Interpreting diagnosis after opp - Oral Cancer Support

Hi ...Just reading the letter after my husband had his neck dissection and it it says all margins clear, one small positive node anterior to thyroid cartilage....

As he can't have chemo or radiotherapy again due to having had this when he had nasal pharyngeal cancer I am quite worried...should I be?

Thanks Kathy

Kathy not all patients are limited to doing rads once. I know plenty of our members that have gone thru rads twice. I even know a couple who had it 3 times. We usually see multiple rads done when a patient has a few years between each of the rad treatments and their next cancer is in a different location. This is done on a case by case basis and usually only at the major CCCs. Usually the second round of rads is a lesser dose too. Also, there are several different chemos that may be able to be used if he would get chemo with rads.

Im not sure what the meaning of the phrase you posted is. When lymph nodes are taken normally many are taken after the positive one to ensure all the cancer has been removed. Do you know how many nodes were taken? If it was found in one node then that node should have been taken plus several more. At your husbands next appointment please get more info from his physician. Im interested to know the total of how many nodes they took after finding one positive.

Best wishes!

Kathy -

I agree with Christine regarding the radiation treatments. However, the best place to get answers to your questions is from your doctors / surgeons. Also, I would add that a second opinion regarding treatment options from another ENT specializing in head and neck cancer may be of some use to you. Try to learn as much as possible about your options and never hesitate to ask questions.

Good Luck

Thank you both for your replies...my understanding was that when Tony had his neck dissection that they removed all nodes. However one ( as explained above) was positive, in my own head because there was one that was positive there is chance therefore that the cancer could have travelled elsewhere?

I know it may seem strange but I only just plucked up courage to read the letter we received some weeks ago, this weekend, which had a written form of what we were told when we went for the results. All I can remember when we were told verbally was that they had got all the cancer relating to the tongue but also found a small area at the back of the thyroid which they also removed. But reading the letter when I read the cancer near the thyroid was found in a node it worried me

I will do as you both suggested and ask the consultant though....

just worried though.
Thanks Kathy

The way I understand about the lymph nodes is to imagine a long bead necklace. If cancer is in one bead it can travel to the next one and so on and so on. Ive been told its a rarity for the cancer to jump over a node and appear in the next one. To answer your question if cancer was found in one it wouldnt necessarily be found a few nodes later, it would be next to the first one, it goes right down the line. Theres around 300 nodes found in the neck area, so its doubtful the doc took them all. Ive frequently heard of over 10 nodes or even up to 20 - 30 nodes being taken. From my understanding, doctors will take many that come after the one they find cancer in to ensure they get it all in one shot.

Please let us know how you make out with the appointment. Best wishes!

Thank you Christine you have explained that so clearly which is really helpful.
The problem is that when you are going through all this, you can't think of questions at the time, and often it takes a while for you to process the information and of course not being medically minded it can all be very overwhelming...such a steep learning curve isn't it and not one you perhaps would take by choice..

Thank you again.

Kathy

I know exactly what you mean. Every time I leave a doctors office Im driving home and always think of something I should have discussed. My memory isnt what it used to be.

Try writing things down with an ongoing list that you keep in your purse or vehicle so you dont forget it when you take your husband to his follow up appointment. I make lists but then have the bad habit of leaving it home on my fridge. Ive started doing better when I keep it in my car.

Let us know how the appointment goes and how they explain the test results. Remember they are written by people who have medical backgrounds for people with years of medical schooling to read, not for us regular people. When I was in the hospital in Jan. I found the nurses always used medical lingo at shift change. Surprise!!! I think it was done so patients didnt understand what they were talking about. Thanks to OCF, Ive learned lots of medical terms and would ask them questions when I heard things that didnt sound right. The looks on their faces said everything I needed to know.

Kathy,

You already received sound advise, most notably to get a 2nd or even 3rd opinion.

I would like to mention I had radiation 5 times, with 3 different types of radiation; IMRT, IORT, and Proton Radiation in the course of 3 years, so the time in between does factor in, usually no less than 6 months time span, and the patients age, health, location of tumor, amount of prior radiation, doctors experience, etc. do factor in, but with different modalities they may be able to squeeze in more if it's necessary.

I've also had 7 recurrences, so I understand your situation. it was mentioned at one point I had persistent cancer and radio/chemo resistant for whatever reasons resulting in the cancers return.

As far as the lymph nodes, Christine pretty much summed it up, there are 7 neck levels, l-Vll, which cancer metastases usually follows a certain flow based on the type of cancer. As mentioned, there are over 300 lymph nodes in the head and neck, mostly microscopic, and are usually removed in lymph chains or levels like in the radical and modified radical neck dissection or sometimes it's limited or select neck dissections. Even after I had a radical neck dissection, lymph nodes were later found in subsequent surgeries, so I'm not sure they always get them all. There can be "skip metastases" where cancer skips a level to another, as mentioned. Basically cancer can go anywhere, and with neck dissections, it disrupts the lymph pattern, so i heard cancer can go anywhere.

From your signature, and postings, the positive lymph node was remove. For any recurrence, surgery is usually the first preference, and based on other negative features, with radiation or Chemoradiation.

On the pathology repor they would indicate some other negative features such as LVI; lymphovascular invasion, PNI; Perineural Invasion, and such usually involves radiation and possibly chemoradiation suggested.

Not sure if they tested for HPV being the oropharynx was involved, Ebstein Bar Virus if the Nasopharynx was involved, but this may not alter the type of treatment at this point, but can in other matters.

I'm not a doctor, but if it were me, and I've been there, I would be looking for the best doctors and cancer center I can find who are experienced with this.

I hope this helps, and if you have any questions, just ask.