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  • Local Oncologists Won’t Treat My Mom!

    Posted by Halsmum on December 11, 2007 at 7:37 pm

    Hello all…it’s been awhile since I’ve posted…I get so much out of reading. But now I have some questions.

    My mom has Stage IV bladder cancer. She had her bladder removed last year in June, the doc performed a radical cystectomy which could not have worked better! This year in January we learned her cancer has returned in her pelvis. She saw local oncologist who told her to go home, relax, and live out the rest of her life because there wasn’t much he coud do for her. He told her he would sign off on total disability for her so she wouldn’t have to work another day! We weren’t exactly satisfied with that answer, and we looked elsewhere, ending at the Cancer Treatment Center of America. Mom went through 6 rounds of chemo spread out to every 3 weeks, 3 days of chemo. In July the docs decided to do radiation. 7 weeks we had of radiation. Mom tolerated all of that very well except for 1 week in the beginning of radiation…she was admitted to the cancer treatment center hospital due to low WBC’s and low electrolytes. Her radiation ended the week before Labor day. She had September, October, and November off, however did have a CT scan, and a PET scan. Results of those we just got right after Thanksgiving, which showed that the tumor that was being radiated has shrunk by more than 2-3 centimeters! BUT…there were 2 new little tumors growing. The doc decided to give her 2 more rounds of chemo. She had her first round of 2 last weekend.

    This week Wednesday she became sick, as usual after chemo. By Friday she was too dehydrated to stay conscious, so we took her to our local er. This is where the fun begins.

    Mom needed to be admitted, but the attending Oncologist happened to be the doctor we saw here in town who told mom to go home and die! He would not admit my mom to the hospital, nor would anyone else in his practice. Where we live, this doctor along with the others all work in one office, together, and treat patients at both hospitals in our area. Mom had to be admitted, so the ER doc had to admit her under “hospital service”…a general doctor. She got to her room, and a couple hours later this “hospital service” doctor came to see her, and was totally confused as to why my mom wasn’t admitted by an Oncologist, since he would have to consult with one of them anyway to prescribe any care my mom needed! He also asked us detailed questions as to why we didn’t like the doctor on call…(maybe because he had no hope and told my mom to go home and die???!!!!) The next day apparently an Oncologist did come in to see my mom, however she doesn’t remember as she was still very out of it…that was the only visit. The rest of her care was through the “hospital service”. Monday she had yet another new doctor, as the “hospital service” doctor she had over the weekend was done with his shift for a week. This guy came in and had not reviewed my mom’s chart, had no idea what she was in for, and again, AGAIN asked questions as to why she wasn’t under the care of a local Oncologist after being admitted to the hospital. At this point mom was feeling a lot better, her counts weren’t too terrible, so I said “She wants to go home”. The new doc left for about an hour, then came back and released her! WELL…her instructions to go home included an appointment with a local Oncologist today. No time was listed on the sheet, so we were told to call their office this morning to get the appointment time. Mom called, and was given a time of 11:40. 15 minutes later, a lady from that office called back and informed mom that she would not be seeing a doctor at all, she only needed to come in to have her bloodwork done. This lady also called because she “needed to inform my mom that the doctors in the Oncology office will not treat her because they are not comfortable with her choice of treatment for her cancer”. If she would get sick again like she did last weekend, she was not guaranteed any contact with any doctor in the Oncology office.

    Can doctors do this?!! The Cancer Treatment Center is a long ways away, especially if one is in and out of consciousness…now my concern is that when my mom does get to the point of needing local care, once her options are whittled down, nobody will help her. What can I do? I am so scared, let alone worried about my mom now more than ever. The last thing she needs is some doctors office telling her that when she needs help the most, she won’t get it from them!

    Thanks for listening/reading…any advice is much appreciated…

    Halsmum replied 16 years, 11 months ago 6 Members · 10 Replies
  • 10 Replies
  • Halsmum

    Member
    December 22, 2007 at 4:14 am

    Thank you all for your advice and support. We are to see the docs at CTCA after Christmas, and you can bet I’ll be discussing all of this with them to see what can be done.

    We have been lucky so far to find doctors at CTCA and with mom’s treatment, and mom is very determined to keep living, therefore I will find a way to make things happen in the easiest possible way for my mother. I’ll keep you updated as I can, and for now, I wish you all a VERY MERRY HOLIDAY SEASON!!!

