No real answer yet

saundra
saundra Member Posts: 1,370 Member
edited March 2014 in Ovarian Cancer #1
After four days of leaving messages on an answering system and getting no reply I got hot today and finally got to talk to my gyn/onc nurse. She copped not plea as to why she was not returning my phone calls but did say their only records was a chest x=ray and not a CT scan. She obviously was looking at wrong records. Aghhhh........ Anyway, finally they got a copy of the CT and the word is that I have been referred back to the oncologist in my home town as the film is inconclusive as to if I have a tumor on the colon or some more diverticulitis. Still waiting for a call from the local clinic. Still hurting. Has the socialized medicine already kicked in and no one told me? LOL Saundra

Comments

  • lnyeholt
    lnyeholt Member Posts: 59
    #2
    Awful!
    I don't know what to say except you're making me feel very lucky that my oncologist and his staff are very responsive and organized.

    I hope whatever is causing your pain is the most easily treatable, cured quickly, and you are back in good health soon!

    Lyn
  • momspot
    momspot Member Posts: 21
    #3
    Why do they feel that they
    Why do they feel that they can give us the run around? If it was them or their own family...you can bet they would be more responsive.

    I second the motion that whatever is causing you pain is easily treatable and taken care of quickly.

    momspot
  • LPack
    LPack Member Posts: 645
    #4
    Me too
    Saundra,

    Mine too was inconclusive, but with CA 125 up to 193 she started me on chemo. I was denied the Petscan scheduled for this Friday by my PCP.

    And still waiting to see if I can get my Neulasta shot in Wheeling, WV instead of riding back to West Penn, PA the next day after chemo. It was approved for me to pick up at pharmacy to have my gyn give it to me for copay of $1800. We cannot afford that every two weeks.

    Calgon take me away.............

    Love,
    Libby
  • Kgirl
    Kgirl Member Posts: 45
    #5
    Libby and neulasta - please read!
    Libby,

    There was a study published this spring that stated Neulasta given the day of chemo is just as effective as when given the day after chemo. One study involved gynecological cancers. You can find this if you google "neulasta the day of chemo". This would save you a trip. I would definitely print this out and discuss with your oncologist. I hope this helps!

    Kathy
  • jean b
    jean b Member Posts: 77
    #6
    Hi Saundra: Please refresh
    Hi Saundra: Please refresh my memory as to what your pain was?
    Jean
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #7
    Aghhhhhhh :-)
    Hi Saundra,

    I am Aghhhhing with you...somedays it is frustrating and boy I sure hope this isn't what becomes of the medical world. I just went round and round with my local clinic, shingles started coming back, my Dr on vacation and fill in doc saying he wouldn't fill prescription ~ that I needed to see my oncologist. I tried to explain oncologist docs are for cancer and they say to see my local doctor for other things... so frustrating. Finally got ahold of a nurse at my gyn/oncs office and they called in a prescription. So you have company in the Aghhh dept. Not as frustrating as yours though. I hope the visit with your home town onc goes way better and they have answers for you.

    Saying an extra prayer for pain relief and answers. Prayers ♥ Hugs Bonnie
  • jean b
    jean b Member Posts: 77
    #8
    BonnieR said:

    Aghhhhhhh :-)
    Hi Saundra,

    I am Aghhhhing with you...somedays it is frustrating and boy I sure hope this isn't what becomes of the medical world. I just went round and round with my local clinic, shingles started coming back, my Dr on vacation and fill in doc saying he wouldn't fill prescription ~ that I needed to see my oncologist. I tried to explain oncologist docs are for cancer and they say to see my local doctor for other things... so frustrating. Finally got ahold of a nurse at my gyn/oncs office and they called in a prescription. So you have company in the Aghhh dept. Not as frustrating as yours though. I hope the visit with your home town onc goes way better and they have answers for you.

