Scared to Death.

THMoore

When I was 16, I broke my neck in a sports injury.  After 18 months in a Rehabilitation center, I starting to regain some movement of my extremities. That was in 1977.  I have never drank, smoked, always had yearlly blood work, dental work done and stayed as heathy as possible over the years. Three weeks go, I felt a lump on my right side neck. Like everyone else, I went to a primary, then I went for a second opinion.  Decided on a CT scan, where I was told I had a mass in my perotid gland. I went for a ultrasound and had a FNA biopsy.  Results came back basically saying there were some nontypical cells, and could not determine exact type or malignancy cause so recommended a removal of the mass for another biopsy.  I went back to my ENT and he said it was in a Lymph node beside my Perotid gland. Surgery is set for Tuesday.  The ENT said, it could be SC, HPV.  The node size is 2CM by 3.2CM. He cant find anything in my mouth or throat that look suspicious even after a endoscopsy. 

My mind and soul are in overdrive.  I am analytical by nature.  I have researched and already made myself sick.  

I have already sent my medical records to MD Anderson and have a team setup to evaluate me in 3 weeks.  

My concern is, I am wheelchair and scooter bound now, and have limited movement in my legs and arms. I don't know how could handle all the Radiation and Chemo you all have endured.  Inaddition, my lungs are weaker and immune system is weaker then a normal bodied person. 

Has anyone had Proton instead of standard Rad? 

Bottom line, I am scared and could really use some support and help.  

 

Trent

Logan51

Trent

First, you will survive this if it is C in the lymphs- we all do with the 1st bout. Remember reading several years ago about a 20+-year Survivor who got the same C & R I did with an 8-week stay in the Hospital. Even if that's in the cards for you, know that your C-team will do everything they can to get you thru this as best as possible. PET/CT scans typically is used to determine if the C is anywhere besides the swollen lymph. Only then will the Drs. know what's what and be able to formulate a tx plan, and I'm sure they will accomodate said tx with your handicaps. If any problems- let them know.

You, obviously, know what Medical trauma to the body is, so should be mentally prepared for what's to come. I was in a car accident when 13: head broke the windshield and throat slammed against the hard dashboard= crushed windpipe @ the larynx, resulting in 5 Ops. in Freeport, Il., and then 18 in Chicago's Rush from '68-70 to rebuild my windpipe with a grafted silicone stint. 1/2 my larynx has been paralyzed since 11/68, but that and the scars I chose to keep are the only negatives that I took with me when released from the Chicago ENT Dr.'s care. That said, perhaps we have that teenage trauma in common/our history to help with the mental aspect of H & N C treatment. I never needed Counselling help when I was young, and had none during or after C-tx. Hey, I'm a man, so come what may. But that's just me. Felt I had an advantage others did not because of what I went thru as a Teen with the "survival mindset." If you need help, then request it.

Keep your Dr.s informed on how you are feeling so they can give you the help you need, whether it's for pain or anxiety, e.g., and you'll survive this with as minimal suffering as possible. Please keep us informed going forward.

THMoore

Logan51 said:

Trent

First, you will survive this if it is C in the lymphs- we all do with the 1st bout. Remember reading several years ago about a 20+-year Survivor who got the same C & R I did with an 8-week stay in the Hospital. Even if that's in the cards for you, know that your C-team will do everything they can to get you thru this as best as possible. PET/CT scans typically is used to determine if the C is anywhere besides the swollen lymph. Only then will the Drs. know what's what and be able to formulate a tx plan, and I'm sure they will accomodate said tx with your handicaps. If any problems- let them know.

You, obviously, know what Medical trauma to the body is, so should be mentally prepared for what's to come. I was in a car accident when 13: head broke the windshield and throat slammed against the hard dashboard= crushed windpipe @ the larynx, resulting in 5 Ops. in Freeport, Il., and then 18 in Chicago's Rush from '68-70 to rebuild my windpipe with a grafted silicone stint. 1/2 my larynx has been paralyzed since 11/68, but that and the scars I chose to keep are the only negatives that I took with me when released from the Chicago ENT Dr.'s care. That said, perhaps we have that teenage trauma in common/our history to help with the mental aspect of H & N C treatment. I never needed Counselling help when I was young, and had none during or after C-tx. Hey, I'm a man, so come what may. But that's just me. Felt I had an advantage others did not because of what I went thru as a Teen with the "survival mindset." If you need help, then request it.

