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Topic: PET scan is Glowing

Forum: Waiting for Test Results — Biopsy, mammogram, CAT scan, PET scan, ultrasound, or other tests.

Posted on: Aug 19, 2008 06:23PM

annie50 wrote:

I had IDC dx May2007 at the age of 49.  Bilateral Mast. w/sentinel node bx. 

Stage 1, borderline 2.  On Arimidex.

Lymph neg.  ER/PR++  Her2+.  It has been over one year, I had four rounds of chemo with Cytoxan and Taxotere because my Onoctype came back at high-intermediate risk of recurrence.  Had tissue expanders placed in Feb. 2008....had a massive infection....hospitalized for 7 days, then released on home health care.  Naturally had surgery again to have them removed. 

Since then my  gynecologist found a lump in my rt. chest.  Had an ultrasound.  Radiologist said it's most likely scar tissue.  Followed up with the surgeon again and he told me not to have reconstruction until we are certain all is okay.  He did not feel that the lump had grown.  No one sees the need to bx this lump. 

Last week I went for a PET scan and the oncology nurse calls today to tell me that 'both sides of my chest are lit up, but don't worry about it.  The doctor thinks it might be from the infection in February.'  I asked her what we need to do and she said he would see me in 3 weeks that my bones and organs are okay.  She does not know what he is going to do.  Oh my Lord....what a way to tell someone.  I called the surgeon and he has ordered yet another ultrasound of my chest on Friday.  I want to believe that this is from the infection, but if they knew that was a possibility, why didn't they speak up before the exam.  I am exhausted and freaked out.  Has anyone experienced something similar???  Any words of wisdom???

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Aug 19, 2008 10:41PM AnneW wrote:

My god. I know you're freaked. It does seem highly likely that the "glow" is from your previous infection. Or even a current infection. But I have no clue, really. I'd be in panic mode right there with you!

I would imagine that they'll repeat the PET at some point and look for changes?

It's right to get that lump thingie checked out again. And I wouldn't sleep well without a biopsy, I'm afraid.

No words of wisdom. Just some encouragement to hang in there, take a few deep breaths, and do something fun for yourself to get your mind off all the worst-case scenarios.

Best wishes,

Anne

2002 IDC stage 1, grade 1, rads & AI

Dx 9/18/2007, ILC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Aug 19, 2008 10:49PM, edited Aug 19, 2008 10:50PM by suemed8749

Annie: I remember before my PET scan that they told me that one of its problems was false positives. I was told not to exercise for 24 hours before since torn muscle tissue can glow, so I imagine that an infection with surgery on top of that could certainly trigger a false positive.

Hopefully you'll get some answers soon about this and the chest lump - "don't worry" is NOT acceptable!

Sue

Dx 1/15/2008, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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Aug 19, 2008 11:09PM, edited Aug 19, 2008 11:12PM by badboob67

Annie50,

PET scans really do give a lot of false positives. Considering what you've been going through with the surgery/infection, I think it is quite possible that something *other* than cancer as "lighting up". The prep for a PET (no strenuous activity or high sugar intake 24 hours prior and nothing by mouth for at least 12 hours pre-scan) is absolutely necessary as is a finger-stick glucose level before being injected with the radioactively tagged glucose that is used for the test. The PET is measuring the metabolism of your cells. I imagine that healing tissue is also something that causes the cells to operate in "overdrive". I am so sorry you are going through the wait and uncertainty; it just isn't fair! I do hope that you can talk someone into doing a biopsy so you can get a definitive answer.

((((HUGS))))

Diane 

When you're down to nothing, GOD is up to something! http://bb67.wikispaces.com/

Dx 2/15/2006, IDC, 5cm, Stage IV, Grade 2, 24/27 nodes, mets, ER+/PR-, HER2-
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Aug 20, 2008 01:38PM Emily2008 wrote:

Mine lit up on the breast that had a stereotactic biopsy b/c of significant bruising and hemorrhaging. False positives are common.