    Saying an extra prayer for pain relief and answers. Prayers ♥ Hugs Bonnie

    Hi Bonnie:
    After listening to Obama's speech last night I wonder what will happen to cancer patients. We can't get the help or care we need now and can't imagine having to hear someone say you'll have to wait longer, or we can't do that test. Just seems like things will get worse. Hope you have a better day.
    Jean
  • saundra
    saundra Member Posts: 1,370 Member
    #9
    jean b said:

    Hi Saundra: Please refresh
    Hi Saundra: Please refresh my memory as to what your pain was?
    Jean

    Groin pain
    Dear JeanB,

    My pain now is in my left groin where the leg joins the trunk. It is lower than the left abdominal pain I had in May with the diverticulitis. The mass was felt on the physical last week for the first time. (Been having one monthly). The pain is better yesterday and today. It could be either but with the high CA-125 I want to know, not to mention the consequences of untreated abcesses. Saundra
  • LPack
    LPack Member Posts: 645
    #10
    case worker
    I actually called my Health Plan and requested a case worker! She called back the next day and now I have someone who knows what is exactly going on with me and can plead my case each time one of my doctors has a test, blood work, or whatever I need.

    And the best is I know her!! Praise God. I just got a phone call this morning (answer maching) telling me my petscan tomorrow IS approved after receiving denial letter two days ago. I will check on the neulasta shot being done the same day, too. Haven't talked to case worker yet today to ask about the shot as I am home now and she is at lunch.

    Also, someone else told me to check into social security disability.

    The things we have to do ourselves.......................guess it keeps us active! ☺

    In His Grip,
    Libby
  • MichaelaMarie
    MichaelaMarie Member Posts: 163
    #11
    LPack said:

    case worker
    I actually called my Health Plan and requested a case worker! She called back the next day and now I have someone who knows what is exactly going on with me and can plead my case each time one of my doctors has a test, blood work, or whatever I need.

    And the best is I know her!! Praise God. I just got a phone call this morning (answer maching) telling me my petscan tomorrow IS approved after receiving denial letter two days ago. I will check on the neulasta shot being done the same day, too. Haven't talked to case worker yet today to ask about the shot as I am home now and she is at lunch.

    Also, someone else told me to check into social security disability.

    The things we have to do ourselves.......................guess it keeps us active! ☺

    In His Grip,
    Libby

    Diverticulitis and abscesses
    Hello Saundra,

    I'm so sorry to hear of all of your difficulties. In that I too have diverticulitis and "it" abscessed and I had surgery to drain it, only to have to go back in a month later to have that section of my colon removed, I am very anxious to hear what they find out.

    My surgeon said he felt that my perforated diverticula was probably the cancer. When the perforation showed up on a cat scan, they called me within a couple of hours of my appt., and yes, I ended up in the hospital that night. Under the cat scan, they went in and put a drain tube. That area never healed and drained for a month with 'obvious' perforation of my colon. It's a wonder that the whole ordeal didn't kill me!

    What I could kick myself for is that for a long time I would occasionally (a couple of times a day) have excruiating pain in my abdominal area that would sometimes take me to the floor. It was usually connected with a bowel movement or gas, and so that is what I thought it was. Some days I wouldn't have it at all. Foolishly I didn't ever mention that to my doctor. Now I certainly know what it was!!!!! I wondered about it though thinking that I had never had such severe gas pains before, but assumed that with tumors growing on the outside of my colon, that the pressure would be more. Does your pain feel anything like severe gas pain?

    Along with everyone else, I'm hoping and praying that you get "good news", and that it is not serious. You're much more on the ball than I am even though you had to fight your way through the guards (nurses). I went on the wrong day for my doctor's appt. this week, and my sister asked if I could talk to the doctor and see if they could work me in. I had to really laugh at that one. I explained to her that I'm not sure what it would take to get past the main nurse to ever get to talk to the doctor on the phone!!!!

    Sorry you have to wait until next week too!!!

    Love and hugs,
    MM
  • saundra
    saundra Member Posts: 1,370 Member
    #12
    MichaelaMarie said:

    Diverticulitis and abscesses
    Hello Saundra,

    I'm so sorry to hear of all of your difficulties. In that I too have diverticulitis and "it" abscessed and I had surgery to drain it, only to have to go back in a month later to have that section of my colon removed, I am very anxious to hear what they find out.

