Gosh, what a mess, Leslie. I wish they could go to a different doctor, his sounds like he's burning out.

I'll keep a good thought for your nephew and the whole family.

I'm so sorry for all the pain your family is going through. I'm sure they're too shell-shocked to realize they should be making a big stink about not getting decent care and not getting straight answers. I'm glad your nephew is going to go in and demand answers. I agree that a change of doctor is in order. Has anyone contacted the American Cancer Society for support and help with the medical mess? I'll remember him in my prayers.

Vikki, my heart is breaking for that young man and your family. How awful for you all not knowing what is going on.

Special thoughts going out to Alan.

Anne

I am truly sorry that this is happening......I wish our government would provide medical care for those who can't afford it or don't have insurance...it is crazy that it is like a pick and chose type deal...I am sorry hugs to everyone...stacy

i'm so very sorry

Vikki, will St. Jude's pediatric take him? He might be too old. There's one in Fullerton, not sure if there is one up by you. They treat patients regardless of their ability to pay I believe and are known for their cancer treatments.

This is such a sad story and I think of your nephew often. My healing thoughts go out to the entire family.

Jodi-

Oh my god, this is horrible. I think at the very least you should ask for a second opinion at Loma Linda and also ask for social work assistance.

And I like Jodi's idea of contacting St. Judes.

I'm so sorry. This has to be a living nightmare for you and your family. I'll be keeping you in my thoughts.

I am surprised this is at Loma Linda. Please, contact the head pastor at the 7th Day Adventist church for help also. Please ask for the head of the dept. Do not let one Dr. ruin his life. You ask every queation you can think of and demand answers. This is a church/hospital that is know for its missionary/health work all over the world, and they do much of it free. It is only fair they treat our own people the same way. Sorry, this is a sore spot with me.Also if he is under 18 the state will pay for the medical.

His mom called a few of the cancer centers and it always comes down to what kind of insurance does he have? when they find out he's on medi-cal because he can't work and is 25 they say sorry we don't take medi-cal. She is on the phone trying everything....they all say the same thing pretty much. His dad is in construction and isn't working much these days....really struggling. They have to take him for chemo everyday, not sure how long, but the gas is going to break them. They are going to stay at my sister's a few days a week. The hospital is an hour away from them and my sister is right in between them and the hospital, so that will help. My other sisters, 2 brothers and I are all going to send my sister $$ now and then for her to give them when they need it. That is no worry now for them. I worry about him going back and forth not feeling good. I hope all goes well....thanks everyone for your prayers and good thoughts.

Oh dear, what a heartbreak.

This is all so sad. It's hard enough just having the illness and dealing with that, besides worrying about money and whether you are getting the treatments that you need. I wish I could help.

Makes my heart hurt!

I'm so sorry!

So sorry for Alan. I hope he can find some help.

Here are some other possibilities to check out: cancercare.org/get_help, patientaccessnetwork.org, Partnership for Prescription Assistance or pparx.org, and healthwellfoundation.org.

How frustrating for all involved! I have asked for lots of prayers lately and I'm surely glad to give some too! Big time ones for your family.

Barbara

Oh no! This is so heartbreaking! Surely there's some kind of help out there! No human should be treated like that!!

Thoughts & Prayers heading that way!

I wonder if contacting the media regarding the wretched insurance company would help? Probably not, but they don't like bad publicity and they should be paying for that!!! maybe they will change their tune if a big enough stink is made. argh...medical insurance companies make me so angry!

Unbelievable that this is happening! Your family must feel hopelessness and desperation. The very idea that Medi-Cal would pay to open his skull but refuse payment for closing it & Dr. says wear a motorcycle helment for the rest of your life cries out for PUBLICITY!

contact local newspapers (ask for writer of Health column) and TV stations; they often seek human interest stories, and if this isn't one there never was one. Loma Linda has had a lot of wonderful publicity through the years -and bet they'd not like having this story hitting the airwaves. Goes for the Dr. as well.

Can you find name of director of Medi-Cal online? Bet their Senator or Congressman can tell you.

Meantime, I'm still praying for Alan.
Suzi

Strong prayers going out to Alan and his family right now!

Have you called UCLA and talked to Dr. Black? Keeping Alan in my prayers, as well as the entire family. How sad.
Leslie

Your nephew is 25, and unless your nephew has given the Dr permission to discuss his medical care with parents, the doctor cannot discuss with them, nor can they make any decisions concerning their adult son, unless he had given them and the hospital and a signed durable power of attorney for health.

I understand their reluctance to operate on spots when others have occurred. They have to weigh the fact(with the patient) that surgery may be fruitless in your nephew's quantity and/or quality of life. The medical insurance company must also weigh the merit(if any) of additional costly surgery.

My late DH and I went through this when he needed surgery for an abdominal aneuryism while he was undergoing chemo for unrelated cancer. Surgeons told us that the protocol for doing the surgery(by both medical and health insurance policies) was an expected life span of two years, and at they said it was more likely that the cancer would kill him well before the aneurysm. Thankfully, chemo started to work, and they agreed to do surgery. But...in the end, he died from cancer only 14 months after the surgery...The doctors were right.

Thoughts & Prayers heading that way!

Sending comforting thoughts and easy hugs to all involved. Janie

This is so very sad. Heartbreaking. I'm so sorry.

Can your nephew's family get him to UC Irvine Medical Center? It's a teaching hospital, and it's a county facility -- it's my understanding that they have to take everyone, regardless of insurance.

