How long between diagnosis and surgery/treatment

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Kelligirl5
Kelligirl5 Member Posts: 81

I was diagnosed with Paget's disease/DCIS on 3/30 from a punch biopsy. I went on to have an ultrasound on both sides to look for other areas which came back clean. I then went on to have an MRI with showed "something" on the other side. They sent me back for another ultra sound to see if they could biopsy it that way but could not find it again( I knew they wouldn't??) I had an MRI guided biopsy scheduled for today but it was cancelled this morning. I'm getting frustrated with how long this is taking to even diagnose and the thought of the current DCIS progressing day by day while I wait. How long before you had your initial surgery? The current recommendation is lumpectomy and radiation. Obviously that could change after the surgery. I just fele like things are moving way to slow, even the surgeon had said that she wouldn't want to go more than a month of two, yet here we are over a month out from my first appointments and I'm still not fully diagnosed even. The Paget's is definitely getting worse, is basically an open wound at all times. What was your experience/timeline?

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  • MBPooch
    MBPooch Member Posts: 229
    edited April 2018

    I was diagnosed with Pagets last October 16th. MRI indicated spot of DCIS under the Pagets as well as another area on each side. I had both other areas biopsied by ultrasound and both were thankfully benign. My understanding is that DCIS is very slow growing. I've seen this before and it's so true - while having to deal with this new diagnosis it's more of a mental emergency than a physical one. I opted for a double mastectomy with immediate reconstruction (direct to implant) and didn't have that surgery until Nov. 30th. I wanted to wait for my daughter to finish her State meet for her HS swim season. My medical team were all in agreement that there was no harm in waiting that long. Do you have your lumpectomy scheduled?

  • Kelligirl5
    Kelligirl5 Member Posts: 81
    edited April 2018

    So far no dates scheduled at all. I still have to wait for them to try and reschedule the MRI Biopsy. It took a week and half to get today's cancelled appt. I think if I didn't have an actual open wound I wouldn't be stressing this much. I just felt the urgency from the surgeon when in her office but now I can't seem to get the second biopsy even on the books.

    What made you choose the double mastectomy? I have that option with immediate reconstruction, flap from belly area? It's such a long surgery I've not looked into it much but I keep seeing more and more that opted out of radiation.

  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited April 2018

    I was diagnosed on 3/6/17 with dcis In L Breast. Had bmx on 3/31/17.

    Why was your appointment cancelled? On their part, I'm assuming. So can they squeeze you in some other time, in the near future?

  • Kelligirl5
    Kelligirl5 Member Posts: 81
    edited April 2018

    Appt was cancelled for water damage? Not exactly sure how that happens but I've been waiting all day for them to call me back with a new appt. which is even more frustrating. I took time off work today to get in there and now will have to take another day off when they finally call me with something.


    So both of you had an bmx instead of just the lumpectomy. Was that to avoid radiation?

  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited April 2018

    yes... to avoid radiation AND bc of my age (37).


  • Peacetoallcuzweneedit
    Peacetoallcuzweneedit Member Posts: 233
    edited April 2018

    I was diagnosed May 6th and double mx SNB 6/1 - my BS said to get the DCIS out because of size 6cm and grade- sooooo many appts between MRI another biopsy, xrays, labs, etc...nothing seemed slow or really was it..... I would be doubting too Kelli....

  • LisaK12
    LisaK12 Member Posts: 107
    edited April 2018

    I was diagnosed with DCIS in my left breast in late December, had two lumpectomies in mid-late January (neither with clear margins), and my surgeon was fine with me waiting a few months -- until April -- for my double mastectomy. I also got a second opinion which said I could opt either for a third lumpectomy or a mastectomy and that DCIS was not an emergency and that it was fine to wait a few months. The pathology results from my mastectomy just came back with nothing more serious than DCIS, which was in left breast only. Right side did have LCIS and atypical ductal hyperplasia though, so I am still glad a had a double mastectomy even though they only recommended a single. Left sentinel lymph node was clear.

    Good luck to you.

  • TrmTab
    TrmTab Member Posts: 832
    edited April 2018

    Was diagnosed in Sept, then a couple of months of byopsies, mri, etc. As a teacher we scheduled the LX for the holiday recess. Didn't get clear margins, but was only DCIC still. Had a second LX before end of holiday recess...but still not clean margins. So had to WAIT for the MX until June and went on Arimidex during these months to ward off any spread...and there wasn't any spread.

    So diagnosed in Sept and didn't have MX until following June. If truly DCIS it is slow moving, especially with aid of Arimidex.

  • Kelligirl5
    Kelligirl5 Member Posts: 81
    edited April 2018

    Thanks ladies! I did finally get a call and scheduled for next week at least. The waiting is driving me crazy though!

