Waiting for Biopsy Results - Possible Recurrence

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Anonymous
Anonymous Member Posts: 1,376
edited April 2020 in Not Diagnosed With a Recurrence or Metastases but Concerned
Waiting for Biopsy Results - Possible Recurrence
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  • Mudstick
    Mudstick Member Posts: 100
    edited February 2020

    Long story short - I had positive margins for DCIS after my skin sparing mastectomy in October 2018 for IDC/DCIS ER/PR+, HER2-. My Oncotype was 14 and with no nodal involvement, so no chemo recommended. Radiation was not recommended either - the doctor said that DCIS was "wimpy cancer". So, I've been on tamoxifen for the past year.

    Unfortunately, I found a small lump near my scar this past Christmas (2019). I visited my surgical oncologist, who tried to be reassuring by saying 90% of the time these lumps are scar/fat necrosis. She sent me for an U/S and Mammogram that happened on January 27. The U/S tech noted there were actually 2 masses on top of one another (7mm and 3mm). The radiologist classified my imaging as BIRADS 3 (2-3% risk of malignancy) and recommended re-imaging in 6 months. Given my history (multifocal IDC, LVI and positive DCIS margins) - I was not comfortable waiting 6 months to see if anything changed.

    They couldn't book my biopsy until March 13th (low priority). However, luckily I was booked for my Stage 2 DIEP surgery (scar revision, fat grafting) and my Plastic surgeon agreed to do an excisional biopsy while I was under general anesthetic. My surgery was last week (Feb 4th) and now I'm sitting on the waiting train, trying to focus on the 97% chance that this is benign.

    I'm not really looking for advise I guess...just company from those who understand what its like to wait for results while trying not to go too crazy!

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  • smc123
    smc123 Member Posts: 71
    edited February 2020

    Stay busy and do anything that will distract yourself...binge watch something on Netflix or Amazon! While waiting for my test results I met friends for coffee, organized all of my family photos and exercised. Good luck!

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  • Mudstick
    Mudstick Member Posts: 100
    edited February 2020

    Thanks for your response smc12.

    I'm certainly trying to stay busy and with 2 young kids, it's not too hard...however focusing at work is definitely a challenge :-)

    Fingers, toes and everything crossed for a benign finding!!

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  • KBeee
    KBeee Member Posts: 5,109
    edited February 2020

    Hoping your results come quickly and that all is benign. I hope you recover quickly from surgery.

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  • Mudstick
    Mudstick Member Posts: 100
    edited February 2020

    Thanks kbee. Still waiting and torturing myself

    I did get the mammo and u/s report, which briefly satisfied my desire for information....I'm praying I get a call before the weekend, so I can relax (or prepare) and enjoy it with a less scrambling, anxiety ridden brain!

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  • Mudstick
    Mudstick Member Posts: 100
    edited February 2020

    My surgery happened 2 weeks ago (tomorrow) and I'm still waiting for biopsy results :-( I have a follow-up with the Plastic Surgeon on Wednesday morning and I'm really, really, hoping they will be available. Waiting is torture!

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  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited February 2020

    I'd be hunting people down for waiting this long!!!!

    Hoping all goes well!

    I had a Birads 3 score on MRI last June. In Dec it was a 4 so I just had a biopsy and it was fat necrosis. I had those results via a phone call in less than 24 hrs. from the biopsy.


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  • Mudstick
    Mudstick Member Posts: 100
    edited February 2020

    Thanks for the support ctmbsikia! Glad your results were fast and B9 :-)

    I called both the plastic surgeon's office and the surgical oncologist's office today - hoping for anything to ease my anxiety. I don't even care if its bad news, it's would be an answer that takes me out of this torturous limbo (OK - that isn't true. I care - I care a lot, but I'm losing it!!)

    Both offices said my file indicated the biopsy is "Active - In progress". We had a holiday here on Monday and they said maybe that could be slowing things down.....but results generally take 2-3 weeks regardless. I checked my pathology report from my mastectomy in 2018 and it was finalized exactly 2 weeks after my surgery.

    I wish I could just put the fear and anxiety in a little box and hide it for the next week so I don't have to deal with it.......

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  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited February 2020

    Are you in the US or Canada? Or somewhere else?

    I really hope you get answers at your appt. then.

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  • UpstateNYer
    UpstateNYer Member Posts: 387
    edited February 2020

    Hello Mudstick,

    Playing the waiting game is the worst! I had positive margins twice after my lumpectomy last March. First margin positive for idc/dcis, second time for dcis only. Before I was to have my 3rd surgery, got kicked in the face with a high onco score, so needed chemo before they would do final surgery. Anyway, I was able to personally meet with my wonderful pathologist who went over my slides after first positive margins. She also "rushed" the final specimen (seeing it was my 3rd surgery and I asked her nicely ) for me. I had surgery on a Wednesday and had results the following Monday. She had 2 other pathologists look at my slides as well. There definitely is a protocol to the way specimens are to be processed and that can't be rushed. Unless your facility has a huge backlog of specimens to be processed, you should have had an answer within 10 days or so. I pray that you get negative results and I will keep you in my prayers.

