I DESPARATELY NEED YOUR KNOWLEDGE - PLEASE HELP ME

debbiejeanne
debbiejeanne Member Posts: 3,102 Member
edited March 2014 in Head and Neck Cancer #1
Group, I just got results from a PET scan and need your help.
When the doctor gave me the results he said, "the scan shows activity but maybe its just leftover radiation." I find that hard to believe and feel he is sugar coating the results. My family is thinking maybe it is swelling, tissue, throat irriation. Do you believe any of that could be true? Please give me your honest opinions as you are the only ones who truly know what I'm going thru. I have to admit I am scared to death! I go back to the ENT tomorrow and I will worry myself sick until then.
By the way, I was diagnosed with vocal cord cancer in Aug., did 35 treatments of radiation, with the last treatment being on 10/22/09. Been recovering since. I greatly appreciate your reply postings.
Thank you all in advance for your help and knowledge!
God Bless,
Deb
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Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    PET Results
    At this point I wouldn't worry unnecessarily. There is varying opinions between my doctors on how soon to do a PET scan after treatment.

    My treatment was completed June 18th 2009. My oncologist setup and had me do a PET scan the latter part of August. For me the results were clean with no signs of activity or cancer.

    My ENT feels this is too soon having the chance of residual junk for better words left over from healing and the effects or damage incurred from radiation.

    I believe the "normal" period is probably somewhere between 4 - 6 months post treatment from most that I've read on this forum.

    So that being said, there probably is a good chance that what he is telling you is true and correct.

    John
  • carolinagirl67
    carolinagirl67 Member Posts: 153
    Debbie,
    I don't think your

    Debbie,

    I don't think your DR will sugar coat it. If they really think it is cancer then they usually come right out with it. My husband finished treatment 9/21/09 and had his first PET on 12/31/09. They found "spots" in the chest area and they did not sugar coat it. They scheduled a biopsy right away and said they thought they felt it was probably cancer, which it was and now we are doing more chemo. So if they feel it could be something else then it probably is. I know how you feel but really just try not to worry too much.

    Peace be with you!
    Donna
  • train-nut
    train-nut Member Posts: 101
    False Positive
    Deb,

    Two and a half years post-treatment and I still lite up the scan. All my docs now write it off as scar tissue. Your're fine. Enjoy your good health, Rich.
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Thank You
    John, Donna, Rich,
    Thank you so much for your replies!!!! What each of you said makes very good sense and I do feel better. The ENT scoped me today and he didn't see anything but said my throat is still very swollen. He also scheduled me for a biopsy for next Wednesday at 2:30. Sooo, I will still be a little worried until that is over but I also know that God always takes good care of me. It sure is great having friends here who know what I'm feeling and unstand what I'm asking. Thank you again!!!
    God Bless You,
    Debbie
  • Glenna M
    Glenna M Member Posts: 1,576

    Thank You
    John, Donna, Rich,
    Thank you so much for your replies!!!! What each of you said makes very good sense and I do feel better. The ENT scoped me today and he didn't see anything but said my throat is still very swollen. He also scheduled me for a biopsy for next Wednesday at 2:30. Sooo, I will still be a little worried until that is over but I also know that God always takes good care of me. It sure is great having friends here who know what I'm feeling and unstand what I'm asking. Thank you again!!!
    God Bless You,
    Debbie

    Similar results
    Hi Debbie, I also had SCC of the larynx (voice box) and finished my rads in August'09, after that I had targeted rads for the NSCLC in my left lung which I finished in Sept.'09. My ENT is still seeing swelling and some abnormalities on my larynx so he did another biopsy to make sure the cancer hadn't invaded the tissue of the larynx. Biopsy came back clean so I am still being monitored by my ENT each month. I would say the swelling after such a short period of time is normal.

    Please try not to worry too much (easier said than done :) until you get the biopsy results, I'm sure you will get good results and find out that it is only scar tissue.

    Take care and let us know what your tests results are.

    Glenna
  • micktissue
    micktissue Member Posts: 430
    Hi Debbie
    Your Dr has an obligation to tell you the truth. If it was dire news he'd need to tell you so you could prepare for that. His impression is just that. If this were me, I would call him and say to him exactly what you've said here. I do this often with my Drs and they reciprocate even though sometimes the news is not happy news, at least I know as much as they know.

