1st PET Scan Post Treatment - not NED

stevenpepe
stevenpepe Member Posts: 234
in Head and Neck Cancer #1

Well, 75 days post treatment and my first PET scan shows activity in a lymph node on the opposite side of my neck, where I had my first surgery to remove a cancerous node.

I also have Sarcoidosis. Doc says it's possible to be related to that. Either way, a biopsy tomorrow is in order. If it's cancer, back under the knife and possibly another round of radiation. I'm not sure if I can do this again. Cancer sucks.

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Comments

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #2
    Take one step at a time Steve

    I am sorry to read that you have issues at this stage of time after your fight and recovery. Please see what the Biopsy results are first, go from there. I had a different cancer less than one year out of treatments. It hit me harder than the original Base of Tongue cancer. Yes, I was under the knife again as you said. You can do this.

    My Best to You and Everyone Here

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    Be strong

    Steven,

    I am sorry to hear your report.  A number of members have had similar occurrences and it turns out good for them.  You can do it, just take it as it comes.

    Best of luck,

    Matt

  • swopoe
    swopoe Member Posts: 492
    #4
    Sorry to hear this Steven. I

    Sorry to hear this Steven. I will say a prayer for you tonight. Please keep us posted. Remember your strength no matter what.

  • armana
    armana Member Posts: 97 Member
    #5
    been there, done that

    Steven, I had the same experience. I had 6 1/2 weeks of radiation for stage 3 tonsil cancer and the 1st pet scan 4 months post radiation showed hyper activity with the involved lymph node. I got conflicting interperetaion from radiation oncologist and the radiologist, possibly scar tissue and possible cancer left respectively.

    I opted to wait another 5 months for a follow up pet scan which showed the hyperavtivity was all gone.

    I am sure you will have the same experience. You will be in my prayers.

    Arman

  • Grandmax4
    Grandmax4 Member Posts: 723
    #6
    Baby steps

    I have read, on this board, many cases of tests being false positive, when given too soon after treatment. I'm praying for you, here in Ohio, for strength,protection from the beast~~fight the good fight

  • cardoza33
    cardoza33 Member Posts: 81
    #7
    Hey there

    Hi Steven, 

    I am sorry to read your post.  I have been stressing out a couple days myself.  I have a spot in the back of my tongue, which ENT said yesterday doesn't look light cancer, but we are going to monitor it.  I am 8 months out of treatment, having had 2 clean scans and 1 clean exam.  But I just feel the anxiety of recurrence will never end.  I feel mentally exhausted.  I am thinking about you and hope the biopsy comes back negative.  Hang in there.  Cancer does suck.

     

  • RottiesMom
    RottiesMom Member Posts: 167
    #8
    Prayers

    Keeping you in my prayers...

  • Gypsy28
    Gypsy28 Member Posts: 69
    #9
    I'm sorry to hear this.

    I'm sorry to hear this. Hoping it's just a reactive node. Hang in there.

  • stevenpepe
    stevenpepe Member Posts: 234
    edited September 2016 #10
    Had the node biopsied

    Had the node biopsied yesterday and will have results Monday. PET results arrived in my web portal so I could read it. Says new right level 2 node metastisis. I'm not confident it's anything other than cancer.

  • MemphisTn
    MemphisTn Member Posts: 41
    #11
    Hee-bee Geebies

    Not making light of any situation, I absolutely understand the concern, Im positive everyone here does. I swore after my diagnosis I had cancer in my foot, lungs, eye, etc. You name it, I most likely told the Onc I had cancer there. No joke. He was very patient with me and kept reminding me it would be exceedingly rare that another tumor was present so close to my last scan (like a month) that I could actually feel. Doesn't mean it can't happen but I do feel a tad silly in retrospect saying I may have toe cancer...anyway, physical exams and future scans are your friend. I don't mean to start any dissent but I will say I trust a needle biopsy about as much as I trust Santa to bring me a million dollars this year. A surgical biopsy or gland/tissue removal followed by labs should be 'the defacto' standard for determination. I say that after a horrible biopsy experience in January came back normal followed by a cancer diagnosis in March once my saliva gland was removed and sent to lab. Not trying to scare anyone, just saying needle biopsies and imaging, in my opinion and experience, they can both be coolmpletey mis-leading if not wrong. Think of radiology imaging kind of like the ENT looking at your throat. Sure they can tell its irritated but with out a swab of throat material to culture, you won't know for sure if it's strep. Hope that made sense. Mostly I sincerely pray that it's nothing. I know this sounds odd, but even if it is positive, take some comfort in that it is in a treatable location. I'm just 3 weeks out from 35 rads and like most everyone I suspect, waiting to see if there is another shoe to drop. Gods will be done.

