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No more treatment, now what?

mfacnason
Posts: 4
Joined: Feb 2004

My brother in law has opted not to have radiation or chemotherapy for his head/neck cancer. He has three large tumors, one on each side of his neck and one in the front.  He is very tired, gets dizzy easy and is popping morphine like crazy. Wondering if anyone had any similar experience.  I am trying to figure out what to watch for and wondering how quick things progress once treatment has stopped.

 

CivilMatt's picture
CivilMatt
Posts: 2982
Joined: May 2012

mfacnason,

I’ve read on this forum what treated cancer can do, I can only imagine the veracity of untreated cancer.  I won’t attempt to predict a timeline or mental and physical presentations, which are beyond my comfort zone.

I wish your friend the wisdom and clarity of judgment needed and peace with his decision.

Matt

Ladylacy
Posts: 484
Joined: Apr 2012

First I'm sorry about your brother-inlaw.  No one knows how fast the cancer will progress.  But you should honor your brother-in-law's decision.  There are probably things he is not telling anyone.  When my husband was diagnosed with laryngeal cancer 3 years ago, he underwent radiation and chemo and had a horrible time.  But we found out when he started having breathing troubles that the cancer had reoccurred and were sent to a head and neck specialist because our local ENT said he didn't do the surgery anymore and that a H&N specialist was needed for the surgery.  The specialist told my husband that without surgery he would give him a year to live.  Well my husband had the surgery and did quite well for one year.  Then he was diagnosed with a second primary and underwent radiation and chemo again.  Then less than 6 months later the second primary had reoccurred and spread.  Only option was chemo this time and my husband elected no more treatment.  Our sons and I are respecting is wishes and have not tried to get him to change his mind and after reading so much on this board and others, can understand his decision.  

Now 5 months later he is doing okay and at times if it wasn't for the lost of his voicebox and use of his feeding tube, I wouldn't think he was terminal.  Yes he has low energy levels but still does what he wants, when he wants and has pain but that is controlled by lortab 10-325 and for which he doesn't take that often because he says it makes him sleepy and he doesn't like to take medicine.  All of his doctors have said they won't say how long because they don't know.  And I agree only God knows and no one is promised today or tomorrow.  I also realize that he could go downhill very fast and when the time comes hospice will be called in.  I also know that if the pain becomes too bad that we can't controlled it at home, then he will have to go to in-hospice care, something he doesn't want so I also think that is something he won't complain about.

Wishing the best to your and your family.  Sharon

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

This is a very hard discussion to make and I agree with Sharon that you need to honor his wishes. I must ask is this his first time taking radiation and chemo, I had NPC cancer and it came back three times but I did treat it the first two times before I opt not to treat it the third. There are other options to radiation & chemo but you can’t get them here in the US.  This might be something you want to look into for him and let him know. I wish you and your brother-in law the best and will keep you both in my prayers.

 

God be with you

Hondo  

corleone's picture
corleone
Posts: 163
Joined: Jul 2012

You haven’t mentioned if this would be the first time he is being treated or not. Because this makes a HUGE difference! You said something about treatment being stopped, but I am not clear what that means. Also, when you mention 3 tumors, maybe the 2 on each side of the neck are enlarged lymph nodes, and the tumor is actually somewhere “in the front”. The point is, if this hasn’t been treated before, it would be (in my opinion) a big mistake, not the treat something that is highly curable (60-80% sometimes even 90% depending on the stage and other factors). If he hasn’t been treated before, please have him reconsider carefully his options. If this is a reoccurrence, it’s an entirely different story, and he already knows what’s best for him.

mfacnason
Posts: 4
Joined: Feb 2004

Hi Corleone,

He had three rounds of chemo and when scanned the tumors had gotten worse and mets in his lungs have multiplied so doctors stopped the chemotherapy.  They told him he could have radiation to try to shrink the tumor in his neck which is pressing on the carotid artery to help with the pain, but they were only going to do an abbreviated 10 rounds at Yale for pain control.  We are working with the VA.  Because of the mets in his lungs, they are not being aggressive at all.  He is in alot of pain and I have a feeling we will be looking at a morphine drip soon.  I do not know what else we can do for pain control.  The reason he said no to any treatment is because they have pretty much told him he is terminal and nothing will help.  He saw what the radiation did to some of the other vets at the hospital and he opted out. Said what he saw was terrible. Didn't want to go through it. I hope he's making the right decision.  My husband, his brother, is quite upset.  I am just trying to prepare myself. Don't know what to expect.

 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

I'm sorry to hear about this. 

You said he was seen at the VA hospital. Is there any way he could get a 2nd opinion at a CCC? Perhaps there is a pallitiative care option that will at least make him more comfortable.

Positive thoughts and prayers

"T"

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Double post.... 

hwt's picture
hwt
Posts: 1950
Joined: Jun 2012

Perhaps your husband could convince his brother to have a 2nd opinion. Afterall, what could it hurt. I'm sorry your family is having to face this. It's a difficult choice.

God bless your family,

Candi

corleone's picture
corleone
Posts: 163
Joined: Jul 2012

It’s difficult to decide what to do, and I don’t think anybody has a clear answer. The radiation would definitely help with the pain and keeping in control the growth at the head and neck level, and the side effects are not comparable with what we have been through if the dose is only palliative. The other problem is with the lung mets; maybe he will consider a clinical trial, but might not be eligible, due to the different issues he has. I second the other ones, look for a 2nd opinion.

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