    Stay fighting Debbie and keep advocating for yourself, that's all you can do. Do not fear the Drs and hold them accountable for what they're doing and how it is affecting you.

    NEVER GIVE UP, NEVER SURRENDER!

    Warmly,

    Mick
  • Landranger25
    Landranger25 Member Posts: 210 Member
    Glenna M said:

    Similar results
    Hi Debbie, I also had SCC of the larynx (voice box) and finished my rads in August'09, after that I had targeted rads for the NSCLC in my left lung which I finished in Sept.'09. My ENT is still seeing swelling and some abnormalities on my larynx so he did another biopsy to make sure the cancer hadn't invaded the tissue of the larynx. Biopsy came back clean so I am still being monitored by my ENT each month. I would say the swelling after such a short period of time is normal.

    Please try not to worry too much (easier said than done :) until you get the biopsy results, I'm sure you will get good results and find out that it is only scar tissue.

    Take care and let us know what your tests results are.

    Glenna

    Me too
    Hi Deb, I finished chemo and rads for BOT SCC back in October. Had first PET middle of December. Sure enough, PET showed uptake at BOT and in right tonsil. Needless to say, I was a little worked up. ENT can see nor feel anything, all looks good. CT scan normal as well. He confered with another Doc and together thay agreed that it was inflammation from rads. These areas surely received a huge amount as tumor on BOT was on right side. I am sure that my next PET will be better as this tissue will have had more time to recover. ENT appt. this morning and Doc said I am doing great. Once again, looks and feels good and he sees no reason to do anything except be vigilant. My oncologist says this of my ENT: He has never met anyone who hates cancer as much ENT does. I'm glad he's on my team. I'll go back again in month, do whatever he says. Another PET in April to be cautious. I have learned PET is not the be all do all but needs to be evaluated with all the other pieces of information that Doc's have gathered. Good luck tomorrow, keep us posted.

    Mike
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Thank You
    John, Donna, Rich,
    Thank you so much for your replies!!!! What each of you said makes very good sense and I do feel better. The ENT scoped me today and he didn't see anything but said my throat is still very swollen. He also scheduled me for a biopsy for next Wednesday at 2:30. Sooo, I will still be a little worried until that is over but I also know that God always takes good care of me. It sure is great having friends here who know what I'm feeling and unstand what I'm asking. Thank you again!!!
    God Bless You,
    Debbie

    ENT
    Debbie,

    Glenna brings up a good point I was going to mention and forgot. My ENT whom I feel saved my life at this point... looks at the PET as another tool, be it a very good tool. He feels that it's still good old hands on scoping, probing and personal observation that has the most creditability.

    So if you trust in your ENT as I do mine. He'll be upfront and tell you if there's something that needs addressed. After all, it doesn't do him any good nor you to sugar coat anything. If it's bad he'll need to get started with a plan of action as would you. Again I'm sure it's probably too early to tell much from the PET. The biopsy will confirm any suspicions. If it comes back as needing addressed, you and he will work out a plan of attack...that's worse case scenarion. Best case and hopefully, it'll just be residual junk from your prior treatment.

    It's perfectly normal to be concerned and worried. I'm several months out, but things that used to not bother me at all, something as minimal as a sore spot in my throat now worries me. I'm sure it will for awhile. But I try not to let it consume me as it easily could.

    Let us know how it turns out, we'll be here waiting for good news.

    John
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Debbie
    Like everyone is saying don’t get stressed out over it, I am 4 ½ years past my last treatment and every PET scan I do is also lit up in the same place. The Doctors at MD Anderson believe it to be left over scar tissue.

    Take Cane and God be with you tomorrow when you see your ENT
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Hondo said:

    Hi Debbie
    Like everyone is saying don’t get stressed out over it, I am 4 ½ years past my last treatment and every PET scan I do is also lit up in the same place. The Doctors at MD Anderson believe it to be left over scar tissue.

    Take Cane and God be with you tomorrow when you see your ENT

    thank you
    Thank you, Hondo!!!!!!!!!!!!!!!
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member

    thank you
    Thank you, Hondo!!!!!!!!!!!!!!!