BRCA 2 pos.

Dx 5/14/2008, IDC, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Aug 20, 2008 05:08PM Tucheta wrote:

Hi Annie50

Just as others have also said on this thread, my understanding is that on a PET scan you can see all areas with high glucose uptake, and inflammations are such areas too. This is why exercise prior to PET scan is forbidden and why the doctor who interprets the images should discuss with the patient first and be aware of her (recent) medical history and physical activity.

So I also want to believe they were right to say it is because of the infection, but it is good to have it further investigated as this is the only way to be sure and to get peace of mind. 

Hugs

Ralu 


Dx 1/8/2008, IDC, 5cm, Stage IIIb, Grade 2, 2/13 nodes, ER-/PR-, HER2+
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Aug 20, 2008 05:38PM homeagain wrote:

I've seen copies of my 'PET's' and it always looks to me as if I'm glowing!

Maybe that's because I've got some other auto-immune issues that set off the bells and whistles.  At least, color-wise? 

Don't panic yet, by any means.  It could be just a remnant of infection or the scar tissue [something such tests don't discriminate between], or something totally simple and easy to 'fix'.  Don't panic or cram your head with 'might be's' until you have a handle of what the 'maybe are's'-are.  Follow your good instincts about this all-after all it is your body and you know best what you feel is right/wrong about all this. 

Save your energy for when you need it, IF you need it!  Hugs!

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Aug 22, 2008 12:10PM annie50 wrote:

Thank you for your kindness and support.  Your postings have made me feel much better.  I am waiting on an US and I will continue to be positive.

Annie50

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Aug 22, 2008 12:11PM annie50 wrote:

Thank you for your kindness and support.  Your postings have made me feel much better.  I am waiting on an US and I will continue to be positive.

Annie50

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Aug 22, 2008 05:23PM Sassa wrote:

I know what you are going through.

I "lost" the whole month of June this year after a CT/PET scan came back with a absolute statement of a malignancy in the spleen.  The report sent my oncologist into a tizzy (she was positive I had also developed lymphoma).

After a battery of tests and a high resolution CT scan of the spleen, I was diagnosed with a very rare benign cyst as a result of a congenital malformation of the lymphatic tissue in the spleen during fetal development.

Of course, to make sure of the diagnosis, I am being sent in for another CT/PET scan next Friday to see if there are any changes. Frown

Dx 11/6/2006, IDC, 1cm, Stage I, Grade 3, 0/9 nodes, ER-/PR-, HER2+
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Sep 1, 2008 09:12AM annie50 wrote:

After undergoing several biopsies of each worrisome site, I finally know that the areas were cysts that absorbed the uptake from the PET scan.  I think that physicians should mention that there can be the possibility of a positive scan after surgery....along with more reassurance than 'don't worry about it'.  I and my family went through a several days of hell because the PET was positive.  I am so relieved that I don't have to face more treatment...a weight has been lifted.

Thank you for your kindness and your support!

Love,

Annie

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Sep 1, 2008 01:03PM TheQu33n wrote:

Wow Annie, thank goodness. Totally agree with you, they should have given you more info. Sometimes they are all in such a rush I think they don't "want to get into it." Happy that you can put this behind you. - Hugs

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Sep 1, 2008 01:08PM spar2 wrote:

Thank God for some good news.  Am so happy for you annie!

www.spar2.multiply.com Lets help make each other's life better

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Sep 1, 2008 01:25PM wishiwere wrote:

Great news Annie! So glad it was only cysts but you are right, they need a way to convey all that can be seen without scarying a person for so long! Geesh!

wishiwere~ Path read stage 1C- 1st Primary was IDC w/DCIS 1.4 cm, ER/PR+ & HER2-

Dx 9/21/2007, ILC, 1cm, Stage Ib, Grade 2, 0/4 nodes, ER+/PR+, HER2-