Post chemo PET/CT scan

deanna14
deanna14 Member Posts: 732
edited March 2014 in Uterine/Endometrial Cancer #1
Well, I had my end of treatment PET/CT scan last Wednesday and a follow up appt. with my gyn/onc today. There are 2 suspicious periaortic lymph nodes found. They were not there on the CT scan that I had less than 3 months ago. I am scheduled to have a CT guided biopsy on Thursay. I am sad, mad and scared out of my mind!! It has been less then 1 month since my last chemo.... how can this be happening??!! Doc says it might be something else, but more than likely it is the cancer. I just can't believe that this is happening.... I HATE CANCER!!!!!!!!!!!!!!!
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Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #2
    NO! NO! NO! NO! NO! It will NOT be cancer!! (((((Deanna)))))
    Oh, Deanna, this just has to turn out to be nothing! You just came out of chemo; it's waaaaaaay too soon for anything to be making mischief! I'd be more afraid for you if 6 months had come and gone, but surely nothing could be happening this soon after chemo. This just has to be one of those things where you look back and say "I was sooooo scared and then it turned out to be nothing." ((((((((Deanna))))))))) I'm sooooooo sorry you are going through this

    I'm not sure what or even where 'suspicious periaortic lymph nodes' are. Where will the biopsy be, and how invasive a procedure is that?

    I've never had a PET-scan, and now I am not so sure I want one. Ignorance is truly bliss apparently. I was just popping in to post (primarily to YOU) that I broke the rules and COLORED my chemo crewcut with a 'rinse' that washes out in about 3 weeks. Still a crewcut, but now an AUBURN crewcut. Kinda seems lame now that I was so excited. BIG HUGS, Deanna, big big hugs.
  • kkstef
    kkstef Member Posts: 688 Member
    #3
    Oh, NO!!
    Deanna....I can't even imagine the anguish you must be experiencing. I am praying that is will turn out to be "false alarm" but know the thoughts that must be going through you head. Will be thinking of you and sending very positive vibrations..... You have been through ENOUGH.
  • thank you
    thank you Member Posts: 77
    #4
    PET scan can be false positive
    Please, don't forget my mom's story. She had an MRI and PET scan showing suspicious mass, had surgery and turned out to be just inflammation. These false alarms DO HAPPEN very frequently.
    You will be posting wonderful news in a few days, I KNOW IT!!!

    We are all with you.
    Chrysoula
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #5
    Deanna so sorry to hear your news
    I can understand your feelings. It must be scary to get that news. I pray that it is just inflammation. I had the CT guided aspiration of the fluid in my abdomen. I was hoping for conscious sedation for the procedure. But all they used was local anesthetic. It did burn when he put the lidocaine in deeper, but just briefly. NOthing else bothered me. There was a nurse I knew with me which helped. She said she could give me something IV if I was uncomfortable. I worried about the procedure, but it was not so bad. Think positive. You will definitely get some extra prayers. In peace and caring. HUGS to you.
  • Auntie Shelly
    Auntie Shelly Member Posts: 10
    #6
    Sending good thoughts
    I'm with you.... I HATE CANCER TOO! Sending good thoughts and prayers your way!
  • Teresa 61
    Teresa 61 Member Posts: 84 Member
    #7
    Auntie Shelly said:

    Sending good thoughts
    I'm with you.... I HATE CANCER TOO! Sending good thoughts and prayers your way!

    Deanna
    I must of read and reread your post 5 times to make sure I was comprehending what you wrote. My heart feels so heavy, will say special prayers for you. Hugs, Teresa
  • deanna14
    deanna14 Member Posts: 732
    #8
    Teresa 61 said:

    Deanna
    I must of read and reread your post 5 times to make sure I was comprehending what you wrote. My heart feels so heavy, will say special prayers for you. Hugs, Teresa

    Thanks for the support!
    I hope I didn't upset or bring anyone down, but I knew I could come here and vent my feelings. Thanks for always being here and being supportive.

