Hospice Questions

[Judy M.]

Saw my new Oncologist today and talked about coming chemo and she brought up hospice. It seemed to me that she was offering me hospice or going ahead with the chemo. She said I qualify for it whatever that means. My daughter was with me and said she was also saying I could have hospice along with my chemo to address my symptoms and quality of life. I've never heard of that. Has anyone else? And I already have a Palliative Care doctor so what would hospice do that she doesn't. I find this a bit confusing. 

Judy M. 

[Tom Galli]

Judy,

It is confusing.  Accepting hospice care, for insurance purposes, means stoping curative care.  Did your doctor recommend stopping your forthcoming treatment?  Alternatively, might your doctor been explaining a treatment method when curative methods are exhausted.  This was a very odd statement if she flat-out suggested hospice care.

Thankfully, we have medical choices and you make the choices.  In my future, if I have a recurrence and don't qualify for one of the new "exotic" methods, I might chose hospice care.  But, it would be my choice.

I hope this is all a big misunderstanding.  Strange...in the extreme!

Stay the course.

Tom

[Judy M.]

Tom

Glad to learn I wasn't wrong to be confused. She did not suggest stopping my forthcoming treatment and is in fact setting it up for the first of October. I have radiation the next two weeks. And my son and grandson are coming in to visit the 22-26. Told her I didn't want to start chemo until after then because I don't want to be sick for their visit. And it's only a matter of a few days delay. Perhaps my daughter was the one who was confused. I thought she was simply telling me I qualified for it and giving me a choice. Either way plan is in place. Radiation this week and next and chemo starting Oct. 1. This will be a rough chemo and I have wondered how my body will stand up to it after all the treatment I've had, especially recently. She actually seems to think the chemo will make me feel better if we can shrink the tumors. She may be right. Nothing but radiation has ever shrunk my tumors. And I did feel better when that happened. 

I did have to give a lot of thought and prayer to whether I wanted to do this chemo, and they knew that. Talked about that elsewhere. perhaps that's why she brought it up. And she ask about my pain. I do have some level of pain all the time now in spite of pain meds. Thus, the radiation. 

For now plan to do radiation. They shortened my treatments to 10 minutes because I could not lay still on that metal table for the 40 minutes plsnneed for the first SBRT on the metal table because of my pain level in my left hip and knee even with pain meds. So, I'm wondering if I'm no longer getting SBRT. Will ask next treatment tomorrow. Still waiting to hear from email I sent to nih. Hoping they may have something new up their sleeve. 

Good news is I had CT to check for brain Mets today and still no brain Mets. 

How does one qualify for hospice? Do you know? I thought it was simply a choice at any point. 

Judy M. 

[Tom Galli]

Judy,

For insurance purposes, I’ve been told a doctor needs to project one will die within six months. At least, that is what my insurance benefit counselor told me. 

Stay the course. 

Tom

[BridgetO]

I agreee with Tom that what the doctor appeared to be saying was very confusing. It's ;my understanding also that to get hospice the doctor has to say that you have less than 6 months to live, and that you have to give up curative treatments. It sounds like you've decided to do the chemo and also the radiation, You have a palliative care doc who is presumably doing what can be done to relieve your pain as well as work with you on quality of life. It almost sounds like the doc is confusing hospice and palliative care. 

Hang in there, Judy

Bridget O

[LexieCat]

Maybe she was just reminding you of the availability, if it ever gets to the point where you've had it with treatment?  

Keeping you in my thoughts, Judy--I sure hope something kicks in for you.  

[Judy M.]

Thanks everyone. Now it makes a little more sense to me. Since I'd seen her last I've had a pleural effusion of my left lung where a quart of fluid was drained. Even though the effusion showed no cancer cells and has not returned I did read that someone who has a pleural effusion generally has 6 months or less to live. And also since I last saw her I've been put on full time oxygen. This is, according to my Pulmonologist, the result of a COPD flare up. This is the second time this has happened in recent months. The previous brain scan I had showed sinusitis. Sinusitis resulted in COPD flare up which resulted in oxygen use. Sinusitis getting cleared up and a course of steroids enabled me to get off the oxygen. Latest CT showed no mets, but again the sinusitis. Pulmonologist has given me  Antibiotic and steroids, but obviously from the CT the sinusitis is still there. Plus, my temp was just slightly high today and white blood cells were high. Plan to see my PCP. She will treat the sinusitis aggressively which seems to be needed. Especially before I start the chemo.  The Pulmonologist was simply guessing I had an infection and didn't treat aggressively. And will be much easier to see my PCP than to try to see my Pulmonologist again. Oncologist had ask when I'd again see my Pulmonologist. Perhaps Oncologist was responding to seeing a sicker patient than she saw on our first visit. 

Judy M

[Steff]

Judy,

To ease your worry about pleural effusion, my mom was hospitalized one a year ago for pleural effusion. It was due to being full of infection. She was in the hospital for nearly 2 weeks. They drained over 2 liters of fluid - no wonder she couldn't breathe! Now I know that anything can happen at any time, but 1 year later my mom is going stronger than ever (knock on wood). 

I'm also confused along with everyone else about what your doc said.  I learned quite a bit about hospice with my grandpa. Yes, the 6 month thing is true. However, my grandpa was on hospice for 6 years! He was in congestive heart failure from COPD. So, even a suggestion for hospice is not necessarily a death sentence. 

[Judy M.]

Steff

Thanks for the encouragement regarding the pleural effusion and hospice. I needed that after today. And I was also keeping in mind that Tom said somewhere he'd once only been given 6 months to live. The battle is certainly rough right now, but I'm not giving up. I believe the Lord will come for me when it's His time. Until then it's up to me to trust Him, keep praying, and keep choosing to live every day with thanks and joy. You guys are such an inspiration and help in doing that. 

Judy M. 

[Susan Cornett]

Thinking of you, Judy.

[PaulaC]

Praying for you Judy. 

[Judy M.]

Thank you so much. 

Judy M. 

[Tom Galli]

Judy,

I've had a couple of plural effusions and was even on oxygen for a period.  I'm still here.

Stay the course.

Tom

[Judy M.]

Yes, you are Tom. And how thankful we all are for that. ☺So, Lungevity Forum has just destroyed another statistic. 

Judy M. 

[Judy M.]

Asked today if I am still receiving SBRT on my hip and knee or if I'd been changed to another type because of the pain limiting the time I could lay still on the table. I know a standard radiation treatment doesn't take as long as an SBRT treatment. Glad to learn I'm still receiving my originally planned SBRT. My sweet radiation techs have just gotten a lot faster and worked as quickly as they could. I was among the first if not the first SBRT patient they had. They've become much faster since then. They said they first worked to become very accurate because it's important in SBRT. Then they worked to become faster. As I've said before, radiation techs rock, and I'm a big fan of SBRT. 

Judy M.