20 yr old son diagnosed and I need words of wisdom to help him

TammieC

My son has struggled with severe asthma since before he was a year old.  Now, we find out that he has Stage 2 (pending MRI) ONB.  The tumor was surgically removed into the negative margins, but he suffers from some loss of vision, fatigue and difficulty breathing. The PET scan showed several small spots in both lungs as well.  The oncologist is watching it, but he said its too small to biopsy the lungs.  The risk outweigh the benefits at this point.  We have a strong family history of lung cancer (btw we do not smoke), he is also Alpha 1 which raises your risk of lung cancer.

He has a good head on his shoulders, he works full time as a bank teller.  He has his first love interest, monetarily he's responsible, he has big plans about his future and now he feels like the rug was pulled out from under him.  He has learned to deal with the asthma, but he feels this cancer is too much.  He was talking about not doing anything and letting the cancer run its course.  I know that's not the answer, but how old is old enough for him to make these life choices?  Is it selfish of me to want to fight this cancer?  We have fought all these years with his asthma and almost lost him more than once, he's tired of battling sickness and feels that he would be better off if he died.  His job isn't working with him on making his appointments at MD Anderson.  He was supposed to get his MRI over two weeks ago and I keep having to cancel, due to conflict in work schedule.  His health insurance is through his job and he is saving his FMLA in case they decide to do radiation.  We live 2 hrs away from Houston, so working during radiation won't be possible.

It breaks my heart to see and hear the despair in his voice.  Can anyone give me any words that may help him get his mindset back into fighting mode?  Or, do I respect his wishes and let the cancer take its course?  My concern is he'll decide too late that life is worth living.

Goyca

Dear Tammie,I understand

Dear Tammie,

I understand your sons feeling of being tired and giving up. But life is worth living.

I am 24 and last april I was diagnosed with olfactory neuroblastoma. I had 2 surgeries one of which was a major head surgery. Had radio treatment. And now I'm back to normal. I am a daughter of stage 3 ovarian cancer mother too. So me and my mum had to fight cancer in less than 2 years. I gave up at some points. But life is worth living. I suggest that ur son visits this forum maybe he will find strength again and will for life.

 

my heart goes out to you, and your son.

I'll keep you guys in my prayers.

Goyca.

TammieC

Goyca said:

Dear Tammie,I understand

Dear Tammie,

I understand your sons feeling of being tired and giving up. But life is worth living.

I am 24 and last april I was diagnosed with olfactory neuroblastoma. I had 2 surgeries one of which was a major head surgery. Had radio treatment. And now I'm back to normal. I am a daughter of stage 3 ovarian cancer mother too. So me and my mum had to fight cancer in less than 2 years. I gave up at some points. But life is worth living. I suggest that ur son visits this forum maybe he will find strength again and will for life.

 

my heart goes out to you, and your son.

I'll keep you guys in my prayers.

Goyca.

Thanks Goyca

Your stength is amazing!  He is in denial and doesn't want to discuss cancer at this point.  You know....... ignore it and it will go away.  He's not thinking straight, he's tired and angry.  He's asking.... why me?  I'll mention this forum and see if he will look at it and ask questions.  Life is worth living and he has so much going for him, except for his health. 

 

Thank you for your prayers and encouraging words.  It really did help!

wmc

Welcome, again, and sorry you need to be here.

He can go out on short term disability which is better than FMLA. He is over 18 so he can make the dission leagily, but is too young to really know. I understand having to live with asthma, I never had it, but I am Alpha-1 and have had some problems. My right lung collapsed twice at 31. had lung infection at 28 kept me out of work three months. I smoked, so I have severe bullous Emphysema stage three [lungs look like a hand grenade went off in them] I stopped smoking. My cancer was just above my larynx and because my lungs are so bad they would only do the surgery if they took my larynx, and I have to breathe through my neck the rest of my life. Also several outher medical problems too.

My wife was disabled five years after we were married, and we almost lost my son from a car accident when he was hit by a 5 ton forklift that fell of the vehicle comming at him at 55mph and cut the door off his truck and out he went on the hwy. The CHP said he should not be alive, he slid over 90 feet. He is lucky to be alive. They said his hip and back were broken, five small breaks in the back and the upper part of the right hip is broken still, but he went to work got married and has two boys.

Only five people thought I would make it as well. I went back to work in 10 weeks after surgery and my job was computers and talking. They put in a TEP prosthesis so I could talk. Tell your son it can get better and it is worth the fight. My wife was told she would be confined to a wheelchair, 25 years ago and she walks two miles a day, no wheelchair.