    Take care. Pat

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  • Mudstick
    Mudstick Member Posts: 100
    edited February 2020

    Thanks for the replies and thoughts ctmbsikia & UpstateNYer!

    I am in Canada - so the public health system is likely slower than most US hospitals. I read the hospital website and they process 400 specimens and 2500 slides per day :-( I'm also certain I was not flagged as a high priority :-)

    I'm having a glass of wine after work today. Screw it.



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  • UpstateNYer
    UpstateNYer Member Posts: 387
    edited February 2020

    Mudstick,

    Enjoy that glass of wine. You go, girl. Hoping and praying for negative pathology for you. Try to keep busy and do some things you really enjoy. I know , easier said. If I had everything to do over, I would have worried less. As someone on one of these forums quoted, "worry doesn't take the sorrow from tomorrow, it takes the strength from today". Positive sunny thoughts.🙏 🔆

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  • Xtra
    Xtra Member Posts: 16
    edited February 2020

    @Mudstick I am thinking of you! I hope you get your call soon!

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  • Xtra
    Xtra Member Posts: 16
    edited February 2020

    @ Mudstick I am thinking of you! I hope you get that call soon

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  • Mudstick
    Mudstick Member Posts: 100
    edited February 2020

    Had my follow-up with the plastic surgeon this morning. No biopsy results yet - but I figured that would be the case. She tried to be very re-assuring and said that the mass she took out was just a cyst and not to worry. I told her I can't stop worrying until I get the definitive results. Then she floored me and said it could take up to 4 weeks!!! Shoot me now...I'll be fit to be tied waiting that long!

    Grrrrrrr

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  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited February 2020

    Good grief!!! You're gonna need a bigger glass of wine!

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  • beep7bop
    beep7bop Member Posts: 130
    edited February 2020

    Well hoping all comes back good for you. The waiting is awful. I am having a problem also. Had my reconstruction surgery December 31, 2019. I am seeing breast surgeon this Tuesday for a peanut size mass. I think it might be a node. But it didn't show on ultrasound, which I thought was good but they are sending me back to breast surgeon for biopsy.

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  • Mudstick
    Mudstick Member Posts: 100
    edited February 2020

    Hi beep7bop - sorry for the late response! How did your appointment go with your surgeon? I'm hoping that because it is early after your surgery, that the lump you are feeling is fat necrosis or scaring.

    I made a complaint to the Patient Advocacy section of my hospital and received a call from an Adviser today. She checked my chart and my results are still NOT ready. Today makes it 3 weeks since my surgery and biopsy....she was going to follow-up with the Pathology Lab and get back to me (although she didn't say when). She thought the Lab had seen an unusual increase in samples and was running in a backlog. This combined with the many different stains they apply to breast samples, it could be why it is taking longer than expected. I just want to move forward....

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2020

    Wow, Mudstick, I'm sorry it's taking so long to get your biopsy results. That must be so frustrating. I remember waiting 4 days for my results - both times - and it seemed like an eternity! I can't imagine waiting 3 weeks. You have more patience than I do, probably more than most people. Lol I'm sending you hugs and prayers for good results.

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  • ToughCookie101
    ToughCookie101 Member Posts: 191
    edited February 2020

    That is stressful Mudstick. But hang in there!! I hear ya regarding the slow medical system. I live in Canada too and although I am thankful to have been blessed with a great medical team, I have had some pretty long waits since my diagnosis, and I am a pain in the butt and constantly (but kindly) call the hospital when I am waiting for results or an appointment. When I was waiting for an ultrasound recently one of the booking clerks said she felt like we were becoming best friends, haha


    After I was diagnosed on my left breast (after a birads 5), I had a non-palpable birads 4 mass found in my right breast during my MRI. It was biopsied and it turned out to be benign (a pash tumor). I am now going for fat grafting in March, and at the same time they will excise and test three small lumps that I recently found on the left side. They were already images and they also weren’t overly concerned by them however recommended follow-up imaging in six months I would rather them gone.

    All that to say that I understand your fear, and the waiting sucks. Odds are it is benign. I hope you hear back really soon!!

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  • Mudstick
    Mudstick Member Posts: 100
    edited February 2020

    Thanks for the kind words and support and understanding .

    I made a complaint (politely) to the patient advocacy group at the hospital about the length of turn around time and anxiety it is causing me. An advisor called back and said she checked my chart and there are still no results, so she would follow up with the Pathology Lab and get back to me. She did say she thought they were in back log, and the current wait time has been longer than usual :-( I leave for a work related trip this weekend, so I'm really, really hoping that my results are in before I leave!

