Back in October, I posted a request, to those of you who have had neck dissections, to share your experiences. Thank you so much to those who did so! Now three months post surgery and subsequent radiation and chemo therapies, I will post my experience for those who might find it helpful.
My oral cancer journey began with a diagnosis of SCC of the gum (alveolar ridge) back in 2010. Recurrences in 2012 and 2015 confirmed we weren't done with this cancer yet. The reoccurrence and metastasis to my neck last September proved to be more serious that a simple neck dissection. Surgery included left extended modified radical neck dissection, inferior parotidectomy, external carotid artery resection, followed by cetuximab based chemoradiation 64.80 Gy. I have come through the treatments well and enjoyed Christmas surrounded by family. I'm waiting for taste to return (as I have experienced after 2013 radiation treatment) but am tolerating food by mouth. Of course, it's not a good sign that it has metastisized to the neck, especially with carotid artery involvement, but I choose to keep a positive attitude that the treatments will arrest the cancer this time around. I wondered if any out there have had any similar experiences with neck metastasis and the outcome of treatment? Thanks for being willing to share.

Karen,

I'm glad you have this surgery and treatment behind you, and recovering well.

I have an extensive history of head and neck cancer, tonsil primary, with multiple recurrences, multiple neck dissections, including internal and external carotid artery sacrifice in left neck, and multiple rounds of chemo and radiation therapy. I just had a scheduled 6 month contrast MRI, which scan, and prior PET/CT were clear for the 3rd time. A PET/CT is planned in 6 months.

I hope this helps.

Thank you, Paul, for responding to my post. You have been through a lot and it's wonderful that your recent scans have been clear! I will have a MRI with contrast the end of February followed by a PET sometime after that. I've received excellent care at Stanford, but this cancer, as you know, is relentless and seems to find a way to return.
If there are any others out there who have had neck metastases, I would love to hear from you. I have read some studies where often patients pass away from such a recurrence within 3-9 months. My doctors refuse to site statistics, but I do think it's helpful to objectively be aware of the different paths this disease may take. That said, I'm off to Boston to see my 20 month-old granddaughter! As the Proverb says. "A joyful heart is good medicine."!

Hi Karen,

Thanks for posting the update. Recurrence is never easy but it seems you are doing quite remarkable. I never heard anything about some definite time like 3-9 months! There are many here who experience recurrence and are doing well. Every case is unique so I would not such things even though it is easier said than done. I never spent any time mulling over statistics and prognosis. As long as some survived, I figured my chance was as good as anyone so I always figured I was in the group that survives. Which is why I am typing away here.

Enjoy the family visit.

don

Thanks Don for replying. Yes, I agree, statistics are not significant as each of our journeys is different. I do, however, find reading about different scenarios helpful in not being totally surprised by the course this disease may take. I, like you describe in your signature, am extremely healthy, aside from cancer (That's pretty funny to write I haven't found any others on this forum whose cancer resembles mine (started as a small white dot on gum, followed by dentist for 9 years, finally became cancer and now has been difficult to stop). I never smoked and am negative for HPV, so as I said, I seem to be in a category all my own with the primary tumor in my gum, not linked to smoking. I am thankful that I have been able to bounce back from each surgery and treatment, traveling to Africa multiple times (we have a daughter who does research there). This latest development in the neck is my first metastases, so that is why I'm so curious about the progression this disease might take from here. Again, thank you for taking the time to respond. We're all in this journey together and it's helpful having others like you share your experiences.

I think it's recently becoming more common for some young woman, who are heathy, don't smoke, rarely or never drink, are HPV negative to develop oral or oral tongue cancer for unknown reasons, some thinking it may be genetic or other factors.

As far as stats, my doctors never said any, except for me to make an informed decision in regards to my surgeries, especially carotid, proton radiation, which carried a high risk of stroke, and death, 17%, from just carotid bleed during radiation, and responded in a matter of seconds, even once under sedation right after surgery to have my carotid removed next lol.

Like you, I probably seen most stats, which did help push me in certain directions after my 5th recurrence, and felt certain it would recur with PNI, LVI in a non lymph node tumor, which was removed, and was correct since it did return a month later in the skin, not good either. It also helped me decide on other treatment decisions suggested. I figure this way, stats are used in deciding all of our HNC treatments, and why can't I use them too, but not be fearful of that, hopefully, but more educated, which has helped with unknown fears, which I didn't want to happen again after being incapacitated, isolated for more than a year, and not speaking to anyone about my cancer or even able to access a computer. I believe, I have made up for lost time