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My dad has EC, but was told it may have spread to the hip...is there hope?

Proactive Daughter's picture
Proactive Daughter
Posts: 55
Joined: Dec 2011

Hi everybody,

I normally am on the Esophegeal cancer forum, but have a question you guys may be able to help me with.

My dad is 62 years old. On Dec. 1st he learned that he had Stage 2 Esophegeal cancer. He had surgery to remove the esophagus. He met with his Oncologist (Dr. Noble, Sudbury, ON Canada) for the first time on January 11th. It was in this appointment that my dad thought he was going to be told when he could start chemo and radiation. But to his (and our) suprize, he was told that his PET scan shows activity in the hip area, and the Oncologist wants to run another scan to see if the activity in the hip has progressed. If it has, it's cancer. If it hasn't, it could be damaged tissue from when my dad had polio as a child. The Oncologist said that if it is cancer in the hip, my dad can go ahead with radiation, but not chemo...and basically we would be keeping him comfortable until he passes. So, from what I understand, if you have cancer in your hip...you don't have a fight? That doesn't seem right to me. Anybody have any insight to offer? He gets another scan this friday, and the results will be reviewed next wednesday (feb.1st). Let's PRAY there is no cancer in the hip!!!

Thanks everyone, sorry for the long babble!

----Jennifer

Dad'sfight
Posts: 155
Joined: Feb 2013

My dad is also battling EC 9/2012. 6/2013 its now in his hip. How is your dad, did he have treatment. They acted like dad could fight this.

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Greetings Jennifer.

I've been hanging out in the Colorectal Cancer as I was dx'd with Colon Cancer that had spread to the liver (yes, stage IV) December 2011.

had a couple surgeries, 45 our of 52 weeks of 2012 with chemo.

then, a new chemo began in Jan 2013... which they called "maintenance chemo" as by this time the we had cut out all the cancer from the colon, and lost a foot and a half of the colon. And, the cancer in the liver was "stable".

In April i had another treatment schedule and they did a PET scan... yep. Cancer had spread to the hip.  It was in the acetabulum, pubic bone and the left hip bone. As well as a spot on the bottom of the spine.  They watched it for awhile... and once the pain began, then we started talking radiation. The pain got works pretty quickly so we stopped the chemo i was on during this time to give my body a 2 week "vacation". The pain continued in the left hip and we scheduled 10 radation treatments to the hip bones.

By the 3rd or 4th radiation treatment, the pain had subsided. We went for all 10 treatments and now I have no pain whatsoever in that hip.

waited another 2 weeks and then restarted chemo to fight the cancer that remains in my liver. 

So, now I have secondary liver cancer (caused by Colon Cancer)... yet the liver is spraying the cancer off into the bones.

We did another PET scan, and the cancer had reduced greatly in the left hip... but it was repeating itself in the right hip... AND it was in two rib bones, and in my right shoulder in 4 different small spots.  and, a few more in the spine.

I was told... we should continue to fight the liver cancer and try to put it to sleep to stop it from spreading to other bones.

Note: Bone cancer does not go from one bone to the next, to the next. Bone cancer comes from the source (for me the liver) and stops at one spot. The next spot does NOT come from that spot... it comes from the liver again.

Another note: They told me that its more important to fight the liver cancer... and when the bone cancer spots begin to cause pain and i notice them... we wll radiate those spots.

so, it sounds like I will be chasing bone cancer, once they are painful and treating with radiation. But, if they are not painful, we are not going to worry about them. And, we will try to stay on chemo to continue to fight the cancer in the liver.

crazy.

I'm not sure if I ansered your question... but the door is open now, so toss me any additional questions. 

I'll check back tomorrow.

all my best to you.

Joe

 

Dad'sfight
Posts: 155
Joined: Feb 2013

Joe,

Thank you for responding. I do understand that it came from Esophagas since that's where the "mother" cancer is. I'm just shocked that our oncologist told us last week that dad has 4-8 months without chemo and if lucky he will get 12 months with chemo. I'm just in shock. I've read everywhere, including you, that it is possible to stick around for a few years but that chemo will be inevitable. I still can't believe 1 yr is all he's got, it's only in the L hip and very sm. spot on spine. The oncol. said the rad. onc should do radiation, but she said no way. Her opinion is that its too small, no pain, so wait until nec.  She feels chemo might take care of it.

That's the only 2 places, nothing seen in liver etc.... So I'm taking Dad to mayo clinic for second opinion.  Are you on Zometa? What chemo have you been taking?

Praying for you!!!

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

thanks for your note.

You say the doctor said 4-8 monhts to live, without chemo. and 12 months with chemo.

so, two things that come to mind for me with those statements... first is a question of mine, second is an opinion of what that doctor is trying to tell you.

My question: "did you or someone in the room ask or pose the question "How long does dad have to life?"   or did he just bring that up as part of his bedside manor/conversation?

my bet is that someone asked the doctor and that's why you have that answer.

 

my next thought... if you asked or not, your doctor is basically givig you two choices.

1. Enjoy the heck out of life, and don't get any chemo... and he'll life 4-8 months without vomiting, without weight loss, without having to sleep 20 hours straight after a chemo treatment.  And, basically... it looks to me that the doctor (in his opionion and eperience) has seen enough in his experience to say... wiht chemo (with punishment like most older people do not endure very well) he'll enjoy a half a year to 3/4's of a year.  if we choose to go with chemo and other needed meds... we might get a year, we might get a year an a half... but it won't be fun.

as family we always want to fight fight fight.   when we have company over for a celebration, we FEED each other.   We help each other in times of need. We run and get them water and crackers when they are sick, and we hold a puke bowl by their head and rub their necks with cold cloths. We pick the patient off the floor, when their blood pressure goes so low, yet they try and stand up too quickly to run to the bathroom, only 12 feet away, and they fall.   We help them in and out of the car, because they are so week to walk... but knowing to get out and life life, even though they are getting chemo each week....

so the doctor was trying to give you an option... but what you see right now is 4-8 months of life with Dad or 12 months or more.

we instantly think... well, we have to have more, so we have to do the chemo.

let me tell you, from a cancer fighters perspective. (I am 49 years old, and was 47 when I was diagnosed) but if I was 60, 65 or old... and knowing what I know right now.... I doubt I would opt for the 12 months of missery over the 8 months of bliss and feeling good.

