My initial surgery involved a select neck dissection, but while part of the parotid salivary gland was removed for involvement in tumor, the regional lymph nodes were all clear at that time. With positive lymph nodes the surgery might be more extensive than mine was. Radiation followed a month later with a targeted therapy infusion weekly to sensitize the tumor to radiation. I had no real issues with that part of the surgery other than a partially dry mouth which has worsened with time ( 10 years have passed). Radiation caused skin rash and mouth ulceration and big changes to my taste sense. I did not have a feeding tube because I was always able to swallow soft foods and liquids. Have any dental issues addressed prior to radiation with a knowledgable dentist. Mine was not. There was a mixture of Maalox and benadryl and an antifungal called Magic Mouthwash from the oncologist at Univ. of MI which was dispensed and helped with mouth pain. There is also a topical oral lidocaine gel to use for mouth pain. You can lose a lot of weight during the 7 weeks of radiation, but healing starts right away once it is stopped. It takes a months for taste to return to a new normal. There are many remedies available for dry mouth and I continue to find more solutions. Staying hydrated is so important during and after so drinking electrolyte solutions and water helps. I did need IV fluids toward the end of radiation as it was hot summer and I was also nauseated from the chemotherapy. Best of luck to you. I'm glad you can enjoy the holiday before all of this treatment begins.
I have had throat cancer since 2019. I went thru 35X proton beam radiation with chemo. It was gone for 1 PETSCAN and came back. i then had the neck dissection surgery. They thought they had removed all the cancer however the PETSCAN showed the tumor had attached to my carotid artery. They would not risk surgery again to extract it so it's staying with me. They put me on the Keytruda immunotherapy, It worked well worked for about a year with no side effects. I then then went back to chemo with another immunotherapy that nearly wiped me out. I ended up getting a tracheostomy which i had initially refused. They put me on Opdivo as a last resort about a year ago and the cancer has been stable. I've been lucky and could not say what I would have done and not done because it's hard to know the exact results of any therapy. Opdivo Treatments are 1X/month with no side effects. The neck dissection surgery was hard. I had nerve damage to my neck and have edema in my throat, but I'm still going!
Thank you so much for responding. He has regional spread cutaneous squamous cell carcinoma. He will have surgery on Dec 27th to remove the lymph nodes followed by 6 weeks of radiation 5 days a week. Do you have any experience with the surgery of neck dissection and radiation side effects?
Thank you so much
Rebecca
My initial surgery involved a select neck dissection, but while part of the parotid salivary gland was removed for involvement in tumor, the regional lymph nodes were all clear at that time. With positive lymph nodes the surgery might be more extensive than mine was. Radiation followed a month later with a targeted therapy infusion weekly to sensitize the tumor to radiation. I had no real issues with that part of the surgery other than a partially dry mouth which has worsened with time ( 10 years have passed). Radiation caused skin rash and mouth ulceration and big changes to my taste sense. I did not have a feeding tube because I was always able to swallow soft foods and liquids. Have any dental issues addressed prior to radiation with a knowledgable dentist. Mine was not. There was a mixture of Maalox and benadryl and an antifungal called Magic Mouthwash from the oncologist at Univ. of MI which was dispensed and helped with mouth pain. There is also a topical oral lidocaine gel to use for mouth pain. You can lose a lot of weight during the 7 weeks of radiation, but healing starts right away once it is stopped. It takes a months for taste to return to a new normal. There are many remedies available for dry mouth and I continue to find more solutions. Staying hydrated is so important during and after so drinking electrolyte solutions and water helps. I did need IV fluids toward the end of radiation as it was hot summer and I was also nauseated from the chemotherapy. Best of luck to you. I'm glad you can enjoy the holiday before all of this treatment begins.
Thank you so much for responding. He has regional spread cutaneous squamous cell carcinoma. He will have surgery on Dec 27th to remove the lymph nodes followed by 6 weeks of radiation 5 days a week. Do you have any experience with the surgery of neck dissection and radiation side effects?