The treatment will be hard, but he can do it and beat this. He does have a long life ahead of him and really shouldn't miss it. He will get lots of support from us, if he chooses to fight. Just take one day at a time, and only today matters now. Oh, by the way, my cancer is gone, they remover it all in sugrery. If you click on my name you can go to expressions and see my story [photos showing where I was cut, and how I talk] I'm now 64 and love life. I was given a second chance, as he is. It is nice to say "I BEAT CANCER"

Bill

Sailor123

Dearest Tammie:
I'm so sorry

Dearest Tammie:

I'm so sorry that your dear son is sick.  I know how heartbreaking it is, first hand.  One of the things i've learned in this journey is that the sick person essentially walks this road alone.  There can be love and support but at the end of the day it is ours alone to own.  You are not the least bit selfish to want him to get treatment.  It is an impossible situation for any mother to be in.

I can tell you that I have never related to the words, fighter, survivor, battle, etc.  There really isn't much we can do to prevent a cancer death.  I will not go out of this world fighting, but peacefully with the people I love and the things that bring me comfort.  If my days are numbered I want to live them as joyfully as possible and not sick from treatment.  It is a very individual decision, but what I hope is that my family would support whatever decision I would make.  

I received treatment because there was hope for a cure and i'm not talking about a miracle.  If doctors had told me they could buy me a few more years I would have approached it differently.  

It doesn't seem to me that 20 is too young to make such a decision, especially since you say he is such a level headed and responsible young man.

There are no right or wrong answers in your situation.  God bless you and your family.  Maybe your son will change his mind when a little time passes.  The decision will be clearer when you have enough information to know if a cure is possible and if not how long his life could be extended by treatment.

Love to you.

Sailor123

Sailor123 said:

Dearest Tammie:
I'm so sorry

Dearest Tammie:

I'm so sorry that your dear son is sick.  I know how heartbreaking it is, first hand.  One of the things i've learned in this journey is that the sick person essentially walks this road alone.  There can be love and support but at the end of the day it is ours alone to own.  You are not the least bit selfish to want him to get treatment.  It is an impossible situation for any mother to be in.

I can tell you that I have never related to the words, fighter, survivor, battle, etc.  There really isn't much we can do to prevent a cancer death.  I will not go out of this world fighting, but peacefully with the people I love and the things that bring me comfort.  If my days are numbered I want to live them as joyfully as possible and not sick from treatment.  It is a very individual decision, but what I hope is that my family would support whatever decision I would make.  

I received treatment because there was hope for a cure and i'm not talking about a miracle.  If doctors had told me they could buy me a few more years I would have approached it differently.  

It doesn't seem to me that 20 is too young to make such a decision, especially since you say he is such a level headed and responsible young man.

There are no right or wrong answers in your situation.  God bless you and your family.  Maybe your son will change his mind when a little time passes.  The decision will be clearer when you have enough information to know if a cure is possible and if not how long his life could be extended by treatment.

Love to you.

Tammie,
I should clarify when

Tammie,

I should clarify when I say there is not much we can do to prevent cancer deaths, I mean beyond the obvious.  I live a very healthy lifestyle, eat an organic diet, and was open to any potential LIFESAVING treatment.  Beyond that, i'm really not in control of the situation.  That is what I have peace about.  

TammieC

You and your family have been

You and your family have been through so much.  Thank you for your advice.  I never thought about disability for him.  We were approached by the elementary school nurse years ago about getting on it, but I couldn't do it.  I thought we'll overcome this and he'll be ok.  We did to a point.  He learned to live with it.  He hates the idea that he's sick, period.  There is so much that he wants to do in life and feels that now with cancer on top of the asthma whats the point?  I have spent my day praying and crying, feeling helpless.  Work is the only place where he feels "normal.  He excells at it and can pretend that he feels fine.  Even when he's struggling to breath, he can hide it to his customers and he likes looking normal at work.  Of course, he can't do that at home.  I can read him like a book.  If he stops working, it will crush him and bring on more defeat.  I tell him if he doesn't get treated there will come a time when he can't turn around because the cancer will be too far gone.  He tells me to relax, and I tell him I will once we know for sure if they got all of the cancer.  His vision is getting worse in the right eye which is the side that the cancer was removed.  It was attached to his tear duct.  I'm concerned that its in his orbit, which is one of the reasons why they want an MRI done.  His vision was 20/20 before this.  Dr. Hanna at MD Anderson is concerned that it could be in other places.  He said its rare that where it was found is the only place that it is.  I can't seem to get my son to understand the urgency of this.  He thinks I'm overreacting.  The ENT that did the initial surgery, really talked it down saying it was nothing to worry about, they have it under control, its not aggressive (grade 2).  Which I understand that it could always be worse, but he isn't an oncologist.  Cancer is not his specialty!  This is a rare cancer and from what I'm reading, most people are stage 3 or 4 when its found.  Until he has further testing, we really don't know how dire the situation is.  On the PET scan AFTER surgery, the area where the tumor was removed lit up along with areas in both lungs.   When he was younger and was facing life decisions, I made them and didn't give him a choice.  Now that he's older, I feel helpless because he's old enough to make his own decisions, yet I don't feel like he's counted the cost of those decisions.  I feel its anger and frustration talking.  He's always had such a strong will to be healthy and strong with self control in every situation he makes, that it floors me because he's already ready to throw in the towel!

