Hello everyone,

I am meeting the radiation oncologist tomorrow. I had a neck dissection on the 12th and out of 22 lymph nodes removed, 3 had the cancer. The largest of the 3 measured 2.4 cm. My oncologist recommended radiation and not chemo. I see that so many of you have had chemo and I am wondering why not at this time for me. Is there a particular thread I should be reading? I am trying to get a second opinion at Sloan Kettering in Basking Ridge but am having a hard time.

Any thoughts would be greatly appreciated. Thank you!

Hi Katie,

I think you should definitely get a second opinion. From my understanding, there is no formal "rule of thumb" of when to get chemo and radiation, it is pretty much up to the doctor's discretion, so it is probably best to get an opinion from a major cancer center. At first my surgeon said I probably wouldn't need chemo, but sent me to a medical oncologist anyway for a consultation. The medical oncologist thuoght it would be best to go ahead and do the chemo, since I had two nodes positive. I also wanted to be as aggressive as possible with the cancer, given the high recurrence rate.

I had small doses of weekly cisplatin, and to be honest it was the easiest part of treatment for me. No hair loss (except from the radiation), and the nausea was mostly controlled by the medicine.

Good luck! I hope you are able to get in for a second opinion soon!

Usually, when there is lymph node involvement, there is some type of chemo in addition to the radiation. The chemo is kind of a back-up to the radiation. My primary was also in my tongue, and I also had a neck dissection because of the lymph node involvement. I had 38 radiation treatments and three cisplatin. Mine was stage IV, however.

Katie, certainly go for the second opinion. I was also stage II but with an unknown primary, and had 2 infected nodes but no extracapsular spread. That seemed to be a large part of the decision by my team of RO and MO not to put me through chemo. As well, since I was HPV positive they felt that the radiation ought to do the trick, which it did (so far - 3 and a half years out!)

I think you'll find a wide variety of treatments here, and opinions. The best ones for you of course are from your doctors, as they know the specifics of your situation.

Please let us know as you go along. And hang in there!

I got an appointment at Sloan for December 11th with a radiation oncologist. Does the radiation oncologist discuss chemotherapy as well, or is that the medical oncologist? Sorry to sound ignorant but help!

Chemo is usually handled by your medical oncologist. The RO and the MO will work hand in hand with regards to your treatment plan.

Katie, here is a link to the main OCF pages. Its full of important info that could be very helpful to you. I always think an educated patient is the best plan as they can advocate for themselves.

Good luck!!!

Main OCF pages treatment info

Hi Katie,

You seem like you had a very similar cancer to my wife who is currently in her last week of treatment.

Ask your doctors if there was any Perineural Invasion or Extracapsular Extension in the lymph nodes.

If one of the two mentioned above does exist, you may want to get a second opinion and ask for chemoradiotherapy as lymph node involvement with any of these two traits warrants aggressive treatment.

Hope that helps and I wish you all the best on your journey to becoming cancer free (if not already)!

With 3 lymph node involved, it sounds like stage 4, not stage 2. MSK is the number 2, often 1, cancer hospital in the country, so you are in good hands there, but it's always good to get another opinion. Don't wait too long for MSK to act, they dropped me like a hot potato after waiting a month or two, sending every document to them, but I was already going elsewhere for 2nd and 3rd opinions, so I was ahead of them.

Katie - ditto to what everyone else said. Get a second opinion at Sloan, also I know it's only a few weeks away but push to get in sooner, ask if they have any cancellations. Secondly, if you're at Sloan it would be a comprehensive team looking at you ( though the focus at this point would be MO, and RO) you should very much in my opinion have chemo. Radiation is localized to the area - chemo is systemic (works throughout your body) on the off chance you have a stray cancer cell moving about this should kill them. Three nodes whether encapsulated or not is nothing to sneeze at. Your lymphatic system runs paralel to you circulatory system and cleans your blood. Therefore it has access to everywhere. In light of this chemo should be offered as well.
I had perineural involvement, one node involved with a small amount of ECE - I had the works for treatment - they even gave me bilateral rads.

Push for more. Hugs and best of luck... Seriously call them daily to see if there are cancellations.