Meet others living with Head & Neck Cancer - Come introduce yourself

Welcome to the Head and Neck Cancer group.
This is a welcoming, safe place where you can meet other people who are living with head and neck cancer. Let’s learn from each other and share experiences from diagnosis through treatment and coping with symptoms and recovery challenges.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentors @adriennef and @alpaca and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

As you know, head and neck cancer is the general term for a broad group of cancers that begin in the head and neck region. This include oropharyngeal cancer, hypopharyngeal cancer, laryngeal cancer, lip and oral cavity cancer, nasopharyngeal cancer, paranasal sinus and nasal cavity cancer, salivary gland cancer, squamous cell neck cancer, soft tissue sarcoma or thyroid cancer.

Let’s get to know one another. Why not start by introducing yourself? What type of cancer have you been diagnosed with?

@alpaca

Hello @mary76 I have had recurrent tongue cancer which is a bit different and was treatable with more surgery and some radiotherapy. A fellow New Zealand patient has had good results from stereotactic radiotherapy to the lesions on her lungs and Keytruda, the immunotherapy drug. I have heard that 20% of patients with metastatic head and neck or oropharangeal cancer respond well to these immunotherapy drugs. I'm not an expert and don't know your situation it seems there are options out there.
I'm really sorry to hear this has happened to you. It is gut-wrenching, I know. You are doing the right thing by reaching out and asking questions. I found I needed counselling when the cancer came back. It helped a lot.

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Hi Maureen: Have you heard of hearing loss due to radiation treatment?

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@rossfee,Yes! It's usually from chemo (Cisplatin) isn't it, but radiation near the ear can cause it too from what I can see. We have a problem in New Zealand where our medical care is free but hearing aids aren't funded even if hearing loss is caused by treatment.

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Thanks for your reply. I did not have chemotherapy but I did have proton radiation treatment.

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My sister (in her mid 60s) has angiosarcoma of the scalp. She had surgery & flap reconstruction and is healing well. Now, even tho the surgeon told her he removed all the cancer, she’s been made aware that radiation is most likely in her future.
Has anyone else been diagnosed with this rare & aggressive cancer? I know she would benefit to know she’s not alone. I just want to help her.

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@grizz20

My sister (in her mid 60s) has angiosarcoma of the scalp. She had surgery & flap reconstruction and is healing well. Now, even tho the surgeon told her he removed all the cancer, she’s been made aware that radiation is most likely in her future.
Has anyone else been diagnosed with this rare & aggressive cancer? I know she would benefit to know she’s not alone. I just want to help her.

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Hello @grizz20, I do not know anyone and had to look this cancer up.
However, I do know that radiation is often considered a good way of mopping
up any stray cells after successful surgery. On the scalp, the radiotherapy
should not be too bad, compared to those of us who experience its effects
in the mouth.

It sounds to me as if your sister is fortunate that the cancer was found in
an early stage and could be removed.

It's hard for people with rare diseases to find peers. There might be a
rare diseases group here but as far as having surgery and radiation to the
head and neck go, we are you group! I wish your sister well.

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HI, my name is Truman. I have had 6 kinds of cancer: prostate, squamous, atypical squamous, melanoma, spindle cell and basal. I cannot recall how many excisions I have had. My current concern is spindle cell metastasizing. Any good advice? :<)

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@trauman

HI, my name is Truman. I have had 6 kinds of cancer: prostate, squamous, atypical squamous, melanoma, spindle cell and basal. I cannot recall how many excisions I have had. My current concern is spindle cell metastasizing. Any good advice? :<)

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I have no idea of any way I can help – just am not acquainted with that
type. Hope all works out for you – you have had more than your share.

Mary Helen Duggar

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@grizz20

My sister (in her mid 60s) has angiosarcoma of the scalp. She had surgery & flap reconstruction and is healing well. Now, even tho the surgeon told her he removed all the cancer, she’s been made aware that radiation is most likely in her future.
Has anyone else been diagnosed with this rare & aggressive cancer? I know she would benefit to know she’s not alone. I just want to help her.

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Hi @grizz20, we have several members on Mayo Clinic Connect who have experience with angiosarcoma. You may be interested in connecting with them in this discussion:
– Diagnosed with sarcoma? Let's share https://connect.mayoclinic.org/discussion/diagnosed-with-sarcoma-lets-share/

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@trauman

HI, my name is Truman. I have had 6 kinds of cancer: prostate, squamous, atypical squamous, melanoma, spindle cell and basal. I cannot recall how many excisions I have had. My current concern is spindle cell metastasizing. Any good advice? :<)

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Hi @trauman, welcome to Mayo Clinic Connect. Wow, you've had more than your fair share of cancer. Were the squamous, atypical squamous, melanoma, spindle and basal cell carcinomas all in the head and neck region?

Where has the spindle cell carcinoma spread? What treatment is being suggested?

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Coleen:

Thanks for the response!

All were in the head, neck and upper chest. All, including melanoma, have been successfully excised until the Spindle came along. It was first diagnosed and excised in the inside front of the right ear. It has spread to the other side and skin adjacent to the ear. I have had four excisions on that ear, all types cancer excisions have used MOHS.

