How long between diagnosis and treatment

Nulyte
Nulyte Member Posts: 62
edited September 2016 in Just Diagnosed

Hello , so received diagnosis Aug 15th and have a second opinion Sept 15 , no treatments yet. I was told it's slow progressing and it's OK to get a second opinion. I have Stage 2b Er/Pr + HER2 - ... Is this the norm? Thanks guys!

Comments

  • Imkopy2
    Imkopy2 Member Posts: 265
    edited September 2016

    Nulyte, I am sorry you have to go through this! There is nothing quick about BC...It is absolutely ok to get a second opinion, don't let anyone tell you different. I was diagnosed in the beginning of March and had a BMX in mid-April. During that time I had many appointments and testing that needed to be completed before I could actually have surgery. By the time the results for my BRCA test came in ( that took 6 weeks) all other testing was complete and my treatment plan was decided surgery (BMX w/TE), chemo, & rads. Hopefully this helps, good luck to you and remember you will get thru this!

  • Nulyte
    Nulyte Member Posts: 62
    edited September 2016

    Thank you! So you went with surgery first and then chemo? I've been pushing fir that but they insist chemo first then surgery but their only reason is because that how we do it :( it's so frustrating :(

  • radgal
    radgal Member Posts: 100
    edited September 2016

    I was diagnosed in late June and had my surgery late August. I saw three different surgeons and spent a lot of time here and online researching different surgery options. At first and right after I was diagnosed, I was panicked that the tumor wasn't being removed RIGHT NOW since it was cancer, after all.

    I was told that within 2 months, it wouldn't grow. I had to trust them because my mind really played tricks on me. I am grateful for the delay because I didn't go with my first choice to impulsively get a bilateral mastectomy but rather, research and weigh all my options for the tumor grade and type that I had.

    After I was diagnosed, I was laid off. No health insurance. Getting new health insurance opened up my surgical options because my HMO didn't do the treatment I had done.

    Spending a lot of time here really helped me between diagnosis and surgery. I also went to a breast cancer support group.

    I know this can be scary and overwhelming -- I was there. You're not alone.

  • ErenTo
    ErenTo Member Posts: 343
    edited September 2016

    Hi Nulyte, how do you know that you are stage 2B? Assuming from tumour size? Or do you have identified positive nodes?

    I had delays, it's not ideal and very never-wracking, but happens a lot. And it took me a while to get over it. I was diagnozed just before the holidays and did all my consults and scans during that time (fun times!), so 5 weeks from diagnosis to surgery. Then was scheduled to start chemotherapy one month post-surgery, but had unexplained cardiac arrest which delayed chemo by another 5 weeks.

  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited September 2016

    Sounds like you need to talk with someone else to explain why they are recommending chemo first, then surgery in your particular case. I can tell you a couple of reasons I've heard that, increasingly, they are doing chemo first, then surgery:

    1. To find out (for sure) which chemo our tumor responds to. If they take out the tumor first, then do chemo, there's no way to tell if the chemo they've selected for you is really the right one for your tumor. They just have to hope for the best. If they do chemo first, then they can see if your tumor responds (getting smaller, etc.) and if not, try something else. This gives them a lot of good information about your particular tumor, and how best to prevent any distant spread.

    2. Reducing the size of your tumor, makes the surgery easier on you, and may offer options that wouldn't have been available to you otherwise. Options like a smaller surgery (lumpectomy?), interoperative radiation therapy and who know what others.

    Someone at your breast center knows why chemo is being suggested for you first. Is there a nurse navigator? Someone you can ask to help you find out why this recommendation is being made for you?

    Best wishes,

    LisaAlissa


  • Nulyte
    Nulyte Member Posts: 62
    edited September 2016

    So I just received another call and am getting more and more frustrated. The secretary stated the Dr wants an ultrasound of the right breast. I said we have that already I'm coming in Monday for the MRI , she said well he wants an ultrasound. I again asked why? Her answer because ... Nope that doesn't work for me. So I requested all my clinic notes to find out that when I stated I want a bilateral mastectomy the Md wrote "pt needs/wants breast conserving surgery".... It also stated that I agreed to neoadjuvant chemo which I didn't I requested the Mammaprint be done first and then I would decide. She clearly wrote that there is no benefit of neo adjuvant over adjuvant if needed but she will not order Mammaprint and patient should be convinced to have chemo.... I'm beyond mad, frustrated ready to cry and it's been 4 weeks since diagnosis but as I can see this isn't a quick process :(
  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited September 2016

    Sounds like you no longer trust your current medical team, and you may be searching for a replacement team, not just a second opinion. Is your second opinion team someone you would consider as a primary? (it should be...) Is the second opinion with a major cancer center/NCIC-designated center of excellence for breast cancer?

    You have time, but you will want to review your second opinion team,and perhaps consider a third-opinion as well.

    Hang in there,

    LisaAlissa

  • Jiffrig
    Jiffrig Member Posts: 232
    edited September 2016

    If you truly are 2B you will definitely need/want chemo. You must have node involvement or a very large tumor, thus the chemo first. That is the new thinking to do chemo first to avoid unnecessary tissue removal to get clear margins. I think you should follow through with tests and then get a second opinion. You have time.

  • ocmdcat
    ocmdcat Member Posts: 21
    edited September 2016
    • I was diagnosed 4/20/2916. Didn't have lumpectomy until 6/16/2016 and did not start chemo until 7/25. The waiting is incredibly difficult, but pretty standard from my research.
  • ocmdcat
    ocmdcat Member Posts: 21
    edited September 2016

    I was diagnosed 4/20/2916. Didn't have lumpectomy until 6/16/2016 and did not start chemo until 7/25. The waiting is incredibly difficult, but pretty standard from my research.

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2016

    Ocmdcat-

    Welcome to BCO! We hope your treatment is going well, and that you find support in these forums when you need it most.

    The Mods

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited September 2016

    Nulyte, have you considered going to Moffitt in Tampa? They specialize in Cancer, my dad was treated there for bladder, kidney, skin cancer, and lymphoma.

    Typically they don't stage BC until after surgery, so I find it odd that they've already given you a stage. I'm guessing that your tumor is quite large, in those cases, it is common to give chemo first to shrink the tumor so that less tissues need be removed. Did they give you a grade? Grade indicates how fast growing/aggressive the Cancer is

  • Nulyte
    Nulyte Member Posts: 62
    edited September 2016

    Yes I did have an opinion at Mofitt and was unimpressed with their care and treatment plans. I live 2 hours away from them and scheduled for an MRI yesterday. I called twice Friday about my pre meds and the RN told me no they weren't needed ( I found that strange , I'm a pharmacist and know I needed pre meds). I called back and they were irritated that I asked again. Flash forward to Monday and radiologist refuses to do test with no pre meds on board. They also admitted they forgot to tell me they were using IV sedation even though I hadn't requested it... We spoke with the patient advocate and again left feeling like I was just another number in their book...
  • Hkuester
    Hkuester Member Posts: 27
    edited September 2016

    Your story sounds a lot like mine. I was diagnosed on August 14... I am Estrogen/Progesterone + ,her2 -. I do not have any lymph nodes involvement that they know so I'm having surgery first which is scheduled for September 26. The waiting is awful. I too am 2b invasive ductal carcinoma possibly 2a.

    Definitely try to find a doctor that listens

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