1. < Head & Neck Cancer

Concerned Caregiver : Oral SCC lymph nodes involved

Posted by surbhimadan @surbhimadan, 5 days ago

My mother(61) had her surgery to remove primary tumor at right trimolar region, neck dissection which had multiple lymph nodes positive with extra nodal extension and perineural invasion. T1 N3b Mx. Everytime I have been in a doctor visit, doctors have been more sorry and sad than hopeful that she can fight this. Their first reaction is this is bad and it will repeat, followed by there is only radiation and chemo we can try nothing more. I’m here seeking people who had advanced stage cancer and able to fight it out. She will start her RT and chemo next week. I want to know if there is light at the end to this tunnel ?

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | 5 days ago

Hello and welcome. I understand what you are asking. Many of us here have faced a bleak outcome yet here we are. Others, not so fortunate.
We are patients, former and current. We help where we can by the experience we have had. We cannot and will not give medical advice per se, yet we also don’t roll over and surrender.
It’s likely the vibe from the doctors is more to the serious concerns involved in treatment. It isn’t an easy path nor is it an end. However, that being said, if the medical team is inexperienced with head and neck cancers specifically, then seek help elsewhere.
Personally, when I read about lymph node search going beyond the near periphery of the tumor, I begin to question the purpose.
If the cancer is HPV based, certain drugs have been successful in clearing the cancer from the system. Could you find the biopsy results and let me know?
The details, I and others here can walk with you on this path. Courage.

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Mentor
Sue, Volunteer Mentor | @sepdvm | 3 days ago

Hello @surbhimadan.
I second everything that hrhwilliam has said. He has more experience in oral cancer and the surgery needed. I highly recommend seeing a head and neck oncologist, not just a general oncologist who also sees head and neck. You may have to travel for that. Asking for a referral to a large cancer center or referral teaching hospital is very reasonable with this negativity by her doctors. I drive 10 hours to Mayo Clinic in Rochester MN for the wonderful head and neck oncologist and great ENT surgeons who are treating my ear based metastatic SCC. 30 years ago we found a surgeon at Ohio State James Cancer Center who could do a surgical procedure for my dad's oral SCC that no one locally was doing. And there are new treatments available now especially with immunotherapy that are recently approved for either recurrences or even original treatment. I have finished one drug 2 years ago that I was on for 2 years and it has successfully caused my immune system to destroy the kidney and lymph node metastases that had developed. So there is always hope. You need to be at the right place to be offered the best treatment. Also researching complementary therapies to enhance your immune system, improving your diet, etc can all help in your response to treatment. Purchase this book......it is one I have shared with many people and use the suggestions daily for 13 years: How Not to be My Patient by Dr. Ed Creagan, a Mayo palliative care physician. The more educated you both are about her condition and treatment options, the better you can discuss it with your doctors for your best outcome. How far are you from MN?

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1 reply
surbhimadan | @surbhimadan | 2 days ago
In reply to @sepdvm "Hello @surbhimadan. I second everything that hrhwilliam has said. He has more experience in oral cancer..." + (show)
@sepdvm

Hello @surbhimadan.
I second everything that hrhwilliam has said. He has more experience in oral cancer and the surgery needed. I highly recommend seeing a head and neck oncologist, not just a general oncologist who also sees head and neck. You may have to travel for that. Asking for a referral to a large cancer center or referral teaching hospital is very reasonable with this negativity by her doctors. I drive 10 hours to Mayo Clinic in Rochester MN for the wonderful head and neck oncologist and great ENT surgeons who are treating my ear based metastatic SCC. 30 years ago we found a surgeon at Ohio State James Cancer Center who could do a surgical procedure for my dad's oral SCC that no one locally was doing. And there are new treatments available now especially with immunotherapy that are recently approved for either recurrences or even original treatment. I have finished one drug 2 years ago that I was on for 2 years and it has successfully caused my immune system to destroy the kidney and lymph node metastases that had developed. So there is always hope. You need to be at the right place to be offered the best treatment. Also researching complementary therapies to enhance your immune system, improving your diet, etc can all help in your response to treatment. Purchase this book......it is one I have shared with many people and use the suggestions daily for 13 years: How Not to be My Patient by Dr. Ed Creagan, a Mayo palliative care physician. The more educated you both are about her condition and treatment options, the better you can discuss it with your doctors for your best outcome. How far are you from MN?

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Thank you very much for your detailed thoughts on my concern and for sharing your experience.

I am based out of CA on the West Coast, but my parents are in India, so we are getting primary care there as they will be out of Insurance in the US. While the doctor is open to immunotherapy, it did sound like it is not the first line of treatment and until scan/MRI shows additional problem beyond what surgery report has been.
I have been to 5-6 doctors around, and it seems there is a guideline in India that doctors are likely to adhere to. I didn't think about focusing on head and neck oncologists before. I will look into it. Do you know if doctors in Mayo Clinic in Rochester MN would do tele-call for a second opinion?

Thank you for the suggestion on the book as well.

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Mentor
Sue, Volunteer Mentor | @sepdvm | 3 hours ago
In reply to @surbhimadan "Thank you very much for your detailed thoughts on my concern and for sharing your experience...." + (show)
@surbhimadan

Thank you very much for your detailed thoughts on my concern and for sharing your experience.

I am based out of CA on the West Coast, but my parents are in India, so we are getting primary care there as they will be out of Insurance in the US. While the doctor is open to immunotherapy, it did sound like it is not the first line of treatment and until scan/MRI shows additional problem beyond what surgery report has been.
I have been to 5-6 doctors around, and it seems there is a guideline in India that doctors are likely to adhere to. I didn't think about focusing on head and neck oncologists before. I will look into it. Do you know if doctors in Mayo Clinic in Rochester MN would do tele-call for a second opinion?

Thank you for the suggestion on the book as well.

Jump to this post

Yes I do know that they do video visits and the Head and Neck Oncologist Dr. Katharine Price at Mayo Rochester is a wonderful knowledgable doctor. Her directions for my initial chemotherapy with radiation were followed at the University of Michigan where I was treated for 7 weeks. She has also corresponded with my local oncologist when I had immunotherapy here at home.

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