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Denise C

Waiting to speack to Doctor

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Hello,

I am new to this forum by way of introduction my 41 year old husband went to the ER on 6/14 for a bout of diverticulitis.  The ER performed a chest x-ray and  CT scan of his abdomen.   The chest x-ray showed a spot on his left lung.  They then did a CT scan of his chest and determined he had a 1.3 x 1.3 x 1.4 CM nodule in his left lingual lung.  I might add my husband has never smoked or worked around asbestos or chemicals.   He was then sent for a PET CT scan from his skull to his thigh.  He received a call from the doctor's office informing him to come into the office for his test results on Monday.  However his scan results were posted to his on-line chart and we were able to read the report.  Which I think was a mistake.  The report states the following:


1. FDG avid left pulmonary nodule concerning for malignancy. Consider close interval PET-CT
follow-up.
2. FDG avid esophageal lesion representing primary malignancy versus subcarinal adenopathy,
difficult to distinguish on this non-contrast CT. Recommend direct visualization of the esophagus.
3. FDG avid cervical adenopathy. These may be too small for biopsy but consideration warranted. 

No acute intracranial abnormalities. Scattered bilateral level II subcentimeter nodes, 3.5 SUV.

CHEST[, BREAST AND AXILLA]:

Mediastinal blood pool, 3.1 SUV. Left lingula 1.1 cm nodule, 3.1 SUV. Subcarinal nodule versus
esophageal lesion, 17.5 SUV (axial image 105-109/323). Remainder of the mediastinal contents are
grossly unremarkable..

I know everyone is different but just wondering if anyone has had a SUV level as high as 17.5.

Trying to remain calm but having to wait until Monday is very nerve wracking.

Anyone with a similar experience?

We do live within 60 miles of MSK and wondering at what point do I call there to schedule an appointment.

Thank you

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I had an SUV of 18.5 or so in a mediastinal node. MRI of brain was clear, glad for that.

Relax and try not to overthink or obsess over this. Wait until you can see the doc.

Blessings

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Hi Denise-

Its nice to meet you, glad you reached out to our group. Waiting & nerve wracking go hand and hand during this time. We have all been there and can honestly say we know how you feel.  You’re not alone here, this is a warm, caring family on this forum. 

Isabelle has given you some great advice. One step at a time, it’s so easy to get ahead of yourself. It doesn’t help that the outpatient process doesn’t move as fast as we would hope. 

See what the doctor says on Monday before calling MSK. If it’s lung cancer, you will learn there are many different types. According to a recent MSK report, there has been more treatment advances in the last 5 years than in the last 50.  Due to the many different LC sub types, oncologists specialize.  Stay away from Dr Google- the data is way out of date! 

Please let us know how we can support you.  Feel free to ask any questions.  There’s a lot of expertise here.  

Michelle

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Denise,

Yes, several of my malignancies had SUVs above 17.5.  I'm not sure the magnitude of the SUV is the issue. Characterization of SUV to metastatic disease is kind of an art form.  Values 2 and below are considered normal.  Values from 2 to 3.5 may be a metastatic indicator but can also result from other causes (inflammation). Generally, normally, usually, values 4 and above are considered metastatic disease.  A value of 4.5 is just as concerning as a value of 17.5. Either value would be a troubling test result and warrants follow up.

When should you consider a big-time medical center?  That is a difficult question. Most seek one when there is difficulty in the diagnostic phase or when a treatment (like surgery) is ruled out. If the SUV uptake in the esophageal lesion is confirmed by the doctor, the next step is to determine the type of cancer. The radiologist is suggesting a closer look at the esophagus and depending on the location, a flexible bronchoscope could provide a visual exam and obtain a biopsy.  The primary lesion (and maybe the only lesion) is in the esophagus therefore suggesting throat cancer, but a biopsy will be necessary to confirm the type. Once the type of cancer is known, a treatment plan can be devised. 

I'd stay with the current team until a diagnosis is determined and a treatment plan is developed. Ensure you get copies of all test reports performed because these will be helpful if you choose to seek a second opinion.

I completely understand the difficulty of your weekend wait. Unfortunately, waiting for diagnostic results is an activity cancer patients are well acquainted with.  Welcome here. I normally refer new folks to this site to read about lung cancer, but your husband may not have lung cancer.  More questions? Fire away.

Stay the course.

Tom

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Hi Denise. My original SUV was above 20. With no mets to brain or bone it didn’t mean too much to me. After chemo and radiation, it was down significantly but I don’t remember exactly as I’m not home. I too am waiting for test results this weekend. Usually I get them before the doc but not yet. It’s nerve wracking but this too shall pass. Fingers crossed for you. 

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The waiting is so hard.  Just trying to stay busy.  Whatever the news on Monday I know we will get through.     Thank you all for taking the time to share your knowledge and experiences with me.  

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Hi Denise.  I’m 43, never smoker and was diagnosed with Stage 1 four months ago.  The nodule was found by accident on a scan for something else.  It is a shock and the waiting for an actual diagnosis is really stressful.   Having the medical reports to obsess over makes it even tougher.  I went through my initial screenings at a local cancer center.  Once it was clear I was going to need surgery I went and got a second opinion at a larger one.  I was told the same things at both places but decided to go ahead with the surgery at the larger center.  I felt more comfortable with the doctor there. 

One bit of advice, don’t try interpreting the report via Dr. Google.  There is a ton of old information out there.  I made that mistake and it resulted in a lot of unnecessary stress and worry.  My treatment and prognosis were very different from what I found online. 

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Just an update.

My husband had an appointment with his GI doctor as a follow up to his diverticulitis which is what landed him in the hospital in the first place.  The GI doctor read the PET scan and told my husband he needed an endoscopy to see what was happening with his esophagus.  He had the endoscopy yesterday and there was no sign of cancer in the esophagus.  So it was off to the pulmonologist yesterday afternoon.  The news there was not as good.  The nodule in his left lung measured 1.1 cm on the PET Scan.  In addition he has a swollen lymph node in his airway as well as a few nodules in the back of his neck which are too small to biopsy as they are less than 1 cm.  The pulmonologist  referred my husband to a thoracic surgeon to see if he wants to biopsy the lymph node in his airway and then possibly remove the nodule in his left lung depending on the results from the biopsy of the lymph node in his airway.   

Still no confirmed diagnosis but pulmonologists seems to think cancer and said she is proceeding down those lines until proven otherwise.

Taking it one day at a time as this point but the waiting is awful.   And I am staying off of Dr. Google.

Anyone else have a similar diagnosis? 

Thanks for listening.

Denise 

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Hi Denise.  1.2 CM is really small.  They often won’t biopsy or PET anything that isn’t at least 1 CM.  Mine was .8 MM.  I decided to have the .8 MM module removed without knowing what it was.  During the removal it was tested and they continued with a lobectomy of my right upper lobe.  I know that sounds horrible, but it’s nothing like it sounds.  The surgery is a very affective treatment and the difference in my quality of life has been very limited.  Let’s keep hoping it’s nothing, knowing that if it is cancer there are very affective treatments for it.  Hang in there.  

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