Thank you so much
Rebecca
I had the surgery after the radiation. It might be better to have the surgery first because radiation reduces the oxygen supply to the tissue.
My surgery caused a permanent loss of sensation in that region of my neck and a lot of persistent and “loud” tingling from the damaged nerves. My sternocleidomastoid muscle was removed on one side. Muscle spasms were bad for a couple of years and still flare up. You have to have physical therapy to get your neck and shoulders straightened out. Therapists will be criticizing your posture a lot. The shoulder on the surgery side will look like it belongs to a bodybuilder because it has to work harder.
As far as radiation, you might lose saliva permanently. No one appreciates saliva until it’s gone. Then you can say “Goodbye teeth” unless you do exactly what the radiologist and dentist tell you to do about oral hygiene and fluoride treatments. I didn’t because I was a young fool. I regret that every day now.
Radiation causes two other side effects: trismus and dysphagia, but in my case they didn’t effect me much until about 30 years after the cobalt treatments. Trismus is another word for lockjaw. It makes dental problems a lot harder to address, so like I said, you should heed the warnings about getting a Water Pic and using it.
Dysphagia is trouble swallowing. I am now on a “soft mechanical/full-liquid” diet. I have not been able to eat “regular” food for at least 5 years. But I was fairly normal for 20 years after radiation. The tissue damage apparently gets worse with age.
If the dysphagia is bad enough, the patient can get a feeding tube but the tubes are controversial. They are supposed to prevent aspiration pneumonia but the evidence of efficacy is less than convincing. I had one for a while and hated it. For one thing, the tube falls out or wears out every six months or so. I am biased against feeding tubes, obviously, but some people do not have a choice, I guess.
Thank you so much for responding. He has regional spread cutaneous squamous cell carcinoma. He will have surgery on Dec 27th to remove the lymph nodes followed by 6 weeks of radiation 5 days a week. Do you have any experience with the surgery of neck dissection and radiation side effects?
Thank you so much
Rebecca
Rebecca, you'll get some helpful tips from members like @sepdvm@ltecato@ascc17@larson1540. @kecm was asking very similar questions and has since had surgery and can also help.
Thank you so much for responding. He has regional spread cutaneous squamous cell carcinoma. He will have surgery on Dec 27th to remove the lymph nodes followed by 6 weeks of radiation 5 days a week. Do you have any experience with the surgery of neck dissection and radiation side effects?
Thank you so much
Rebecca
My husband, 68 , has just been diagnosed with metastatic lip cancer. It has spread to 3 lymph nodes in his neck. He has had a biopsy and CT scan but we don’t see a dr until next week.
I am very worried - does anyone have experience with this cancer?
My husband, 68 , has just been diagnosed with metastatic lip cancer. It has spread to 3 lymph nodes in his neck. He has had a biopsy and CT scan but we don’t see a dr until next week.
I am very worried - does anyone have experience with this cancer?
rebeccac, So sorry to hear you and your husband are having to deal with this. Head and Neck cancer has had some recent advancement in Immunotherapy with new drugs being approved. I would think that surgery, radiation and chemotherapy might be expected initially in his case. Since his is probably skin origin rather than mucous membrane like oral lesions, he may be a candidate for the checkpoint inhibitor Libtayo (Cemiplimab) the drug I am currently on. While my SCC originated in my ear, and lymph nodes were clear initially, I have had multiple metastases in 10 years since initial surgery. I don't know if the Libtayo is approved as an initial treatment. At Mayo Clinic they tested my tumor for the presence of the checkpoint PD-L1 to see if the drug would be expected to work and I tested high. My tumors have disappeared since starting it almost 2 years ago. I can't stress enough about getting a second opinion at a major referral center to get the most complete and thorough medical care. I would not be alive now if not for Mayo Clinic. Good luck to you and your husband. This kind of diagnosis is overwhelming but stay positive, educate yourselves on options, and seek a second opinion.
