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Waiting for Surgery- what’s next? Ugh!

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ebfitzy
ebfitzy Member Posts: 75
edited March 3 in Just Diagnosed

I was recently diagnosed with early stage grade 2 or 3 (there were two looks) IDC with DCIS characteristics (whatever that means) HR positive, HER2 negative, ki-67 40% high.

back in 2021 they saw a spot, did a second mammogram to conclude it was benign breast tissue. 2022 same spot noted but disregarded because previous work up showed it as benign. Fast forward to Jan 2024, developing asymmetry, concerning so second mammogram, ultrasound and eventually core biopsy to conclude IDC.

I’ve dealt with it okay so far, but I hate the wait. It’s been over 30 days since I’ve received my cancer diagnosis and still don’t have a surgery date. I can’t even make an appt with oncologist until AFTER my surgery and until they have the pathology report from my surgery. Is that normal practice? I feel like so much time is ticking by and it’s so stressful. I have so many questions that the surgeon can’t answer, yet can’t even get an appt with oncologist yet. I’ve decided to go for a double mastectomy to reduce my risk of recurrence. But I want to know what’s next. Will I need chemo? Will I need hormone pills or radiation? If they say no chemo, should I get a second opinion bc I see soooo much regarding chemo recommendations for those with a high Ki-67. I’m just so stressed not having a plan and making sure that my plan is a good one.

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,080
    edited March 3
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    A very quick response… until the post surgical pathology report is available, no treatment plan can be proposed. The biopsy results give some info but the treatment plans are based on that and surgical findings. Asking an oncologist at this point about chemo, rads, anti-hormonals would just be speculation. You simply can’t have a plan at this point because your doctor does not have all the necessary information to formulate a treatment plan. Again, speaking to an oncologist without the full picture likely would not yield anything definitive with respect to a tx plan. The post surgical report will provide all the info necessary to move forward .

    The waiting is very stressful as most of us know. Because breast cancer is not an emergency (really!) it’s unlikely that the wait for surgery will have any negative impact on your health. As for second opinions, they can’t hurt but remember that your second opinion oncologist will need to see that post surgical report too. Focus on what you know to be fact today and try not to go too far down roads you may never need to travel! Take care

    ps: I think you might mean DCIS, not DSIC. DCIS is a non-invasive ductal carcinoma from which IDC can arise so it is not uncommon to find them together.

  • ebfitzy
    ebfitzy Member Posts: 75
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    Thank you for your helpful comment❤️ I am trying to just relax and go with the flow. Thanks for clearing up some of my concerns!

  • geriatricmomoftwolol
    geriatricmomoftwolol Member Posts: 3
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    Just diagnosed IDC stage 2 ER, PR POS AND Neu neg. MRI looks promising that I found it early and it s small and maybe not made it to my lymph nodes. Found this very helpful, thank you. I feel like after the MRI and the biopsy I have been placed to idle waiting for my first surgery appt. Ugh is right. Probably psychosomatic reaction but I feel awful. Everything aches and my breast is still sore from the biopsy. I was never told this.

  • ebfitzy
    ebfitzy Member Posts: 75
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    @geriatricmomoftwolol i am so sorry you have to be a part of this community. I just finally had my surgery (opted for a double mastectomy) and am now waiting on surgical pathology report, waiting is the worst part! Hopefully you won’t have to wait too long for surgery..

  • ebfitzy
    ebfitzy Member Posts: 75
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    @geriatricmomoftwolol id love to watch your journey. I feel like we are in the same boat with an early stage (hopefully) and it’s always encouraging to keep in touch with someone who’s in a similar situation! Keep me posted on how things are going. I’ll be pulling for you over here. You got this!

  • geriatricmomoftwolol
    geriatricmomoftwolol Member Posts: 3
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    ebfitzy…I hope this all works out. I will update here. Please update how you are doing. April 19 is surgery consultation and then April 22 Plastics consultation. They moved it from beginning of May. Feeling better about that. I am wanting to go ahead and do double mastectomy too. Based on my family history. You got this too!

  • moderators
    moderators Posts: 8,287
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    Hi @geriatricmomoftwolol and @ebfitzy, checking in to see how you're doing!

  • ebfitzy
    ebfitzy Member Posts: 75
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    @moderators thank you for asking. I found out I do have lymph node involvement based on surgical pathology so I meet with a radiology oncologist as well as a medical oncologist on May 1 to discuss my treatment options. It wasn’t what I was hoping for but certainly not worst case scenario either. So I’m remaining positive! I’m healing from my surgery, feeling better every day! Especially since I was finally able to have my drains removed yesterday. What a crazy difference that has made me feel!

  • geriatricmomoftwolol
    geriatricmomoftwolol Member Posts: 3
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    Sorry to hear that that news. But definitely not the worst case scenario as you put it. I met with a radiation oncology and advances have really improved outcome. I am still waiting for surgery. No date set yet. The waiting is exhausting. I cycle from I got this to holy sh!t I have cancer. After meeting with the plastic surgeon and BC surgeon they told me that I am not a candidate for nipple sparing mastectomy. I have been offered a lumpectomy with a nipple relocation followed by radiation treatments for 3 weeks or instead of radiation a double mastectomy followed by chemotherapy. I guess it will all depend on if it is in my lymph nodes and second to that if the lumpectomy causes any major damage to nipple blood supply. Everything I read says that sparing my nipples does not increase reoccurrence. But if the surgeon tells me otherwise a 3d tattoo is ok for me too. This is all very surreal. I haven’t told anyone in my family yet, except my husband, until I get that surgery date. So difficult. Ebfitzy I am so glad to hear you are feeling better and are healing.