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Hyalinizing clear cell carcinoma (HCCC): Need advice

Posted by millielambert Millie Lambert @millielambert, Apr 9, 2023

I have a very rare form of clear cell carcinoma that stated with a tumor in the palate of my mouth. It has now spread to my throat and lungs. It is growing and spreading very quickly. Is there anyone who has this for of clear cell carcinoma? I need advice and support and direction.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 10, 2023

Hi @millielambert, welcome. You'll notice that I moved your message to the Head & Neck Support Group here: https://connect.mayoclinic.org/group/head-neck-cancer/

I did this so that you can more easily meet others who have cancers of the head and neck region like @hrhwilliam @nnurse @jano @sepdvm @alpaca and more.

Hyalinizing clear cell carcinoma is a very rare form of head and neck cancer, most commonly starting in the salivary glands. I'm sorry to hear that your cancer is spreading and quickly. What treatment is your cancer team suggesting?

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sepdvm | Apr 10, 2023

Hello @millielambert, I do not have that form of head and neck cancer, but have been fighting H&N cancer for 11 years at Mayo Clinic, Rochester MN. My advice for you with such a rare cancer is to pursue treatment at a large cancer referral center. The medical staff there will be better able to give you your best options. Even if only for a video visit second opinion, get all the information that you can. There are new therapies being approved all the time and the cancer centers like Mayo, Johns Hopkins, Memorial Sloan Kettering to name a few are going to have the newest information. Good luck to you.

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1 reply
millielambert Millie Lambert | @millielambert | Apr 10, 2023
In reply to @sepdvm "Hello @millielambert, I do not have that form of head and neck cancer, but have been..." + (show)
@sepdvm

Hello @millielambert, I do not have that form of head and neck cancer, but have been fighting H&N cancer for 11 years at Mayo Clinic, Rochester MN. My advice for you with such a rare cancer is to pursue treatment at a large cancer referral center. The medical staff there will be better able to give you your best options. Even if only for a video visit second opinion, get all the information that you can. There are new therapies being approved all the time and the cancer centers like Mayo, Johns Hopkins, Memorial Sloan Kettering to name a few are going to have the newest information. Good luck to you.

Jump to this post

Thank you for responding. I am I. Fact going to MD Anderson Cancer Center in Houston tomorrow for a second opinion. Hopefully I will get some answers and be able to proceed with treatment after 1 1/2 years since diagnosis. Thank you again, Millie

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1 reply
millielambert Millie Lambert | @millielambert | Apr 10, 2023
In reply to @colleenyoung "Hi @millielambert, welcome. You'll notice that I moved your message to the Head & Neck Support..." + (show)
@colleenyoung

Hi @millielambert, welcome. You'll notice that I moved your message to the Head & Neck Support Group here: https://connect.mayoclinic.org/group/head-neck-cancer/

I did this so that you can more easily meet others who have cancers of the head and neck region like @hrhwilliam @nnurse @jano @sepdvm @alpaca and more.

Hyalinizing clear cell carcinoma is a very rare form of head and neck cancer, most commonly starting in the salivary glands. I'm sorry to hear that your cancer is spreading and quickly. What treatment is your cancer team suggesting?

Jump to this post

My oncologist in Kalamazoo already tried having genome matches in Chicago but there were less than 1 % success matches. She is now suggesting a form of immunotherapy and I an going to MD Anderson tomorrow for a second opinion. Thanks for responding. I have been very lost throughout this process.

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sm22 | @sm22 | Apr 22, 2023

I am so sorry to hear this. I have have/had endometrial clear cell cancer stage IIIEC I don’t know what the treatment is for your specific type but I have been hearing good things about Keytruda. Sending you thoughts of health and healing.

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singlelady61 | @singlelady61 | Apr 23, 2023

I will be getting my first dose of Keytruda this coming week. Along with radiation. What can I expect from the Keytruda?

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 4, 2023
In reply to @millielambert "Thank you for responding. I am I. Fact going to MD Anderson Cancer Center in Houston..." + (show)
@millielambert

Thank you for responding. I am I. Fact going to MD Anderson Cancer Center in Houston tomorrow for a second opinion. Hopefully I will get some answers and be able to proceed with treatment after 1 1/2 years since diagnosis. Thank you again, Millie

Jump to this post

How are you doing, Millie. Did you get the second opinion yet?

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