Why does everythign take so long to set up?

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JSilb
JSilb Member Posts: 25
edited June 2014 in Just Diagnosed


Is it normal for things to move slowly when doctors are trying to do tests and scans? I saw the surgeon on Tuesday who said he wanted another biopsy of my lymph nodes done and he would mark the order urgent. I haven't heard from anyone about scheduling the test. I am supposed to see an oncologist and haven't heard from that office either. I put phone calls in, but I just want to start the treatments so that I can get this cancer out now. How fast should I expect doctors' offices to move on tests and referrals? Thanks for any info.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited December 2013


    Hi


    this is the bane of almost everyone's existence.... especially at the front end. You do want them to do as much imaging and testing as possible before surgery so they know all that they need to know before they go in. However, that said, I think we all have experienced systemic slow downs during this part of the process. Some of it is volume, sometimes administrative glitches. I found that I needed to sometimes nudge things along.... but to give you some perspective, I was dx on 10/29/08--- had lumpectomy on 11/25/28 and treatment started on 1/16/09. Some of this was due to the holidays-- which can really slow things down. But there should be no reason that you cannot get alot accomplished in the next few weeks before the holidays..... I would just call regularly, be as calm as you can, and keep asking when you can be tested, or get test results or another appointment.......


    take care.

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited December 2013

    It's awful, isn't it?  I started to think of it as the "hurry-up-and-wait" factor of breast cancer.  There's all this urgency to set up tests, then you wait seeminly forever for the appointment, then you have to wait again for the results.  It's maddening, especially when your mind is screaming at you to GET IT OUT NOW.

    For me, I found the lump on May 31, 2011.  I saw my GP five days later.  He sent me for a diagnostic mammogram the next day.  I had to wait 8 days to find out that the results were "inconclusive".  I had to wait another week to get an ultrasound done.  Those results took 9 days to come in.  Then, I had to wait for the biopsy and THOSE results.  I was, formally, diagnosed on July 8th and had my surgery on July 20th.  Roughly seven weeks from start to surgery. 

    Longest. Seven. Weeks. Of. My. Life.

  • ziggypop
    ziggypop Member Posts: 1,071
    edited December 2013


    Oh lord - there are times that you just want to scream. I had a 9cm tumor that I could literally feel growing. My surgeon wanted me to do chemo first to shrink the tumor - but before that I had an mri & they found some suspicious spots on the other breast, so they needed to do an mri guided biopsy. y mo wanted to start the chemo ASAP, but the people scheduling the mri guided biopsy said they didn't have an opening for TWO MONTHS! I was just about in tears when luckily the wonderful doc who had done my mri overheard them saying this & came out and said that they had to schedule me in the next two days - period. She told them that my getting my chemo started was more important than their hassle in shuffling things around to make it work. It only took them 2 phone calls & 5 minutes to change things around. Keep making phone calls. Sometimes you have to make yourself annoying. One thing to understand though is that generally when a cancer is found it's been around for years - so a week one way or another is not going to make an actual difference - but I totally understand the GET IT OUT feeling.

  • pipers_dream
    pipers_dream Member Posts: 618
    edited December 2013


    I'll chime in on the calling them and bugging them. Right now I'm ready to strangle the scheduler. I was dx'ed on 11/14, had appt with the surgeon on 11/18 and he said we need an MRI right away. The scheduler called 2 days later to ask when I started my last period as this is important to when to time the MRI. I had already told the doc this on Monday but I told her again and repeated it 4 times. Then she failed to put it thru insurance correctly which caused me to have to make a bunch of phone calls and then get her going again but she gave the wrong period date to the radiology lab and they had to cancel my MRI yesterday. If they hadn't they said it would be a bunch of false positives on there. So now, wait another 2-4 weeks for my irregular period to come back and then go thru that again. Rad told me to bypass her and call for my appt directly though. So, even if you trust your surgeon or MO completely, you can't be sure if you can trust the nurse or appt scheduler or any number of weak links on the chain and you may have to do the calling yourself.


    My biggest problem with this whole BC thing is I tend to distrust modern medicine completely anyway, and stuff like this is not helping to gain my trust. I wonder sometimes if I'd be better crawling off into the hills and shooting up laetrile. (insert grin here)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013


    I was dx on 9/29/11 and started chemo Nov. 3, about. There are a lot of moving parts that have to be "oiled" by separate professionals. I wanted a second opinion before I started my chemo, and that took some time on top of everything else (scans, blood tests, appt to read pathologies, appts with oncology, surgery for a port insertion, etc.).


    I understand that you want your cancer out. But try to remember that all these different needs and diagnoses have to come together to get you the best treatment. Definitely do follow up calls on your own if you've been told you will get a call by "this day" and you don't get one. I'm a firm believer in being proactive that way.


    Claire

  • Ridley
    Ridley Member Posts: 634
    edited December 2013


    Jsilb. What has helped me is to get to know my docs assistants. Go meet them in person, so they know you as a person. And then keep calling. I found the process incredibly frustrating at the beginning when I was waiting for tests and the one test resulted in a need for another test. Everything seemed to take forever,


    Also, if your hospital provides a patient navigator or a nurse navigator, see if you can use their services.


    Good luck


    Ridleu

  • JSilb
    JSilb Member Posts: 25
    edited December 2013


    Thanks for the info. It turns out my surgeons office reversed two of the digits in my phone number so the biopsy people had been calling the wrong phone number for days.

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