    My surgeon said he felt that my perforated diverticula was probably the cancer. When the perforation showed up on a cat scan, they called me within a couple of hours of my appt., and yes, I ended up in the hospital that night. Under the cat scan, they went in and put a drain tube. That area never healed and drained for a month with 'obvious' perforation of my colon. It's a wonder that the whole ordeal didn't kill me!

    What I could kick myself for is that for a long time I would occasionally (a couple of times a day) have excruiating pain in my abdominal area that would sometimes take me to the floor. It was usually connected with a bowel movement or gas, and so that is what I thought it was. Some days I wouldn't have it at all. Foolishly I didn't ever mention that to my doctor. Now I certainly know what it was!!!!! I wondered about it though thinking that I had never had such severe gas pains before, but assumed that with tumors growing on the outside of my colon, that the pressure would be more. Does your pain feel anything like severe gas pain?

    Along with everyone else, I'm hoping and praying that you get "good news", and that it is not serious. You're much more on the ball than I am even though you had to fight your way through the guards (nurses). I went on the wrong day for my doctor's appt. this week, and my sister asked if I could talk to the doctor and see if they could work me in. I had to really laugh at that one. I explained to her that I'm not sure what it would take to get past the main nurse to ever get to talk to the doctor on the phone!!!!

    Sorry you have to wait until next week too!!!

    Love and hugs,
    MM

    For MichaelaMarie
    Yes, I have had that pain you describe, usually on the way to the bathroom with gas attached.
    My husband had the drain proceedure you had and healed just fine. My attack was many small spots, none of which were large enough for a drain, in May. I just was hospitalized and put on strong antibiotic IV until it cleared. Sure hope it does not perforate while I wait another week. Saundra
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #13
    LPack said:

    case worker
    I actually called my Health Plan and requested a case worker! She called back the next day and now I have someone who knows what is exactly going on with me and can plead my case each time one of my doctors has a test, blood work, or whatever I need.

    And the best is I know her!! Praise God. I just got a phone call this morning (answer maching) telling me my petscan tomorrow IS approved after receiving denial letter two days ago. I will check on the neulasta shot being done the same day, too. Haven't talked to case worker yet today to ask about the shot as I am home now and she is at lunch.

    Also, someone else told me to check into social security disability.

    The things we have to do ourselves.......................guess it keeps us active! ☺

    In His Grip,
    Libby

    caseworker
    Medicare is my primary and I dont' think they have caseworker, but when I had private insurance I did. What a difference and I tell you as a person with medicare as primary I already know the hurddles you need to jump to get some of the things one needs with cancer so am leary about the health care reform but realize those without any insurance will benefit. :-) Prayers ♥ Hugs Bonnie
  • saundra
    saundra Member Posts: 1,370 Member
    #14
    BonnieR said:

    caseworker
    Medicare is my primary and I dont' think they have caseworker, but when I had private insurance I did. What a difference and I tell you as a person with medicare as primary I already know the hurddles you need to jump to get some of the things one needs with cancer so am leary about the health care reform but realize those without any insurance will benefit. :-) Prayers ♥ Hugs Bonnie

    Nope
    Medicare caseworker? I don't think so.....Saundra
  • MichaelaMarie
    MichaelaMarie Member Posts: 163
    #15
    LPack said:

    case worker
    I actually called my Health Plan and requested a case worker! She called back the next day and now I have someone who knows what is exactly going on with me and can plead my case each time one of my doctors has a test, blood work, or whatever I need.

    And the best is I know her!! Praise God. I just got a phone call this morning (answer maching) telling me my petscan tomorrow IS approved after receiving denial letter two days ago. I will check on the neulasta shot being done the same day, too. Haven't talked to case worker yet today to ask about the shot as I am home now and she is at lunch.

    Also, someone else told me to check into social security disability.

    The things we have to do ourselves.......................guess it keeps us active! ☺

    In His Grip,
    Libby

    Diverticulitis and abscesses
    Hello Saundra,

    I was told yesterday that I will be starting a combination of Cisplatin and Gemzar. My CA-125 marker is obviously no longer working as it was dropping and my cancer was growing and spreading. Do you have any idea of how they will measure my progress? MM

Discussion Boards