help!!!! falling through the crack and its my life

HI!

I'm having an issue here. I have been going to a hospital in Boston, MA for my colon cancer (recurrent Stage IV), my local oncologist has says there is nothing they can do for me down here and sent me to the "specialists". Now I have been going since May and I feel like I'm falling through the cracks. I barely see my oncologist, I have to be admitted to the hsopital for my chemo (i'm allergic and need to be "desensitized"), I see interns, residents and attendings that are not my oncologist. I see the nurses everytime I am admitted and they know me better. Recently my port-a-cath started to bother me (more than normally), it was sore in my arm and to touch and red, when I went for my treatment 4 weeks ago and complained, the nurses did not want to attempt to treat me because it looked infected, doctor from radiology looked at it, x-rayed it and said it was fine, treat her. In the past two weeks, after many more tests and symptoms, it really became infected and started to "leak" pus. Did not get my treatment last week, in fact, was admitted and put on IV antibiotics up until this past Saturday, they also had to remove my port and I now have a gaping hole in my chest, because unable to close and needs to heal.

Now they want me to go in next week for a PICC line (I know nothing about this), my oncologist does not want to see me and they want to send me to wound care (not what they said on my discharge). I'm so frustrated and aggravated, I don't know what to do. I don't feel like I'm getting the care I deserve to survive and being ignored. My husband wants me to call Cancer Centers of America and see what they can do. Has anyone dealt with them? What would you do if you were in my shoes, please help!!!!

Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
    2 choices ..........
    I would leave tracks 6" deep getting out of there if at all possible, and head to the closest large cancer center to you or if insurance allows, the best place I could afford to get to. My opinion is that you need to plead your case to a large known cancer center and see what they have for you...it can't hurt...the other choice is to stay and maybe take over your treatment protocol and tell them what you expect, or let them know that without certain protocol that they could expect to speak with a lawyer soon. Seems that you may be getting the run around here, in which case sometimes when time is at a premium, it may be better not to waste it on them and get somewhere where at least you feel comfortable with the care your getting.........buzz
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    Sherry
    I am so sorry to hear this. Do they have someone at the hospital who can act as an advocate? Perhaps a social worker, or a specially assigned nurse (I know the hospital I go to has a nurse assigned to this task).

    Not sure how you would ask, but it sounds like you really need someone to help you with the issues you are facing.
  • yoga
    yoga Member Posts: 87
    time to be the squeaky wheel
    Hi . . . I am so sorry to hear that you are having such terrible issues with your treatment and care. I'm not sure if what I have to say will help as I am in Canada and don't know if things work the way they do in the States.

    I too am Stage IV and was diagnosed with CC and inoperable liver mets (about 20) in June of 2010 - I have been in treatment (every 2 weeks) since August of 2010. I am allergic to my chemo; my mouth and lips started swelling during my first treatment. They gave me a super dose of benedryl and that looked after things. I now receive benedryl before each treatment . . . . I sleep for most of my treatment and then snooze when I get home. No admittance necessary. Possibly this might be somethinig to suggest?

    As for not seeing your doctor, I went through the same thing. My first oncologist was horrible and I only saw her three times; she even sent in an intern for my first appointment!! I talked to my oncology social worker and she helped me navigate the system to find another oncologist. My new oncologist knows exactly how I feel and his nurse usually ensures that I see him and not his intern. The one time I did see an intern I said thank-you and that I would wait and also see my oncologist as well. They had no choise but to make the arrangements as my husband and I sat in one of the treatment rooms until I saw him. I learned that trick from another patient who told me she demanded to see her oncologist when she had an appointment as he was her doctor and she had an appointment with him, not somebody else. Maybe standing your ground and demanding attention is what you need to do.

    Another thing I do is make a list of everythihing I want to know or ask in a notebook that I always carry with me and make sure I get, understand and write down answers before I leave my appointment. My appointments might sometimes last an hour, but I figure it is my appointment, my life and I will take all of the time that I need. Last time I was in the nurse actually said they like patients like me - ones who make them think and keep them on their toes.

    So . . . . my bottom line . . . . stay strong and demand attention. Your life is important and you need to take charge.
    yoga jo
  • John23
    John23 Member Posts: 2,122 Member
    sherrylee -

    You mentioned being in Massachusetts... I would strongly
    suggest a visit to the UMass Memorial Cancer Center at
    Worcester, Ma.

    You should not be treated in the manner that you've described,
    and I seriously doubt you will find anything similar at the
    UMass Center!

    Check it out ASAP, and let us know what you think!

    Regarding the PICC? I have one and it's no problem. They put
    it in as they would an IV (lil' more effort), and it can last for
    years. It does -not- require surgery to install or remove, and
    unlike a port, if you have an infection, it doesn't have to be
    removed. We (wife an I) service this at home (dressing change),
    once a week. I was offered the choice between the two, but
    if they hadn't asked, I would have demanded the PICC anyway.

    And regarding the "CCofA".... From everything I've read,
    I'd steer clear of the money orientated corporation.

    Check out UMass instead....!

