Help...Need Advice.

lalilinn

Hello,

Two years ago my dad was diagnosed with Stage III NPC. He went through chemo and radiation and they told us it was one of the easier cancers to treat and that he should be fine. In December of last year my dad was complaining of back problems so he went into the hospital for a CT scan and that's when they informed him that the cancer had come back but now it was in "the spinal area near the bone". They also said since they caught it fairly early he just had to go through radiation and everything should be fine. After he was finished with his radiation treatments everything seemed fine. It was then this past Friday we received a phone call from his caregiver relaying a message from his primary geriatrics doctor that we need to pull together a support group for my dad because they feel this could be terminal. She left it at that and couldn't answer any questions which was very frustrating for the family because we couldn't get in touch with any of his doctors because of the weekend and had to wait anxiously through the whole weekend (not to mention Father's Day) to get an answer. I went to the doctor with my dad including my sister to the doctor and from the beginning every doctor we spoke with was incredibly rude to us. The day prior we requested a translator so my dad could understand everything the doctor had to say and they said that wouldn't be a problem, when we arrived at the office no one knew what I was talking about and said the translator was busy with someone else. We had no choice but to wait and while we were waiting a doctor came into the exam room and said while we're waiting for the translator she can go ahead and take his vitals. While she was taking his vitals my dad started clenching onto the table and I could tell he was in a lot of pain. That's when I said "it looks like he's hurting" and the doctor looked at my dad and replied with "Well then get into a comfortable position then!". At that point I started getting a little irritated with the situation. She sits down and starts asking us questions about the prescriptions he's taking and how he's feeling. After her questions she then says "So you do know the cancer is widespread right?" Me and my sister look at each other confused and said "Uh, no." The doctor's body language quickly became tense and immediately said "Well...uh....let me get the translator" and leaves the room leaving just me, my sister and my dad. My dad looks at me and asks "What did she say?" and that was one of the worst feelings I've ever felt and I couldn't bring myself to say it and I just said let's wait until the doctor comes back. All of a sudden I had 3 doctors come in with the translator. They treated us as if we were another number and they were quickly going through everything so that they could move on to the next patient. The urologist then says that the cancer had come back with distant metastasis and it had spread to his lungs, liver and bones. He wasn't specific enough so I don't know was it all his bones, did it get to the marrow, etc. He was cold and dry about everything and just said "it's not curable, but it's treatable". When we asked why they didn't catch this in December when they thought it was just that spot in the spinal area they said it was probably too small to see. That's all he had to say then he leaves the room so we could talk to the next urologist about his treatment. He's going to go through 2 cycles of chemo starting this next Monday and after the 2 cycles he'll go back for a CT scan and see what the progress is and they will take it from there. When I asked what the life expectancy for this type of case was he wasn't really clear with me and said probably a year. We're looking into finding a second opinion now but there's so many choices out there it's hard to narrow it down to where we can go. My dad has Medicare so that makes it more difficult for us to find a specialist where we can go because everything from how they treated us to how they communicate to us infuriates me and I need to find someone that can clearly tell us what's going on. Any thoughts or suggestions?

jim and i

Find Another doctor
Find another doctor as soon as you can. I really get upset with doctors who are so uncaring and treat patients like just another number. My question would be, "How can such a small spot spread that quickly in a few months. I would think about talking to a lawyer after I find a new doctor.

Praying that God leads you to a compassionate doctor and team.

Hondo

jim and i said:

Find Another doctor
Find another doctor as soon as you can. I really get upset with doctors who are so uncaring and treat patients like just another number. My question would be, "How can such a small spot spread that quickly in a few months. I would think about talking to a lawyer after I find a new doctor.

Praying that God leads you to a compassionate doctor and team.

Hi lalilnn

I am very sorry you and your Dad are having to go through all this with some butt hold doctors who don’t seam to give a care. I too am NPC and my NPC came back on me three times but it was all in the same area twice on the right side and once on the left. I know what you Dad is going through as I been there my self, just hang in there. If I was you I would start looking for a different doctor but make sure it is a doctor who knows about NPC cancer, not all doctors know how to treat this type of cancer.