It is so encouraging to hear of your results. I'm curious as to what insurance you had, as I have not been able to access these treatments despite similar diagnosis.
Sorry for not responding sooner. My insurance is through AMBetter and the Veterans Administration. Has your insurance carrier declined to cover your treatment costs? If so, you can private message me and I will go into detail how, under the ACA, my oncologist obtained payment for all of treatment costs, after the coverage for keytruda was initial denied.
My husband, 68 , has just been diagnosed with metastatic lip cancer. It has spread to 3 lymph nodes in his neck. He has had a biopsy and CT scan but we don’t see a dr until next week.
I am very worried - does anyone have experience with this cancer?
Thanks for the reply and encouragement. Unfortunately I do not have a good primary that will fight for me, nor have I been able to find one. I was hoping to be treated at Mayo, but they do not take my insurance. I am on a Medicare Advantage plan and do not qualify for Medicaid so I probably wouldn't be able to afford the drug co-pays anyway.
This is a very bad system we have, and unfortunately the type of cancer that we're dealing with makes it even more complicated.
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I have had throat cancer since 2019. I went thru 35X proton beam radiation with chemo. It was gone for 1 PETSCAN and came back. i then had the neck dissection surgery. They thought they had removed all the cancer however the PETSCAN showed the tumor had attached to my carotid artery. They would not risk surgery again to extract it so it's staying with me. They put me on the Keytruda immunotherapy, It worked well worked for about a year with no side effects. I then then went back to chemo with another immunotherapy that nearly wiped me out. I ended up getting a tracheostomy which i had initially refused. They put me on Opdivo as a last resort about a year ago and the cancer has been stable. I've been lucky and could not say what I would have done and not done because it's hard to know the exact results of any therapy. Opdivo Treatments are 1X/month with no side effects. The neck dissection surgery was hard. I had nerve damage to my neck and have edema in my throat, but I'm still going!
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3 ReactionsMy initial surgery involved a select neck dissection, but while part of the parotid salivary gland was removed for involvement in tumor, the regional lymph nodes were all clear at that time. With positive lymph nodes the surgery might be more extensive than mine was. Radiation followed a month later with a targeted therapy infusion weekly to sensitize the tumor to radiation. I had no real issues with that part of the surgery other than a partially dry mouth which has worsened with time ( 10 years have passed). Radiation caused skin rash and mouth ulceration and big changes to my taste sense. I did not have a feeding tube because I was always able to swallow soft foods and liquids. Have any dental issues addressed prior to radiation with a knowledgable dentist. Mine was not. There was a mixture of Maalox and benadryl and an antifungal called Magic Mouthwash from the oncologist at Univ. of MI which was dispensed and helped with mouth pain. There is also a topical oral lidocaine gel to use for mouth pain. You can lose a lot of weight during the 7 weeks of radiation, but healing starts right away once it is stopped. It takes a months for taste to return to a new normal. There are many remedies available for dry mouth and I continue to find more solutions. Staying hydrated is so important during and after so drinking electrolyte solutions and water helps. I did need IV fluids toward the end of radiation as it was hot summer and I was also nauseated from the chemotherapy. Best of luck to you. I'm glad you can enjoy the holiday before all of this treatment begins.
I had the surgery after the radiation. It might be better to have the surgery first because radiation reduces the oxygen supply to the tissue.
My surgery caused a permanent loss of sensation in that region of my neck and a lot of persistent and “loud” tingling from the damaged nerves. My sternocleidomastoid muscle was removed on one side. Muscle spasms were bad for a couple of years and still flare up. You have to have physical therapy to get your neck and shoulders straightened out. Therapists will be criticizing your posture a lot. The shoulder on the surgery side will look like it belongs to a bodybuilder because it has to work harder.
