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Pet Scan Reults.... help please?

Rudy675
Posts: 3
Joined: May 2018

Good day. I had a PET/CT scan and I am waiting to have a follow up appointment with my onocologist.  I have a copy of the test results.  I was wondering if someone would be kind enough to help me interpret the results.  I'd rather goto the appointemnt prepared rather than be blindsided with results.  After all, knowedge is power, right?

 

BACKGROUND:    Ive had moderate to sever stomach pain (right quadrent).  The pain seesm to rotate locations, sometimes lower right, other times upper right, still other times somewhere in the middle.  The first trip to ER the pain was lower right, I though it was my appendix.  After a CT scan, all results were negative.  Was told if pain returns, come back to ER.  Two weeks later pain was a 9 on a scale of 1 to 10.  When I went to ER this time, they did a CT scan with contrast.  Againn, they found nothing to cause my pain, but incidently found a 2mm x 4.5mm mass, which i was told was thougth to be an enlarge lymph node, then sent home with instructions to get a lower and uppper scope.  Three days later the pain was so intense, it woke me from my sleep.  Went back to ER, the did admit me this time, they compaired CT scans and noticed the 1st scan did not show the mass.  Was told I have lymphoma.  Then a few hours later an onocolgist, told me that the mass was there before, it was just hidden by on the rings of the small intestines.  He stated I had a carcinoid, that is sitting 4" deep in my abdomen, and is not in my intestines, rather my small intestines are wraped around the mass.  To be sure, they did upper and lower GI scan, both were negative for tumors.  A few days later I had the PET/CT scan.  Here are the results.....

 

RESULTS:     The central mesenteric mas that was noted on the recent CT is redemonstrated on this exam. The mass is FDG-avid with an SUV uptake of 4.8.  Several satellite nodules that were seen on prior CT are redemonstrated.  They are not well assessed for FDG uptake.  The degree of uptake is suspicious for a malignant mass, such as lymphoma or metatatic disease. A benign, but locally aggressive tumor, such as desmoid tumor, could also be considered, although these are gnerally more indolent and have a slightly lower degree of FDG uptake.

 

I assume all that means I have cancer.  Am I correct?  I find a lot of info on lymphoma, but can not find anything about metatatic disease.     Could someone please, assist me in decipering??

Thank you so much for your time and efforts!!!!

PBL
Posts: 140
Joined: Jul 2016

Hi Rudy,

... and sorry for your concern. 

I do hope the wait to your follow-up appointment is not too long, as all of us here know how uncomfortable it is to wait in uncertainty. However, only your doctor who has examined you, taken your case history and has the full picture can tell you for sure what you are facing. This is a patient forum, and our personal experience of lymphoma and/or other cancers cannot replace a bona fide medical degree.

A couple of remarks though: Based on the information you have shared, the tests you have undergone have not yet excluded the possibility of a benign tumor. Also, the tumor size seems quite small, and its glucose avidity is quite moderate. If at all lymphoma, it is likely to be an indolent (i.e., slow-growing) type.  If such be the case - and although no one wants to hear the dread C-word, it is not the worst thing that could happen to you.

You seem to have been told all sorts of things... Truth be told, only a biopsy can help your medical team ascertain the nature of you tumor. So, since you want to be prepared, your next step is likely going to be a biopsy. But please keep in mind that this is not a patient-doctor war; your doctor is on your side, and knowledge in your present situation, is not to be interpreted as power against those with the actual knowledge - maybe only against the flow of your own emotions.

Wishing you all the patience befitting your present situation, and the mildest possible diagnosis.

Do keep us posted.

PBL

 

Scubamom for two
Posts: 6
Joined: Apr 2018

Greetings Rudy,

I completely agree with what PBL has already written.  Please don't overly worry as it isn't the big C until a biopsy verifies it as such.  Ialso hope for you to receive the best news possible under your circumstances.  For me, I was given a few different unofficial diagnoses from medical professionals before getting to the correct one and then starting the best course of treatment.  Getting this type of diagnosis is life altering, but it is so important to get all the proper tests completed, especially if it is a Lymphoma as there are many sub-types and the treatment and prognosis varies greatly depending upon the type and individual circumstances.  As PBL remined us, we are patients, not doctors here on this forum, but I do think your PET-CT report was referencing the possibility of a Metastatic disease, which just means that IF it is cancer, it MAY have metastisized-spread from an initial or primary site to different or secondary sites.  Again, I am not a Dr., but the metabolic activity reported on your PET-CT is pretty low, suggesting there is not aggressive activity going on there.  Mine were in the 17 to 20 range prior to treatment. 

