Nasopharyngeal cancer (on behalf of my father)

MlaH

Cancer is so new to me and my family. First off, I'm on here because my family and I don't know where to turn and what to do.

My father speaks very little English so he relies on us (his children) to help. The day before Christmas, it was offical, my father was diagnosed with cancer (nasopharyngeal cancer). At first, my father was willing to go through radiation and chemotherapy. After thinking about all the complications and medical bills, my father refused to go through it.

We all cried and wanted him to go through it but then we said we have to support his decision because he is the one going through it and not us.

Now that he has refused treatment, does this mean no one will help him with anything else? My father can not eat. We have to pureed all his food. His motor strength has decreased as well.

We asked his primary doctor about referring him to see a specialist (Speech and Language Pathologist and/or Occupational Therapist) to help him with his feeding and motor strength. His primary doctor said that it is not his place and he can not refer him because it is the ENT's job. I called the ENT and he has refused to help my father because he refuses treatment.

My question: If my father refuses treatment, does that mean no one will help him at all? It just doesn't sound right to me. I understand my father refuses treatment but does that mean no one will help with his feeding and motor skills either?

We don't know what to do anymore.

Medical bills. Is there any programs out there that will help us pay for his medical bills? All of his screenings leading to his diagnose has cost alot, is there anything out there to help us?

Hal61

Hello MiaH, I'm very sorry to hear about your father. The first appointment I had with my raiolgy oncologist, whe presented me with treatment options: "And the last option," she said, was no treatment.

I don't know the anwers to your questions, but I have to guess that to get any "relief" if not treatment, your father will have to agree to see at least one medical oncologist, so that the oncologist can make perhaps prescriptions or minimal referrals. A call to the American Cancer Society in your area could probably answer this question for you. But, it sounds like you will need at least minimal involvement from a cancer specialist to get relief from pain, or treatment to alleviate the disease symptoms. Again, the Cancer Society should be able to answer this, but it is a very good and worthwhile question. The Cancer Society too will need to answer the question on finacial relief. If his "screenings" have in fact led to the diagnosis, it seems he would be eligible for care at some level, and I wish I could be more sure for you. Please follow up with CSA and let us know what they say.

My prayers are with your father,

Hal

Hondo

Hi Miah

There are a lot of us here on CSN with the same type of cancer its short name is called NPC, I understand your father not wanting treatment. When my NPC came back a third time I to opt for no more treatment but used only alternative treatment. Don’t get me wrong I think your dad needs to do the traditional treatment first and then if it does not work try alternative treatment.

Hal61 makes some good suggestions on contacting the Cancer Society for financial help, try everything you can to get your dad on treatment, there is life after Cancer and NPC is a very curable cancer

If he is still determine to take no traditional treatment then I can show you what I have been doing for the passed 5 years on alternative and also show you some web-site to go to for help.

I will send you a PM with my contact info

Kent Cass

Hal61 said:

Hello MiaH, I'm very sorry to hear about your father. The first appointment I had with my raiolgy oncologist, whe presented me with treatment options: "And the last option," she said, was no treatment.

I don't know the anwers to your questions, but I have to guess that to get any "relief" if not treatment, your father will have to agree to see at least one medical oncologist, so that the oncologist can make perhaps prescriptions or minimal referrals. A call to the American Cancer Society in your area could probably answer this question for you. But, it sounds like you will need at least minimal involvement from a cancer specialist to get relief from pain, or treatment to alleviate the disease symptoms. Again, the Cancer Society should be able to answer this, but it is a very good and worthwhile question. The Cancer Society too will need to answer the question on finacial relief. If his "screenings" have in fact led to the diagnosis, it seems he would be eligible for care at some level, and I wish I could be more sure for you. Please follow up with CSA and let us know what they say.

My prayers are with your father,

Hal

MiaH- very sorry to hear about the refusal. I can only assume the C is so far advanced that your Dad's been advised that post-treatment life would be short, and exceptionally difficult. And, that your Dad is an older man, at least 60. Is he older, and been advised of these things by his Dr.? If not- then he really should consent to treatment.

If the money is the problem- yes, call the ACS. Where I went through treatment, there was someone in each of the Chemo and Radiation offices who deal with the money thing- there should be someone where your Dad could be treated who would be able to help. That's their job, Mia.

There are a number of us who are active on this forum who are NPC Survivors. The last of my treatment was in the first week of April 09, and I returned to work a month later. NPC is a Cancer one can survive, Mia. Treatment regimes vary, somewhat, but my ENT swears by the simultaneous Chemo and Radiation treatment. Your Dad should be made aware of this- that NPC IS A CANCER THAT DR.S CAN SUCCESSFULLY TREAT, now. I don't know the specifics of your Dad's C, such as how advanced it is, but NPC is NOT a death-sentence Cancer to a lot of us who have/had it. Please make sure your Dad is made aware of this, Mia. And keep us informed.

kcass

MlaH

Thank you for all your
Thank you for all your input. I'll keep you guys posted.

lawchk

Treatment options
Miah,

I am so sorry to hear about your father. He is very lucky to have you as a daughter helping him through this. If your father is refusing treatment but needs to consider it to get help with other options, you might consider having him talk to a counselor.

I was diagnosed with esthesioneuroblastoma (another skull base tumor) a few months ago. I was one of the more fortunate survivors in that I was able to opt out of radiation or chemo following surgery. When I met with the radiation oncologist, his opinion was that I should not radiate because I was so young, but that it was ultimately my decision. My situation was the opposite from your fathers in that I was scared to NOT radiate for fear of it coming back. He recommended that I speak with a counselor since my thoughts & fears were more psychological than anything. It may be a good idea for your father to talk to someone if he hasn't already.

For more info on ENB & my story, see www.ENBfacts.com.

Hondo

lawchk said:

Treatment options
Miah,

I am so sorry to hear about your father. He is very lucky to have you as a daughter helping him through this. If your father is refusing treatment but needs to consider it to get help with other options, you might consider having him talk to a counselor.

I was diagnosed with esthesioneuroblastoma (another skull base tumor) a few months ago. I was one of the more fortunate survivors in that I was able to opt out of radiation or chemo following surgery. When I met with the radiation oncologist, his opinion was that I should not radiate because I was so young, but that it was ultimately my decision. My situation was the opposite from your fathers in that I was scared to NOT radiate for fear of it coming back. He recommended that I speak with a counselor since my thoughts & fears were more psychological than anything. It may be a good idea for your father to talk to someone if he hasn't already.

For more info on ENB & my story, see www.ENBfacts.com.

Hi lawchk


Welcome here to CSN a great place to be with other survivors like your self.

Take care and keep posting