Diagnosed--awaiting genetic testing results to schedule surgery

Options
songbird72
songbird72 Member Posts: 68
edited November 2015 in IDC (Invasive Ductal Carcinoma)

Hello everyone. I'm a 42 year old (almost 43 year old) who was recently diagnosed with IDC in my right breast. It is hormone positive and her2neu negative, grade 1. MRI showed no other spots in either breast or suspicious lymph nodes, although they will do the frozen of the sentinels during surgery. Because I'm so young and because my dad and two uncles (he has no sisters) had prostate cancer, we did the genetic test and it should be back in five to ten days. If it's positive, I most likely will have a BMX. If it negative, I have a decision to make.

My surgeon said I could have a UMX with no radiation or lumpectomy with radiation. Here is my dilemma. The closest clinic that does breast radiation is 90 miles away, one way. So if I chose to go the lumpectomy with rads route it would be two month of basically taking up my whole day, five days a week. I have a 12 year old and a 14, plus a part time job. This is an extremely hard decision, because frankly I don't want to lose my breast but I the option of possibly being "done" after the mastectomy is very appealing (and yes I'm aware that I might still have to have treatment depending on the sentinel nodes and the results of my Oncotype DX--although our local hospital does do chemo.) I will also do hormone therapy after surgery no matter what the choice is.

Any words of advice? My husband says he will support whatever decision I make and can help me talk through it but can't make the decision for me. I like to have all the information before I make a decision and this is one time that I can't. I never realized cancer was like that--you get little pieces of the puzzle at a time and you have to make decisions based on what little information you currectly have.

Thank you.


· Share on FacebookShare on Twitter

Comments

  • etnasgrl
    etnasgrl Member Posts: 650
    edited November 2015

    Hi songbird!
    We have very similar stats....I am 41, (was just diagnosed on 11/05/15), have IDC in my right breast, hormone positive and HER2 negative, grade 1.
    I saw my surgical oncologist last Monday and also did genetic testing since my mother was diagnosed with breast cancer at 42.
    Today, I see the plastic surgeon, tomorrow I have a breast MRI, and Wednesday, it's back to the surgical oncologist to discuss results of the MRI as well as the genetic testing results, if they are back.

    It's been HORRIBLE trying to make the decision between lumpectomy or mastectomy. I've done SO much research....or at least as much as I can.....but then I start to get overwhelmed/scared when reading too much. (You need to be careful where you get your info from. This site is excellent, but not all websites are!)

    I'm sure there will be ladies responding here with a lot more knowledge than I have and they will help you. Take the time to read through the lumpectomy vs mastectomy threads....SO much info is available there!
    Just wanted to let you know that you are NOT alone!
    ((((Hugs)))) and prayers!!

    · Share on FacebookShare on Twitter
  • songbird72
    songbird72 Member Posts: 68
    edited November 2015

    etnasgirl--I read through the mastectomy vs. lumpectomy and they left me more up-in-the-air than ever! I think I would be learning towards the lumpectomy with rads if my drive wasn't so far! Good luck with your decision and prayers for a speedy recovery!

    · Share on FacebookShare on Twitter
  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited November 2015

    Hi Songbird!

    I'm so sorry you're having to deal with this.

    There are threads that will help you work your way through the various considerations as you make your decision about what to do. I'd recommend this one: "BMX vs. lumpectomy--please help me understand" which includes very thoughtful discussions of why one might choose any of BMX, MX or lumpectomy over another. And lists of things you might want to consider as you make the decision that's right for you. I'd particularly commend the posts from Beesie to your attention.

    You, unfortunately, also have logistic considerations. I don't know if you have talked with your radiology oncologist about whether some shorter versions of radiation (like internal radiation or intraoperative radiation) might be available and appropriate for you.

    With intraoperative radiation, all radiation is delivered during your surgery. No additional driving/trips required. But IORT is currently in trials and is very limited in where it is available. If you're interested in this, you might need to travel to a breast center that is doing IORT for this therapy. You would need to arrange for surgical follow-up, if needed, locally. But you'd be having surgery with a highly-experienced breast surgeon.

    With internal radiation, you would have a much shorter course of radiation. Twice a day for five days, typically. That's five business days, and you might need an additional day for set-up, but it's definitely a lot less driving!

    I'd like to think that there are ways you can avoid a mastectomy if that isn't what you really want. Please take a look at Beesie's lists of considerations and decide what you'd want (absent the logistic considerations--children/driving/job) and then see if any of the shorter forms of radiation could work for you.

    Please let us know how you're doing,

    LisaAlissa

    · Share on FacebookShare on Twitter
  • songbird72
    songbird72 Member Posts: 68
    edited November 2015

    Hi guys. After much consideration, I have decided to have the UMX. I am hoping there is no lymph node involvement which would mean no radiation (MRI and ultrasound have shown no indication). Possible chemo pending the results of the oncotype but I can do that locally. I was about to lose my mind trying to decide but my husband told me to write down several times a day what I would do if I had to decide that minute and every time I came back to UMX. Now if I can just get the results of the genetic test back. Thanks for the support and comments.

    · Share on FacebookShare on Twitter
  • marijen
    marijen Member Posts: 3,731
    edited November 2015

    Keep us updated songbird

    · Share on FacebookShare on Twitter
  • Kicks
    Kicks Member Posts: 4,131
    edited November 2015

    It does not take a whole day to do daily rads. A 90 mile drive each way would only add about 3 yrs to the rad time while is less than 30 minutes.

    · Share on FacebookShare on Twitter

Categories