I am meeting with the DR July 8! I cannot beleive he is on vacation until then! Here are the key points on my report. Anyone have any thoughts?

1.Centrally necrotic adenopathy in level II of the left neck measures 3.0 x 2.5 cm & shows peripheral rind of hypermetabolism consistent with necrotic metastatic adenopathy. (SUV 12.4)
2. Low level FDG uptake within 1 cm left level V lymph node at base of neck consistent with metestatic disease, with several additional clusters of smaller nodes nearby too small to be detected by PET, however suggestive of small volume nodal metastasis.
3. Centrally necrotic partly photon deficient hypermetabolic right level II neck adenopathy measuring 2.0 x 2.0 cm consistent with metastatic disease. (SUV 14.7)
4.Postoperative changes involving left side of tongue base and submandibular gland without evidence of local recurrance.
5. No evidence of metastatic disease below the neck.



Here are a few things not related to my cancer that were found:
1. Pineal gland cyst with peripheral calcifications.
2. A 5 mm low density noted in left lobe of thyroid gland.
3. Trace pocket of fluid is seen in the right hemipelvis.

I would not want to wait for this doctor to be available to discuss this with you, and would want a second opinion anyway, from someone that was not a surgeon. His office should be able to see that you get that referral on Monday. The SUV levels they are finding are very high. Speaking as a non doctor, who only has a peripheral knowledge of all this, double digit SUV's are generally not a good sign.

Yes I have done a lot of research on what the report says. I posted a while ago about neck pain and swollen glands and waited a few weeks for scans. The plan was the dr would call with the results since it was just routine...well doesn't look like the results are routine.

I am working with a Cancer Center and not really sure who to contact in order to get another apointment.

Hi, Shaylynn,

I'm sorry that you have to live with this anxiety. I would call the cancer center tomorrow (you may have just seen a surgeon so call that office) and say that you need to be seen right away by someone with whom you can discuss your scan results - because your results are worrisome to you and waiting 2 weeks is too long. Your psychological well-being is just as important as your physical well-being and waiting so long to discuss your results when you're worried is not something you should need to do.

Take care- Sophie

Shaylynn,
I work in the radiological industry and I couldn't intrepret your report (nor would I attempt too). Reading radiologists are required to list every anomaly that they see or suspect. Some are further found to have validity and others not, upon further exam, MRI, biopsy or direct visualization. Brian is absolutely right - call and get a second opinion. If you have a medical team you may want to consult all of your doctors. You might also want a referal to a Radiation Oncologist as well. They're pretty good at interpreting scan reports. You may want to start by contacting your original doctors office for the referals.

I'm curious -how were you able to get this report? Typically they don't give scan reports directly to patients and are usually filtered by the doctor first, especially if there are anomalies that may have serious implication.

It also seems like very specific information for a PET scan - was it a PET/CT? Was there an MRI done too?

For what it's worth I didn't have a clean MRI until over a year post Tx and the waiting game scared the crap out of me.

Thanks for your response! Honestly I have no idea how I got the report and the scans...I called the Radd dept asking if they had given the info to my dr, because I had not heard from him. I was desperate, yes. They told me after the scans someone would be calling. They said that I was allowed to come pick them up and they were free. So, no clue.

It was a PET/CT. No MRI. I will be calling tomorrow morning. Thanks for the info!

Shaylynn,
PET/CT dramtically improves the accuracy vs. a simple PET scan so that would explain how they have such precise data.

You MIGHT be having a recurrence so you may have radiation (& maybe adjunctive chemo as well) in your future to clean up the nodes and the original tumor bed. I'm not trying to scare you but tongue cancers tend to be aggressive. Because of your age they may have taken a less conservative approach. In any case, now is the time to have a complete medical team and have a consensual approach about all of your options from a tumor board. The cancer center should already have provision for this.

If you had a nodal involvement your TNM staging is probably not correct either. The "N" would have been a "1" anyway, since they found a positive node.

Shaylynn,

The normal uptake or SUV is 2.5 and anything above that can be questionable for cancer. The closer it is to the norm, generally, the less likely it's cancer and more then likely swelling/inflamation or a false positive.

Beings that you had PET/CT you up the accuracy of the test dramatically as a PET alone has around a 30% false positive rate.

The bright side if you will, if it is a recurrance is that you have the big guns still in your arsenal, radx/chemo to help fight this stuff. I'm with the others that have posted to get to a Cancer Care Center close to you ASAP. These guys are experts at cancer and I believe your best chance for a second chance at beating this monster.

Keep your chin up girl! You can do this, it just got a little more complicated. Wait for the results of course and just take one step at a time.



Eric

As always thanks for the responses!! I have an appt with my dr on the 8th. I called today asking if I could get in sooner to meet with ANYONE...No such luck. My DR is out of the Brown Cancer Center in Louisville and I have a team there. I have not had to work with anyone in my team except the DR(oral sugeon) and speech therapist. I don't know if there is a recurrance...so I am not sure if I should contact the RO to get appointment or what without speaking with my dr, you know

Shaylynn,

Can you email or call him directly?? My docs would never leave me hanging like this! This is just ridiculous!