Hello to my OCF crew.

I am approaching my one-year mark in March. I was diagnosed on 3/16/11 and had surgery on 3/28/11. My next follow up with my surgical oncologist is March 2nd. The only scan I have had since my surgery was back in August of 2011...it was a CT scan with contrast. This was planned for September, but it was moved up because I had found an enlarged node.

On December 29th, I found another enlarged node, virtually identical to the other one in every way. My SO checked it during a routine follow up and did not seemed concerned, in fact, he said that I'm doing great. Good news to hear, but this node has me going a bit crazy at times. I try not to palpate it too often because it's small and I don't want to over analyze it...is it smaller...is it bigger. There's no sense in doing that.

My SO said that after my next visit, the frequency of visits will drop to every 8-10 weeks. Back in August, he said he would probably scan me again in 6 months, which would bring me close to my anniversary. I forgot to ask him if he planned on scanning me at my next visit. So, after all of my babbling here, my main question is what kind of scan am I likely to get? Note that I only had surgery...no chemo or rads, but I do have that enlarged node for over a month now. I've never had a PET. If I need a PET, approximately how long do they last and is the tube/scanner "open" like a CT or is it a narrow tube like an MRI? I will need to be sedated if the latter is the case.

I know these are questions I should have asked my doctor, but I didn't write them on my usual list in my notebook because I was so concerned about other things at the visit. I don't want to call the office to ask these questions, because I can wait until March 2nd to do that. He always encourages me to call, but I thought I'd get input/your experiences here first before I decide to call.

I'd appreciate any experience/knowledge that you'd like to share.

Thanks so much!
Kerri

Kerri,
I did have rad & chemo, with one node, but it had extracapsular extension, so don't know how comparable we are.
I have not looked at the NCCN guidelines recently but you could sure see what they say for your particular "brand".

At any rate, I did have a PET scan but at a different institution from where I had my treatment which was MDA in Houston. It does not seem like MDA does much with PET scans, at least for me. They do CT scans, with contrast, of course. I have had 4, every 3 months. Some places do not do scans as a routine check-up at all. I get to drop back to 4 months now, with CT scans every time.

The PET scan is more involved, more radiation and more cost of course. I'm going to let someone who has those respond to you on that count. PET scans register "activity", glucose uptake I think is how they put it, so it looks at something a little different. After surgery you could have had some "hot spots" because of the inflammation.

As to what they would use I guess you'd have to ask. I would think they might have mentioned if they were going to do a PET scan though.

Probably not too helpful to you--good that you are getting near the year mark!
Best,
Anne

Is this the only doctor you see? Do you see an ENT? Most of us here have several different professionals that check us out on a regular basis. I see my ENT and MO, if I wanted to I could still see my RO, oral surgeon, and plastic surgeon too.

You should be having a scan around the one year mark. If you have something you are concerned about, go in. Dont just call, GO. You doctor needs to feel this node himself and he should know if it has changed since you saw him. Make sure you write down everything you are concerned about before your appointment. Please dont think you are bothering your doctor, they work for you. On Monday morning you make a phone call and see when you can get in to see your doc. With your history it is only smart to be concerned when something isnt right.

Then try to stay busy so you dont worry so much. Best wishes!

Thanks Anne and Christine!

Anne: I have learned from the folks on this site about PET scans and their tendency to show false positives, especially so close after radiation/surgical treatment. I think my SO prefers to order CT with contrast. With my initial DX, I was pregnant and had to have an MRI without contrast. So the only scan I've had since the initial diagnosis was that CT scan with contrast in August. Right now, I see my SO every 6 weeks.

Christine: I am only being followed by my surgical oncologist because my only treatment was surgical. I consulted with a multidisciplinary team before and after my surgery for a few things. First off was what to expect after surgery as far as diet/adequate intake, especially considering that I was pregnant. At the time, it was not known if I would be having an NG tube placed or not, but they figured I most likely would. I also consulted with my MO and RO. They explained to me that I could start chemo while pregnant, but I would have to wait until after delivery to start rads. This was all at Mass General Hospital, which is where I would have been treated for adjuvant treatment should I need it. Luckily, since my tumor was small, had clear margins, and 29 nodes were negative down to the top of level 4 with my SND, the oncology team did not recommend chemo/rads. They said I have a small chance of recurrence, but should it happen, it's treatable.

