They're driving me CRAAAAAZY!!! - UPDATE

Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
edited March 2014 in Ovarian Cancer #1
Just when I thought everything was all worked out, I get an email from Dr Sabbatini's NP. It says she has scheduled a CT scan for me on Feb 1st, the day before I get my first treatment. I email her right back....No, I had a CT scan done here just two weeks ago, at the suggestion of the trial nurse, and hand-carried both the films and the report to Dr S.

In response, I get an auto response....she will be out of the office until Feb 3rd.

So this morning, I call the doctor's office, and they put me thru to Charlene, who initially told me I would need to submit a recent CT scan, in order to be considered for the trial. Charlene says that yes, that I needed the scan in order to qualify for the trial, to determine that I am, indeed, in remission. But "for the sake of continuity", I should have another one done at SK.

"Why are you just now telling me this?" I ask Charlene. And why did Dr Sabbatini tell me that I had to start the trial no later than Feb 9th, or I would have to have another scan, since they are only "good" for 4 weeks?

"It's our radiologist," explained Charlene. She would prefer that all the scans be done here.

Well....this is a deal-breaker. No way will my insurance company pay for another scan this quickly, nor am I willing to foot the bill (several thousand dollars) becasue, (1) it's a Phase I trial, not a cure for cancer, and (2) I don't even think such a request is reasonable (nor do I think they will get many patients to sign on for this kind of thing, but good luck with that).

She says she will talk to Dr S and call me back. He's in a meeting, but "he's been responding to texts."

She does call back, and says she has cancelled the appointment for the scan. But do I have the report from the one I had done two weeks ago? Of course, but I gave you a copy - two, in fact. I faxed one prior to my consultation, and I gave Dr S's team a copy that I had hand-carried to NYC. Would I mind faxing it again? My pleasure. And what about the films? I left them with you, and you sent them back to me. They arrived yesterday, via UPS. Oh....well, they need those back. Shall I overnight them to you? Or should I just bring them with me on Tuesday? "Do you just have one set?" Yes...just one set. "Well....could you go to the hospital and have another set made, then overnight those to us and bring the other set with you next week?"

REALLY????

Thank you for letting me rant. You will now be returned to your regularly scheduled program.

Carlene

Comments

  • jloe
    jloe Member Posts: 174
    Just like I said before
    This is truly a full-time job with no pay, unlimited over time and no benefits!!!!!!! Who wouldn't sign up this job.
  • antcat
    antcat Member Posts: 270
    Your tiral at MSK experience
    Hi, we all need to vent, so don't feel bad....I do it myself. I have ovarian cancer stage 2A since 2006 and can't seem to get into a lengthy remission. I go to MSK. When I first went, I did talk about a trial but decided not to go into it because one of the criteria was CT scans every 8 weeks. That alarmed me because I have read alot of newspaper articles about the amount of radiation that a person can get from these CT scans, that a chest x-ray is the worst with radiation and that's what a CT scan is equivalent to. My previous oncologists have always said, "well the risks outweigh the benefits". Well, they're not the ones getting the radiation and it's true the insurance wouldn't pay for a CT scan after just having one. I had a PET/CT done recently and brought the dr. all my scans which I had on film, along with the reports, but they still wanted the scan done there. The dr. finally agreed to let me have it done where I live, but I decided not to do the trial at the time and go with conventional chemo. I don't know if I made a mistake or what, but I will consider another trial if it comes up. I've been having my CT scans done at MSK and they're pretty good. The only thing is it takes so long for them to call back with results, last time I had to wait a whole weekend to hear that the news was not encouraging. Anyway, good luck with the trial.
  • kayandok
    kayandok Member Posts: 1,202 Member
    Hmmmmmmm
    sounds like they are a bit unorganized.......are you having second thoughts again?
    k
  • MK_4Dani
    MK_4Dani Member Posts: 314
    adding to the Rant
    Carlene,
    I wouldn't blame you if you told them to go pound sand. The inefficiencies of the support staff in the logisitics of your involvement is a deal breaker. I would be afraid for you to get to NYC and have an appointment cancelled, don't have the proper paperwork, insurance approvals, etc. Esp. since you are footing the bill. Perhaps these are the roadblocks giving you a messages?
    My rant:
    I have to get a port flush and a doc appointment every 8 weeks. It takes me several attempts to get these appointments. The telephone system, press 1,2 or 3...puts me on hold. A voice tells me, "we are experiencing a high call volume please continue to hold and the next available...." So I hold for 10 minutes and it tells me to leave a message and hangs up on me! I want to say, "the population is experiencing a high volume of cancer, please hire more support staff." I worry about slipping thru the cracks, who is reviewing my labs and CA-125? Last doc appointment the PA told me my CA-125 and I asked the date of the lab report....it was 2 months old. I feel bad for the folks, currently in treatment, just dx, having trouble who need to talk to somebody.
    I plan on having a conversation about this at my next appointment. It is unacceptable. My question to the board: who has a cancer treatment center that: appointment are easy to make, access to a person to answer questions quickly, etc.
    Mary
  • kellyh33
    kellyh33 Member Posts: 287
    MK_4Dani said:

