck.I mean, inches across. Doesn't seem to be malignant, so we just watch it. My long hair covers it, but its a big ugly Mass!  I just ignore it)

    Crystal, tired of having 3 lines in me and ready to rip them out!! Waiting to get disconnected so I can take my  hot shower ...)

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