1. < Head & Neck Cancer

Diagnosed with Ameloblastoma

Posted by caw @caw, Nov 9, 2021

Reaching out to anyone else wanting to connect with others diagnosed with Ameloblastoma and the journey involved.

My background, diagnosed February 2021, segmental mandibulectomy, fibula free flap March 2021.

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

Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Mar 21, 2023
In reply to @anbar04 "@hrhwilliam Thank you for the support and quote! I have been doing lots of research which..." + (show)
@anbar04

@hrhwilliam
Thank you for the support and quote! I have been doing lots of research which can be quite daunting at times. I think my main fear is the fact that will I ever be the same again after the surgery both physically and mentally? How long did it take for you to confidently say you have fully recovered?

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Fully recovered I would say about eighteen months. I am quite a bit older than you so my recovery would likely take longer. I had phantom pains (actually occasionally still do) in my jaw and face, still not completely used to the area where there is no nerve feeling (numbness), and if I bite into something hard such as an apple, I may have a sharp pain. The bite pain I would think comes from the stress on the smaller size and flexibility of the new bone, which is not as rigid as the mandible. So I slice an apple with a knife and all is good. I also find it very difficult to play a bugle as my lips do not respond as before due to lack of nerve in the lower left lip. I'm working on it.
No, you probably will never be the same again. I think in many ways you will be stronger and understanding of the frailty of life. I wouldn't wish this operation on anyone. But just know, you will be fine, you will recover, and you will smile once again. Caveat: You might end up with a bit of a pirate smile, which is really cool.

REPLY
1 reply
anbar04 | @anbar04 | Mar 21, 2023
In reply to @hrhwilliam "Fully recovered I would say about eighteen months. I am quite a bit older than you..." + (show)
@hrhwilliam

Fully recovered I would say about eighteen months. I am quite a bit older than you so my recovery would likely take longer. I had phantom pains (actually occasionally still do) in my jaw and face, still not completely used to the area where there is no nerve feeling (numbness), and if I bite into something hard such as an apple, I may have a sharp pain. The bite pain I would think comes from the stress on the smaller size and flexibility of the new bone, which is not as rigid as the mandible. So I slice an apple with a knife and all is good. I also find it very difficult to play a bugle as my lips do not respond as before due to lack of nerve in the lower left lip. I'm working on it.
No, you probably will never be the same again. I think in many ways you will be stronger and understanding of the frailty of life. I wouldn't wish this operation on anyone. But just know, you will be fine, you will recover, and you will smile once again. Caveat: You might end up with a bit of a pirate smile, which is really cool.

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@hrhwilliam
I really appreciate the advice it makes me feel a lot less alone and normalises the tumour for me in my brain. The phantom pains do sound annoying but I am sure it’s bearable compared to pain I experience now. I hope your mouth is better with the bugle in no time and the pirate smile makes others smile!

I was also wondering how bad are the scars and how long do they take to fade? Did you have to meet a councillor before the operation?

REPLY
2 replies
caw | @caw | Mar 23, 2023
In reply to @anbar04 "@hrhwilliam I really appreciate the advice it makes me feel a lot less alone and normalises..." + (show)
@anbar04

@hrhwilliam
I really appreciate the advice it makes me feel a lot less alone and normalises the tumour for me in my brain. The phantom pains do sound annoying but I am sure it’s bearable compared to pain I experience now. I hope your mouth is better with the bugle in no time and the pirate smile makes others smile!

I was also wondering how bad are the scars and how long do they take to fade? Did you have to meet a councillor before the operation?

Jump to this post

I'm also 2 years out and feel like I'm still recovering. I've been back to work and doing all the normal things since the 3 month mark but still working through the adaptation process. I also have struggled with my self confidence afterwards. I lost 35 lbs and at my age (52) it really affected how thin my face got which, bothers me. I strongly recommend a counselor. I've been working with someone for the past year and it is very helpful. I also work with PT and speech to help me work through some of those issues. My scars are very faded at this 2 year point. People that I have met now don't even know anything happened and are surprised to hear all I've been through.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 3, 2023
In reply to @anbar04 "Hey guys, I am an 18 year old girl who was diagnosed with ameloblastoma in my..." + (show)
@anbar04

Hey guys, I am an 18 year old girl who was diagnosed with ameloblastoma in my right mandible in November 2021. I am currently heading to an appointment on Thursday for a final decision on if they will do the jaw reconstruction or if they will simply take the tumour out and put in a metal plate to see if it comes back. I am currently feeling very overwhelmed and scared and I just wanted to ask how any of you guys coped. I feel as though none of my family or friends can understand but i appreciate them trying. Thank you so much

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Hi @anbar04, I'd like to add my belated welcome. I love the support you've found with @hrhwilliam and @caw. Being diagnosed with cancer is tough, but at 18 years old really sucks.

If you would like to connect with other young adults dealing with cancer, you can also join this support group on Connect:
– Adolescent & Young Adult (AYA) Cancer support group https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/

There is also a monthly Zoom support group you might be interested in:
– YA, Me Too: Young Adult Cancer Support Group Meeting https://connect.mayoclinic.org/event/aya-adolescents-and-young-adults-support-group-3/
The group meets the first Thursday of the month and next meeting is April 6.

What was the decision that you made with your team? Will they do the jaw reconstruction or take the tumour out and put in a metal plate? How are you feeling?