Keep your Dr.s informed on how you are feeling so they can give you the help you need, whether it's for pain or anxiety, e.g., and you'll survive this with as minimal suffering as possible. Please keep us informed going forward.

Thanks Dave.  You are right.

Thanks Dave.  You are right.  The injury taught me alot both physically and mentally.  But now, my body is not as strong as it was and I know my wife will be unable to help me up and down or dress me and bath me. I have always taken pride in being able to support myself. I have worked for the militay for 40 years and was going to retire this year.  Guess it will be early.

Have you had any experience with Proton vs Std Rad?   

THMoore

Logan51 said:

Trent

First, you will survive this if it is C in the lymphs- we all do with the 1st bout. Remember reading several years ago about a 20+-year Survivor who got the same C & R I did with an 8-week stay in the Hospital. Even if that's in the cards for you, know that your C-team will do everything they can to get you thru this as best as possible. PET/CT scans typically is used to determine if the C is anywhere besides the swollen lymph. Only then will the Drs. know what's what and be able to formulate a tx plan, and I'm sure they will accomodate said tx with your handicaps. If any problems- let them know.

You, obviously, know what Medical trauma to the body is, so should be mentally prepared for what's to come. I was in a car accident when 13: head broke the windshield and throat slammed against the hard dashboard= crushed windpipe @ the larynx, resulting in 5 Ops. in Freeport, Il., and then 18 in Chicago's Rush from '68-70 to rebuild my windpipe with a grafted silicone stint. 1/2 my larynx has been paralyzed since 11/68, but that and the scars I chose to keep are the only negatives that I took with me when released from the Chicago ENT Dr.'s care. That said, perhaps we have that teenage trauma in common/our history to help with the mental aspect of H & N C treatment. I never needed Counselling help when I was young, and had none during or after C-tx. Hey, I'm a man, so come what may. But that's just me. Felt I had an advantage others did not because of what I went thru as a Teen with the "survival mindset." If you need help, then request it.

Keep your Dr.s informed on how you are feeling so they can give you the help you need, whether it's for pain or anxiety, e.g., and you'll survive this with as minimal suffering as possible. Please keep us informed going forward.

Dave,

Dave,

I wanted your opinion.  My local ENT wants to remove the swollen lymph gland this tuesday and send for biopsy.  I received a call from MD Anderson asking me to not remove the node, but come up and let them decide the proper course of action..  What do you recommend?

Logan51

Trent

All I can do is tell you MD Anderson is supposed to be #1 in C treatment, though Sloan Kettering and a couple others are very close. I advise you to compare the credentials/knowledge of your local vs. MD Anderson's ENT.

Logan51

Standard

That's the Rads I got. IMRT, I think they called it back in 2009.

Logan51

3 weeks?

What my team did was take a surgical biopsy sample from one of the two swollen lymphs, then sent to the U of Iowa lab. Got the results a week later. The prior needle biopsy came back negative.

MD Anderson could very well be wanting you to wait to see if a radical neck dissection, which is the removal of one heckuva lotta lymphs, is what needs to be done prior to C & R- which likely would reduce the C & R. AND, they will want to find a Primary= where the C started/tumor.

Also, from the time my 2 lymphs showed to the time I started C & R= 6+ weeks. 

DarcyS

Get the best care possible

Hello, I am not a survivor but a caregiver.   My husband had treatment 7+ years ago.  We started out locally but the ent was not able to find the primary but it was visible in a ct scan. His lymph node was visible and clearly seen on ct scans.  After almost 2 months of biopsies, scopes, pet scans,  we decided to seek a second opinion and treatment elsewhere.  We went to UofM and University of Chicago where the primary was located almost immediately with a scope.  Get the best care possible. A teaching hospital and highly ranked cancer center will have diagnosed and treated many others and have the knowledge for dealing with more complex medical needs.  My husband did not have surgery, UofC said that was plan B.  His diagnosis:  ssc of the piriform sinus stage IV or also put T1M0N2b.  

This is a wonderful site for support, information, and filled with caring people who have been where you are and can help you along your journey.  

SuzJ

Do what your heart and brain

Do what your heart and brain tells you and quit researching! No more Dr Google. The only thing any of us should type in google, is "who is the best to give me care close to me" I think thats close to what I wrote, I went to VCU Massey in Richmond, VA. and I can't say  enough good things about my Drs and treatment.

