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Thread: PET Scan Results Positive???

  1. #1
    Newbie New User
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    PET Scan Results Positive???

    I hope I'm posting in the right section, and I apologize if I'm not. I'm here because I feel as if my I'm going insane with having no one know what I'm going through. I'm hoping someone can give me some guidance.

    I went to my Dr. about 2.5-3 months ago because I had pain in my hips and back that was making it impossible to walk without the support of a cane. I was sent for a CT which resulted in why I'm here today. A (relatively) small mass appeared on my scan in my chest. I was immediately, and by immediately I mean two months later, sent to a thoracic surgeon. My doctor, who instead of delivering the news to me- delivered it to my mother first, decided it was the best option. When I asked if I should get a PET scan first, I was told No. They weren't worried about it, the surgeon would decide what was best. Figuring it was no big deal and that my Dr. had my best interest in mind, I went along. The surgeon, seeing my young age, decided that surgery would be too invasive if it was indeed nothing to worry about- so HE sent me for a PET scan. I just met with him Tuesday to get my results, which were not what I expected. He told me the area in my chest glowed on the PET scan, as well as a lymph node close to the site. When asked if this meant it WAS indeed cancerous, and also metastasized, He replied Yes. Within five minutes of this, he was telling me how he wanted to go in an cut out the site (Thymus area) and would TRY to find the lymph node but that I shouldn't worry about that if he couldn't. After laying out some other incredibly contradictory statements, I decided that even IF I were to get the surgery done- it wasn't going to be by him. I have an appointment with an Oncologist next week.

    So...that brings me to today. It's 2:30 Saturday morning, and I can't sleep. I feel like since this whole thing started I haven't gotten any answers, and instead ended up more confused in the first place. I'm scared, and feel as if I'm completely alone in my worries (as far as my Drs go, anyway). If the PET scan glows, especially in the areas that a suspicious mass is growing- does that HAVE to mean Cancer? I guess I'm asking, because the news was delivered by an untrustworthy source. My Doctors know it's growing because a CT scan in '09 was clear, one I had in '10 during a very complicated pregnancy showed a "spot" (but wasn't read until three weeks ago- because it had been confused for inflammation due to pregnancy???!!!), and now according to my last CT (04/2011) it's 3cmX2cm. I have no idea if it's grown since then (on the PET), because my surgeon couldn't answer that for me.

    I'm sorry for the long post. I guess I had a lot to write. My husband (who was in with me during my last appointment) tells me I'm going through denial, but I feel like with all the other screw ups in my recent medical history- this could surely be another one...right???

  2. #2
    Administrator Top User Kermica's Avatar
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    Hi NoahsMommy and welcome to the place no one wants to be but many come to value. First of all, congratulations on being in charge of your situation and taking control when you heard conflicting and disturbing information from your doctors. That was exactly the right thing to do, so well done on that score. This is the right Forum to use at this stage of your case as you don't know for sure what is going on so it makes more sense to be here than on one of the specific boards.

    We tell folks all the time on these boards that second opinions are one of the most useful things we have in our "toolbox". Given the information you have to date, I would suggest that you request a referral to a National Cancer Institute certified Cancer Center for a second opinion of your results (you can access a list of them here: http://cancercenters.cancer.gov/canc...ters-list.html). They should be willing to do this and they should be willing to provide all of your test results to the Center. If, for any reason, they are not willing to do so, you can still contact the center yourself but that is a trickier path to navigate. On the other hand, you can start by finding a doctor who will listen to you, participate with you in your case management and help you get to the bottom of things, locally. Still a second opinion, just a different path to the answer.

    All of that said, no, having a bright spot on your PET does NOT have to mean that you have cancer. Many people have come here suspecting that they had cancer, afraid and confused only to learn that they were dealing with something completely different. You are in a situation in which you know something is going on in your body but it is not at all clear what that thing is. It could or could not be cancer, more testing is required (has anyone mentioned a biopsy to you?). From your description, some kind of thyroid condition could be the cause. You could have an infection. You do have something going on and you do need answers so, as I said, find another doctor and good luck with your journey. keep us posted and we will try to help. There are a lot of knowledgeable people here who have been where you are now.