    Again, thank you so much to all…

  • wsilberstein

    Member
    December 16, 2007 at 3:10 pm

    [quote author=Halsmum link=topic=1564.msg11571#msg11571 date=1197405452]
    the doctors in the Oncology office will not treat her because they are not comfortable with her choice of treatment for her cancer”. If she would get sick again like she did last weekend, she was not guaranteed any contact with any doctor in the Oncology office.

    Can doctors do this?!! [/quote]
    Forgive my late entry to this discussion. I haven’t really been following the metastatic discussions lately. First, let me say that I agree that your mother’s treatment by the local docs is unconscionable…. but, as a physician (pediatrician), I may have some clue what’s going on here. Your local doc may be concerned about being sucked into liability for a treatment he doesn’t know about.
    I think her doctor at the Cancer Center needs to contact the locals and work out an arrangement for her care. If a local doc, not necessarily an oncologist, knows he has a readily available consultant to be responsible for her care, he may be willing to do the local leg work in providing the care.


    -Warren
    TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
    Urethral stricture, urethroplasty 10/2009
    CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
    T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
    Incontinent. AUS implant 2/2014. AUS explant 5/2014
    Pediatrician
  • Guest
    December 16, 2007 at 4:19 am

    Pat, When Gene was in overnite for his heart problem 2 weeks ago some of the nurses would run to his room to see his stoma,,and his bag, never seen one before, here in Elyria Ohio….its more of a heart place…but really!!!!Ginger

  • Guest
    December 16, 2007 at 3:50 am

    Cynthia…i’ll go ya one better…when i had my blockage not one hospital in Cincinnati would admit me because they didn’t know what an Indiana Pouch was!!!! And my surgeon from Cleveland was in Hawaii!! That was an interesting night. I feel like an alien living in Cincinnati!! And the blockage would not have happened at all if i hadn’t entrusted my local uro to take out my one remaining J-tube..in pulling it out he trapped part of the ileum under my ureter. Mark Twain was right about Cinti…if the end of the world came he’d go to Cincinnati because he’d still have 20 yrs left. Pat

  • cynthia

    Administrator
    December 16, 2007 at 2:34 am

    I live in W. MA. where there is a small Ontological practice and four overworked general Urologists, not what you would call state of the art. I chose to take part in a clinical trial in Boston and later had my RC in Chicago because of the pelvic radiation I had in the clinical trial. I had twenty rounds of chemo. and had to travel two and a half hours to have my port flushed because I did not have a local Oncologist. I was stone walled even from even that small courtesy. What it boils down to is if they don’t do the work they don’t want the maintenance, a hard but true truth.
    This is how I handle it and it might work for you. I talked to my Urologist in Chicago and have the 24/7 number that reaches his resident on duty. If I have a problem I call them and let them know I am going to the emergency room and they will be getting a call. When I get to the ER doctor I give him the number he calls them they consult and we are on track with the proper treatment. The ER doctors always seem happy to consult with them it solves the problem for them in a simple manor. I would talk to your mothers Oncologist and let him know what is going on locally and see what you can work out with him.
    Now the interesting part of your question was about the ethics of the local Oncologist denying your mother emergency services based on the fact he did not offer her treatment. Interesting question I would ask someone who had a background in medical ethics. It could be more of a case for the state medical board rather than a lawyer.
    Keep us updated and take care of yourself.

    Chin up and straight forward


    Cynthia Kinsella
    T2 g3 CIS 8/04
    Clinical Trial
    Chemotherapy & Radiation 10/04-12/04
    Chemotherapy 3/05-5/05
    BCG 9/05-1-06
    RC w/umbilical Indiana pouch 5/06
    Left Nephrectomy 1/09
    President American Bladder Cancer Society
  • Halsmum

    Member
    December 13, 2007 at 7:38 am

    Thank you to all for your responses…this has just been the most frustrating week! As my mom’s “go-to” daughter, I am the “rock”, so I have to handle all this, so writing it all out sure does help!