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  • moth
    moth Member Posts: 4,800
    edited February 2020

    This is really crazy stuff you guys. I'm in Canada too and I guess today I'm writing this down in my gratitude journal - my doctors often get a verbal report from patho or radiology within 24hr. Sometimes it's literally less than a couple hours. I barely got home from the scans & was making a cup of tea when my dr called me with results.

    One other thing I appreciate about my doctors & I'd encourage you to ask your drs to do this too - ask them to "assume the worst from this test" Where would you most likely send me next? CT? Surgeon? ultrasound? whatever it is - BOOK it now. It's easier to cancel and there are always people waiting for last minute / urgent / STAT appointments, rather than getting results and then trying to book the next thing.

    Mudstick - fingers crossed for you for speedy and benign results!!

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  • Mudstick
    Mudstick Member Posts: 100
    edited February 2020

    That is a great idea moth !! I wish I had said something like this to the SO and PS during this journey. I will keep that tip in my back pocket from now on :-)

    I feel like my initial diagnosis in 2018 moved rapidly (BIRADS 5) and had biopsy, Surgical consult, MRI and all pathology completed within 2 weeks. This time, I feel like there is a very low sense of urgency from the doctors. Especially the plastic surgeon, who performed the excisional biopsy during my Stage 2 DIEP recon....

    I was looking in my patient portal today and noted that the surgical notes don't actually state a biopsy was performed (notes entered by a student, not the primary surgeon). They only report the scar revision, fat grafting and removal of 3 moles.....that is kinda freaking me out right now.

    I have an incredible recurring history of mistakes being made. Some of my medical chart recorded the wrong breast, my wrong age, wrong surgeon etc. I seem to get lost in systems - hotel and restaurant reservations go missing or aren't recorded, my biopsy/pathology sample to send for Oncotype testing was "lost/misplaced" for over 2 weeks in the hospital and it took a month to get my results . I feel like I have an invisibility cloak sometimes!

    I'm trying to remain positive, but the frustration is leaking into me. I'm more irritable and snappy with the family and really struggling to focus on my work.

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  • Mudstick
    Mudstick Member Posts: 100
    edited February 2020

    Well, my instincts were right to be concerned. Pathology results show a recurrence :-(

    I meet with my surgical oncologist on March 9th to discuss plans etc. I'm not at devastated as I thought (not yet anyway) - I was preparing for the worst.

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  • moth
    moth Member Posts: 4,800
    edited February 2020

    Sorry to hear that Mudstick :(

    hang in there. hope your MO comes up with the most excellent plan for you.

    Will you be having CT scans of chest and abdomen?

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  • Mudstick
    Mudstick Member Posts: 100
    edited March 2020

    Thanks Moth - I hope so too!!!

    I don’t know what is in store yet for testing or treatment...I’ll hear a bit next week, but only from the Surgical Oncologist....

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  • KBeee
    KBeee Member Posts: 5,109
    edited March 2020

    Mudstick, I am sorry to hear you are dealing with a recurrence. PM if you have questions. I've traveled that road. ((((HUGS))))

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  • Mudstick
    Mudstick Member Posts: 100
    edited March 2020

    Thanks for your kindness and support KBee. I've read your experience on these boards and it's been super helpful.

    I’m anxious to speak with my Surgical Oncologist on Monday. I don’t have answers with respect to hormone receptors and my margins for the excisional biopsy stated “at least 1mm”. So, I’m wondering if they will want to go back in and do a wider excision. I’d also like to figure out what imaging or other testing is in my future.

    Plus discuss Oncotype testing and the MO’s recommendation regarding chemo....

    I’m 99.99% sure of radiation, since I didn’t have it during my first party.

    Focusing on the positive and looking forward to determining the plan!

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  • KBeee
    KBeee Member Posts: 5,109
    edited March 2020

    Mudstick, how did your appointment go? I first met with an MO at a major medical clinic. That doc recommended no chemo for me, and refused to do the Oncotype, even when I said I'd pay for it. They insisted it was just some cancer my docs had missed, but my gut said otherwise. I met with a local oncologist after that. This MO was new for me (had fired previous local MO who told me to ignore a lump). This new MO agreed with me, and ordered Oncotype (which insurance covered in full) and it came back quite high. After that, major medical clinic agreed that chemo was in order. What is your plan now?

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  • Mudstick
    Mudstick Member Posts: 100
    edited March 2020

    Thanks for sharing your experience KBee.

    So far I’ve had my re-staging imaging, and just heard today that both the CT and bone scan were clean. Phew. My RO is recommending radiation, but is discussing with the rumour board whether to radiate the node area or not. My planning is currently booked for April 2nd.

    I don’t meet with my MO until March 31....no hormone markers available yet either.

    Thanks for checking in 😊

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