    PS Results
    My first post-treatment PS was 3 months after, as your's was. Could be on the mark- too soon, and maybe your Dr. is right. My Oto said he wasn't concerned with the radiology findings- that something may have shown under my tongue. He didn't say anything about residual rads, but did say the area in question is an area of false positives. You mention the 35 rads- did you also get chemo?

    Debbie- rest easy. You've just completed treatment. The likelihood of anything showing so soon after treatment really is very small, and unlikely as a true positive. If anything, I would be suspect of the Drs., and PS "interpretation", if they say it is a definite true positive. The odds are overwhelming that anything which may have shown is nothing more than a false.

    Believe.

    kcass
  • frank10g
    frank10g Member Posts: 37
    Kent Cass said:

    PS Results
    My first post-treatment PS was 3 months after, as your's was. Could be on the mark- too soon, and maybe your Dr. is right. My Oto said he wasn't concerned with the radiology findings- that something may have shown under my tongue. He didn't say anything about residual rads, but did say the area in question is an area of false positives. You mention the 35 rads- did you also get chemo?

    Debbie- rest easy. You've just completed treatment. The likelihood of anything showing so soon after treatment really is very small, and unlikely as a true positive. If anything, I would be suspect of the Drs., and PS "interpretation", if they say it is a definite true positive. The odds are overwhelming that anything which may have shown is nothing more than a false.

    Believe.

    kcass

    Do I have to?
    friends,
    Do I have to have a PET scan after finishing treatment ? My doctor told me 6 weeks post treatment is the soonest I can have one but since it will give my body more radiation, a CT scan is probably enough. It is up to me. What is your advice?
    Thanks,
    Frank
  • micktissue
    micktissue Member Posts: 430
    frank10g said:

    Do I have to?
    friends,
    Do I have to have a PET scan after finishing treatment ? My doctor told me 6 weeks post treatment is the soonest I can have one but since it will give my body more radiation, a CT scan is probably enough. It is up to me. What is your advice?
    Thanks,
    Frank

    Hi Frank. My Doc says 12
    Hi Frank. My Doc says 12 weeks after last treatment is the soonest. 6 weeks seems way too soon by that standard. PET is the 'gold standard' for checking for mets, so not sure what your Doc is thinking.

    Best,

    Mick
  • Hondo
    Hondo Member Posts: 6,636 Member
    frank10g said:

    Do I have to?
    friends,
    Do I have to have a PET scan after finishing treatment ? My doctor told me 6 weeks post treatment is the soonest I can have one but since it will give my body more radiation, a CT scan is probably enough. It is up to me. What is your advice?
    Thanks,
    Frank

    Hi Frank


    I agree with Mick 6 weeks sounds way too soon your body is still cooking. I did a CT right after chemo was finish, but the PET was 12 weeks after.


    Take care my friend
  • Hondo
    Hondo Member Posts: 6,636 Member
    frank10g said:

    Do I have to?
    friends,
    Do I have to have a PET scan after finishing treatment ? My doctor told me 6 weeks post treatment is the soonest I can have one but since it will give my body more radiation, a CT scan is probably enough. It is up to me. What is your advice?
    Thanks,
    Frank

    Hi Frank


    I agree with Mick 6 weeks sounds way too soon your body is still cooking. I did a CT right after chemo was finish, but the PET was 12 weeks after.


    Take care my friend
  • fsdman
    fsdman Member Posts: 51
    Been there
    Deb,
    I hadNPC cancer. 3 months ago I got PET results(after 35 rad and 6 chemo ending 4/09)that showed a "lit up"lymph node on rt side. Drs werent concerned but scheduled another PET for Yesterday (Wed)Today I went to Oncologist and results were great! Lymph still lit but much less. We figure I ate too much sugary stuff before my first PET. This time I avoided carbs and sweets before the test.I know your fear. I only got the good news about 3 hours ago.PET scans areas which pick up glocuse(sugar). My whole family held there breath but my Drs were right-that being said,of course you will worry. Just dont let it control you.Best of luck.
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Kent Cass said:

    PS Results
    My first post-treatment PS was 3 months after, as your's was. Could be on the mark- too soon, and maybe your Dr. is right. My Oto said he wasn't concerned with the radiology findings- that something may have shown under my tongue. He didn't say anything about residual rads, but did say the area in question is an area of false positives. You mention the 35 rads- did you also get chemo?