REPLY
2 replies
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Apr 4, 2023
In reply to @anbar04 "@hrhwilliam I really appreciate the advice it makes me feel a lot less alone and normalises..." + (show)
@anbar04

@hrhwilliam
I really appreciate the advice it makes me feel a lot less alone and normalises the tumour for me in my brain. The phantom pains do sound annoying but I am sure it’s bearable compared to pain I experience now. I hope your mouth is better with the bugle in no time and the pirate smile makes others smile!

I was also wondering how bad are the scars and how long do they take to fade? Did you have to meet a councillor before the operation?

Jump to this post

Sorry for the delay in getting back to you. My scar, although about six inches long, is not really noticeable unless I turn my head away from the observer. I do also have a bit of a tissue lump under my chin. At my age and for what I have been through I really don't let it bother me. I am who I am on the inside and as long as I don't gross people out, it's all good. Now of course the leg scar where they got the bone implant from is a nice long zipper line which occasionally draws comments at the beach or golf course. I have toyed with the idea of getting either a fish head tattoo or a zipper pull tattoo but for now I simply say to the curious when asked "just don't swim with sharks." That usually puts a stop to such personal invasion. Still working on the bugle.
I hope all goes well with you. In the end you should be far better off and that is what really matters. You have a long life ahead and you should have the best life you can. Good luck.

REPLY
1 reply
anbar04 | @anbar04 | Apr 4, 2023
In reply to @colleenyoung "Hi @anbar04, I'd like to add my belated welcome. I love the support you've found with..." + (show)
@colleenyoung

Hi @anbar04, I'd like to add my belated welcome. I love the support you've found with @hrhwilliam and @caw. Being diagnosed with cancer is tough, but at 18 years old really sucks.

If you would like to connect with other young adults dealing with cancer, you can also join this support group on Connect:
– Adolescent & Young Adult (AYA) Cancer support group https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/

There is also a monthly Zoom support group you might be interested in:
– YA, Me Too: Young Adult Cancer Support Group Meeting https://connect.mayoclinic.org/event/aya-adolescents-and-young-adults-support-group-3/
The group meets the first Thursday of the month and next meeting is April 6.

What was the decision that you made with your team? Will they do the jaw reconstruction or take the tumour out and put in a metal plate? How are you feeling?

Jump to this post

@colleenyoung1

Thank you so much for all the support and the welcome, i appreciate it more than I can ever express on text. They decided to do a full jaw reconstruction with the fibula free help in June after my exams. I feel nervous but also relieved that I know which direction I am heading in, I think I just feel quite scared.

REPLY
1 reply
anbar04 | @anbar04 | Apr 4, 2023
In reply to @hrhwilliam "Sorry for the delay in getting back to you. My scar, although about six inches long,..." + (show)
@hrhwilliam

Sorry for the delay in getting back to you. My scar, although about six inches long, is not really noticeable unless I turn my head away from the observer. I do also have a bit of a tissue lump under my chin. At my age and for what I have been through I really don't let it bother me. I am who I am on the inside and as long as I don't gross people out, it's all good. Now of course the leg scar where they got the bone implant from is a nice long zipper line which occasionally draws comments at the beach or golf course. I have toyed with the idea of getting either a fish head tattoo or a zipper pull tattoo but for now I simply say to the curious when asked "just don't swim with sharks." That usually puts a stop to such personal invasion. Still working on the bugle.
I hope all goes well with you. In the end you should be far better off and that is what really matters. You have a long life ahead and you should have the best life you can. Good luck.

Jump to this post

@hrhwilliam

That’s ok I have been really busy lately as well. I think now that I know what procedure I have to undergo I do feel a bit panicked over everything that will happen, did the scars take long to fade. I am however excited to shut down nosy people! I think a fish head tattoo would be really cool as well. Thank you for the support I know I will be ok it’s just about getting there!

REPLY
anbar04 | @anbar04 | Apr 4, 2023
In reply to @colleenyoung "Hi @anbar04, I'd like to add my belated welcome. I love the support you've found with..." + (show)
@colleenyoung

Hi @anbar04, I'd like to add my belated welcome. I love the support you've found with @hrhwilliam and @caw. Being diagnosed with cancer is tough, but at 18 years old really sucks.

If you would like to connect with other young adults dealing with cancer, you can also join this support group on Connect:
– Adolescent & Young Adult (AYA) Cancer support group https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/

There is also a monthly Zoom support group you might be interested in:
– YA, Me Too: Young Adult Cancer Support Group Meeting https://connect.mayoclinic.org/event/aya-adolescents-and-young-adults-support-group-3/
The group meets the first Thursday of the month and next meeting is April 6.

What was the decision that you made with your team? Will they do the jaw reconstruction or take the tumour out and put in a metal plate? How are you feeling?

Jump to this post

@colleenyoung

Would I still be able to join the young adult support group when though my tumour is non-cancerous?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 4, 2023
In reply to @anbar04 "@colleenyoung Would I still be able to join the young adult support group when though my..." + (show)
@anbar04

@colleenyoung

Would I still be able to join the young adult support group when though my tumour is non-cancerous?

Jump to this post

Thanks for clarifying and asking @anbar04. Please contact griffith.melody@mayo.edu the leader of the AYA support group. She is expecting your email. 🙂

REPLY
marlow2 | @marlow2 | Apr 5, 2023

My daughter-in-law who was just diagnosed with angiosarcoma of the scalp had her first radiation treatment today 4-4-23. Unfortunately, they had to stop the treatment because they gave her paclitaxel that caused a severe allergic reaction along with hot flashes and a very rapid heart rate. They are waiting to see what the doctor is going to suggest. Has anyone else experienced this?

REPLY
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