As far as radiation, you might lose saliva permanently. No one appreciates saliva until it’s gone. Then you can say “Goodbye teeth” unless you do exactly what the radiologist and dentist tell you to do about oral hygiene and fluoride treatments. I didn’t because I was a young fool. I regret that every day now.
Radiation causes two other side effects: trismus and dysphagia, but in my case they didn’t effect me much until about 30 years after the cobalt treatments. Trismus is another word for lockjaw. It makes dental problems a lot harder to address, so like I said, you should heed the warnings about getting a Water Pic and using it.
Dysphagia is trouble swallowing. I am now on a “soft mechanical/full-liquid” diet. I have not been able to eat “regular” food for at least 5 years. But I was fairly normal for 20 years after radiation. The tissue damage apparently gets worse with age.
If the dysphagia is bad enough, the patient can get a feeding tube but the tubes are controversial. They are supposed to prevent aspiration pneumonia but the evidence of efficacy is less than convincing. I had one for a while and hated it. For one thing, the tube falls out or wears out every six months or so. I am biased against feeding tubes, obviously, but some people do not have a choice, I guess.
Rebecca, you'll get some helpful tips from members like @sepdvm @ltecato @ascc17 @larson1540. @kecm was asking very similar questions and has since had surgery and can also help.
- Anyone had neck dissection surgery? What are your tips? https://connect.mayoclinic.org/discussion/neck-malignant-lymph-node-cancer-recurrence/
Many of these members also have experience with radiation too.
Thank you so much for responding. He has regional spread cutaneous squamous cell carcinoma. He will have surgery on Dec 27th to remove the lymph nodes followed by 6 weeks of radiation 5 days a week. Do you have any experience with the surgery of neck dissection and radiation side effects?
Thank you so much
Rebecca
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1 ReactionHow are you doing, @rebeccac? Did you meet with your husband's doctor to find out next steps for treatment?
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2 Reactionsrebeccac, So sorry to hear you and your husband are having to deal with this. Head and Neck cancer has had some recent advancement in Immunotherapy with new drugs being approved. I would think that surgery, radiation and chemotherapy might be expected initially in his case. Since his is probably skin origin rather than mucous membrane like oral lesions, he may be a candidate for the checkpoint inhibitor Libtayo (Cemiplimab) the drug I am currently on. While my SCC originated in my ear, and lymph nodes were clear initially, I have had multiple metastases in 10 years since initial surgery. I don't know if the Libtayo is approved as an initial treatment. At Mayo Clinic they tested my tumor for the presence of the checkpoint PD-L1 to see if the drug would be expected to work and I tested high. My tumors have disappeared since starting it almost 2 years ago. I can't stress enough about getting a second opinion at a major referral center to get the most complete and thorough medical care. I would not be alive now if not for Mayo Clinic. Good luck to you and your husband. This kind of diagnosis is overwhelming but stay positive, educate yourselves on options, and seek a second opinion.
-
Like -
Helpful -
Hug
2 ReactionsSorry for not responding sooner. My insurance is through AMBetter and the Veterans Administration. Has your insurance carrier declined to cover your treatment costs? If so, you can private message me and I will go into detail how, under the ACA, my oncologist obtained payment for all of treatment costs, after the coverage for keytruda was initial denied.
My husband, 68 , has just been diagnosed with metastatic lip cancer. It has spread to 3 lymph nodes in his neck. He has had a biopsy and CT scan but we don’t see a dr until next week.
I am very worried - does anyone have experience with this cancer?
-
Like -
Helpful -
Hug
1 ReactionThanks for the reply and encouragement. Unfortunately I do not have a good primary that will fight for me, nor have I been able to find one. I was hoping to be treated at Mayo, but they do not take my insurance. I am on a Medicare Advantage plan and do not qualify for Medicaid so I probably wouldn't be able to afford the drug co-pays anyway.
This is a very bad system we have, and unfortunately the type of cancer that we're dealing with makes it even more complicated.
-
Like -
Helpful -
Hug
2 Reactions