Its a whole team, not a single person, they meet every week and the whole team (all Oncology) has input. and I like that, instead of X years of medical experience, you are getting XX collective years.

THMoore

SuzJ said:

Do what your heart and brain

Do what your heart and brain tells you and quit researching! No more Dr Google. The only thing any of us should type in google, is "who is the best to give me care close to me" I think thats close to what I wrote, I went to VCU Massey in Richmond, VA. and I can't say  enough good things about my Drs and treatment.

Its a whole team, not a single person, they meet every week and the whole team (all Oncology) has input. and I like that, instead of X years of medical experience, you are getting XX collective years.

Thanks Suz.  Just really

Thanks Suz.  Just really scared.  I keep asking myself do I want to go through this, or just live out the remainder of my life.  

THMoore

DarcyS said:

Get the best care possible

Hello, I am not a survivor but a caregiver.   My husband had treatment 7+ years ago.  We started out locally but the ent was not able to find the primary but it was visible in a ct scan. His lymph node was visible and clearly seen on ct scans.  After almost 2 months of biopsies, scopes, pet scans,  we decided to seek a second opinion and treatment elsewhere.  We went to UofM and University of Chicago where the primary was located almost immediately with a scope.  Get the best care possible. A teaching hospital and highly ranked cancer center will have diagnosed and treated many others and have the knowledge for dealing with more complex medical needs.  My husband did not have surgery, UofC said that was plan B.  His diagnosis:  ssc of the piriform sinus stage IV or also put T1M0N2b.  

This is a wonderful site for support, information, and filled with caring people who have been where you are and can help you along your journey.  

Darcy,

Darcy,

How is your husband doing. I am in total shock and so afraid.  I just dont if I want to spend the remaining years sick and in and out of hospials or just live out what time I have.

DarcyS

THMoore said:

Darcy,

Darcy,

How is your husband doing. I am in total shock and so afraid.  I just dont if I want to spend the remaining years sick and in and out of hospials or just live out what time I have.

Life is good

I remember well the feelings you are having now.  Some relief came with finding a care team we were comfortable with and having a plan.  It sounds like you are not entirely pleased with your ent.  Like I said earlier, a teaching hospital and highly ranked cancer center I feel, provided the best care, outcomes and knowledge.  Life is good with very few side effects.  We are so thankful to our care team at UofC. They worked together and made the decisions via a tumor board for the best outcomes.

wbcgaruss

THMoore Calm Yourself

Many on here have been through much worse and have made it not just OK but came out the other side thriving. Don't be afraid because at MD Anderson you will have the best team and medical options available. They will work up a treatment plan for you and guide you through every step. Write your questions down now as they come to mind and take them along and don't hold back on asking any questions. Take someone with you to take notes and have an extra set of ears listening. You've got this just be confident in yourself and trust in God and prayer always helps. Take Care-God Bless

THMoore

wbcgaruss said:

THMoore Calm Yourself

Many on here have been through much worse and have made it not just OK but came out the other side thriving. Don't be afraid because at MD Anderson you will have the best team and medical options available. They will work up a treatment plan for you and guide you through every step. Write your questions down now as they come to mind and take them along and don't hold back on asking any questions. Take someone with you to take notes and have an extra set of ears listening. You've got this just be confident in yourself and trust in God and prayer always helps. Take Care-God Bless

Thank you for the kind words

Thank you for the kind words and support.  I mean this for everyone in the group that has taken the time to listen and give advice.  One of my major concerns is I am a incomplete quadreplegic.  Meaning I have a weak immune system and cannot walk.  My wife helps me in bed, in the shower and even to dress.  I dont know how we can do this and I worry, I will get to weak.

wbcgaruss

I Understand You Certainly

Have reason to be concerned as per your situation being a quad and a lesser immune system. I would ask a lot of questions and make sure they understand your condition completely. I am pretty sure a major hospital like that has staff trained in that kind of care. My neighbor is a quad and just recently had a foot hurt that wouldn't heal. They finally sent him to the hospital and determined he had 3 blockages in his leg vein and did not have good blood flow. They operated and opened his blockages and now he's back home and at his shop again and this is just a local hospital. They will take good care of you. Take Care-God Bless

PipLily

Hello....