    Best wishes for you,

    John
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    Hi Sherry, I'm so sorry that

    Hi Sherry, I'm so sorry that you've been having such horrible treatment, but like the others have mentioned, I would think that a call to major hospital ASAP would be in your best interests. My Rick goes to Dana Farber, and his doctor has been really great. We switched from Mass General to D.F., and it only took one call to the oncology department at D.F. to set up the appointment, which he got within a week. The process was really simple, no hassle at all. Best wishes, Cynthia
  • sherrylee
    sherrylee Member Posts: 19

    Hi Sherry, I'm so sorry that

    Hi Sherry, I'm so sorry that you've been having such horrible treatment, but like the others have mentioned, I would think that a call to major hospital ASAP would be in your best interests. My Rick goes to Dana Farber, and his doctor has been really great. We switched from Mass General to D.F., and it only took one call to the oncology department at D.F. to set up the appointment, which he got within a week. The process was really simple, no hassle at all. Best wishes, Cynthia

    Thanks for the info. My
    Thanks for the info. My husband thought that Dana Farber and MGH were part of the same hospital group, but that might be something I would like to look into rather than going to Philadelphia. Thanks for the information.

    Sherrylee
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    SherryLee
    I'd be making fast tracks to a DIFFERENT ONCOLOGIST!!! Find one that cares, I see mine every three weeks rain or shine, he's got all the time in the world for me (although I only take up about 5 minutes of his time lately since I don't have complaints or unknown fears for the time being)you need to find one that C A R E S!!!
    Hoping you find a caring oncologist,
    Winter Marie
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    sherrylee said:

    Thanks for the info. My
    Thanks for the info. My husband thought that Dana Farber and MGH were part of the same hospital group, but that might be something I would like to look into rather than going to Philadelphia. Thanks for the information.

    Sherrylee

    Hi, I sent you a PM in

    Hi, I sent you a PM in regard to our D.F. oncologist.
  • marqimark
    marqimark Member Posts: 242 Member
    Terrible
    Your ONC is in the this line of work, WHY??
    Your story makes me a tad upset!!

    I feel very fortunant that my experience at the Clinic here in Everett, WA was so opposite to yours.

    Mark
  • northernlites
    northernlites Member Posts: 96
    Hi Sherry, Have you
    Hi Sherry, Have you considered Dartmouth Medical Center in lebanon nh? The Norris cancer center there is great. I have found that they are very professional and very responsive. I have so far had good luck with the oncologists there. I know it may be a drive for you but worth considering.. and your insurance may cover beause it is still in the new england network. Please contact me if you would like more information.

    tessa
  • relaxoutdoors08
    relaxoutdoors08 Member Posts: 521 Member
    John23 said:

    sherrylee -

    You mentioned being in Massachusetts... I would strongly
    suggest a visit to the UMass Memorial Cancer Center at
    Worcester, Ma.

    You should not be treated in the manner that you've described,
    and I seriously doubt you will find anything similar at the
    UMass Center!

    Check it out ASAP, and let us know what you think!

    Regarding the PICC? I have one and it's no problem. They put
    it in as they would an IV (lil' more effort), and it can last for
    years. It does -not- require surgery to install or remove, and
    unlike a port, if you have an infection, it doesn't have to be
    removed. We (wife an I) service this at home (dressing change),
    once a week. I was offered the choice between the two, but
    if they hadn't asked, I would have demanded the PICC anyway.

    And regarding the "CCofA".... From everything I've read,
    I'd steer clear of the money orientated corporation.

    Check out UMass instead....!

    Best wishes for you,

    John

    CCofA
    Sherry and John,
    I would agree with the statement "steer clear of the money orientated corporation." My friend needed to have $70,000 up front for treatment for prostrate cancer and they told him he did not need surgery but his doctor at the Mayo called him and told him surgery would save his life. He left CCofA and did the surgery at Mayo Clinic. Scans did not show the lymph node that was cancerous that his surgery found at the Mayo.

    NB
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    John23 said:

    sherrylee -

    You mentioned being in Massachusetts... I would strongly
    suggest a visit to the UMass Memorial Cancer Center at
    Worcester, Ma.

    You should not be treated in the manner that you've described,
    and I seriously doubt you will find anything similar at the
    UMass Center!

    Check it out ASAP, and let us know what you think!

    Regarding the PICC? I have one and it's no problem. They put
    it in as they would an IV (lil' more effort), and it can last for
    years. It does -not- require surgery to install or remove, and
    unlike a port, if you have an infection, it doesn't have to be
    removed. We (wife an I) service this at home (dressing change),
    once a week. I was offered the choice between the two, but
    if they hadn't asked, I would have demanded the PICC anyway.

    And regarding the "CCofA".... From everything I've read,
    I'd steer clear of the money orientated corporation.

    Check out UMass instead....!

    Best wishes for you,

    John

    I had a PICC line when I was
    I had a PICC line when I was in hospital to receive nutrition, one weekend my arm swelled up and seemed infected...of course my doctors were not there over the weekend and this was just days before I was to have my colon surgery which I had already been in hospital waiting for one whole month....bad time to get an infection around PICC line, on call doctor came in to see me and wanted to yank it out immediately...I hesitated because was afraid would affect my upcoming surgery...I pushed to get on anti-biotics, I iced the area and thankfully it went down. I personally hated that PICC line tubes sticking out of my arm. Trying to keep it dry when showering was a pain, trying to wrap it with different types of plastic, tapes etc. You cannot get the area wet where the PICC line is. I cannot believe the troubles you've had, that's just terrible. I would take Johns advice and go to U Mass as soon as possible!!