order of appointments - Breast surgeon/genetic testing

Options
rphouse
rphouse Member Posts: 18
edited April 2018 in Just Diagnosed

I am 40 years old and just got a diagnosis of DCIS in left breast. I have some family history of breast and prostate cancer. Will be going to genetic counseling appt tomorrow and have appointment with breast surgeon next week. After confirmation of DCIS I had MRI that identified another area that requires another biopsy. My understanding is that it can take up to four weeks to get genetic testing results. At this point I’m feeling that if my genetic testing confirms mutation linked to BC I would opt for bilateral mastectomy. A lot of info to actually get to my question which is does it even make sense to see breast surgeon before i get genetic testing results?

Comments

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited April 2018

    Yes. Go ahead and schedule the breast surgeon appointment . There's really no reason to wait. You can talk with them about waiting on results of genetic testing.

    I also had genetic testing. Cancer runs rampant in my family tree, mostly breast, colon, uterine, and lung cancers, but also a few pancreatic cancers and leukemias. So, there was STRONG suspicion of gene mutation. They recommended two tests. The first one looks for the BRCA genes and a couple other more common ones. The second tested for about 19 rare gene mutations. When the first test came back negative, we all rejoiced and I had a lumpectomy. And then 3 weeks later the other test results came in--positive for TWO rare genes that cause BC, colon, and all the other cancers in my family.

    In the end my tumor was deemed to be more aggressive than usual, so I needed chemo. My MO strongly advised a BMX after chemo. Had I known, and had we all been a little more patient with the wait, I could have avoided the LX and re-excision and gone straight to BMX , thereby avoiding 2 extra surgeries.

    Best of luck to you. In my experience with BC, there's a whole lot of hurry up & wait in the process. Let us know how it goes.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited April 2018

    Yes - I would say to go ahead and meet with the BS. Just be upfront about wanting to see what the genetic testing and second biopsy show before making any decisions. They should be able to give you something like a "best case, worst case" scenario.


  • rphouse
    rphouse Member Posts: 18
    edited April 2018

    I’m definitely honing my patience skills. So many decisions to make. Also wondering if it would make sense to postpone biopsy till after genetic testing results are in. I feel like that may also bean unnecessary procedure ifI test positive for certain mutations.

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited April 2018

    I'd prolly go ahead with the biopsy. At least you can get that part out of the way.

  • gb2115
    gb2115 Member Posts: 1,894
    edited April 2018

    I would see the surgeon and get the ball rolling on the second biopsy, the reason being if you don't have a mutation you are really slowing things down at that point because they will certainly want to do the biopsy. Also in case your surgeon has a tight schedule you want to get on the books.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited April 2018

    Only something like 5-10% of BC is genetic. If the genetic screen is negative, you'll still want to know about the biopsy for potential treatment plans.

    Trying to figure out possible BC and possible treatment is sometimes like going after a multi-headed monster!


  • Meow13
    Meow13 Member Posts: 4,859
    edited April 2018

    I was told even with genetic testing there are probably more genes that aren't even known yet, so if you come back negative you never really know. I would have done the testing if the insurance would have paid for it but they wouldn't because I had no family history.

    Your decision on what kind surgery maybe effected by the results. In my case, because I had 2 tumors and one suspicious area I decided against another biopsy and went right for the mastectomy. If I had the BRCA 1 or 2 I may have done the bilateral not really sure though.

  • rphouse
    rphouse Member Posts: 18
    edited April 2018

    I guess I’ve already become jaded because 80% of biopsies come back benign, yet I became part of the minority. You all have good points though. I will keep my appointments as currently scheduled. I appreciate all of your input.

  • Nursepatient35
    Nursepatient35 Member Posts: 166
    edited April 2018

    In the end, you'll need all the tests/appts done sometime so the order doesn't matter too much. I saw my breast surgeon first and after she gave me all my options, I decided on the bilateral mastectomy. I never had an MRI since I made the decision to do a bilateral. It was until after my surgery that I did genetic testing and then saw an oncologist. I guess looking back I didn't have all the info before deciding to do a mastectomy but it was just my gut instinct and gave me the most peace of mind. When you're first diagnosed, it's all so confusing. Plus there's different types of cancers and I learned DCIS is a lot different than the invasive kinds. Knowing what I know now, I would not have changed my treatment. Best of luck to you and I'm sorry you have to be here. It really sucks but as someone told me right after I got diagnosed, DCIS won't kill you but the next few months will just suck. For me, I'd say it was about 3 bad months.

  • rphouse
    rphouse Member Posts: 18
    edited April 2018

    I went to genetic counseling appointment today, and they are able to rush the tests. It should be possible to get results before surgeon appt. 🤞Hearing all of your stories and the paths you chose gives me such comfort, so I greatly appreciate it

  • star2017
    star2017 Member Posts: 827
    edited April 2018

    I got my genetic testing results in about a week. The first person I met with was the breast surgeon. I’d say go see whoever you can get in with first

Categories