  • MBPooch
    MBPooch Member Posts: 229
    edited April 2018

    Kelligirl5 - I opted for a double BMX because I'm a high health anxiety person. The stress of the diagnosis then the scare of the two benign masses on the healthy breast made me not ever want to deal with this again or at least minimize the chances as much as possible. I didn't want radiation and felt there were too many unknowns with tamoxifen or how it would affect my body to have to take it for 5 years. I couldn't do diep reconstruction as I don't have enough body fat. Direct to implant was great because it eliminated the need for a second surgery. I was able to get silicone implants at the same time as the mastectomy. If it's an option for you it would be worth looking into.

  • Kelligirl5
    Kelligirl5 Member Posts: 81
    edited April 2018

    I do have the option of diep (this is the one with your own body fat right?) My surgeon said I would be a great candidate as I do carry fat in my belly. I've not pursued it because it becomes a major surgery versus less time on the operating table. I'm struggling with the thought of radiation though. I'm on the fence until we get the biopsy done on the left side. If I end up needing a lumpectomy on both sides I may just opt for the diep and be done.

    Tamoxifin is this a standard protocol? It seems everyone who opted for just the lumpectomy is on it or had it recommended? It was not discussed at all during my first meetings with the surgeon.

  • MBPooch
    MBPooch Member Posts: 229
    edited April 2018

    I believe both radiation and tamoxifen are required or just standard with a lumpectomy.

  • Justkeepmoving
    Justkeepmoving Member Posts: 106
    edited June 2018

    Hi Kelligirl5

    I see you've had your procedures and radiation is about to start. I hope you are doing well.

    You may not be offered anti-hormone therapy if you are ER negative. It won't effect the cancer you had (if by chance any cells remained) and it would only be ordered to prevent any new growth in the other breast and I don't think this is standard care.

    Good luck xoxo

  • Spiritwarrior
    Spiritwarrior Member Posts: 2
    edited June 2018

    HI I am also worried about long wait on March 15th I had what they said was a very supivious mamogram, it then took me until April 29th to get biopsy, another two weeks for those results, DCIS high grade comedo type, which from reading on here is the fast growing kind, then I saw breast cancer doctor on May 1rst, then saw surgeon on May 15th, now because if my rare leukemia that makes surgery dangerous, breast surgeon wants me to see a hemotologist, they called today and said earliest I can see him is July 2nd, then surgeon said I need to see a allergist don't know date for that, so here it is at least 4 months wait that I know, i am so worried of this getting out of milk ducts, it is making me sick with worry, as they really want know from what I read here if it is pure DCIS until they do surgery and check the nodes, so yes worried sick. I asked doctor to do a double mastcetomy but she said because of my rare diseases that was not a option, she only wanted to do a lumpectomy, but I said I was not budging on that ,as I read to much on here of people having to go back and I told her because of my rare disease I would not be able to do radiation so she agreed to single mastcetomy of right breast, because I am ashkenazi jew she is doing the BRCA 1 and 2 test, I am ER negative, PR undeterminate, So how long is to long? AND how worried should I be? How many others on here have had 5 months or so wait and it did not spread, help my nerve's on this or I will be to sick for surgery when they ever get around to do it, I am going to Georgia cancer center a university teaching hospItal, that is in Augusta Georgia and supposed to be a good place but this wait is not good and scaring the he'll out of me

  • moth
    moth Member Posts: 4,800
    edited June 2018

    Spiritwarrior - I'm sorry that you've found yourself here and that you're experiencing such delays. Having comorbidities complicates things but at the same time, you're right in wanting to have treatment planned & implemented at a reasonable pace.

    There has been some research about optimal times to surgery https://respectfulinsolence.com/2016/01/12/breast-...

    & then if chemo is needed, optimal times for that as well http://www.breastcancer.org/research-news/20140220...

    I'm not very familiar with your system but in most hospitals there's either a nurse navigator or a patient advocate. I wonder if contacting them & getting them to help might work in moving things quicker? Perhaps a different hematologist has earlier appointments? Worst case scenario, maybe you can call all the hematologist offices in your city yourself and see if anyone has cancellations or openings earlier. Once you find one, get your doctor to send the referral there... It sucks but I think sometimes we might have to do the groundwork because at the end of the day, it matters more to us than anyone else...

    best wishes

  • Spiritwarrior
    Spiritwarrior Member Posts: 2
    edited June 2018

    thank you moth I am a VA patient so every doctor has to be approved for payment before I can see them, I did call nurse navigater today and I am waiting for a reply, I asked my son should I get another doctor but he said then I would go back to step one, so you are right I will need to try to move them along, I was just reading that DCIS is slow growing and that gives me small comfort because mine is high grade comedo type I did get some clonazepam from primary care today and doctor said that will help my nerve's and I agreed with her but said I don't think it will help my breast, so tommorow I will start putting my foot down to move this along, it helps having people like you and this forum to talk to



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