Take care and keep posting
Hondo

Kent Cass

Hondo said:

Hi lalilnn

I am very sorry you and your Dad are having to go through all this with some butt hold doctors who don’t seam to give a care. I too am NPC and my NPC came back on me three times but it was all in the same area twice on the right side and once on the left. I know what you Dad is going through as I been there my self, just hang in there. If I was you I would start looking for a different doctor but make sure it is a doctor who knows about NPC cancer, not all doctors know how to treat this type of cancer.



Take care and keep posting
Hondo

lalilnn
I second Hondo's advice. Are you located near a major C medical center? That would help. You will likely never know the possibilities which might be best unless you get an in-depth analysis at such a place. I, too, was NPC stage-3, and it's been 26-months since my last rad. Hopes and Prayers for your Dad, and you. And please keep us updated.

kcass

lalilinn

Kent Cass said:

lalilnn
I second Hondo's advice. Are you located near a major C medical center? That would help. You will likely never know the possibilities which might be best unless you get an in-depth analysis at such a place. I, too, was NPC stage-3, and it's been 26-months since my last rad. Hopes and Prayers for your Dad, and you. And please keep us updated.

kcass

I live in Dallas so we're
I live in Dallas so we're near UT Southwestern which a lot of people have said great things about them. When we tried to get in contact with them they tried to refer us to go to Parkland, the neighboring hospital that is also a teaching hospital and is notorious for their awful service and that is actually where we are going currently, thus the horrible service we've received. I'm currently looking into MD Anderson and some other places, we're just so restricted because my dad has Medicare. When I tried to call Cancer Treatment Centers of America they basically told me that they're too good for Medicare and I've come to a lot of dead ends because of it.

Hondo

lalilinn said:

I live in Dallas so we're
I live in Dallas so we're near UT Southwestern which a lot of people have said great things about them. When we tried to get in contact with them they tried to refer us to go to Parkland, the neighboring hospital that is also a teaching hospital and is notorious for their awful service and that is actually where we are going currently, thus the horrible service we've received. I'm currently looking into MD Anderson and some other places, we're just so restricted because my dad has Medicare. When I tried to call Cancer Treatment Centers of America they basically told me that they're too good for Medicare and I've come to a lot of dead ends because of it.

MD Anderson
One of the sad parts of our Great medical system, if you don’t have the right insurance or Cash in hand they do have time for you or care much about you. I think it is a good idea to try and go to MD Anderson that is if they will take Medicare, they good work but they cost a lot. ON CTCA I heard a lot of things about them that I don’t like and that pretty much fits with what you are saying. I hope things work out for you, keep fighting and keep kicking the door, sooner or later someone will answer.

Wishing you the best
Hondo

nocturnalin

Hondo said:

MD Anderson
One of the sad parts of our Great medical system, if you don’t have the right insurance or Cash in hand they do have time for you or care much about you. I think it is a good idea to try and go to MD Anderson that is if they will take Medicare, they good work but they cost a lot. ON CTCA I heard a lot of things about them that I don’t like and that pretty much fits with what you are saying. I hope things work out for you, keep fighting and keep kicking the door, sooner or later someone will answer.

Wishing you the best
Hondo

lalilinn's sister....
Hi everyone-
I'm lalilinn's older sister. Thank you to everyone for your response. It means alot to know someone cares because no one seems to give a hoot about anything. I was just wondering what the doctor communicated to you when the cancer came back. Was it considered metastatic cancer to local region? We've been desperately searching for any naso-meta survivors and everything we find says there's just no hope.

Another issue is that our dad has a chemo appt scheduled tomorrow. We are currently waiting to for the hospitals to provide our dad's medical records so we can seek another doctor's opinion. However, the doctor has our dad to start chemo tomorrow. We want him to get treated asap but wondering if its best to hold off so we can go see another doctor. It's such a hard decision bc the longer we wait the more time the cancer has to grow. I'm thinking its better to hold off. The new doctor does have experience with naso cancer - his office said they could get us in within a week but they need medical records first.

We appreciate any feedback, opionions, and suggestions.
Thank you.


Linda