giving up

guineamom
guineamom Member Posts: 62
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I'm giving up with trying to get treatment in US. I was diagnosed with DCIS early Apr, have been given the run around since then, not even able to get a surgery to get mastectomy. Totally disappointed with US healthcare system.

I started by going with a BS near my house. Because of my gene mutation, she strongly recommended BMX. After thinking things through, I agreed to it. The hospital my BS has previlege to does not offer the reconstruction I want so I had to change BS. I have been trying to get a surgery date from the new BS for month and still no date. Trying to get the scheduler is a nightmare. She is never at her desk, left her messages and she never returns call. I managed to get her once and when I asked if she has a date for me, it's a "no" and she made it sound like I am nagging at her. Two weeks ago, I brought up the issue to the hospital's breast care navigator and she said she would help me track down a date. 2 weeks came and passed, nothing. 2 days ago, I sent the breast care navigator an email, she said she would follow up with the scheduler and either she or the scheduler would call me back the next day. As expected, nothing.

Gave up on this hospital, tried calling John Hopkins though I'm quite a distance from them. Read on thier website that they do see patients in a "timely manner", and after hearing good things from a few people. I called their number to try to get an appointment, waited for more than 15 mins, couldn't even get to speak with a live person. Left a message for them to have them call back, nothing.

Really people? Is it me or?? Do I have to lop the darn thing off myself for someone to work on me? Lucikly mine is just DCIS, so having waited 2 months wouldn't have killed me (I hope).

Anyway, enough complaining. I'm going to sit back, cool down and think what I want to do next.

· Share on FacebookShare on Twitter

Comments

  • proudtospin
    proudtospin Member Posts: 5,972
    edited June 2012

    goodness, I would be angry also

    what other centers are near you?  I know in the NJ/NY area there are a huge number of hospitals actually advertising on bill boards for patients, guess we are big money to them

    that said, start asking a free folks around about dif docs, if you were in NJ/NY then I would give you bundles of names

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2012

    Have you checked on Georgetown U's cancer center?  It is an NCI designated center as is Hopkins, and would be closer to you.  The link below has their contact numbers.  I am sorry this has been so frustrating for you, the waiting is hard enough, but to have such non-responsive providers is ridiculous.  Short of sending a letter to the doctor directly - marked personal and confidential, explaining the problem with his/her staff, not sure of your recourse.

    http://www.cancer.gov/researchandfunding/extramural/cancercenters

    · Share on FacebookShare on Twitter
  • dltnhm
    dltnhm Member Posts: 873
    edited June 2012

    Just wondering what is missing in your post? You have 'Sterling, VA' as  your 'home' but you talk about giving up on getting treated in the United States and are "totally disappointed with US healthcare system". I'm wondering if you might explain a bit more about why you are seeking treatment in the US and what obstacles (possibly you are not a citizen) you are facing.

    Regardless, unreturned phone calls and missed deadlines by medical professionals (or any professionals, for that matter) are huge pet peeves of mine. Just return the dang phone call folks.

    Hope the best for you.

    · Share on FacebookShare on Twitter
  • guineamom
    guineamom Member Posts: 62
    edited June 2012

    SpecialK, thanks for the link. I'll check it out if I decide to persue treatment in US.

    dltnhm, I came to US more than 15 yrs ago so I have the option of going back to home country for treatment. My mom has 2 rounds of cancer over the years back home and NEVER EVER had we had to go through these sort of things when she had to go through all her treatments. But going back has it's own set of headaches eg I'll have to be away from work for months, headaches with insurances, paperwork, etc. Other option I'm persuing now is no treatment, just monitoring. A little nervous doing this as my dcis area is pretty big (at least 3.7 cm) and that I'm BRCA+.

    We'll see how. I'll get a good night's sleep, enjoy the weekend and may start fighting the US healthcare system again next week. I just need some place to rant to get the frustration off. Thanks for listening.

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2012

    guineamom - I had a few scheduling headaches myself and at one point went to the office (my primary care and source of referral and insurance approval) and told them I was going to wait until they could fix the problem, which they did, but it took 4 hours.  My breast surgeon wanted a specific plastic surgeon due to the kind of immediate recon I was having, but he was out-of-network.  This was the Wed. before my Mon. BMX!  I still had not seen the plastic surgeon for the consult because the approval had never been requested by the BS scheduler!  I just sat there while they made the phone calls and the plastic surgeon was gracious to make time for the consult on the Fri. which is usually a surgery day for him.  It is a lot easier for someone to not return a phone call, it is a lot harder when you are standing right there!  Sometimes you have to be a bulldog!

    · Share on FacebookShare on Twitter
  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited June 2012

    Guineamom, my question is more about why you are going through this scheduling.  Do you have a primary care doctor?  Who did your biopsy and diagnosed your DCIS?  If it was a radiologist, why aren't they helping you schedule.  I am really confused.  I am in a little city (less than a million people) - and all of the referrals and scheduling was done by my doctors.  

    If you don't have a primary care doctor, or a GYN, can you find one and enlist their help navigating the system?  If you don't want to do this, what I would suggest is that you call customer service representative at Hopkins to "complain" - I bet they can get you some reaction!

    Good luck to you. 

    · Share on FacebookShare on Twitter
  • guineamom
    guineamom Member Posts: 62
    edited June 2012

    I have a primary care doctor but the last time I saw her was in Dec when she sent me to a BS. After that she has been out of the picture. BS did the biopsy. I had to change BS because of the type of reconstruction I wanted. Called the office of the new BS to have them schedule a surgery and they have been sitting on it for a month.

    I posted on Hopkins's website about my experience, got a call back. Guess that got their attention. Earliest avail appt date whereby BS and PS available on the same day is 28 Jun. Yeah... more waiting...

    · Share on FacebookShare on Twitter
  • theBCavenger
    theBCavenger Member Posts: 313
    edited June 2012

    I am so annoyed for you! What a horribly experience... cancer of any kind is enough to worry about.

    Please keep us updated! Hope things start moving more smoothly. 

    · Share on FacebookShare on Twitter
  • JAT
    JAT Member Posts: 81
    edited June 2012

    I also think you should try Georgetown.  I had my treatment there.  My BS was Shawna Willey and she works as a team with the PS, Scott Spear. He is a top reconstruction surgeon, and their staff handled all the scheduling for me (MRIs, gene testing, recon, etc). You have to let  Dr. Willey's assistant know what you've had done already so she knows that you can't waste 3 months waiting for an appointment.  I had my mamogram and u/s and saw her that very day- and a biopsy within 2 weeks and the  bi-MX a month later.  Good luck.--JAT

    · Share on FacebookShare on Twitter
  • lisagwa
    lisagwa Member Posts: 232
    edited June 2012

    Guinea mom- how long has it been since your dx and no treatment? I went to PS at JH. I went to BS at GBMC and Mercy (had more than one opinion). if you want, send me a PM and I can give you tele #.

    · Share on FacebookShare on Twitter

Categories