New LCIS Diagnosis

Options
newbie2020
newbie2020 Member Posts: 10
edited June 2020 in LCIS (Lobular Carcinoma In Situ)

Hi, I was just diagnosed with LCIS, Papilloma, and a radial scar and am 55 yrs old. I had posted earlier in High Risk forum but was also directed here.

Long story short, I was diagnosed by chance from a CT Scan for a possible kidney stone. Have been doing yearly mammos and it was not caught by them. First the CNB showed Papilloma, then excisional was upgraded to LCIS and radial scar. Just met with the surgeon for my followup, and she said what was a slightly over 20% lifetime risk with just the papilloma had increased to 48.4% with the addition of LCIS. Now I am referred to a oncologist for increased surveillance (6 month mammogram/mri) and most likely tamoxifen. I really do not want to go the tamoxifen route because of the side effects and the anxiety of not bringing my risk down as low as possible. I am leaning towards prophylactic bi lateral mastectomy, but am trying to keep an open mind and not make any rash decisions because I'm really and just starting out on this journey. I know I have time on my side which is really good in making these types of decisions. Any words of wisdom would be most appreciated in respect to anyone who is or has been in this situation. My surgeon kept stating you do not have cancer, which I understand, but now my risk is so much higher and I truly feel like a sitting duck. I just want to see my grandchildren grow up and I want to make the right decision in reducing my risk as much as possible now the I have been given the "heads up" in this busy breast of mine thanks to a totally unrelated CT scan. Any out there in the same situation? And what was your decision?

Thanks so much!

· Share on FacebookShare on Twitter

Comments

  • Each_day_2018
    Each_day_2018 Member Posts: 154
    edited June 2020

    So sorry you find yourself here! With lobular, it generally isn't as apparent in Mammograms, which is probably why it didn't show up there. My LCIS didn't show up until my mastectomy for IDC.

    My plan has always been to remove my non-cancerous breast. It wasn't an option during my first surgery but I planned to go back when I was ready for reconstruction and have it all done at once. As time went on, I was thinking maybe I don't need to go through with it. Then last week I had my first mammogram since I was diagnosed and I was a complete nervous wreck the whole week before, to the point I could barely continue my daily routine. For me, I will still push for the prophylactic mastectomy of the other side just for peace of mind. It's a very personal decision, and you have to do what's right for you. Best of wishes!

    · Share on FacebookShare on Twitter
  • newbie2020
    newbie2020 Member Posts: 10
    edited June 2020

    Thank you each_day_18 for your reply. It is a very hard decision indeed. My gut and my gyno's opinion is to have bilateral mastectomy. I have family history, plus a lot of stuff just going on in the left breast. I would not be surprised if there was more that was not caught. I still need to see my oncologist in a few weeks so I will discuss my options/opinions with him. Hopefully he will be on the same page, because really the hardest part for me is not having a decision made. I have been trying to research everything about LCIS, radial scars, papilloma's and even though benign, they all point to a greater risk. And I'm 55. I want my risk down as much as possible and not have to worry with MRI/Mammo every six months. My anxiety would be the same as yours. Also my gyno wants me to have a hysterectomy, which I agree is now needed. I'm so glad I have joined this forum for the the wealth of knowledge and support! Best wishes to you too :)

    · Share on FacebookShare on Twitter
  • Lea7777
    Lea7777 Member Posts: 274
    edited June 2020

    Sorry newbie2020 for your diagnosis. You've got your gut, your gyno, and the oncologist weighing in on your situation. That's a good combo of opinions. The breast surgeon will be yet another opinion to help you with your decision. Before deciding on prophylactic bilateral mastectomy, you may wish to get a second opinion from a different breast surgeon or oncologist. I have gotten second opinions for all of my abnormal mammograms. The agreement gave me additional peace of mind. You are right that you have time on your side.

    Depending on the instrument used to come up with your 48% lifetime breast cancer risk, that may or may not be accurate. The IBIS Trer-Cuzicyk Model Breast Cancer Risk Evaluation Tool, which is the standard for women with atypia, consistently overstates risk. You may want to inquire more about this model from the professional who administered it. Every single medical expert I have asked (and I've consulted at least 6) has assured me that my Tyrer-Cuzick risk factor, which is way higher than your 48%, is overstated. On the plus side, a high lifetime risk--per this tool--may get your MRIs covered by insurance. There are some threads about the IBIS Tyrer-Cuzick risk tool in this LCIS section.

    If you are 55, I am assuming you are post-menopausal, so you can take 4 other drugs besides Tamoxifen to lower your risk. Plus there is now the low dose Tamoxifen. I'd suggest trying those drugs. Some people have side effects, some don't. Just because some of those drugs may cause you discomfort, you may find one that is ok. That was my experience. Even if you eventually opt for a PBMX, the drugs will give you some protection in the meantime as you make up your mind.

    You may want to do genetic counseling for more insight into your situation. After menopause, family history plays a reduced role in breast cancer.

    I just posted a study in this LCIS section that shows the 10-year and 20-year breast cancer survival outcomes for women diagnosed with LCIS are 98.9% and 96.3%, respectively. In reverse that's 1.1% of women diagnosed with LCIS die from breast cancer within 10 years and 3.7% die from breast cancer within 20 years. That's all the time the study covered, so no 25 or 30 year data. Those #s include women who take the risk-reducing drugs and those who don't; women who limit alcohol and those who don't; women who maintain a healthy weight and those who don't; women who exercise and those who don't.

    Good luck.

    · Share on FacebookShare on Twitter

Categories