Join Us

We are 224,935 members in 83 forums discussing 163,793 topics.

Help with Abbreviations

Topic: Postive Chek2 w/4 begnin masses age 29

Forum: Genetic Testing —

ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, NBN, NF1, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53, and mismatch repair genes (MLH1, MSH2, MSH6, PMS2, EPCAM)

Posted on: Feb 7, 2017 03:38PM - edited Feb 7, 2017 03:42PM by m1ghtym0use

m1ghtym0use wrote:


I found out I was positive for the Chek2 mutation a week after I got married over the summer in 2016. After the results came back, I had a bilateral breast mri revealing 4 masses. Next came biopsies and the masses, thankfully, came back as benign.

I'm struggling with whether or not to go ahead and have the preventative surgery.

I want to have children and breast feed them if possible. I lost my parents in my early twenties, so it's just me and my husband and our dog right now. I work full time in the tech industry and my husband is a student.

My husband is worried, because of my family history (grandmother died at 45 from breast cancer and my aunt at 42) and I already have masses, that even if we have kids before I'm 35, I may not be around to see them graduate high school. He wants me to have the preventative surgery as soon as possible.

I'd have to take time off of work, put trying to have kids on hold, and all our savings - for eventually buying a house - would go to the surgery. I don't know what the right choice is.

I talk about everything with my husband, and usually it's a lively back and forth and we can bring different perspectives to the table and wade through the mitigating factors and come to an solution and action plan together, but not with this. I'm worried about sacrificing what feels like everything we have for this surgery instead of building the foundations of a family, home, and careers. I already lost everything when my parents died and I am struggling with the prospect of being back at that point again, just missing caustic body parts this time.

How can I make a choice that is best for me and my family - present and future? I know there aren't any magic answers, but any suggestions on how to make this decision?

Log in to post a reply

Page 1 of 1 (4 results)

Posts 1 - 4 (4 total)

Log in to post a reply

Feb 7, 2017 04:25PM melmcbee wrote:

Im sorry that you are going thru this. I can tell you that I wish I had a warning before I was diagnosed. If I could go back just ten years I would change several things. However choosing to cut your breast off is a hard decision. Also you can build your home and life first but you may not be in the picture if you sacrifice your health. Prayers sent to you that you will get through this.

Melanie Dx 6/24/2012, ILC, 2cm, Stage IIIA, Grade 2, 8/15 nodes, ER+/PR+, HER2- Surgery 7/9/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Surgery 8/9/2012 Lymph node removal: Right, Underarm/Axillary Chemotherapy 8/23/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/9/2013 Breast, Lymph nodes Surgery 5/30/2013 Reconstruction (left); Reconstruction (right) Surgery 12/4/2013 Reconstruction (right) Dx 3/29/2017, ILC, Stage IV, metastasized to bone, ER+/PR- Dx 11/19/2019, ILC, Stage IV, metastasized to other, ER-/PR+, HER2- (IHC) Chemotherapy 8/19/2020 Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy Faslodex (fulvestrant) Chemotherapy Xeloda (capecitabine) Immunotherapy Tecentriq (atezolizumab)
Log in to post a reply

Feb 8, 2017 09:42AM cive wrote:

The only thing that I can suggest to you is that you flip a coin.  If, after you flip it you are leaning to not following it, maybe that's the choice in your heart of hearts.

That said, if you don't have a bi-lateral MX now, it is always there in the future and you can be rigorous about breast exams meanwhile.  It would be nice if we knew how life would go but we don't.

Log in to post a reply

Mar 2, 2017 11:04PM ktfelder wrote:

Besides the Chek2 mutation, the other factor that affects when you get breast cancer is the age at which your relatives got it. I assume your mother did not die of breast cancer. Since your aunt and grandmother were diagnosed/died in their early 40s, you are likely to be ok until you are at least in your mid-30s. As long as you have mammograms and MRIs (each once a year), you can probably put off the PBX for about 5 years. If you do get diagnosed with breast cancer, immediately have the PBX (no radiation). Also, be aware that there are other cancers you need to watch out for. I am 60 and have Chek2. I got thyroid cancer in my 30s, breast cancer in my late 50s and now have Serrated Polyposis Syndrome which required annual colonoscopies. I didn't find out I had Chek2 until after I had my lumpectomy and worse, radiation. I'm planning a PBX this year.

If your insurance covers the PBX, they will cover the reconstruction. Schedule your surgery for the beginning of a year so everything is within that year. Therefore, your costs should not exceed your maximum annual out-of-pocket expense. Currently, insurance companies cannot discriminate against you due to genetics. That could change depending upon the political climate. That is the one reason to act sooner.

Good luck. No matter what you decide, it will be the right decision for you.

Oncotype: 16; CHEK2 Dx 3/24/2014, IDC, Left, 1cm, Stage IIA, Grade 2, 2/7 nodes, ER+/PR+, HER2- Surgery 4/22/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 6/1/2014 Breast, Lymph nodes Hormonal Therapy 7/29/2014 Arimidex (anastrozole), Aromasin (exemestane)
Log in to post a reply

Mar 3, 2017 08:56AM - edited Mar 3, 2017 08:57AM by farmerlucy

I did the high risk screening for twenty years. I do not have a known mutation. My mom had BC at 27, her sister at 42. Both passed with in a few years of dx. I asked about the PBM about ten years before I had one. Doc said it was unnecessary. Honestly I was going broke doing the high risk screening. Unfortunately my surgery came too late and I already had an previously unseen invasive cancer despite my blue ribbon screening.

The year I had the mx, I did it early in the year and all my surgery was under the same insurance year for the out of pocket max. Financially it was about as onerous as the biopsies I'd had in the past couple of years that were under my deductible/out of pocket max threshold.

I'm sorry you have to face this. In the long run it is better to know than to not know. That doesn't mean you shouldn't grieve for the life you'd envisioned without this monkey on your back.

I did the PBM to outrun the beast. Life had something different in mind. If you were my daughter (and I do have a 27 yr old) and she had this chance, I know clearly what I'd be urging her to do.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/20/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/10/2012 Lymph node removal: Sentinel Surgery 7/21/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/9/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/13/2015 Prophylactic ovary removal

Page 1 of 1 (4 results)