Radiation Question

BeatificBrunette

I just had a glossectomy to remove cancer in my tongue and a selective neck dissection to remove 33 lymph nodes. Although my surgical oncologist believes he removed all the cancer and the lymph nodes were clean, the cancer was beginning to spread to the nerves. Because of this, my surgical oncologist is sending me to a radiation oncologist.
I’ve only ever seen the after effects of this surgery and radiation on a 78 year old (my grandmother had the exact same cancer 6 months before I did). The only lasting noticeable effects I’ve seen on my grandmother were a scar from the neck dissection and swelling under the chin from radiation.
The long lasting physical effects of cancer are a huge concern for me; after all of this, I want to look in the mirror and still look like me.
I had a plastic surgeon closed the incision for my neck dissection to minimize the scarring, so my question is: Does swelling under the chin happen to everyone? If so, will it eventually go away? Is there any way to minimize it? I know that these are questions my radiation oncologist will answer these questions, but I would appreciate hearing from someone who has gone through this.

soccerfreaks

swelling
I had what I can only describe as reconstruction of the right side of my tongue, along with a radical neck dissection, chemotherapy, and 33 of a scheduled 35 radiation treatments.

This all happened beginning in September of 2005, with the last rad treatment in January of 2006 (maybe February, but thereabouts).

While the doctors who performed my surgery did a fantastic job (they even transplanted nerves from my wrist so that the new right side of tongue could feel), and there is but a thin line running down my chin from the lip, barely detectable at all, there IS some internal scarring from both the surgery and radiation that has led to one or two interesting side effects.

This will not concern you, of course (I assume you are a woman), but I cannot grow a beard on the right side of my face below the jaw line. I'm fine with that.

However, there is also a knot of what my physical therapist calls scar tissue on the right side of my jaw, beneath that same jaw line, and it is evident, at least to me.

In my case, it is more so because it (and other internal scarring) has impacted the ability to open my mouth, and even to eat to some extent. I am working on it. Which is to say that you can too, if it happens in your case. You can get a physical therapist and have them work with you on exercises along with providing massages to the affected area, to reduce the swelling, possibly.

In my case, to be honest, that particular swelling has not gone down completely, but I think is not really noticeable to most people in passing. In fact, honestly, I just looked into a mirror, and I cannot tell it is there myself without feeling for it.

In the meantime, trust me: the old saying that it is better to 'live fast, die young, stay pretty', is simply not the case.

You have to come to terms with the fact you have had this cancer, and take all of the opportunities afforded to eradicate it to the best of your ability. To do less is, I suspect, something you might come to regret down the road.

You are going to have to come to terms with it, in any case, whether you elect to pursue the radiation or not. The recommended radiation treatment will help you now to assuage future worries to some degree, while staying pretty, if that is your concern, will do you little good, in my estimation, if you are only pretty at the viewing.

Best wishes with your choices and with survivorship.

Take care,

Joe

BeatificBrunette

soccerfreaks said:

swelling
I had what I can only describe as reconstruction of the right side of my tongue, along with a radical neck dissection, chemotherapy, and 33 of a scheduled 35 radiation treatments.

This all happened beginning in September of 2005, with the last rad treatment in January of 2006 (maybe February, but thereabouts).

While the doctors who performed my surgery did a fantastic job (they even transplanted nerves from my wrist so that the new right side of tongue could feel), and there is but a thin line running down my chin from the lip, barely detectable at all, there IS some internal scarring from both the surgery and radiation that has led to one or two interesting side effects.

This will not concern you, of course (I assume you are a woman), but I cannot grow a beard on the right side of my face below the jaw line. I'm fine with that.

However, there is also a knot of what my physical therapist calls scar tissue on the right side of my jaw, beneath that same jaw line, and it is evident, at least to me.

In my case, it is more so because it (and other internal scarring) has impacted the ability to open my mouth, and even to eat to some extent. I am working on it. Which is to say that you can too, if it happens in your case. You can get a physical therapist and have them work with you on exercises along with providing massages to the affected area, to reduce the swelling, possibly.

In my case, to be honest, that particular swelling has not gone down completely, but I think is not really noticeable to most people in passing. In fact, honestly, I just looked into a mirror, and I cannot tell it is there myself without feeling for it.

In the meantime, trust me: the old saying that it is better to 'live fast, die young, stay pretty', is simply not the case.

You have to come to terms with the fact you have had this cancer, and take all of the opportunities afforded to eradicate it to the best of your ability. To do less is, I suspect, something you might come to regret down the road.

You are going to have to come to terms with it, in any case, whether you elect to pursue the radiation or not. The recommended radiation treatment will help you now to assuage future worries to some degree, while staying pretty, if that is your concern, will do you little good, in my estimation, if you are only pretty at the viewing.

Best wishes with your choices and with survivorship.

Take care,

Joe

Joe,

Thank you for your words and for sharing your experience. It's helpful to see another person's journey.

Whether I have radiation is not something I'm debating. I'm always going to do what's best for my health. Making sure that I am cancer free is of course my first concern and always will be.

In partnership with getting to cancer free is getting on with my life. Or should I say, getting back to my life. I will not let cancer take control of my life. That being said, I don't want scars or reminders that I have to explain immediately to new friends, colleague or dates. Having to constantly talk about my cancer after it is over is not in the plan.

For me, it's not so much about real vanity, but personal vanity. It's about looking like me and not having a constant visual reminder. I'm currently being robbed of time; I don't want to live with a perpetual reminder of the time when I had to live with my life on pause.