The very best advice I received last summer when facing the possibility of a Cancer diagnosis was to seek a second or independent diagnosis at a large, reputable center/teaching hospital.  I wound up traveling to MD Anderson and they saved my life!  My local team did not quite get my Non Hodgkin's Lymphoma diagnosis right and offered a standard treatment that was not the best one for type of Lymphoma I was eventually diagnosed with.  The local folks diagnosed me with an indolent (slow-growing) Lymphoma when in actuality it had already transformed to a very aggressive form.  I am currently in Remission and hope to remain there!  Hang in there and please wait until all the diagnostic info is completed and the Dr. can explain it all.

Sincerely,

Scubamom for two

Rudy675
Posts: 3
Joined: May 2018

Thank you both so much for your extremely kind and caring words and thoughts  I do realize, there is a chance that I am, or will very soon, overreact    My dad was just ( last week) diagnosed with pancreatic cancer   So, I'm a little stressed and worried for him.  I know the C-word isn't the worst thing to hear or have.  Lol.. after all, I could still be married to my first wife . Seriously though,  I am scared and i assume that's normal.  I know even if it is lymphoma  it is very treatable.  Thank  you both so very much for your kindness.  

   I did meet with oncologists, today.  He refused to say that I have the c-word, but kept bringing the conversation back to lymphoma. He did toich upon a carcinoid and Desmoid tumor, said it's not likely.  He stated the tumor location, if you can imagine this... small intestines being a ball of yarn.   Somewhere in that ball of yarn in the mass.  He will schedule me a ct guided biopsy and then will gave to wait two weeks for results.... sigh.   

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2864
Joined: May 2012

Welcome, Rudy.

Your oncologist is giving an educated guess at this point. Some doctors will do this more openly with a patient than will others.  But his statement of the mass probably being lymphoma for now is an educated guess.  It is correct to do the biopsy.  Results don't usually take two weeks; they are telling you to plan on waiting longer than they anticipate it taking, just to keep you off the phone in the interum.

The doctor may well be right, nonetheless. When in 2009 a surgeon first saw the CT that suggested I had lymphoma, he said "I'm not an oncologist, although I operate on a lot ofcancer patients, and only a biopsy can confirm any cancer, but you've got lymphoma, and are heavily advanced."  Less tact, but a lot of honesty.

Interestingly, last year I went to doctors twice for stabbing pains in my lower-right abdomen. A CT was done, totally negative. The doctors all said that "there is not much there, and we have ruled out everything."  If felt like I was being stabbed with an ice pick both times.  I have had three laproscopic surgical entries where the pain came from (gall bladder removal, prostate removal, and later hernia repair), and proposed to them that it might be scar tissue tearing. All agreed that my theory was as good as anything they could propose.

If it is lymphoma, know that lymphoma is among the most controllable and least fatal cancers.  Know also that lymphoma near the intestine is not the same thing as colorectal cancer -- colorectal is hugely more dangerous.  At diagnosis (if it is cancerous), they will TYPE the lymphoma, and there are well over 60 forms of lymphoma, each a different ball game.

It is quite reasonable to believe that very likely your tumor will be readily controlled and eradicated,

max

Rudy675
Posts: 3
Joined: May 2018

Your description of pain is almost verbatim  how I described mine to the doctor and loved ones.  I've never had abdominal surgery before.  My stomach muscles are fairly strong, I do a lot of powerlifting.  They did check for hernias and muscles tears.  The best they could say was, " do you do steroids?"  I said no, because I don't and he just shrugged and said maybe it's a pre-hernia, take a week off from lifting.   I did do that, but I still have constant radiating pain.

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