My surgical oncologist is an otolaryngologist who specializes in head and neck cancer. He is the head of the head and neck program/hyperbaric program at Mass Eye & Ear Infirmary. He teaches at Harvard and works with doctors at Dana Farber Cancer Center and Massachusetts General Hospital. I know I am in the best hands with a thorough team. In fact, my MO and RO (whom I no longer need to see) said that my SO is known for his diligent following of his patients and consults with other physicians when necessary. I am so fortunate to have him as my doctor and wouldn't want it any other way.

I have a large 5-subject notebook that I started from day 1 of my diagnosis. I keep a section for each discipline, since I had so many doctors involved in my care due to my pregnancy. I was sure to write down any question/concern and never left until each item was addressed and made notes on them. The doctors came to know my style and actually were impressed by my organization, but it was the only thing that made me feel as though I had any control over the whole situation. I have never stopped doing that and never will. In fact, at each appointment my SO examines me, we talk, and then he says "What do you have for me?". We both smile as I pull out my green notebook and he sits beside me and we read the questions together. I try to write down questions and notes between my visits as soon as I think of them so they don't fly out of my head, so I am prepared for my next visit. It just so happens that this time, I had other concerns and never thought about the scans until after my appointment. So, yes, I am writing these in my notebook to ask him next time.

As far as the node is concerned, I don't think it has changed and if I thought that was the case, I would be in there the same week. However, over the last couple of days, I have had a vague, intermittent ear ache on both sides, but I'm not sick. Then, tonight, I ate some food that was rather tough and difficult to chew and I had some jaw pain. Both symptoms are gone now. It just made me unsettled and it got me palpating around my jaw and neck. I found 3 more small nodes in addition to the one that the doctor checked out on my last visit (1/13/12). I don't know if they were there before or if they're new. I had Dan mark them with a sharpie and take pictures. I will monitor them and also email the pics to my doc. He always tell me "If you have something that you're worried about, please call me and don't drive yourself crazy.". So, I will give him a call on Monday and email him the pictures.

Ladies, thank you so much for your support and sharing your knowledge, experience, and hope!

xoxo,
Kerri

I would think your ENT would do a needle biopsy of that node.

If it were me, I would certainly ask.

Me too rather than sitting around wondering especially if here's more than one one. Are the clustered? As in all in the same area? Good luck your dr sounds awesome!!

Kerri,
I too am followed by a surgical ENT oncologist, and could see my RO if I needed it, but since my main treatment was surgery, that is who I see. I had an extremely tiny lymph node, could only feel it sometimes, show itself during radiation, but nothing showed up in the ultrasound they did then, nor any CT.
At the time it was mentioned to me it could be from surgery (scar tissue?). I can't find it anymore. But I think you're right in giving them a call.

Regarding your jaw/ear pain, it might not be, but I'd consider TMJ. I did not realize that anxiety could get that cycle going like that, but it can. I am sure you have anxiety like the rest of us. When I visited the oncological dentist at MD Anderson, I mentioned the ear & jaw pain, he pressed some areas, does this hurt, does this, etc. At the end of the exam, he looked at my husband, who is a GP dentist, and said, "it's TMJ." Now that I realize it I can head it off by telling myself that is what it is a working on relaxation.

That is not to say that jaw/ear pain should not be a concern for some people! That's the uncertain and scary part of this disease. But for me it is TMJ.

I am not diagnosing, you understand, just saying it's a possibility.
Best,
Anne

Thanks for all of your input/suggestions, folks! I am going to call on Monday. Anne, I do have tender muscles around the jaw on the left and it certainly could be a mild case of TMJ. I know my neck and jaw are the places that I hold my stress. So, once you've had treatment and the tissues are altered, it's hard to know which is which, esp with anxiety.

Don, my SO did an excisional biopsy of 3 similar nodes in August and all were benign, thankfully. He wasn't sure if the node was large enough to get a needle into it. Again, these are small nodes. One of them is right next to the scar from my excisional biopsy. I'm going to try to attach a pic of the markings just so you can see, if you're curious. I'm also going to post a picture of what my tongue cancer looked like just before my biopsy. I know that oral cancer takes many visual forms, but I think mine looked a little unusual compared to some other lesions I've seen. Let me tell you, first I had pain, but couldn't see anything, then 2 months later, this monster showed up. Time is key, as we all know. I'm forever grateful I got to an oral surgeon when I did!
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