Cancer doesn't kill people in an ugly way. Its the chemo that tries to kill the cancer which also kills other fast growing cells. (hair, skin, seliva, digestive system, mouth, throat, etc.)

 

But, on the other side of the coin... you are going to get another opinion.

I too am a HUGE fan of second opions. But, now that you've had the recommendation from one onologist, as for others.

 

you asked about drugs... I have Colon Cancer which is my "primary" cancer. It began in the colon, spread to the liver.

now the cancer that WAS in the colon, but it's been all cut out of there. so, it ends up I have secondary liver cancer (from the colon) that is now spraying cancer cells off into the blood stream and causing bone cancer.  I'm on a chemo cocktail called FolFuri with a side drug called Avastin.  I get the chemo every other Wednesday for 6 hours in the chemo chair, then they put a chemo pump on me and a bag of chemo inisde the pump and it pumps two drops of chemo into me every minute for another 48 hours.  So, its like a 3 day treatment... then, I have a week off to recover, and the next Wednesday we do it all over again.

the Friday, Saturday and Sunday after the treatments... I am useless. Totally useless.

I sit, sleep, sit, sleep and sleep.... and between all that I take drugs to help with all the side effects from the chemo. nausea, vomiting, bleeding, constipation, etc.

so, if you get a chance, google "how docotors die" 

there are several articles out there that show that Doctors make decisions differently for themselves than they do for their patients.  Here's one http://www.philly.com/philly/blogs/fieldclinic/Doctors-die-differently-than-their-patients.html

it's very interesting.    I've shared this with my doc's, and we talk quite a bit differently now. I can ask my doc's... what would you do? and now that we have an understanding, i get two answers.  the answer he wants to give me as a doc and the answer he would give if he was talkin to his wife.

now, much like you seeking a 2nd opinion.  I am on my 3rd oncologist... because I kept asking questions and asking for another opinion. I didn't always go with the right choice, (there is no right and wrong choice) but I go with the doctors or team that I like the most and that I feel are honest and straight forward... and that have also had more than a year of experience with the cancer that I have.  I like to talk about "your last patient that had what I have, what happened when...."

i get answers which helps me make choices.

I don't have answers for you... but i have opinnions and ideas to share that will help you THINK a bit differently.

do remember one thing.... this is your DAD's cancer so the final choices are his.  Families often do not respect that. I've read of cases where the family is all together with the sick parent... meeting with the doctors and the docs spell out the choices of "no treatment" or "treatment"    No surgery or surgery.     Us kids, always say.... Fight Fight Fight.   Do everything possible to get every day extra we can get.

But, if you have a GREAT doctor... he will have a one on one meeting with Dad, with no kids around... and the doctor will give your dad a chance to give HIS answer.   Often that conversation is much different.   Often the dad says.... I've had a great life, and I don't want to be sick for a year from chemo.

okay.... sorry to babble.  But wanted to share.

my best to you and your dad.

 

Joe

 

Dad'sfight
Posts: 155
Joined: Feb 2013

Hi Joe,

Again, your insight is so very helpful.  Dad is 55yo, he'w wanting to fight this to prolong his life. The convo. with the Onc. was something the onc. was leading himself. No one asked about time, he said in the context of quality vs. quantity of doing chemo. He felt that the chemo probably wouldn't help and he wanted Dad to understand the difference. He pretty much did a face to face with Dad while we were in the room. He asked questions specifically to dad and responded only to Dad. In one way I know he wanted to convey to Dad to do all the things he has wanted, and start now with that.  After reading your post, I do agree, they need to have the convo. alone without us sitting in there.

There are 2 problems I have with the onc. perspective but the bigger of the 2 is that fact that he won't know if dad responds to chemo.  I think you wait to give time until you try 1st. That's why I'm seeking a second opinion at Mayo.  I'm glad to see that you have done the same, that I'm not the only one.  I was worried that I would cause more stress for Dad, he's not liking change too much these days.

If my father was 65, I would be doing things a lot differently.  I would probably suggest "enjoy the heck out of life" forget doing chemo.  But at 55, he has a lot more things he would like to see before he goes. That's what makes it so much harder for me. He hasn't made peace with the fact that his time has been cut short, who would or could? He ask's me everyday if there is something that can prolong his life. He just says that he's not ready to leave. With all of that I just push harder to maybe find something to prolong this.

Has your treatment shown good results? I read a book and actually was going to mention Avastin to the doctor if he doesn't bring it up. The book is called Anti-Cancer A New Way of Life. It's written by Dr. David Servan-Schreiber. It's fantatastic, it had a chapter about Avastin in there so I'm curious if it's an option.  If you have a chance read it, it puts a whole new perspective on treating cancer. 

I can't thank you again for taking the time to help me, it means a lot. You have definently enlightened me on different ways to approach this, especially with the doctors.  You've also shown me a side from the patients perspective, it has really got me thinking. So when I get home tonight I'm going to double and triple check that this is what Dad wants.  Your in my

catluver96's picture
catluver96
Posts: 73
Joined: Jan 2013

Joe,

So helpful to me what you have shared. Thank you.

Vicki

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