    The peri aortic lymph nodes surround the aorta, above the belly button. If I know Linda, you have already done your research and can probably teach me more than my doctor could yesterday! LOL. I didn't hear much of what he said after he told me the 2 lymph nodes lit up on the scans.
    I am sure the biopsy on Thursday will be like the procedure Ro described. Sounds kind of painful, maybe I can talk them into some Valium or something. I'm surprised my doctor didn't tranquilize me in the office yesterday. I sort of had a meltdown! My whole body went numb, like the blood rushed out of my arms and legs. I nearly passed out! I never imagined that it could/would come back so quickly. I just hope and pray that it is not the cancer and just inflammation!
    Thank you all for the thoughts and prayers.
  • pjba11
    pjba11 Member Posts: 188
    #9
    numb too
    Can't find the words to try to calm and help you. I remember how hard it was to sit and wait in the Dr office for the results of the first few scans. I felt like my heart was hammering right out of my body... now you have had to experience bad news so soon.... the anxiety of tests and more waiting for results. It is so hard to focus on anything lighter, but know that you are in HIS care. Remember when it was the worst for me? I asked if only I could be here for my little girl... then I HEARD the three words that will always be first in my mind when in doubt.... "AND YOU SHALL." Deanna this is probably the hardest part of your journey please know you do have HIM and us to hold you and carry you. I pray this is part of the false postitives these PET scans are so famous for. You are ready to beat this. Love, hugs, and HOPE.
  • bonniesue
    bonniesue Member Posts: 124 Member
    #10
    deanna
    Deanna, my prayers are with you. There can be scar tissue from radiation and surgery so just thinking how much you have been through and letting you know you are in my thoughts and looking at this as a be safe type of deal.
  • shortmarge
    shortmarge Member Posts: 291
    #11
    bonniesue said:

    deanna
    Deanna, my prayers are with you. There can be scar tissue from radiation and surgery so just thinking how much you have been through and letting you know you are in my thoughts and looking at this as a be safe type of deal.

    Deanna
    I will be praying that this is nothing. I HATE CANCER TOO!!!!!!

    Many, many, many cyber hugs.

    MIND, BODY AND SOUL!

    Hugs.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #12
    Deanna: Do you feel more hopeful & in control today?
    You're right; you know me so well; I researched all I could find on computer-guided CT biopsies and about the lymph node system. And I thought of you all evening, and the points made in the other posts from the community here have comforted ME, and so I hope they have also re-ignited that little flicker of hope I know never goes out in your heart into something warming and sustaining for the days ahead of waiting.

    My oncologist said that he strongly discourages the use of PET-scans for uterine cancer monitoring because of the high number of false-positives, higher than he finds acceptable for reliable diagnosis. I have always wanted one anyway, but not so much now that I see and relate to the agony that your PET results are putting you through. (I read on the Ovarian Cancer Board about the size of the grid used even for the CT-scans, and there is actually some rationale in using the .5cm (CM) grid for that same type of reasoning, since the tiny "mm" nodules like the one that showed up in my lung with that super-fine CT-scan grid are so often NOT cancer and cause unproductive worry and even unnecessary treatments.)

    False positives are as terrifying as a real diagnosis. ((((Deanna))))). I really do believe that this is a false positive for you, Deanna. It's just too soon after chemo for anything to be happening, and you had all that pelvic radiation that surely zapped the heck out of anything lingering in those lymph nodes. It's probably imflamation or scar tissue from the radiation that's flared up because your immunity was beaten down in chemo, something like that. I know that you will reach down deep and find that calm place. You are a strong woman.
  • bella09
    bella09 Member Posts: 37 Member
    #13
    Deanna Post chemo/pet scan
    I am sorry for your news. I am also praying that it is a false/positive result. Linda had stated that it is too soon for anything to show up this early after treatment, and I pray that is the case with you. Think positive that you will have good news on Thursday. You are in my prayers. I also hate CANCER.

    Jean
  • deanna14
    deanna14 Member Posts: 732
    #14
    lindaprocopio said:

    Deanna: Do you feel more hopeful & in control today?
    You're right; you know me so well; I researched all I could find on computer-guided CT biopsies and about the lymph node system. And I thought of you all evening, and the points made in the other posts from the community here have comforted ME, and so I hope they have also re-ignited that little flicker of hope I know never goes out in your heart into something warming and sustaining for the days ahead of waiting.