    adding to the Rant
    Carlene,
    I wouldn't blame you if you told them to go pound sand. The inefficiencies of the support staff in the logisitics of your involvement is a deal breaker. I would be afraid for you to get to NYC and have an appointment cancelled, don't have the proper paperwork, insurance approvals, etc. Esp. since you are footing the bill. Perhaps these are the roadblocks giving you a messages?
    My rant:
    I have to get a port flush and a doc appointment every 8 weeks. It takes me several attempts to get these appointments. The telephone system, press 1,2 or 3...puts me on hold. A voice tells me, "we are experiencing a high call volume please continue to hold and the next available...." So I hold for 10 minutes and it tells me to leave a message and hangs up on me! I want to say, "the population is experiencing a high volume of cancer, please hire more support staff." I worry about slipping thru the cracks, who is reviewing my labs and CA-125? Last doc appointment the PA told me my CA-125 and I asked the date of the lab report....it was 2 months old. I feel bad for the folks, currently in treatment, just dx, having trouble who need to talk to somebody.
    I plan on having a conversation about this at my next appointment. It is unacceptable. My question to the board: who has a cancer treatment center that: appointment are easy to make, access to a person to answer questions quickly, etc.
    Mary

    We do!
    Hi Mary,
    I would go crazy if we had to deal with that type of stuff. Where my Mom goes they really are quite amazing. There is a 24 hour hotline that my Dad used frequently to ask questions about my mom or for my mom. Someone always answers the phone and if the oncall oncologist isn't there or one of her assistants they always call back within 30 minutes. That is their promise to their patients and they have never let us down.
    When Mom goes for treatment she always gets her next two appointments. She has already been told when she goes for treatment Feb 3rd they will be booking her CT scan.
    You have the right to questions there effiency and their commitments to their patients if this is the way they handle things I would be tempted to look elsewhere.

    Kelly
  • zinaida
    zinaida Member Posts: 221
    Carlene! When i did talk to
    Carlene! When i did talk to a second opinion doctor, head of research department of UW(University of Wisconsin). He told all patients expenses and required medical test and medication can be paid by sponsors of the trial; they even have special insurance for patients in trial; specialy if the trial is done by the National Cancer Institute. Of cours you have to ask for every thing. ps. from Fred if your doctor says the need test insurance co. has to pay. It's all in the way the doctor orders it. (((HUGS))), Zina
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    zinaida said:

    Carlene! When i did talk to
    Carlene! When i did talk to a second opinion doctor, head of research department of UW(University of Wisconsin). He told all patients expenses and required medical test and medication can be paid by sponsors of the trial; they even have special insurance for patients in trial; specialy if the trial is done by the National Cancer Institute. Of cours you have to ask for every thing. ps. from Fred if your doctor says the need test insurance co. has to pay. It's all in the way the doctor orders it. (((HUGS))), Zina

    Thank you, Zina. I did ask
    Thank you, Zina. I did ask the NP who is the trial coordinator what would happen if they wanted a CT scan, other tests, etc and my insurance would not approve them. She said I would need to "find a way to pay for them." Otherwise, I will be dropped from the trial. My primary is Medicare and they have specific rules for patients on clinical trials. From the Medicare website:


