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!

I agree!! No he is on vacation and so is his nurse...until the 8th!

I would explain the situation to the RO whom you have not met, and see if he will see you before the 8th. He is after all, a member of your team. He should be involved more than in name if he (and this at a cancer center) is truly a multidisciplinary team concerned with your well being. IF this is something recurring, he is likely going to be the person working with you as well, so getting him involved is appropriate on many levels. It is your life, not the doctor who is on vacation and has NO other doctor covering his cases while he is out. That is unthinkable in itself. Time to start fighting for YOU, something that no one is more vested in than you, and is only appropriate. While things do not get horribly worse over the course of a week, when it comes to cancers, time is never your friend.

I agree, Brian. This is an inexcusable situation for Shaylynn, and I imagine other patients as well.

I am having my PET scan sometime next week, as soon as my insurance approves it. My Dr. did tell me about the possibility of false positives and false negatives. He also said that if the SUV value is 10 or greater they would probably look at taking out the nodes and having them checked. If it was a 2 or 3 they may wait a few more months and do another scan to see if they have grown or staying the same. I think your values are really high. I hope you get a Dr. to discuss these results with you before the 8th. that just seems like a long time to wait.

I am confused I suppose on how this whole Cancer center works...This team approach. I mean my DR is on vacation until the 8th I have called and complained but no other dr can see me. I mean that makes sense that my dr would need to see me to discuss the next course of action not some dr who isnt apart of my team.

Shaylynn,

Are you at a Comprehensive Cancer Center? Were you evaluated by an RO, MO and ENT/Surgeon prior to your partial glossectomy and ND?

Even though I was seen at CCC, Moffitt in Tampa, I had one "lead" doctor which was my RO and everything had to flow through him. He was the one, and still is, that set all my appts so maybe this is what you are up against.

Again I'm not a doctor but I don't see a big concern physically about waiting until the 8th but you do need to try and calm down as that won't help anything.

Yes Margaret. I am at Brown Cancer center and they have a muti approach and I met with everyone on my team prior to all treatments.

David, yes that is what I guess I am trying to say. He is my lead DR and I totally understand why I am waiting. I was just curious if anyone had seen anything like this on their scan reports. I am in the medical field and have a pretty good understanding of what this all means.

The only problem I have until waiting until the 8th is that I am in a lot of phyical pain and having a hard time sleeping through the nights. That was my only concern.

Dan's primary was his ENT. However, we had access to everyone on the team and we found the NPs most responsive to anything that we needed. Each doctor had an NP and they all had email addresses and were amazingly good at responding daily.

If your main concern while you wait until the 8th is pain and sleep and you can't get help from anyone at your CCC, why not call your primary care doctor and tell him/her your situation and see if you could get some pain relief and a sleep aid? Our primary care doctor helped us a lot as well because he was 45 minutes closer than our CCC.

Good luck!

Margaret

Shaylynn,

By all means nag the other docs, especially the MO and get this pain under control. I called all my docs and complained until at least one helped me. Remember the Squeaky Wheel....

Dr appointment today...
Dr said that he wants to remove both nodes that lit up as well as some surrounding. Surgery is scheduled for August 4th! I hate that it is so far away! After removal he will then send nodes off to pathology and then go from there. Of course if cancerous he will suggest rad/chemo. I am assuming cancerous...what else would cause such swelling in my nodes.

I can't believe that you are putting up with this doctor's schedule. I hope he is God's gift to doing the procedure, because to make you wait during his vacation to discuss your future, and now to put you off a month to do the procedure is ridiculous. With all due respect to your making your own choices for treatment, I personally would have moved from him to another doc long before now. If it is true that it is in your lymph system, this is the place that is a super highway to other vital organs in your body for the disease, and the lymph system primary mode of distant metastasis.

I do not wish to alarm you, but your patience with his scheduling is something that I would not have.

Well I do wish to alarm you because if one cancer cell escapes the nodal system then it is far far worst than where it is right now. Three years ago my CCC doctors told me that if my cancer spread beyond my nodes it would likely either go to my brain or my lungs and it both locations the prognoses would not be good.

This is your life and you need to start making some noise here. I would call a CCC near you and get things moving at a faster pace and it never hurts IMO to get another opinion especially from a CCC. http://www.oralcancerfoundation.org/resources/cancer_centers.htm

I am going to a CCC. This is the earliest the surgeon can get me in. I will be seeking a 2nd opinion.

Where can I find a list of CCC?

I'm so glad you will be getting a second opinion.
CCC list: http://www.oralcancerfoundation.org/resources/cancer_centers.htm

one of my issues is no insurance so i have to find a center willing to work with me

I helped one of our "employees" without ins get covered by the County medical program. The County would then treat her for free but she had no choice as to who she saw or when they saw her. She had breast cancer and the only doctor they sent her to to get treated was a GYN who worked one day a week, afternoons only. I went with her to her first (and only) visit and he did a pelvic exam on her!!

I called Moffitt and was told they could only see her IF THE COUNTY ALLOWED IT by authorizing an Out of Network Referral but they said that was pretty much impossible to get the County to do. Bottom line, after being a constant squeaky butt wheel the County gave us one and she ended having her surgery and all chemo treatments under Moffitt and still free. From the time Moffitt told us about the Out of Network Referral till her surgery at Moffitt, less than a month had passed.

Point is anything is possible.

BTW for all of you who remember Martha's story, we just went to her 1 year anniversary doctor's visit Monday and all is perfect. She earned her PHD like the rest of us.