Waiting -additional biopsies, surgery plan and genetic testing

hyphencollins
hyphencollins Member Posts: 109

Hi everyone, I've posted a little bit here before and have also been lurking and taking in a lot of great information from all you wonderful women!  In May, I was diagnosed by core needle biopsy with IDC, grade 1 (it was noted by the pathologist that it is suggestive of tubular), ER+PR+Her2- and DCIS, grade 3  with comedonecrosis.  I feel fortunate as these are comparatively favorable diagnoses.  I was given a breast MRI which led to two additional biopsies (one MRI-assisted and one mammogram-assisted) - one on the same breast (left) and one on the other side (right).  The radiologist said that it appears that the DCIS is fairly extensive on the left and that she suspects that there is an invasive component (or at least that is what I took from our conversation).  (On the right, she did indicate that they were being cautious by doing the biopsy and so I am not feeling overly concerned about that - unless I remind myself that that is pretty much what they said before the original biopsies that did turn out to be IDC and DCIS!).  I meet with the breast surgeon on Monday to get the results and finally discuss a plan for surgery.  Genetic testing should come back in a few weeks (family history and my age (40)).  I'm anxious about the prospect of mastectomy but obviously I'll do what I need to do.  Mostly, I'm just worried that if there is an invasive component as the radiologist suspects, that it may not be as favorable as my suggestive-of-tubular grade 1 IDC!  Anyway, I'm not even sure I have a question for the board at this point -- Just want to introduce myself and give a shout out and well-wishes to anyone else who is waiting too!!!

Comments

  • Ariom
    Ariom Member Posts: 6,197
    edited June 2014

    Hi hyphencollins, so sorry you have had to join us here, but glad you've found posts helpful and that you felt confident enough to start posting here, yourself.

    I am so pleased to see that you'll be getting some news on Monday, we all know how brutal the waiting game is!

    I know it is hard, but try not to go to the worst case scenario. Ask questions here, come here for support there will be others around soon to introduce themselves and share their own experiences. I wish  you all the best and look forward to hearing how you get on next week. Take care!

  • hyphencollins
    hyphencollins Member Posts: 109
    edited July 2014

    Hi!  Thanks Ariom for your advice.  Wanted to post an update.   The right breast biopsy diagnosed PASH (benign).  The left breast biopsy was IDC grade1.  They didn't test er/pr/her2 but I asked that it be tested; not sure why it wasnt. My BS feels mastectomy is prudent given the multifocal presentation.  I'm off to the mastectomy and reconstruction boards as I have a lot to learn and some decisions to make.  The genetic testing is still pending; would like to get this back so I can have more information as I need to decide about UMx vs Bmx.  

  • AmyLynnG
    AmyLynnG Member Posts: 5
    edited July 2014

    you and I are in the same boat. I was diagnosed via biopsy a few days ago. Tumor size is 1.5 cm and is invasive duct carcinoma grade 3. I am premenopausal. I have to wait another week to determine if I am HER2 positive. I am estrogen and progesterone positive. I am seeing a gene specialist July 17 to see if I test positive for the BRCA gene mutation. I have a surgery consult next week. So scary. 

    Amy 

  • Moderators
    Moderators Member Posts: 25,912
    edited July 2014

    Dear hyphencollins and AmyLynnG, 

    We are glad you've found BCO Forums where you can read real experiences to assist with your knowledge to make better informed decisions, when needed and gain emotional support from those who have been through similar.

    We hope you find answers on this forum but please don't be reserved in asking questions to clarify details as it is a big learning curve and the others here will be very helpful.

    Regards, The Moderators

  • Ariom
    Ariom Member Posts: 6,197
    edited July 2014

    So sorry to hear your news, hyphencollins and AmyLynn, but you are in the right place to find support and advice should you need it.

    The Mods are right, there is so much info here and everyone understands how difficult it is to just slot into Dx mode. It is a Roller Coaster, but there are lots of people who'll hold your hands on the ride!

    Let us know how you're getting on!

  • Nan54
    Nan54 Member Posts: 93
    edited July 2014

    Thinking of you both and wishing you strength in the next few weeks and months! It's a huge bump in the road, but one day it will hopefully be behind you. Hang in there and please keep us posted...

  • hyphencollins
    hyphencollins Member Posts: 109
    edited July 2014

    Hi AmyLynnG,  Just wanted to pop on to see how you are doing.  I hope that your surgery consult goes well and that you feel good about the plan you decide on.

    Thanks everyone for your support.

    I'm seeing the plastic surgeon next week.  I feel like I've spent so much time reading about stage, grade, diagnosis, and testing that I'm completely unprepared for the decisions I need to make around reconstruction.  (and seriously, I was diagnosed in May and knew mastectomy was on the table -- it wasn't like I haven't had time to read about THAT!).  The options for reconstruction seem overwhelming!

  • Jennie93
    Jennie93 Member Posts: 1,018
    edited July 2014

    hyphencollins, I just wanted to mention that decisions about any possible recon can wait until later, in fact, if there is any chance at all that you might need radiation, then it's best to delay it until after that.  I had a UMX, the BMX was never offered to me, and I never considered recon for a moment. It wasn't pushed on me either.  Reading here after, I was surprised at the number of women who were pressured into recon and regretted it later.  I would encourage you to focus on getting through the surgery now, and put off any decisions about recon, knowing that it will give you time to look into your options, what all they involve, and decide whether you really want to go through all that at all.  You may find that you are just fine with the way you are, and feel no need for any further surgeries, as so many of us here have.  Best wishes. 

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