1. < Head & Neck Cancer
Moderator

Meet others living with Head & Neck Cancer: Introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Nov 13, 2017

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.

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 or ameloblastoma.

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

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 27, 2020
In reply to @trauman "HI, my name is Truman. I have had 6 kinds of cancer: prostate, squamous, atypical squamous,..." + (show)
@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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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 27, 2020
In reply to @grizz20 "My sister (in her mid 60s) has angiosarcoma of the scalp. She had surgery & flap..." + (show)
@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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Mary Helen | @maryhelen | Jan 27, 2020
In reply to @trauman "HI, my name is Truman. I have had 6 kinds of cancer: prostate, squamous, atypical squamous,..." + (show)
@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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trauman | @trauman | Jan 27, 2020

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? :<)

REPLY
2 replies
Maureen, Alumna Mentor | @alpaca | Jan 23, 2020
In reply to @grizz20 "My sister (in her mid 60s) has angiosarcoma of the scalp. She had surgery & flap..." + (show)
@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&apos;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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grizz20 | @grizz20 | Jan 23, 2020

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.

REPLY
2 replies
rossfee | @rossfee | Dec 11, 2019

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

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Maureen, Alumna Mentor | @alpaca | Dec 11, 2019

@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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rossfee | @rossfee | Dec 11, 2019
In reply to @alpaca "Hello @mary76 I have had recurrent tongue cancer which is a bit different and was treatable..." + (show)
@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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1 reply
rossfee | @rossfee | Dec 11, 2019
In reply to @colleenyoung "@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace Welcome..." + (show)
@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don't forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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Hi Colleen: Do you know people who have lost hearing due to radiation treatment for head and neck cancers?

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