    Medicare pays for routine costs of items and services in covered research studies. Examples of these items and services include the following:
    • Room and board for a hospital stay that Medicarewould pay for even if you weren’t in a study
    •An operation to implant an item that’s beingtested
    •Treatment of side effects and complications that may occur as a result of the study
    Medicare won’t pay for the following:
    • The new item or service that the study is testing
    (except for certain medical devices) unless
    Medicare would cover the item or service even if
    you weren’t in a study
    • Items and services the study gives for free (many
    times the treatment will be provided free by the
    study sponsor)
    • Items or services given only to collect data and not
    used in your direct health care (such as monthly
    CT scans for a condition that usually requires only
    an annual scan)
  • Lisa13Q
    Lisa13Q Member Posts: 677
    Welcome to MSKCC
    They have the best doctors and from my point of view, the absolutely worst system in the world. If I never had to go back into that building I would be ecstatic. You should see the hospital ER...OMG...we call it the pit...then the doctors are world renown....idk...sorry you have had to go through this...
  • pattysoo
    pattysoo Member Posts: 170
    Your rant
    So disconcerting. Of course you want to know that everyone involved is "on board". Maybe your being so vocal will spur them all to get their act together. I wonder how tight their budget is? You're my hero. Forge on!
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    Lisa13Q said:

    Welcome to MSKCC
    They have the best doctors and from my point of view, the absolutely worst system in the world. If I never had to go back into that building I would be ecstatic. You should see the hospital ER...OMG...we call it the pit...then the doctors are world renown....idk...sorry you have had to go through this...

    No one seems to know what
    No one seems to know what the other team members are doing! And they evidently know this, but have no desire to "fix" it. It's crazy!

    I did not have the CT done in NYC because the scheduling nurse told me it would be better to have it done here, before my consult. I think that if they want a CT scan done "in house", then they need to pay for it, since "they" are the ones who gave me bad information. Obviously, the folks at MSKCC don't agree with me, and don't particularly care who dropped the ball, or how they might avoid a similar misunderstanding in the future.


    Carlene
  • pjdreams
    pjdreams Member Posts: 77
    paying expenses
    Carlene,

    For the research trial that I'm participating in, the research dept pays for any tests done above and beyond what the "normal" treatment protocol would dictate; like extra or more frequent CT scans, etc. Not sure why yours is not doing the same. Mine is a Phase 3 trial, would that make a difference ?

    best wishes and regards,

    pj
  • Tethys41
    Tethys41 Member Posts: 1,376 Member
    Take the path of least resistance
    Carlene,
    I know a couple of weeks ago you were having second thoughts. A few of us said, maybe this is not meant to be.
    I have often gotten feelings of doubt about things and I have found that if I push through them and continue on my path, other obstacles pop up along the way. If I push through those, the signs get even more intense, until I reach a point where I either have no choice but to abandon my project or I regret my choice to continue.
    Maybe these obstacles are reminders that you were having second thoughts not long ago. Just a thought...

    Kate
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    pjdreams said:

    paying expenses
    Carlene,

    For the research trial that I'm participating in, the research dept pays for any tests done above and beyond what the "normal" treatment protocol would dictate; like extra or more frequent CT scans, etc. Not sure why yours is not doing the same. Mine is a Phase 3 trial, would that make a difference ?

    best wishes and regards,

    pj

    I'm not sure why, either,
    I'm not sure why, either, PJ. I can only guess that there is no shortage of women with ovarian cancer willing to participate, even though it's not gratis.

    Which trial are you in?

    Carlene
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    Tethys41 said:

    Take the path of least resistance
    Carlene,
    I know a couple of weeks ago you were having second thoughts. A few of us said, maybe this is not meant to be.
    I have often gotten feelings of doubt about things and I have found that if I push through them and continue on my path, other obstacles pop up along the way. If I push through those, the signs get even more intense, until I reach a point where I either have no choice but to abandon my project or I regret my choice to continue.
    Maybe these obstacles are reminders that you were having second thoughts not long ago. Just a thought...

