Another month gone by and still haven't seen Oncologist

[pattimarzano]

I really don't know what else to do. I had the second biopsy, ordered by my Pulmonary Hypertension Specialist, who has moved from Denver to Alabama and is no longer here. The biopsy came back non small cell carcinoma in a tumor in the left lung. I have had zero treatment. I have no insurance, but am set up through the Indigent Program at the hospital. I am 60 years old and am truly being a squeaky wheel and now they just don't call me, they have a nurse call and tell me to sit tight. It's not me that I'm worried about 'sitting tight' its this damn cancer that I am certain is growing. That's what cancer does isn't it? I'm sorry to vent like this, but this is ridiculous. If I had Blue Cross Blue Shield I'll bet I'd know what stage I'm in and whether or not the lymph nodes are involved.

[Connie B]

This is REDICULOUS! Why can't you go into an ER with SOB and CHEST PAINS and get this ball rolling?

Have you talked to ANY Social Worker person as to what to do? Welfare, SOMETHING??

I have a friend who's brother had serious health problems (that I might add he brought on himself) (NO INSURANCE walked into a hospital got admitted and was in ICU for 8 days and in a reg room for 4 days and walked out just fine. Never paid a penny of the bill. There's help out there!

Good luck!

[Patti B]

((Patti))

So now I am riled up!!! Its bad enough to have a diagnosis of cancer and then be left out to dry!!!

I agree with Connie - go to the ER!!! I know here in Ohio they have signs in the ER waiting rooms that say you CANNOT be turned away due to no insurance or financial status. Maybe if you get yourself admitted the social workers there or the indigent program there can get the ball rolling. As long as you are at home, they could care less. Tie up one of their beds and have them think they won't get paid - bet that'll get them going!!!

Our medical system in this country just SUCKS!!!! I feel so bad for you - wish there was more I could do!!!

PLEASE let us know what happens!! I wish the best for you!!!

Many, many hugs - Patti B.

[SandraL]

Hi Patti. You just go ahead and vent. Waiting is simply awful. If you are feeling really badly, shortness of breath in particular, then you should go to ER. That's what ended up happening with me.

I want you to know that you can experience this awful wait and still have successful treatment because I sure did. Even though when I first walked into my GP's office saying I thought I might have LC...still had to go through system protocol and not until I could hardly breathe was I instructed to go to ER. There I had biopsies, etc. and was staged. Then think it was well over a month after that before I met with doctors at cancer clinic. And then a fair bit of time before treatment began.

So you can experience the wait and still be able to successfully fight this thing. Keep being the squeaky wheel. Take care

Sandra

[peebygeeby]

Patti,

Absolutely. I agree with everyone else. Go to the ER. They can't refuse you.

When the system is not working for you, you have to force their hand by what ever means necessary.

Good luck!

Gail

[carolhg]

Go to the ER and get yourself admitted to the hospital. Ask to speak to the hospital social worker. Speak to that person from your hospital bed and let that person get the ball rolling for you. It is bad enough to wait with insurance coverage yet alone without it and wondering.

Carol

[Ry]

The hospital should have a patient advocate on staff. Call and speak to that person and explain your situation. You need to be seen immediately-- it's been too long. Every day they wait your cancer is growing. Do you have a GP? He or she may also be able to help you. The ER is a good suggestion, but if it's like our hospital it may not get you anywhere. Good luck-- keep us posted.

[pattimarzano]

My NP suggested that too a few weeks ago, so I went and said I was SOB and had chest pains, well of course I didn't and they watched my Pulse and my O2 in my body, and did all the heart monitors and of course they showed nothing. At that time I let them know that I had been diagnosed with lung cancer and could I please talk to an Oncologist. There is no "on duty ER Oncologist" since lung cancer isn't an emergency room problem unless its related to treatment of which I hadn't had any. So they released me and pretty much said 'nice try, don't do it again'. I am going to try the other suggestion of a social worker at the hospital. Tomorrow I'm going to call the NP again and tell her I STILL have heard nothing. I have Pulmonary Arterial Hypertension and Scleroderma, so I have pretty good doctors, I just don't have any insurance yet and medicare should kick in this year. Not that that'll do much good anymore...a lot of colorado doctors aren't taking medicare. This is too much. I am beside myself and I know stress is bad. I'll let you all know what the NP says tomorrow. Maybe I should just go out there to the hospital and refuse to leave until I have an appointment?

[Ry]

I hope the NP is helpful. If not-- see if there is a patient advocate. I think most accredited hospitals must have one on staff. Good luck!

[pattimarzano]

Thank you all so much. I'll let you know what happens after tomorrow. Before my PAH specialist left she told me that chemo was out because of the damage done to my heart from the right heart failure and that radiation was out due to the condition of my lung from the Scleroderma so I'm pretty perplexed as to what else there is as I know nothing about cancer. We'll see, won't we? Thanks everyone for your kindness. I was so hoping I could find this kind of support and luckily I did.

[liznj226]

Patti,

Not sure if this will help but here is a link you can try for assistance:

http://www.chcpf.state.co.us/

I hope everything works out for you and my prayers will be with you.

[JocelynM]

I know a little bit of what you're feeling. I had a really slow doctor - took more than a month to tell me about the chest xray. Took another month to tell me about the ct scan. She's not my doctor anymore.