Sending your family big hugs. I agree with Flamey, it sounds like the onc doc is burning out. It must be so frustrating for the doctor as well to want to do the best he can for each of his patients but know that his hands are tied by insurance companies. It does sound like the next step will be palliative care since he has so much metastic spread.

How awful for him and everyone in your family. I hope he gets some answers soon.

Vicki, I am continuing prayers for Alan, and all the rest of your family.

Tami

Thanks again everyone...I am giving all the advice to my sister to passs on to them. He did give the doctor permission to discuss everything with them. He was terrified and needed them to be involved every step of the way. Lindsey they are close enough to Irvine, they are out by Morongo...almost to Palm Springs. I will let them know about the teaching hospital. And Leslie I believe I gave her the doctors name at UCLA a few months ago..I'll check with her to see if they tried to call there. I have a feeling your right about the doctors hands being tied and there really is nothing to do for him but the minimal. Sad to think about, but I think it's reality and they are figuring it out now. I just wish they'd say so for his sake. I hate to see him on this roller coaster, he does want to know how long they can buy him or if they can. I just can't really imagine what he's feeling...not sure I want to, it has to be terrifying to know you will soon die and no one can help you. He's on my mind all the time...

This is really just horrible. I didn't know that you could be denied treatment like that. I don't understand why there is even a question as to what should be done. I mean, shouldn't anything and everything be done regardless of what his financial status is? Even if things look bad for him, why wouldn't the doctor(s) at least try. If he is willing to go through it and fight, I think they should do all that they can.

My heart breaks for you, your nephew and your family. I am so very sorry about all of this.

Sending prayers and extra special thoughts.

Vikki, just so there is no confusion if your family tries to find it, UCI Medical Center is actually in the city of Orange, not Irvine.

It's at the 5 freeway and State College/City Drive. Across the street from The Block shopping mall.

The address and phone number is: 101 The City Drive South  Orange, CA 92868  714.456.7890

Jodi-

Reading what your wrote makes me angry...angry that your poor nephew is being treated like this at such a time in his life. It's hard enough coming to terms with dying, but to be treated like this on top of that is just plain wrong.

I hope that he's able to get some answers.

I'm so sorry this is happening.

Thanks Jodi..I actually looked it up and sent them the website. I have seen it before when we go to the The Block mall. I hope they can do something for him. It is so wrong to not help him IF they can just because of his insurance status..or lack of. It just sickens me to think of the people who have passed away because of this kind of situation. Sad, sad system we have here.....makes no sense to me! I could understand it more if they say that the treatments they are refusing will do no good, but he isn't getting many answers lately. It's scaring us. This doctor shouldn't have got his hopes up until he ran all of the test on him to see what he was dealing with a month ago.

Thoughts & Prayers heading that way!

What a tragedy and I'm so sorry Alan has received this inexcusable treatment.

Special thoughts for all of you, Vikki.

This is just awful.

I'll say prayers too.

Gwanny,
Six months after my stem cell transplant I was told that it didn't work and the cancer was "raging". I was sent to City of Hope in Pasadena where I was told to go home and get things in order to die.
We couldn't accept that, changed doctors and my new one contacted her mentor the head of oncology at Scripps San Diego. I was accepted into a trial treatment (different type of stem cell transplant). I would be the 1st person to undergo 2 stem cell transplants less than a year apart. It's extremely hard on the body. My odds of survival on a good day were 25%. That was 8 years ago :)
We believe the reason why the City of Hope wouldn't touch my case was because they anticipated my demise...it doesn't look good for a hospital to have a sure death on it books. And I suppose I understand that part, but way I was treated sticks in my craw. I wasn't offered nor did that "certain" doc seem interested in helping me survive.
We were way past fortunate to have come upon a doctor who knew a doctor...
My thoughts are with you and your family.

My heart breaks when I hear of things like this. There is no reason for it. I would think about demanding to talk to the chief of staff for answers. I hope they find the answers they so desperately need. I will have Alan in my thoughts and prayers. As well as the rest of the family, including you.

(((hugs)))

I'm so sorry this is happening. Can't believe that the insurance would pay for one procedure and then refuse another.
There's some good advice in the posts above, hope something works out. Contacting local newspapers and TV stations is a good idea too, maybe the insurance company will change their stance on this, plus Alan's story might help others in the same situation.
I'll keep you in my thoughts and prayers.
Hugs,
Pranjal

I believe that the poster is ASSUMING that her nephew is being refused treatment by his current doctor and hospital because he doesn't have private health insurance and that the state insurance is refusing to pay for surgery.

Oncologists don't just rush in and operate when a cancer seems to have spread. They have to do further tests to see if it is the primary cancer or another, and if surgery could do more harm to the quality of life while not increasing the quantity. From the description I read, the doctor really doesn't have an answer at this point...not enough information.

It's a hard time, i've been there a couple of times, with DH and relatives. Decisions are tough, and treatment decisions have to be weighed by the patient, with full information from the doctors.

it is easier to get second opinions when you have private insurance, but that doesn't mean that the responses will be any more hopeful.

My heart goes out to everyone in this family. It's a scary time with scary decisions.

Gwanny my heart goes out to you and your family. I will keep you all in my prayers.

Trish

I think the part that floors us all is that they won't put his scull back together, and won't even give him a proper helmet. That is cruel, imo.

prayers for your nephew