Part of getting my life back is preparing for what I'm going to look like. I'm preparing myself.

I understand that everyone has different ways of viewing their situations, but please don't disregard mine as simple vanity. I'm preparing for how to move on with my life, not make cancer the center of it.

Thank you,

Samantha

soccerfreaks

BeatificBrunette said:

Joe,

Thank you for your words and for sharing your experience. It's helpful to see another person's journey.

Whether I have radiation is not something I'm debating. I'm always going to do what's best for my health. Making sure that I am cancer free is of course my first concern and always will be.

In partnership with getting to cancer free is getting on with my life. Or should I say, getting back to my life. I will not let cancer take control of my life. That being said, I don't want scars or reminders that I have to explain immediately to new friends, colleague or dates. Having to constantly talk about my cancer after it is over is not in the plan.

For me, it's not so much about real vanity, but personal vanity. It's about looking like me and not having a constant visual reminder. I'm currently being robbed of time; I don't want to live with a perpetual reminder of the time when I had to live with my life on pause.

Part of getting my life back is preparing for what I'm going to look like. I'm preparing myself.

I understand that everyone has different ways of viewing their situations, but please don't disregard mine as simple vanity. I'm preparing for how to move on with my life, not make cancer the center of it.

Thank you,

Samantha

beauty and the beast
A great response, Samantha. I apologize for a presumption of vanity. I thought I had read a previous post from you regarding the same subject and was concerned that you were obsessing on appearance to the detriment of care.

It sounds to me as though you are a strong woman with a rational approach to treatment and survivorship. I would caution only that you be advised, if you are not already aware, that cancer and its after-effects can throw us a curveball now and then.

It is truly wonderful that you are looking ahead, anticipating a healthy future, and moving already to get cancer out of your life or at least to the periphery. Would that all could and would do the very same.

Beware the curveballs, Samantha.

I salute you for your positive and even STRONG approach, and wish you the best as you go through this next phase and beyond.

Take care,

Joe

ratface

soccerfreaks said:

beauty and the beast
A great response, Samantha. I apologize for a presumption of vanity. I thought I had read a previous post from you regarding the same subject and was concerned that you were obsessing on appearance to the detriment of care.

It sounds to me as though you are a strong woman with a rational approach to treatment and survivorship. I would caution only that you be advised, if you are not already aware, that cancer and its after-effects can throw us a curveball now and then.

It is truly wonderful that you are looking ahead, anticipating a healthy future, and moving already to get cancer out of your life or at least to the periphery. Would that all could and would do the very same.

Beware the curveballs, Samantha.

I salute you for your positive and even STRONG approach, and wish you the best as you go through this next phase and beyond.

Take care,

Joe

The Turkey Neck
The swelling under the chin is called Turkey Neck and is a side effect of the neck disection as well as radiation. I suspect you are experiencing it now after your disection. I had a disection nine days ago and have the full blown turkey neck right now. The condition is called lymphedema. The lymph nodes when destroyed either by radiation or surgery start making new passages for drainage. Since they can no longer go the old route they have moved over and are trying to connect with other lymph nodes. It's like a river establishing a new course. This is simply water retention and you can be taught massage exercises to lesson the effects. You have to find a massage therapist skillled in lyphedema massage. Ask around your treatment facility for a recomendation. You go for a few sessions and they teach you the techniques and you do it at home. Others report great results, almost immediate diminishing of the swelling. You have to keep doing it though. Also if it's billed as massage it won't be covered by insurance. It's therapy! Radiation is going to cause more turkey neck so you have a long road ahead. What I have been told is to wait 18 months until all the treatment is done and all the new passage ways have been connected. It may resolve on its own. If not, then your plastic surgeon can remove that flap of skin and tighten things up without the possibility of the drainage starting again. My understanding is that insurance will pay for it once only, hence the waiting period. Search for lyphedema exercises, somebody posted them here not too long ago. if not PM me and I'll see if I have a copy. I am not a hansom man but believe me it bothers me too. You will have to endure it for the eighteen months though.

BeatificBrunette

ratface said:

The Turkey Neck
The swelling under the chin is called Turkey Neck and is a side effect of the neck disection as well as radiation. I suspect you are experiencing it now after your disection. I had a disection nine days ago and have the full blown turkey neck right now. The condition is called lymphedema. The lymph nodes when destroyed either by radiation or surgery start making new passages for drainage. Since they can no longer go the old route they have moved over and are trying to connect with other lymph nodes. It's like a river establishing a new course. This is simply water retention and you can be taught massage exercises to lesson the effects. You have to find a massage therapist skillled in lyphedema massage. Ask around your treatment facility for a recomendation. You go for a few sessions and they teach you the techniques and you do it at home. Others report great results, almost immediate diminishing of the swelling. You have to keep doing it though. Also if it's billed as massage it won't be covered by insurance. It's therapy! Radiation is going to cause more turkey neck so you have a long road ahead. What I have been told is to wait 18 months until all the treatment is done and all the new passage ways have been connected. It may resolve on its own. If not, then your plastic surgeon can remove that flap of skin and tighten things up without the possibility of the drainage starting again. My understanding is that insurance will pay for it once only, hence the waiting period. Search for lyphedema exercises, somebody posted them here not too long ago. if not PM me and I'll see if I have a copy. I am not a hansom man but believe me it bothers me too. You will have to endure it for the eighteen months though.

Thank You!
Thank you so much for the information! It really helps to know that this is something that I will not have to live with forever. I do currently have the turkey neck, too!