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ORknitter
ORknitter Member Posts: 119
edited October 2015 in DCIS (Ductal Carcinoma In Situ)

Hi, I'm hoping for some great input from those more experienced than me. Long story short, I was diagnosed in April with DCIS, great margins, no lymph nodes taken (surgeon said she would rather do a second surgery if necessary), lumpectomy in May, completed rads in August, on exesmestane since August 28. I am one of the "lucky" ones with few side effects from any of this except for an infection which delayed starting rads.

Also, my sister was diagnosed at 43 and lost her battle after 5 years (that's a story for another time). I was 61 at diagnosis.

I have been recommended for genetic testing, which I am glad to do since we have 3 daughters. But I don't want to go into this blind so what are questions I should be asking? My appointment is on Monday so I'm feeling the pressure now.

Thanks.

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited October 2015

    Hi ORknitter... first and foremost I am so sorry you have to deal with this at all ... that said I am happy you are doing a good deal of research... So I also has DCIS Grade 2/3 with a family history of a FATHER that died from breast cancer... that last piece left everyone with a feeling of "what do we do" but I took my time and first I had a second opinion on the pathology slides... I had my bs send them to a breast cancer specialty hospital for a second review and they decided that it was actually Grade 2 - my own pathologist had decided on Grade 3... so even though there was a difference I was sure I was dealing with DCIS.  Then I did have the GENETIC tests and this was 8 years ago so they only knew to text for BRCA 1+ 2 - although they came back negative the genetic counselor did a work up on my entire family and decided that there was probably/possible a component of genetics that had not been identified so she recommended the bi-lateral AND she also recommended that I remove my ovaries and uterus!  This was just too much for me...  Genetics IMO are so knew they don't really know how to use the information that they obtain from the exercise,  I had decided, because of the BRCA negatives that I would do a remove the cluster of cells and do a watch and wait... all the rage today I imagine but not considered a smart thing at the time!  I was bombarded by the breast surgeon, my own family doc and my gyn with so much information that I was overloaded... I decided that since the doc's didn't really have a good path for me that I would, probably out of the pressure I felt, to do a bi-lateral.  I have questioned that decision ever since..  Moral of my story... you are the best decision maker and not to mention the one with the most to lose!!!  Take you time, weight everything twice and then make the choice that best fits your situation!  Good luck this is hard stuff - especially with young kids!!!  Oh and I am cancer free to date...

    One more note - I don't think that DCIS individuals are the lucky ones... they are actually the one's who get the least help imo...  that doesn't mean I am not grateful for being alive... I just think that if I had don't nothing I might still be alive and cancer free 8 years later... Tough stuff!!!  YOu are in my thoughts and prayers.


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  • CAMommy
    CAMommy Member Posts: 437
    edited October 2015

    I was tested for BRCA 1/2 2 years before I got DCIS. I tested negative. But my mother has never been tested. From my understand a true negative is if she tested positive and I tested negative. In any event, regardless, I have a strong family history. I did not do more extensive cancer testing.

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  • ORknitter
    ORknitter Member Posts: 119
    edited October 2015

    Deirdre, thanks for your post. I did the blood test today. The next step is to see if insurance will cover it (she said I meet the criteria but ya never know). If all is fine I should have results in 3 weeks so will make another appointment to get those. She thinks that there is little possibility that I will have a positive result, but if BRCA1 is positive she will recommend that ovaries & tubes come out since it has a connection to ovarian cancer. I feel like she was very clear in explaining it to me, before she knew that I had MANY university courses (big science geek here).

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  • ORknitter
    ORknitter Member Posts: 119
    edited October 2015

    CAMom, That's interesting about the affect of your moms test. I wonder if the fact that my niece, sister's daughter, tested negative had any influence on the decision to test me.

    I doubt I would have done this if I didn't have 3 daughters.

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited October 2015

    Be sure you are tested for more than the BRCA 1&2. There are several other genes which can raise your risk of cancer. There is one that is a 5-6 gene panel, those genes which are more common like the BRCA genes (which accounts for about 25% of all BCs), TP53, CDH1, and PTEN. There is a 32 gene panel and other panels which look for genes that are implicated in lung, colon, pancreatic, and thyroid cancers, as well as breast cancer. Due to my terrible family cancer history (19 cancers in 1st & 2nd generations) I chose to get the 5-gene breast cancer panel (because it would get back in 2 weeks), and also the 32-gene panel because of the family history.

    When the first test came back clear we had a little celebration. Woo-hoo! Had my lumpectomy and moved on...until we got the second panel back. And looky here--I had not one, but TWO rare gene mutations which probably caused my IDC. PALB2, which is the Partner And Locator of BRCA2, and Chek2. My genetics counselor estimated my risk for BC at about 45%. Yowza! I also have increased lifetime risk for colon, pancreatic, and thyroid cancers, which all run in my family.

    So now my treatment has changed. I had my 2 lumpectomies (with complications) and I'm starting chemo tomorrow. After that, the oncologist strongly recommends a BMX and frankly, if I had known about the gene mutations BEFORE the lumpectomies, I probably would have had a BMX then.

    I have two adult children who are now at 50% risk, as are all 4 of my siblings. My mother is 81 and hasn't had a mammogram in over 15 years, says she'll get around to it eventually. I'm not going to push my mother to have genetic testing, but as a result of my positive genetic tests, my siblings and children may be able to get their insurance companies to pay for testing.

    Knowledge is power. Best of luck to you.

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