Radical Neck Dissection concerns
This is my first post. So let me introduce myself. I am the caregiver, and my husband is the patient. He was diagnosed with Throat and neck cancer in April of last year. He has had 35 radiation treatments equal to 70 Gr, and the radiation oncologist said that he is at a lifetime maximum. After radiation, we waited 3 months for the first PET which came back with SCC still showing in his throat and bilateral lymph nodes. At that time the radiation doctor told us if they continued to grow without treatment he would have 6 months to a year survival rate, we went back to the oncologist who did not believe the radiation doctor would say that. He called him while we were in the room and confirmed. The Oncologist tells us to go to the ENT surgeon we saw last April and had told us at the time it wasn't resectable. Here we are in 11 months without treatment, and he is wasting away sleeps about 18 hours a day, cannot take anything y mouth, and has tumors in his lymph nodes bilaterally, which appear on the PET as a tumor/growth at his skull base, as well as an occluded carotid artery and now has an ulcerated tumor on the left side of his neck as well. We are scheduled for a radical Neck dissection on the 24th, which is scheduled to be 10 hours long, and I am scared to death that I will lose him. The surgeon did not want to do the surgery, and she is concerned with a heart attack or stroke. She has stated that if it is too close to the skull base, she may not get it all. However, we have no other options, as the oncologist said chemo and immune therapy are not options. My husband told the surgeon that it is do or die and she agreed. Does anyone have any advice or experience with this that would help us feel more comfortable?
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Hello and welcome Yolande73. You have presented a rather difficult situation. Let us see who has experience in neck dissection as there are many eyes on this forum. Personally I don't take much stock in PET scans as they are a tool but not a tell-all. They often show scar tissue as cancer. A PET scan three months after radiation? I shan't say more. Mind you I am not a doctor, just a patient.
Is your husband being treated at a cancer center or large hospital or Mayo, etc?
So sorry to hear this. I hope that you are with and at a specialty cancer center that has experience with this. His diagnosis sounds complex and time may be of the essence. If he is not eating then I would hope he has a feeding tube. They are not difficult to manage and one helped save my life. It concerns me when you say the surgeon didn't want to do the surgery. WHAT? Hoping you can get somewhere with a surgeon that wants to do it, has experience and strives for a cure. Best regards,
Hello William, and thank you. He is being treated at a tiny cancer center. Everything is outsourced, though. It is called the Hope Cancer Center. He is the only oncologist in town, and we still had to go 150 miles round trip for chemotherapy. They don't have a full-time clinic up here they are in town 3 days a week, Sorry for the drawn-out answer. So it is not a big clinic but it is supposed to be specialized, He was sent out for radiation to Genesis Care. And again sent out for the ENT at UNLV. He had a total of 6 PETs, 3 CTs w/o contrast and 2 with, 4 fna biopsies, 2 core sample biopsies, and one scoped biopsy where they put him asleep to do it.
Ellen, I'm grateful for your response. He has a feeding tube, which they inserted in his stomach, and a port in his chest before beginning any other treatments. Only the radiation doctor was able to instill in us a sense of confidence. He appears to be the only person who is willing to offer any sort of prognosis, even if it is 6 to 12 months (without treatment). The primary oncologist basically advised him to seize any opportunity that presented itself. It is 50/50, the surgeon told him in April. She referred him back to the oncologist in April after stating that it was beyond treatment, who then forwarded him to the radiation specialist. She is the only surgeon in the state who is qualified to conduct the surgery, making her the only option.
The fact that the doctor warned him about his left lymph node after radiation treatment and said that if it enlarged, the condition would become deadly without treatment, irritates and angers me. He predicted a terminal diagnosis of six to twelve months, and now that it has been eleven months, the surgeon will do a last-ditch operation. Knowing the predicament, she has been sending him for scans and biopsies nonstop for the past 11 months. He has to sit down if he attempts to do anything strenuous, such as carrying the trash can to the street because a huge vein in his right bicep appears like it has small stones rolling up it. She doesn't want to perform the surgery since one of the tumors in his lymph nodes has blocked the Carotid artery. She is really worried that he might suffer a severe heart attack or stroke while lying on the table. She is the best, that's all we're told, and I told them it's simple to be the best when you're the only one!
I'm sorry you and your husband are going through this together. It must be hard.
I am a Mayo Rochester patient. I had a similar situation-throat cancer with 35 doses radiation and chemo in 2019. Radical neck dissection spring 2020. The tumor had wrapped itself round the carotid artery too. They would not do another surgery because the chances for strok,e were too great. I got a second opinion from another Mayo facility and the suregery option there was rejected too for the same reason-too great a stroke risk. (Interesting they estimated it at 10%), I turned to immunotherapies. The first was Keytruda and it worked for about a year…and then it didn't. They tried chemo and radiation again-it almost killed me I was so fatigued. Then as a last ditch effort they put me on another immunotherapy, Opdivo, October 2021. I'm still around. Loving life, but knowing that things could change anytime. Keep advocating, keep asking! You never know when your luck will turn!
@yolande73, this sounds like a very difficult situation. I have had SCC treated with radiation with a targeted IV treatment, multiple surgeries including select neck dissection, and finally 2 years on an Immunotherapy Libtayo. At the moment cancer free after 11 years of treatment. All but the radiation and Immunotherapy infusions have been at Mayo Rochester. It sounds like your options are quite limited where you are located. I don't understand why Immunotherapy is not being offered to him. The Mayo head and neck oncologist Dr. Katharine Price is fantastic. She has prolonged my life and is my hero. Perhaps, since your husband is in such a weak state, you can pursue a second opinion via video visit with Mayo. Or you could have all records sent and have your oncologist do a consult with her. Then if other options are recommended, you can decide about travel for treatment. We drive 600 miles to Minnesota from Ohio because the medical care has been so great. It's not easy, but has been worth it. Good luck to you both.
Thank you for this. I never even thought about a video conference being possible for second opinions!! I am reaching out today to see if we can get one before this surgery, hoping for the best possible outcome. What I don't understand is I take him to Las Vegas for treatment you would think that a city of that size would have more options.