    My oncologist said that he strongly discourages the use of PET-scans for uterine cancer monitoring because of the high number of false-positives, higher than he finds acceptable for reliable diagnosis. I have always wanted one anyway, but not so much now that I see and relate to the agony that your PET results are putting you through. (I read on the Ovarian Cancer Board about the size of the grid used even for the CT-scans, and there is actually some rationale in using the .5cm (CM) grid for that same type of reasoning, since the tiny "mm" nodules like the one that showed up in my lung with that super-fine CT-scan grid are so often NOT cancer and cause unproductive worry and even unnecessary treatments.)

    False positives are as terrifying as a real diagnosis. ((((Deanna))))). I really do believe that this is a false positive for you, Deanna. It's just too soon after chemo for anything to be happening, and you had all that pelvic radiation that surely zapped the heck out of anything lingering in those lymph nodes. It's probably imflamation or scar tissue from the radiation that's flared up because your immunity was beaten down in chemo, something like that. I know that you will reach down deep and find that calm place. You are a strong woman.

    I do.
    Yesterday was such a shot and my mind and body were numb with fear. I will get through this no matter what the results. I too am praying for the false positive result for both of us. I know you have several more weeks before your scan, but I hope and pray that the "nodules" on your lungs are nothing as they keep telling you.
    We can never give up that glimmer of hope. I believe that we are going to beat this. I believe that the Lord is walking with us on this journey and carrying us through during the times that we need him to. I know that he has a plan for our lives and I choose to believe that our work here on earth is not complete.
    Thank you again for being there and the encouragement you all give.
    Hugs and prayers,
    Deanna
  • thank you
    thank you Member Posts: 77
    #15
    lindaprocopio said:

    Deanna: Do you feel more hopeful & in control today?
    You're right; you know me so well; I researched all I could find on computer-guided CT biopsies and about the lymph node system. And I thought of you all evening, and the points made in the other posts from the community here have comforted ME, and so I hope they have also re-ignited that little flicker of hope I know never goes out in your heart into something warming and sustaining for the days ahead of waiting.

    My oncologist said that he strongly discourages the use of PET-scans for uterine cancer monitoring because of the high number of false-positives, higher than he finds acceptable for reliable diagnosis. I have always wanted one anyway, but not so much now that I see and relate to the agony that your PET results are putting you through. (I read on the Ovarian Cancer Board about the size of the grid used even for the CT-scans, and there is actually some rationale in using the .5cm (CM) grid for that same type of reasoning, since the tiny "mm" nodules like the one that showed up in my lung with that super-fine CT-scan grid are so often NOT cancer and cause unproductive worry and even unnecessary treatments.)

    False positives are as terrifying as a real diagnosis. ((((Deanna))))). I really do believe that this is a false positive for you, Deanna. It's just too soon after chemo for anything to be happening, and you had all that pelvic radiation that surely zapped the heck out of anything lingering in those lymph nodes. It's probably imflamation or scar tissue from the radiation that's flared up because your immunity was beaten down in chemo, something like that. I know that you will reach down deep and find that calm place. You are a strong woman.

    about PET scan etc...
    oncologist in Boston who is specialized in uterine cancer is AGAINST any imaging after treatment, unless there are symtpoms. This is what he recommended for my mom. I did not listen, and she had MRI, then PET scan, then surgery... only to find that she had scar tissue. I still don't know if I did right or wrong. This finding really hit her hard as she thought she had recurrence. Now it will take time for her to find again psychological balance... On the other hand, IF she had local recurrence detected without symtpoms she would have a good chance for cure....
    So, I have no idea what to say. I think its worth the anxiety if you have the oportunity to fight. But then can you do that every 3 months? What if each time something is found?
    I don't know.... I would like to hear your thoughts
  • Katrinka123
    Katrinka123 Member Posts: 51
    #16
    thinking of you!
    I am going to just believe that this is a false positive of some sort. Prayers for lots of strength for you while you wait!