 

I'm so thankful that you are cancer free and your family are walking on through all of the hardships that you've had to endure!  Its a wonderful testimony!!!  Hopefully, one day we'll be able to share our testimony. 

Sorry for the rambling, I guess I just needed to vent.  =/

TammieC

Sailor123 said:

Dearest Tammie:
I'm so sorry

Dearest Tammie:

I'm so sorry that your dear son is sick.  I know how heartbreaking it is, first hand.  One of the things i've learned in this journey is that the sick person essentially walks this road alone.  There can be love and support but at the end of the day it is ours alone to own.  You are not the least bit selfish to want him to get treatment.  It is an impossible situation for any mother to be in.

I can tell you that I have never related to the words, fighter, survivor, battle, etc.  There really isn't much we can do to prevent a cancer death.  I will not go out of this world fighting, but peacefully with the people I love and the things that bring me comfort.  If my days are numbered I want to live them as joyfully as possible and not sick from treatment.  It is a very individual decision, but what I hope is that my family would support whatever decision I would make.  

I received treatment because there was hope for a cure and i'm not talking about a miracle.  If doctors had told me they could buy me a few more years I would have approached it differently.  

It doesn't seem to me that 20 is too young to make such a decision, especially since you say he is such a level headed and responsible young man.

There are no right or wrong answers in your situation.  God bless you and your family.  Maybe your son will change his mind when a little time passes.  The decision will be clearer when you have enough information to know if a cure is possible and if not how long his life could be extended by treatment.

Love to you.

Sailor123,  I think that he

Sailor123,  I think that he feels like if he just lets nature take its course, that if they got all the cancer during the surgery then he'll be fine.  If not, he'll have somewhat of a quality of life until he dies.  Both of his grandparents died of lung cancer and he saw their struggles through treatment.  I guess he feels that quality is better than quantity.  Noone that he knows has ever survived cancer.  I know there are people who have beaten it, but he doesn't know them personally.  I'm hoping he'll have a change of heart sooner rather than later to fight the cancer.  In the meantime, I'm praying and researching hoping to find an answer to this dilema.  If the cancer is causing his vision loss, then time is of the essence for sure!  We won't know until he has the MRI. 

debbiejeanne

tammie, first, i'm so very

tammie, first, i'm so very sorry you and your son are facing this.  it is never easy but when its a child, i can't even imagine.  cancer can definitely make one feel the best way is to let it run its course, but most then have time to calm down from the dx and rethink the road they want to take.  That is what I'm praying your son does.  right now, he is angry, discusted, feeling cheated, and a whole circut of feelings.  plus like you said, he is in denial.  all of these feelings are normal.  it is very hard to hear the words, "you've got caner".  it does takes a couple days for that to actually set in and let you begin to think about it and the options for tx you have.  it is very hard on you as your baby is sick.  doesn't matter that he's 20, he is still your baby.  i would give him a couple days to accept this and then approach the subject of tx with him again.  also, if he would join here or just visit on your name, he would see that there are many survivors here.  he can also gain information about cancer and what to expect.  i will keep you and your family in my thoughts and prayers.  welcome to our family although, nobody ever wants to be part of this family by choice.

God bless you,

dj

CivilMatt

treatment?

TC,

With surgery he has already taken life prolonging steps and with the selection of MD Anderson he has increased his odds of many productive years of life.

To do nothing is a life choice with limited “do overs”.

I selected to swing for the fences with my treatment and have minimal regrets.

Good luck,

Matt

MrsBD

Advice

You have my heartfelt sympathy. Being the mom can be so hard at times. My daughter was diagnosed with rheumatoid arthritis at 23 years old. She already had degenerative disc disease, kidney issues, and fibromyalgia.  She had watched my mom, her grandma, slowly get worse, eventually dying from complications of RA. When I ran into my mom's old rheumatologist and told her about my daughter, she said," Your daughter will not experience nearly the problems your mom did. The new drugs are so much better!" Those words meant so much to my daughter and me. Now age 36, she works, has friends, and is happy.

There is so much hope. Advances are being made every day. Your son is going to go through a tough time, but the diseases he suffers from now could be wiped out with new discoveries. There are many stories of hope on this site and others. He needs an upbeat cancer team who won't sugarcoat, but will give him hope. My prayers are with yours as your son wrestles with this diagnosis.

hwt

MrsBD said:

Advice

You have my heartfelt sympathy. Being the mom can be so hard at times. My daughter was diagnosed with rheumatoid arthritis at 23 years old. She already had degenerative disc disease, kidney issues, and fibromyalgia.  She had watched my mom, her grandma, slowly get worse, eventually dying from complications of RA. When I ran into my mom's old rheumatologist and told her about my daughter, she said," Your daughter will not experience nearly the problems your mom did. The new drugs are so much better!" Those words meant so much to my daughter and me. Now age 36, she works, has friends, and is happy.