Could you try fainting on the sidewalk by the main entrance? A nasty lawyer letter?

I could say a lot of bad things about NY state but we sure do treat people w/out insurance better than CO! (And I pay the taxes to prove it.)

I've noticed that some people are better at making the system work than others. How do they learn to do that? Are there any advocacy programs in CO?

Wish I could help more but here are some hugs

((( ))).

Jackie

[Connie B]

Dear Patti,

Regarding the issues of your heart and your scleroderman (which I know nothing about). I would like to share with you that (IF) my cancer or (IF) I ever get any kind of cancer again, I am not a candidate for any kind of chemo or radiation because of my heart issues. I'm pretty much SOL if I ever get cancer again. Not the best news to hear, but felt I should share that with you.

Keep us posted on how things go for you, but I sure wish you all the best. This medical system of our just SUCKS!

[shineladysue]

Patti,

I don't have answers, just prayers. Hope you get help soon. Will be looking for your posts.

Hugs,

Sue

[alexan]

Yes Patti, just do what Connie said. And exagerate a little so they see you sooner. This is crazy. Hope you can start with something soon.

best of luck bucky

[pattimarzano]

I spoke to the Social Worker and told her what was going on. She asked me if I had medicaid, medicare or any insurance....I told her no but I had CICP which is Colorado Indigent Care Program and that I had it well before the cancer diagnosis, so why should I need anything else at this point to just see an Oncologist. She agreed with that and pulled up my med file.

I pointed out to her that this growth was first found in June 07 by CAT and it was recommended to do a PET which was done in July. It showed a nodule and some shadows that 'could be' malignant with lymph nodes involved. It was 1cm. It was recommended I do a needle biopsy because my heart is bad and I can't undergo anithsetic. The needle biopsy was done in November of 07 and it showed Severe Squamus Cell Dysplasia possibly with cancer nearby and recommended another biopsy. The doctor felt that because of the PET positive test that this biopsy was wrong and the Oncologists she was talking to agreed. They all wanted a 2nd biopsy. The second biopsy was done on the 1st of March and it showed Non Small Cell Carcinoma and the tumor is now 3mm. It has tripled.

Her response to all of this was "Oh, that's not good." I agreed. She said she'd get back to me in one or two days. I said "Thank you" and hung up and started logging.....I know that without treatment, the average survival rate for LC is 8 months. I'm at 9 and am doing okay. Who knows for how long? The meds I take for PAH make my breathing easier....why aren't I on Iloprest? Its a PAH medication for gosh sakes!! They are using Iloprest for cancer these days I hear. I don't know...maybe my Tracleer will do the same thing as Iloprest...who knows? If I were a drinker I'd need a Margarita right now.

[Patti B]

Patti -

Now call her back TOMORROW and if she doesn't have any answers, call her back the next day. Tell her you CANNOT wait through the weekend!!! And if push comes to shove, ask to speak to her supervisor!!! This is no way to treat another human being!!!

Even with no option of chemo or radiation, something like Tarceva could be an option for you. So please don't give up hope!!!!

Keep posting us with your updates - just don't give up calling them!!!

Good luck and God Bless you- Patti B.

[pattimarzano]

My daughters sit in worked!!! We have an appointment on wednesday the 23rd at University Hospital. I'll let you all know whats up.

Thank you for all the caring and all the good advise. Perserverance is where its at I suppose.

[JocelynM]

I am SO glad you are finally getting to see a Dr. (((Patti)))

I have to say, your situation made me very angry and I can only imagine the frustration you must have felt. I always thought that Colorado was a fairly enlightened state!

I know my oncologist donates a certain amount of time and chemo drugs. I've heard the nurses talking about it. Perhaps there's someone like that where you live.

Hopefully now you will receive the treatment you rightfully deserve.

Jackie

[pattimarzano]

Thanks girlfriend. What kills me about this whole situation is University Hospital is a teaching hospital so all of the doctors are on salaries. They get paid no matter what. As long as I only had 2 rare diseases and was willing to do the clinicals they were great about paying and tests and treatment....they still are for those 2 illnesses...but when the cancer reared its ugly head they backed off and started giving me such a hard time. I hate it when it is so clear that its all about money. This will be an expense for them. As you know Cancer isn't cheap. But I also know that there are grants, donated monies, etc etc etc but they don't want to give me any of that because I can't do the expensive treatments and they consider it money wasted because I have other terminal illnesses so they don't care if I get any relief or not. What they don't know is my grit. I will dance on their graves. It might be with an oxygen cannula but I WILL dance on their graves.

[jaminkw]

Patti: I'm going to jump in here and say I love your spirit! The 23rd must seem like ages away but at least it's finally an appointment. With the others, I'll be looking for your post on the outcome.

Best of luck, Judy in Key West

[Patti B]

You go, girl!!!!

I am so happy that you finally got an appointment. Sounds like they didn't know who they were messing with, huh!!

Keep up the good work!!!

Hugs - Patti B

[pattimarzano]

Thanks girlfriends. I get this spirit from my team mates. All of you. We are all in this together. I am in awe of you who have had all the treatments and emerged on the other side of the tunnel. What greatness. You urge me on in whatever direction there is open for me. Looks like it'll be Medical Marijuana at this point, but what ever....as long as it works, right?