    Pat-my mom’s surgery began in Madison, Wisconsin, and this past January ended there when we saw an Oncologist who only wanted to push the trial drugs that he was working on for Bladder Cancer. My mom was not comfortable with that, so we did return home to Appleton (just south of Green Bay), and met with a local Oncologist. He would be the one who, in January, told my mom to go home and die basically. THEN, we sought a 3rd opinion at CTCA, and have gone there since February for treatment. It really is only a 2 1/2 hour drive, (2 hours and 20 minutes if I speed) but last week friday there was no way my mom was in any shape to travel. If this would happen again,however, she would not allow me to take her back to our local hospital, that’s for sure! The only other time that mom was pretty bad was when she began radiation…we had been driving back and forth every day for the 10 minute treatment. That wore her out, and she spent 7 days out of the 7 weeks as an inpatient at CTCA. After that she bounced back like there was no tomorrow! My mom is 50 going on 20. When she is not feeling sick, she is still working 8 hours a day, and still taking care of her 2 kids who are still at home, they are 16 and 14, and her husband, (whom I will not comment on right now because there is way too much I could say about him, but just need to sleep sometime tonight!). You can’t just tell my mom to go home and die. It just ain’t gonna happen.

    Currently mom was to undergo 2 rounds of chemo to keep the 2 new tumors just discovered from growing. The IMRT radiation she had over the summer shrunk the largest tumor by over 3 cm’s already, probably more by now, which is awesome! They did find the 2 new tumors growing but still no spread to any organs or bones…all in lymph nodes centralized between her kidneys and pelvis.

    As far as the doctors and their treatment, or non-treatment here…I did contact a lawyers office, however have not heard back from them yet. I am going to check out the patient advocacy website also as soon as I have a chance…just got out of work and I have to be back at 10am so I have to sleep fast, but I just wanted to get back to you and thank you so much for your responses so far…

  • maria

    Member
    December 12, 2007 at 12:16 am

    Halsmum, I too am shocked to read your mom’s appalling experiences from the so called ‘caring profession’ How dare they make choices for your mom about her life! Then just send her home with no support and follow up care or contact and then threaten her, because they have done, with no guarantee of ‘any contact’

    It must have been a terrible and degrading experience to be subjected to the undignified and uncaring attitude during your time in the ER and the hospital ward.

    [quote author=Halsmum link=topic=1564.msg11571#msg11571 date=1197405452]
    Can doctors do this?!!
    [/quote]
    The people who treat your mom in this way do not even deserve to be called doctors!!!

    I can only offer empathy. I can’t offer you any advice, Pat is great and she will point you in the right direction.

    You really do need to contact the Patient Advocate for further advice. I am sure they would be interested to hear of the undignified and inhumane behaviors of these so called professionals!

    I wish your mom well and think you are great for supporting her, I hope you can get the very best of care for her soon. Good luck and well wishes. xx

  • mssmr

    Member
    December 11, 2007 at 9:35 pm

    I am shocked, Halsmum, and sending you empathy and support in your quest for care for your Mom. I don’t know how specifically to help, but I have seen postings by others who seem to be able to be more concretely helpful that I. I am wondering if the hospital has some kind of omsbudsperson or ethics committee…..

    I wish you fortitude and victory — mssmr

  • Guest
    December 11, 2007 at 8:38 pm

    Ok Halsmum i went through your previous posts and it looks like your mother has been given the best of chemo drugs……..I would maybe contact Dr. Gee’s office and let them know whats going on … The IMRT radiation she had should be right on the target if used properly by the radiologist and not damage other tissue or organs.
    But she definately needs to be seen by an oncologist to check her blood , her dehydration issues.
    I wish i could be more help………Pat

  • Guest
    December 11, 2007 at 8:25 pm

    What a nightmare…..can you tell me where you are? The problem with Cancer Treatment Centers of Amer. is that there are only like 3 facilities and if you don’t live near them or stay there you’re really up a creek without the proverbial paddle. Have you contacted them at all? There is an advocacy group you might try contacting…they have online people to talk with….
    http://www.patientadvocate.org/
    What is wrong with these people? How do they even qualify to be part of the human race? The least they can do is offer palliative care or a clinical trial not send someone home to die if there is an ounce of fight in them.
    What about the surgeon? Is he available or has he disappeared into the woodwork?
    I’m so sorry your mother and your family has to go through this. Please give me some more information and i’ll try to see if there isn’t someone qualified near you to help…………Pat

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