Hi Trent.....just wanted to let you know that I’ll be praying for you, as I know how overwhelmed and scared you feel right now. My husband, also, found a lump in his neck three weeks ago....and we are just starting on this crazy, unexpected journey. I am fearful as well, but have received much support from this forum, so I think it’s great we’re here! You have an extra level of concern, given some of the physical challenges you face on a daily basis....I can’t begin to imagine adding that into the mix. But just know that your medical team will have encountered many challenges with varying diagnoses of their patients.....and going to a highly skilled medical facility will mean that they have lots of resources, and specialty physicians, to corroborate and intervene for you! I’m trying to breathe right now, it’s hard because our mind goes to worst case scenarios, but I’ve been assured my husband and I will get through this.....and I’m trusting you and your wife will as well. You both are obviously strong with what daily challenges you already face!! Let’s take it day by day, or hour by hour....whatever works at that moment. Praying for you,

Elizabeth

skidog

i had Proton

Hello. I can totally relate to your situation. very similar to mine. i got 3 opinions and decided to go with Mayo clinic in Rocheser MN. received 6 weeks of proton rads only. please read my story by doing a history search on this board of my journey(skidog) . I was able to forego surgery and chemo. same diagnosis as yours. I was able to eat throughout the entire process but weeks 5, 6 and post rads week 7 were the most difficult  but not terrible. lost some weight but needed to. im now 18 months cancer free and nearly 100% back to normal. i look at it as a slight bump in the road of life.  you got this. do your research, read from this board and feel comfortable with the choice you make. I had total considence in my choice with proton rads and my results are proof. didnt need a feeding tube. didnt need teeth removed. no surgery and chemo needed. feel great. good luck!

ERomanO

Proton therapy here as well.

Proton therapy here as well.  I'm not sure what the advantages are, but that's what I got nevertheless.  Like skidog I too am 18 months post... not 100% normal, but tolerating the ongoing side effects and pretty much getting along with life.  I can underatand why you are worried... I think we've all been there... but your docs will consider every aspect of your current health in determining the right plan for you.  Once you get going on your treatments just stay focused on the matter at hand and stick with your regimen during and after treatments.  No amount of worrying will benefit you in any way.  Like Russ said - "Many on here have been through much worse and have made it not just OK but came out the other side thriving".  That is a very important observation to consider and remember.  You got this!

THMoore

ERomanO said:

Proton therapy here as well.

Proton therapy here as well.  I'm not sure what the advantages are, but that's what I got nevertheless.  Like skidog I too am 18 months post... not 100% normal, but tolerating the ongoing side effects and pretty much getting along with life.  I can underatand why you are worried... I think we've all been there... but your docs will consider every aspect of your current health in determining the right plan for you.  Once you get going on your treatments just stay focused on the matter at hand and stick with your regimen during and after treatments.  No amount of worrying will benefit you in any way.  Like Russ said - "Many on here have been through much worse and have made it not just OK but came out the other side thriving".  That is a very important observation to consider and remember.  You got this!

Thank you for the kind words

Thank you for the kind words and wisdom.

THMoore

skidog said:

i had Proton

Hello. I can totally relate to your situation. very similar to mine. i got 3 opinions and decided to go with Mayo clinic in Rocheser MN. received 6 weeks of proton rads only. please read my story by doing a history search on this board of my journey(skidog) . I was able to forego surgery and chemo. same diagnosis as yours. I was able to eat throughout the entire process but weeks 5, 6 and post rads week 7 were the most difficult  but not terrible. lost some weight but needed to. im now 18 months cancer free and nearly 100% back to normal. i look at it as a slight bump in the road of life.  you got this. do your research, read from this board and feel comfortable with the choice you make. I had total considence in my choice with proton rads and my results are proof. didnt need a feeding tube. didnt need teeth removed. no surgery and chemo needed. feel great. good luck!

Thx for the information.  I

Thx for the information.  I appreciate you talking to me.  Everyone here are amazing.  

 

Trent

lorih864

Hi! I'm not sure if you've

Hi! I'm not sure if you've now had surgery or have been seen at MDA. Based on what you shared, it seems that your ENT surgical team will be able to identify if this is confined or not. If it is confined and clean margins are achieved then you may not required chemo/radiation. It sounds like you may be in the discovery stage. Hang tough. Try not to "future trip" on the 'what-ifs'. Without more clarity you'll exhaust yourself. MDA is awesome. I went there for a second opinion for stage iv scc hard palate, maxilla, sinus.