    Good health,

    kermica
    Last edited by Kermica; 05-28-2011 at 01:10 PM.
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 63
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09

    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.

    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.

    Significant progression detected in PET scan - December 2012

    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.

    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.

    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".

    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.

    June 2014 - started 2 year maintenance Rituxin, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.

    Remember the Rules!

  3. #3
    Newbie New User
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    Thank you so much, Kermica. Until your post, I had no idea you could get false positives on PET scans. I did quite a bit of "google-ing" and realized it happens all the time!!! I wasn't even made aware it was possible.

    As far as your question, yes. A biopsy was mentioned by my Primary Care, who then sent me to the thoracic surgeon. However, because of it's location (center of chest, behind breast bone- millimeters away from my Aorta) He decided that instead of biopsying it, he'd completely remove it. It was after the PET scan, and being told that a lymph node could possibly be involved (and that it was nothing to worry about) that I decided I'd need another Dr.'s opinion before they cut me open.

    Again, thank you for your reply. I'm sorry any of us are here, whether because we're scared for ourselves or a loved one. I truly feel Cancer's Cure is just waiting around the next corner of our Medical Exploration, and I will be excited to see it put an end to all our suffering. Until that day, we only have each other (and our families)- and I'm glad to have found "here".

  4. #4
    Administrator Top User Kermica's Avatar
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    You are welcome and I am glad I could help. You are in one of the really difficult times for anyone who suspects cancer - the waiting time. One of the impacts of thinking you might have cancer is a buildup of what we call "mental noise" - all the "what if" thinking that goes through your head and increases anxiety and stress.

    Most of us will tell you that the best thing you can do while you persue your diagnosis is to also take the time to do things that have nothing to do with your situation. Do the things you enjoy with your family, go to the beach, read a good book, garden - whatever it is that gives you personal peace. We also recommend that you limit the amount of internet searching you do. There is so much false information, rumor, fear mongoring and quackery out there that, especially when undiagnosed, it can do way more harm than good.

    Keep us posted and good luck, NoahsMommy, these boards exist for people like you.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 63
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09

    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.

    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.

    Significant progression detected in PET scan - December 2012

    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.

    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.

    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".

    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.

    June 2014 - started 2 year maintenance Rituxin, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.

    Remember the Rules!

  5. #5
    Experienced User
    Join Date
    Apr 2011
    Location
    west branch,mi
    Posts
    75
    i'm a veteran of 10 PET/CT scans now. i have had "hot spots" pop up here and there quite often. i had my lungs glow big time on one of em, but i wasnt even thinkin about the pneumonia i was gettin over, hence the reason the lungs glowed! good to see you gettin to an oncologist, and highly suggest what kermica suggested about an NCI certified one.
    stage 3c melanom diagnosis may 2006
    wide area excision and axillary surgery june 2006
    clinical trial w/ interferon sept 2006
    surgery to primary area and axillary to remove recurrance oct 2006
    IL-2 january 2007
    surgery to remove 3 tumors on back march 2007
    IL-2 june 2006( stopped due to risks outweighed benefits
    removal of tumor on upper left arm dec 2007
    costotransversectomy( remove part of t-7 vert) june 2008

  6. #6
    Administrator Top User pbj11's Avatar
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    May 2007
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    6,622
    Hi Noahsmommy,

    I did a little digging around on thymic conditions and it appears that surgery to remove it is a fairly normal approach. Looks like to get the biopsy, it's best to remove the entire thymus and they also have the chance to look at the entire area to determine any spread. The PET scan is dependent usually on the level of the SUV for the hot spot. Above a certain number, it is more indicative of a malignancy than irritation or infection. It's not fool proof, but pretty good indicator to take the next step. Nothing but a biopsy can give you a definitive diagnosis.

    Never hesitate to get a second opinion. These are built in to most insurance coverage these days.

    I'm sure you are in shock. Most people are and I dearly hope this isn't cancer for you. Best to move forward to know, rather than to wait and worry. Is there a chance they can do VATS surgery in this situation? I don't know if it's possible, but it's far less invasive.

    I'm sorry you've had to find us, but we are here with whatever information we can provide as laypeople, a lot of support, and understanding.

    God bless,
    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

 
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