I have had MRI, CAT and PET (oncologist Dr. will share results of PET next week). Having upper GI 5th. I have: Splenomegaly (over sized spleen, MRI showed some other abnormalities) with the notation (Splenectomy) in my Dr's records. The skin surgeon who did the graft has emphasized that a repeat of cancer in that area would require removal of a good portion of the ear (no sweat, just get it all). The latest "strip search" last week (4 per year) had two biopsies — one behind the right ear (from my observation and experiences it is another active site), results should come any day.

I do not keep "score" on excisions, just types.

All of the test results have not come in, nor has a decision been made about long term treatment. At this point my decision is to have my oncologist direct all treatment.

My personal opinion: The sooner diagnosed and treated, the best chance for success. Physical and mental health are directly related — keep activities and relationships that are pleasing. Keep exercised and body strength up. Do NOT take any "natural" substances without Dr.'s approval.

If anybody has any experiences or successful treatment of this condition, I would appreciate any input. I know the cause of mine, have had successful removal of repeated various types for 18 years until the Spindle came to visit.

Cancer does not run in my family nor any of my cousins. I have gotten paranoid and spooked now by the Spindle! :<)

Truman

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Squamous cell neck

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@karenj6738

Squamous cell neck

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Hi @karenj6738, welcome to Mayo Clinic Connect. From you message, I believe you have squamous cell carcinoma in the neck region. Is that correct?

When were you diagnosed? Have you had any treatments yet?

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@trauman

Coleen:

Thanks for the response!

All were in the head, neck and upper chest. All, including melanoma, have been successfully excised until the Spindle came along. It was first diagnosed and excised in the inside front of the right ear. It has spread to the other side and skin adjacent to the ear. I have had four excisions on that ear, all types cancer excisions have used MOHS.

I have had MRI, CAT and PET (oncologist Dr. will share results of PET next week). Having upper GI 5th. I have: Splenomegaly (over sized spleen, MRI showed some other abnormalities) with the notation (Splenectomy) in my Dr's records. The skin surgeon who did the graft has emphasized that a repeat of cancer in that area would require removal of a good portion of the ear (no sweat, just get it all). The latest "strip search" last week (4 per year) had two biopsies — one behind the right ear (from my observation and experiences it is another active site), results should come any day.

I do not keep "score" on excisions, just types.

All of the test results have not come in, nor has a decision been made about long term treatment. At this point my decision is to have my oncologist direct all treatment.

My personal opinion: The sooner diagnosed and treated, the best chance for success. Physical and mental health are directly related — keep activities and relationships that are pleasing. Keep exercised and body strength up. Do NOT take any "natural" substances without Dr.'s approval.

If anybody has any experiences or successful treatment of this condition, I would appreciate any input. I know the cause of mine, have had successful removal of repeated various types for 18 years until the Spindle came to visit.

Cancer does not run in my family nor any of my cousins. I have gotten paranoid and spooked now by the Spindle! :<)

Truman

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My husband has SCC – spindle. Research shows that the SCC is frequently found in kidney transplant recipients about 2 years in. My husband received a living donor transplant in Oct 2012. The immunosuppression encourages the cancer growth.

It started as a quarter sized lesion on the top of his head summer 2014. His regular dermatologist sent him to a Mohs surgeon. The Mohs surgeries became an almost weekly affair. The Mohs surgeon arranged for us to come to Mayo. In the summer of 2015, the top of his scalp was resected and replaced with a flap at Mayo J'ville. The cancer kept coming. More surgeries and lots of radiation. Finally the surgeon at Mayo said "no more surgery. You have to have a systemic approach, otherwise we are chasing ghosts."

Our focus had been on saving the kidney, because we were told from the beginning that chemo might kill the kidney, and immunotherapy would definitely kill the kidney. Again, the transplant drugs were feeding the cancer, so it Aug 2016 he stopped taking them. We knew that only a very, very small percentage of people can retain the transplant without the drugs. It was only a matter of time. In Sept 2016, he began Erbitux and we came home. The Erbitux had limited sucess on the surface tumors, but the cancer metastasized to include tumors in the liver and diaphragm. His transplanted kidney began to fail in December 2016, and by March 2017 we trained for home hemo-dialysis. We did that for 1 1/2 yrs and then he went in-center because I just could not do it anymore.

In May 2017, a tumor board made up of local doctors met and they decided to try Keytruda which was approved for head and neck cancers. It was a miracle. The PET scans have only shown "pop up" cancers since then. The first of this year he was switched to Libtayo. Libtayo is basically the same as Keytruda, but specifically designed for squamous cell cancers. It was not available when he began the Keytruda.

My husband has not had any detectable side-effects from Keytruda or Libtayo, because they use his own immune system to fight the cancer. Dialysis, while scary in the beginning, is something which 400,000 people live with every day. The pain and general debilitation which my husband deals with are the result of all the surgeries and radiation which lead up to the systemic treatment he has now. I'm not a medical professional by any means, but I encourage you to pursue the systemic treatment if that is what your oncologist recommends.

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@rossfee

Hi Maureen: Have you heard of hearing loss due to radiation treatment?

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Yes, we thought it was the radiation, but then found that it was EARWAX. Clean the ears first!

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@colleenyoung

Hi @karenj6738, welcome to Mayo Clinic Connect. From you message, I believe you have squamous cell carcinoma in the neck region. Is that correct?

When were you diagnosed? Have you had any treatments yet?

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I had Adenoid Cystic carcinoma in the right salivary gland. I had the stage 4 tumor removed and completed 16 treatments of neutron beam radiation at the University of Washington in 2001. I will be 19 years cancer free on June 26th.

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