Newly diagnosed tongue cancer. Squamous tongue showed up in a lesion on back of tongue no evidence of any a palpable tumor or swollen lymph nodes any ideas or recommendations would be appreciated
Recently diagnosed with squamous tongue cancer. It showed up as a lesion on tongue. No evidence of palpable tumor or swollen lymph nodes they want to remove it with a laser any ideas ? Thanks
Newly diagnosed tongue cancer. Squamous tongue showed up in a lesion on back of tongue no evidence of any a palpable tumor or swollen lymph nodes any ideas or recommendations would be appreciated
I would certainly discuss the adverse events associated with that laser surgery, and depending on that discussion, choose to follow through with their recommendation. A second opinion is always valuable too. Other questions to ask include size of tumor? ....is it necessary to shrink tumor with chemo prior to surgery?....long term effects from laser surgery?...followup treatments recommended afterwards? Laser surgery is usually a very rapid healing compared to regular surgery. I would just want to know what to expect in terms of tongue function and swallowing afterward. Good luck with this.
Radiation and chemotherapy. Mine started out as HPV 16 positive tumor lower tongue and right tonsil area. Could not get reduced radiation so I have been trying to get into a clinical trial or better yet you immuno therapy. However now I have a mass that has turned to t4 n3, this was after almost a year and a half of slow progression. I was trying to get into the Keytruda trial that was being offered , but my insurance is not accepted for the testing so I cannot even try to get in. I might just as well have taken the excessive radiation and chemo and dealt with the toxicity if this were to be the case. Obviously, I didn't understand how the system worked. Or should I say how it doesn't. I don't mean to sound bitter, but I am angry that I was not given either opportunity or any choices. It was, after all, my life.
Of the two patients at the immune therapy clinic that I attend, both with tonsillar SCC, The one who did the aggressive radiation with chemo has done better than the one who tried to avoid, tried low dose radiation, etc. My SCC was ear origin, not oral, but radical surgery plus radiation with targeted therapy has controlled the initial site. Unfortunately I have had metastases, but this is being managed well at Mayo Clinic Rochester MN. Medicare is paying for my current treatment on Libtayo, a drug that works similar to Keytruda. I will also mention a complementary immune therapy I have done in the Bahamas for 10 years, Quantumimmunotherapy.net is the website. Insurance will not usually pay for that either unfortunately. It sounds like you need a doctor who fights on your behalf with the insurance company. A second opinion might be valuable at this point and it is usually covered by insurance. Try a big cancer center. Good luck with this fight. Don't give up.
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.
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?
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?
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.
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?
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I was diagnosed to squamous tongue cancer what do you recommend ? They want to cut it out with a lazer?
Newly diagnosed tongue cancer. Squamous tongue showed up in a lesion on back of tongue no evidence of any a palpable tumor or swollen lymph nodes any ideas or recommendations would be appreciated
Recently diagnosed with squamous tongue cancer. It showed up as a lesion on tongue. No evidence of palpable tumor or swollen lymph nodes they want to remove it with a laser any ideas ? Thanks
I would certainly discuss the adverse events associated with that laser surgery, and depending on that discussion, choose to follow through with their recommendation. A second opinion is always valuable too. Other questions to ask include size of tumor? ....is it necessary to shrink tumor with chemo prior to surgery?....long term effects from laser surgery?...followup treatments recommended afterwards? Laser surgery is usually a very rapid healing compared to regular surgery. I would just want to know what to expect in terms of tongue function and swallowing afterward. Good luck with this.
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Helpful -
Hug
1 ReactionOf the two patients at the immune therapy clinic that I attend, both with tonsillar SCC, The one who did the aggressive radiation with chemo has done better than the one who tried to avoid, tried low dose radiation, etc. My SCC was ear origin, not oral, but radical surgery plus radiation with targeted therapy has controlled the initial site. Unfortunately I have had metastases, but this is being managed well at Mayo Clinic Rochester MN. Medicare is paying for my current treatment on Libtayo, a drug that works similar to Keytruda. I will also mention a complementary immune therapy I have done in the Bahamas for 10 years, Quantumimmunotherapy.net is the website. Insurance will not usually pay for that either unfortunately. It sounds like you need a doctor who fights on your behalf with the insurance company. A second opinion might be valuable at this point and it is usually covered by insurance. Try a big cancer center. Good luck with this fight. Don't give up.
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Like -
Helpful -
Hug
3 ReactionsThanks 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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Like -
Helpful -
Hug
2 ReactionsMy 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 ReactionSorry 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.
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.
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Helpful -
Hug
2 ReactionsHow are you doing, @rebeccac? Did you meet with your husband's doctor to find out next steps for treatment?
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2 Reactions