March 8th this year I had a radical neck dissection on my right neck. The doctor @ Georgetown said it was worse than he thought when he made the diagnosis. I went through 42 Radiation Treatments and 3 carboplatin chemo treatments(first three weeks of radiation). They were going to do more but the blood work results prevented anymore. Unfortunately I have been reading about oral cancer that metasisizes to the lymph nodes and the outcomes do not look that good. I have my first PET Scan on 9/30/13 and a follow up with the radiation oncologist on Oct 4th. I am worried to say the least that the cancer has spread elsewhere and just needed a place to vent. Have not shared this worry with the family as they are worried enough already. I am hoping that the PET scan will be clean but since the PET scan was clean from my first occurence of oral cancer I cannot help but worry.
Anyone know any good questions I can ask the doctor on October 4th, assuming the PET Scan is clean??

Most post treatment scans are clear, in 90% percent range. I wonder why they did a RND, if there were no nodal involvement, metasteses, by the sound of your post, which may not be complete, but can answer that myself, and could depend on the primary tumor size, other negative factors, but these days a modified radical neck dissection, MRND, is done instead of a Radical to preserve one or more structures. Most recurrences occur the first two years, and recurrence or failure rate is high compared to non HPV, but that can also depends on the stage, TNM grading, and negative predictive factors, and can just see it in the five tear survival rates being less than 50%. Even if it does recurr, there still can be treatment options, and had 5 recurrences myself, multiple treatments, surgeries. I would take one day at a time, and so far it's clear, until proven otherwise.

I don't know what else to ask for if the PET is clear. Any further scan to prove otherwise, is not done, other than for a suspicion or scan schedule. Maybe your follow-up schedule.

Good luck.

Thank you Paul. The doctor did a RND because the tumor was protruding/puncturing the lymph node or something like that. The tumor grew rather rapidly as well, it was not there end of December and was very large end of January and it hurt too. I think the doctor said the tumor leaked too. That kind of worries me as well. I had the cancer originally on the the bottom of my right tongue in Mar 2010 and was 'clear' until Jan 2013 when they found this lymph node involvement. I did not have radiation and chemo in 2010 just a partial glossectomy of the right tongue. Again thank you for replying.

Ok. Wasn't sure if this was your 2nd recurrence or inquiring what if. I assume they removed from level I-V or IV, being level I is usually the first nodal involvement in oral cancer, Level II in oropharyngeal, but there can be skip metastases. What level was your metastases..there are seven in the cervical neck, which sometimes matter. I had a RND, and two more, and out of the lymph nodes now.

I hope for a clear scan for you!

Hi Paul don't remember what the stage for this one was, the first one in 2010 was stage 4. I kind of went blank when I heard I had cancer again. The numbers bounced off, I have them written down in a notebook @ home. I know they removed a lot of lymph nodes on my right neck along with my tonsils. And they did an excision biopsy on my left lymph nodes as well. Said they did not find anything over on the left.

Hi TeeJay,

Sorry to hear about the recurrance. It's the thing we all dread with SCC. I had a selective neck dissection in Feb of this year. I had nodal involvement and the team at Hopkins felt it best to get them out prior to chemo and rads. The same thing happened when they went in as the tumors were quite aggressive. The surgery was a lot more involved as the tumors had wrapped themselves around the nerves, muscles and blood vessels in my neck. They took an additional 24 nodes. Fortunately they were able to get it all and the subsequent treatment was more of a mop up operation.

My post Tx PET last week (8-6) was clean. With the carpet bomb approach of chemorads, the outcome is quite favorable and typically the 1st PET after treatment is favorable too.

Obviously they'll be keeping a close eye on you for a while. I know it's hard but try not to worry too much. The reality is, there's little we can do anyway but keep a positive outlook and hope for the best. Ask about follow-ups and additional scopes/scans etc. I'll be seeing my team every 3 months for the next two years. No further scans are planned unless they see something suspicious but I'll be scoped every time.

Positive thoughts and prayers,

"T"

Thank you and positive thoughts and prayers to you too.

Hi okay so you haven't had a recurrence right? I think you said you had surgery - there was a lot of involvement and they decided on rads and chemo too. Try not to worry - they removed the primary tumor and surrounding tissue, and some nodes. Then cooked Anything left over - that's as good as it gets! do myth k
Now how many nodes were removed? Now many were involved? And where your primary tumor was? And finally are you HPV + - answers to all of these questions should ease your mind - hugs!

Hi Teejay,
So: Jan 2010 - dx cancer and surgery only. Jan 2013 - dx cancer and RND on right neck for cancer in March 2013 followed by chemo/rads. Now, scheduled for your first PET end of Sept. 2013. Correct?

You did not specify location of primary tumor. Nearly always the lymph nodes are not the primary location in HNC but often cancer metastasizes TO the nodes. Where is the primary?


All you can do is be patient as you can until the scan results come back. But you know better than I, those early scans can be just fine yet cancer can roar back in the coming years.

There really is nothing I have ever heard that a survivor can DO to make it stay away and never come back. Again, you are a first hand survivor so you know the feeling being a cancer patient who lives with the uncertainty of a recurrence.

All my research supports the fact that recurrence occurs nearly always in the first two years post tx. Unfortunately, you were right on the end of the "danger zone" so to speak. Another 6-12 months, chances are much slimmer for recurrence to appear.

That said, you have more treatment this go around, especially radiation which is very good at really KILLING the cancer locally. The chemo offered during radiation is generally done as a radiosynthesizer to make the radiation work better. It's not clear to me what was used to treat the primary unless it was in the neck as well and nowhere else in which case it is pretty unusual for HNC to be located only there.

Anyway, hang here and you will get great information, advise, and support. Best to you, don

2010..Bottom of right side of tongue was the primary (oral tongue), partial glossectomy.

Learned something new. So when it is a case of recurrence, one only needs to find cancer of the same etiology and that automatically correlates it to the original primary even though that primary can be totally excised and banished?

I believe so, Don. In my husband's case, the H & N area that was treated has remained cancer-free. His cancer is now in the lungs.

Yes. I had tonsil cancer, which I had no recurrence for since 2009, but had 8 or 9 recurrent areas in cervical lymph nodes/free form metastic SCC, metastic SCC in the neck muscle.

Sorry I misread. Duh.. hugs

Teejay,

Sorry to hear you are a member of the recurrence club also. It is bad enough to go thru treatment once, but the fear and anxiety of a recurrence is tough.

Good luck with your follow-up scan. I usually ask for copies of the reports. Also, have you had your thyroid checked (TSH blood test)?

To help us help you, can you add a "signature" with contains info about your diagnosis and treatment and will appear on each of your posts? It is under "My Stuff" and then select "Edit Profile".

Praying for a clean scan for you! Keep us posted.