    Debbie- rest easy. You've just completed treatment. The likelihood of anything showing so soon after treatment really is very small, and unlikely as a true positive. If anything, I would be suspect of the Drs., and PS "interpretation", if they say it is a definite true positive. The odds are overwhelming that anything which may have shown is nothing more than a false.

    Believe.

    kcass

    Kent, no, I didn't have chemo, thank God. You know what I don't understand, if the PS is so unreliable, why is it being used? I read on several different rooms here how wrong the scans are. Well, we're talking cancer so why are docs using a tool that can take our life if it is wrong????? I don't understand why anyone in power like a doc would use this scan.
    Anyway, Kent, thank you for your post. I love my new family so much!!!

    God Bless Us All,
    Debbie
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    fsdman said:

    Been there
    Deb,
    I hadNPC cancer. 3 months ago I got PET results(after 35 rad and 6 chemo ending 4/09)that showed a "lit up"lymph node on rt side. Drs werent concerned but scheduled another PET for Yesterday (Wed)Today I went to Oncologist and results were great! Lymph still lit but much less. We figure I ate too much sugary stuff before my first PET. This time I avoided carbs and sweets before the test.I know your fear. I only got the good news about 3 hours ago.PET scans areas which pick up glocuse(sugar). My whole family held there breath but my Drs were right-that being said,of course you will worry. Just dont let it control you.Best of luck.

    Thank you all and Scope Results
    fs, thank you for your reply. I just feel so much better after reading all the postings! You guys are truly my new family.
    Had my scope and the ENT didn't find anything that worried him but has scheduled a biopsy for next Wednesday at 2:30. I can honestly say that since I've read all the postings from you guys, I am not nearly worried as much. If I think about it too hard I get a little scared but before the postings, I was petrified!! I have also remembered how much God takes care of me and then I know, I will be fine.
    Thank you all again for helping me to feel better and look at this in a realistic manner!!!! You are all AWESOME!!!
    May God bless each and everyone of you!!!!!
    Debbie
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Kent, no, I didn't have chemo, thank God. You know what I don't understand, if the PS is so unreliable, why is it being used? I read on several different rooms here how wrong the scans are. Well, we're talking cancer so why are docs using a tool that can take our life if it is wrong????? I don't understand why anyone in power like a doc would use this scan.
    Anyway, Kent, thank you for your post. I love my new family so much!!!

    God Bless Us All,
    Debbie

    PET Reliability
    Debbie, I believe the PET to be highly reliable. Again, it's just another tool, it should be used with knowledge and experience. I don't think anything probably is as good as hands on experience and knowledge inconjunction with such tools. It does lite up primarily as a result of high celluar activity in the tissues (it measures and looks at a lot of things other than just glucose). The tracer they put in you effects many things.

    It lites up from high celluar activity which is characteristic of cancer. But it doesn't mean that everything that lites up is cancer. When I had my first, it lit up in the areas that I had cancer, but it also lit up in my lower stomach becasue I was having a bout with diverticulitus at that time also.

    But anyways, due to the damage by radiation and the healing process the PET can pick up all of that stuff going on as well. That's why it's better or more reliable given time to get done "cooking" as HONDO says. Your body is still undergoing changes, healing, damage, scarring, etc..

    From what my ENT says between the chemo and mainly the radiation, that my throat will have swelling, irritation, and a lot of diffrent changes for a good year after I finished the radiation.

    JG
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    fsdman said:

    Been there
    Deb,
    I hadNPC cancer. 3 months ago I got PET results(after 35 rad and 6 chemo ending 4/09)that showed a "lit up"lymph node on rt side. Drs werent concerned but scheduled another PET for Yesterday (Wed)Today I went to Oncologist and results were great! Lymph still lit but much less. We figure I ate too much sugary stuff before my first PET. This time I avoided carbs and sweets before the test.I know your fear. I only got the good news about 3 hours ago.PET scans areas which pick up glocuse(sugar). My whole family held there breath but my Drs were right-that being said,of course you will worry. Just dont let it control you.Best of luck.

    Very Happy for yoiu
    fs, I am very happy for you and the good news you got from the scan. I pray God will be with you and always give you good news. Take Care and God Bless.
    Debbie