    Much love

    -PC

  • swopoe
    swopoe Member Posts: 492
    edited September 2016 #12
    stevenpepe said:

    Had the node biopsied

    Had the node biopsied yesterday and will have results Monday. PET results arrived in my web portal so I could read it. Says new right level 2 node metastisis. I'm not confident it's anything other than cancer.

    Argh, Steven. Sending all my

    Argh, Steven. Sending all my prayers for good biopsy results.

    We have a patient portal too, but they wont put scan results in there until the doctor talks to us first. I can't imagine reading the scan results on my own without talking to the doc. Did you call the doc after you read the results?

  • LiseA
    LiseA Member Posts: 266
    #13
    Oh Steven, I'm so sorry to

    Oh Steven, I'm so sorry to hear this.  Been thinking of you and wondering how you were doing.  I am 10 weeks out of rads, and dealing with the usual stuff that comes up. Going for my first checkup at MDA the second week in October.  Their plan is a CT Scan and not a Pet Scan because they said it could show activity when it fact its inflammation in the area. I hope yours is just that.  Also, I don't have any confidence in needle biopsies as mine came back negative, and even the Pet Scan was inconclusive, when in actuality, I did have cancer. I have had needle biopsies that came back positive in the past, and lo and behold, surgery and biopsies were negative for cancer.  I sincerely hope this is the case and it's not another round with the Deamon again.  I feel for you :-(.  Take care and lots of positive tboughts and prayers coming your way. 

  • MJG1
    MJG1 Member Posts: 137 Member
    #14
    Sorry to read this

    Steven, 

    Reading this makes me so sad for you.  Please stay positive and know that people are pulling for a positive outcome for you.

    Margi Greene, Wife of Dennis Greene who is currently traveling this awfully scary road,

  • stevenpepe
    stevenpepe Member Posts: 234
    #15
    swopoe said:

    Argh, Steven. Sending all my

    Argh, Steven. Sending all my prayers for good biopsy results.

    We have a patient portal too, but they wont put scan results in there until the doctor talks to us first. I can't imagine reading the scan results on my own without talking to the doc. Did you call the doc after you read the results?

    I met with my doctor first on

    I met with my doctor first on Monday. The results arrived in my portal on Wednesday. Thank you for the prayers!

  • stevenpepe
    stevenpepe Member Posts: 234
    edited September 2016 #16
    swopoe said:

    Argh, Steven. Sending all my

    Argh, Steven. Sending all my prayers for good biopsy results.

    We have a patient portal too, but they wont put scan results in there until the doctor talks to us first. I can't imagine reading the scan results on my own without talking to the doc. Did you call the doc after you read the results?

    I met with my doctor first on

    I met with my doctor first on Monday. The results arrived in my portal on Wednesday. Thank you for the prayers!

  • swopoe
    swopoe Member Posts: 492
    #17
    stevenpepe said:

    I met with my doctor first on

    I met with my doctor first on Monday. The results arrived in my portal on Wednesday. Thank you for the prayers!

    Ah, I got it. I was messed up

    Ah, I got it. I was messed up on the timeline. Still praying!

  • Fritz
    Fritz Member Posts: 106
    #18
    So Sorry.

    I hate to read this. Hoping that an early PET is providing a false reading.

    Hang in there!!

    Freddie

  • MrsBD
    MrsBD Member Posts: 617 Member
    edited September 2016 #19
    PET Scan

    Steven, I am sorry you didn't get the much desired 'all clear' on the first scan. My first scan still showed some activity in a different  area, and so did the second one three months later. It was determined to be inflammation and the next two scan were clear. I hope that will be the case with you. You are in my prayers. 

  • cardoza33
    cardoza33 Member Posts: 81
    #20
    Why scan so soon?

    I'm just curious why the scan is only 75 days out?  My oncologist said he would not do it until 3 months out due to the scan picking up false reading from healing, etc.  I hope that is what is going on Steven.  I feel for you over these few days.  The waiting and thinking sucks.....I pray for good results Monday!!

  • yensid683
    yensid683 Member Posts: 349
    edited September 2016 #21
    Been there - done that

    Stg IV-a base of tongue, induction chemo, concurrent chemo radiation and a PET scan 3 months after the last rad, at first the RO said that the scan looked good with minor uptake that they felt could just be monitored, though the tumor board recommended a selective neck dissection.  Had the surgery, pathology noted minor, weak, inactive disease.  Next PET 5 months later, my expectations were that it would be clear, not so - new uptake values and areas not previously seen on the last PET. 

    A second selective neck dissection, pathology showed ALL of the suspicious nodes to be simply scar tissue that was still healing. 

    I feel bad that you're going through this again, but there is the possibilty that the biopsy could come back negative.  After all, its not cancer until they say it is.

     

    Hang in there

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