    Kate

    Thank you, Kate. I'm really
    Thank you, Kate. I'm really just ranting about their incredibly inept system, not having second thoughts. My doctor strongly encouraged me to do the trial, and that made a huge difference. Besides, I bought two pair of long underwear today - on clearance - so maybe that's a sign that I'm supposed to go thru with it.

    Carlene
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    Well, ladies....the fun at
    Well, ladies....the fun at MSKCC just never ends, does it?

    To recap....on Friday the nurse (Charlene) was supposed to call me back and tell me if I needed to overnight the CD with my last CT films on it, which I left with the good doctors at MSKCC on the 19th, and which they mailed back to me just last week. She never called. So this AM, I tried to call her. Couldn't get her on the phone, but the person I talked to said they had digitalized them when they had the CD in their hot little hands, so no need to bring it back.

    Then, while I was out buying stuff for dinner, Charlene frantically calls my house. Fortunately, my husband was home to take the call. They don't have a copy of the films. The disk, she said, "is golden", and I need to bring it to NYC ASAP. They will TRY to get a radiologist to read it tomorrow. If that proves doable, I can have my first shot on Wed, otherwise, it's a no-go for this week. And they've cancelled my labs for tomorrow. They don't need them, she said. They can use the labs they drew on the 19th.

    And to make everything absolutely perfect, I received a questionaire in the mail today. They want me to evaluate my "recent outpatient experience at Memorial Sloan-Kettering". I'm off to sharpen my pencil.

    Carlene
  • pjdreams
    pjdreams Member Posts: 77

    I'm not sure why, either,
    I'm not sure why, either, PJ. I can only guess that there is no shortage of women with ovarian cancer willing to participate, even though it's not gratis.

    Which trial are you in?

    Carlene

    Morab
    I'm in a trial for an antibody named Morab-003, Carlene. It's supposed to help my immune system determine which cells are the bad cells and which ones are good cells, instead of just killing the fast growing cells (good and bad). I' m halfway thru my 2nd round of carbo/taxol since my first recurrence.

    Kindest regards , pj
  • antcat
    antcat Member Posts: 270

    Well, ladies....the fun at
    Well, ladies....the fun at MSKCC just never ends, does it?

    To recap....on Friday the nurse (Charlene) was supposed to call me back and tell me if I needed to overnight the CD with my last CT films on it, which I left with the good doctors at MSKCC on the 19th, and which they mailed back to me just last week. She never called. So this AM, I tried to call her. Couldn't get her on the phone, but the person I talked to said they had digitalized them when they had the CD in their hot little hands, so no need to bring it back.

    Then, while I was out buying stuff for dinner, Charlene frantically calls my house. Fortunately, my husband was home to take the call. They don't have a copy of the films. The disk, she said, "is golden", and I need to bring it to NYC ASAP. They will TRY to get a radiologist to read it tomorrow. If that proves doable, I can have my first shot on Wed, otherwise, it's a no-go for this week. And they've cancelled my labs for tomorrow. They don't need them, she said. They can use the labs they drew on the 19th.

    And to make everything absolutely perfect, I received a questionaire in the mail today. They want me to evaluate my "recent outpatient experience at Memorial Sloan-Kettering". I'm off to sharpen my pencil.

    Carlene

    Carlne experience with MSKCC
    Hi Carlene, I can understand what you're going thru. I, myself, have had a few problems. My doctor is great, but it is very frustrating the whole procedure there and with the staff that work there. I have a very short treatment and I spend at least 5 hours there. You have to wait for this and wait for that. Even to make an appt. for the next time, I couldn't make it until the end (5 hours later) and then you can only make 1 appt. at a time. The technician who took my blood last time gave me such a bruise on my hand you wouldn't believe. It took 10 days to go away. Then, to top it all off, the oncology nurse who gave me my treatment, (I have a port), felt like she was actually pulling the port out of my skin, she was very rough. I asked her to give me my blood thinner injection because I had wanted to keep on schedule and wouldn't get home for about 1 - 1 1/2 hours. Big mistake I made, she bruised me so badly that it's going on 12 days and I still have a large hematoma. I hope it's still there next week when I go in so the dr. can see it.