There is so much hope. Advances are being made every day. Your son is going to go through a tough time, but the diseases he suffers from now could be wiped out with new discoveries. There are many stories of hope on this site and others. He needs an upbeat cancer team who won't sugarcoat, but will give him hope. My prayers are with yours as your son wrestles with this diagnosis.

Tammie

This is difficult enough at age 60, I can't imagine these decisions at 20. Denial and anger are not unusual. I am a 3x survivor and have been told that by all rights I should not be here, but I am!

When my cancer came back around my carotid artery I wasn't given any hope in St Louis. I consulted both MDA and Mayo Clinic and those two consulted with each other for my best opportunity. Your son may want to consider asking MDA to devise the radiation plan but actually have the treatments carried out locally. Mayo worked very closely with an Onologist in St Louis when I had my 2nd round of chemo. Mayo ran the show and communicated with the local oncolgist to administer the actual chemo. 

It is not an easy journey but a worthwhile one. Focus on faith and hope. I still take inspiration from the poem "Footprints In The Sand".

May God bless and guide your son.

Candi 

wmc

Tammie you never need to apoligise for venting.

Tammie venting is good for you to do. Plus you will never find a better place to vent, as we all understand what you are saying and feeling. We have all been there and sometimes just putting it into words how you feel, helps you understand and even feel just a little better. Just one day at a time, and we're oped 24/7

Bill

Hondo

TammieC said:

You and your family have been

You and your family have been through so much.  Thank you for your advice.  I never thought about disability for him.  We were approached by the elementary school nurse years ago about getting on it, but I couldn't do it.  I thought we'll overcome this and he'll be ok.  We did to a point.  He learned to live with it.  He hates the idea that he's sick, period.  There is so much that he wants to do in life and feels that now with cancer on top of the asthma whats the point?  I have spent my day praying and crying, feeling helpless.  Work is the only place where he feels "normal.  He excells at it and can pretend that he feels fine.  Even when he's struggling to breath, he can hide it to his customers and he likes looking normal at work.  Of course, he can't do that at home.  I can read him like a book.  If he stops working, it will crush him and bring on more defeat.  I tell him if he doesn't get treated there will come a time when he can't turn around because the cancer will be too far gone.  He tells me to relax, and I tell him I will once we know for sure if they got all of the cancer.  His vision is getting worse in the right eye which is the side that the cancer was removed.  It was attached to his tear duct.  I'm concerned that its in his orbit, which is one of the reasons why they want an MRI done.  His vision was 20/20 before this.  Dr. Hanna at MD Anderson is concerned that it could be in other places.  He said its rare that where it was found is the only place that it is.  I can't seem to get my son to understand the urgency of this.  He thinks I'm overreacting.  The ENT that did the initial surgery, really talked it down saying it was nothing to worry about, they have it under control, its not aggressive (grade 2).  Which I understand that it could always be worse, but he isn't an oncologist.  Cancer is not his specialty!  This is a rare cancer and from what I'm reading, most people are stage 3 or 4 when its found.  Until he has further testing, we really don't know how dire the situation is.  On the PET scan AFTER surgery, the area where the tumor was removed lit up along with areas in both lungs.   When he was younger and was facing life decisions, I made them and didn't give him a choice.  Now that he's older, I feel helpless because he's old enough to make his own decisions, yet I don't feel like he's counted the cost of those decisions.  I feel its anger and frustration talking.  He's always had such a strong will to be healthy and strong with self control in every situation he makes, that it floors me because he's already ready to throw in the towel!

 

I'm so thankful that you are cancer free and your family are walking on through all of the hardships that you've had to endure!  Its a wonderful testimony!!!  Hopefully, one day we'll be able to share our testimony. 

Sorry for the rambling, I guess I just needed to vent.  =/

Smiling Face

 

We all seem too hid behind our smiling faces because we don’t want others to feel sorry for us or know how bad we hurt. So we put on this show for them so that they can walk away feeling good about their self thinking we don’t need their help. Then like you said at home we fall apart, why is this, I am not sure but I know my caretaker sometimes is the only one who understands me so I open up to only her. I am getting old, I lived my life but I feel for people like your Son who are just getting started with life then run into this monster. For me work is one of the few things that keeps my brain working and strong, and then I hear the company is going to laid me off soon. What will I do, how will I keep my home I worked for, for so many years, do I just loose it all now. I think we all have times like these that we go through because none of us know the future. I will keep your Son and you both is my prayers.

 

God Bless

Tim Hondo