    -Kat
  • bonniesue
    bonniesue Member Posts: 124 Member
    #17
    deanna14 said:

    I do.
    Yesterday was such a shot and my mind and body were numb with fear. I will get through this no matter what the results. I too am praying for the false positive result for both of us. I know you have several more weeks before your scan, but I hope and pray that the "nodules" on your lungs are nothing as they keep telling you.
    We can never give up that glimmer of hope. I believe that we are going to beat this. I believe that the Lord is walking with us on this journey and carrying us through during the times that we need him to. I know that he has a plan for our lives and I choose to believe that our work here on earth is not complete.
    Thank you again for being there and the encouragement you all give.
    Hugs and prayers,
    Deanna

    pet ct
    Deanna, As an aside a radiologist friend of mine says that the most sensitive is a PET/CT overlay is more sensitive than just a pet and also the risk of scar tissue showing up as a false positive done close to radx and or chemo and or surgery. Prayers for you.
  • Songflower
    Songflower Member Posts: 608
    #18
    deanna14 said:

    I do.
    Yesterday was such a shot and my mind and body were numb with fear. I will get through this no matter what the results. I too am praying for the false positive result for both of us. I know you have several more weeks before your scan, but I hope and pray that the "nodules" on your lungs are nothing as they keep telling you.
    We can never give up that glimmer of hope. I believe that we are going to beat this. I believe that the Lord is walking with us on this journey and carrying us through during the times that we need him to. I know that he has a plan for our lives and I choose to believe that our work here on earth is not complete.
    Thank you again for being there and the encouragement you all give.
    Hugs and prayers,
    Deanna

    My Heart is with YOU
    I can't believe sometimes what we go through! when I had breast cancer they thought I had metastasis in the back. It turned out to be arthritis. That was ten years ago. Tests are very imperfect. You are in my heart.
  • nursey420
    nursey420 Member Posts: 52 Member
    #19
    Katrinka123 said:

    thinking of you!
    I am going to just believe that this is a false positive of some sort. Prayers for lots of strength for you while you wait!

    -Kat

    So Sorry
    but there are lots of false positive so we will just say our prayer that is what you have Keep us updated
    Take care Lisa
  • deanna14
    deanna14 Member Posts: 732
    #20
    bonniesue said:

    pet ct
    Deanna, As an aside a radiologist friend of mine says that the most sensitive is a PET/CT overlay is more sensitive than just a pet and also the risk of scar tissue showing up as a false positive done close to radx and or chemo and or surgery. Prayers for you.

    I think that is what they did
    I think they did a PET/CT overlay. My last chemo was on June 10th, but my last radiation was in December 2008 and my surgery was in September, 2008.
    Thank you for sharing what your friend told you... I am praying so hard that it is just something like that! It is too scary to think it is a reoccurance already! I will fight it if I have to, but I'm trying not to get too hyped up until we find out the biopsy results.
    Thank you for the prayers.
    Prayers and Hugs to you too!
  • deanna14
    deanna14 Member Posts: 732
    #21
    thank you said:

    about PET scan etc...
    oncologist in Boston who is specialized in uterine cancer is AGAINST any imaging after treatment, unless there are symtpoms. This is what he recommended for my mom. I did not listen, and she had MRI, then PET scan, then surgery... only to find that she had scar tissue. I still don't know if I did right or wrong. This finding really hit her hard as she thought she had recurrence. Now it will take time for her to find again psychological balance... On the other hand, IF she had local recurrence detected without symtpoms she would have a good chance for cure....
    So, I have no idea what to say. I think its worth the anxiety if you have the oportunity to fight. But then can you do that every 3 months? What if each time something is found?
    I don't know.... I would like to hear your thoughts

    I think I would rather have the scan
    I thing I would rather risk the anxiety and the biopsy to find it is false positive. Because if it is positive, I know that it was not there when I had my last CT 7 or 8 weeks ago. The sooner it is found, the better chance I have of successfully fighting it... right?

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