Just feeling down today...

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Cmo65
Cmo65 Member Posts: 96
edited April 2015 in Stage I Breast Cancer

On March 9, 2015, I was diagnosed with Stage 1 IDC -- .8 mm in size. On March 16th, I had a lumpectomy with SNB and pathology came back Stage 1, lymph nodes clear.  Then I got my ONCODX score of 18 which carries an 11% recurrence rate.  I was so bummed that it was in the indeterminate range, but my OC said chemo was not recommended as it brought only a 4% benefit.  Over the weekend I came to terms with this and was still waiting for my BRCA results.  Today I was told the BRCA was negative, but I had an indeterminate PTEN gene.  I have been reading more about it, but apparently there isn't a lot known about it.  I feel deflated.  I felt like, "Okay, it's Stage 1 and small and all cut out and lymph nodes are clear, so I'll go through radiation and hormones and take care of myself." 

But now this PTEN business and I just feel down.  I read in another thread about a woman who also had a PTEN of "unknown significance" and she wound up getting ovarian cancer, which is interesting because I was told today that PTEN was not linked to ovarian cancer but it WAS linked to uterine cancer.

At this point, I feel like cutting off both boobs and reconstructing and cutting out all my female junk. I just don't know. And, I don't know what to do either.

Thanks for listening.

Christine

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  • Meadow
    Meadow Member Posts: 2,007
    edited April 2015

    Cmo I am so sorry you feel down. Getting good news mixed with bad gives us mixed feelings! But perk up, good things abound. I am not much with statistics, I have IBC, and no one wants to read stats with THAT, so I dont really pay attention to them particularly... if it is going to bum you out then dont. Stage one with no nodes, thats awesome! And being one of the "lucky" ones who did cut off my boobs and all my junk, I can tell you that the good life is still mine. And if that is the way you go too, the good life is still yours to be had. I am glad you are here with us, and I hope some one else can respond to cheer you up. Hang in there and hugs to you!

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015

    Hey, Christine - it's o.k. to feel down in the dumps and thrown off-kilter. You'd be feeling some of that anyway with such a recent diagnosis, plus the recovery from surgery and the indeterminate Oncotype score. (Although it's so helpful that your MO was clear on her/his recommendation.) You add in yet more new information with the PTEN - and the fact that there's a lot that's NOT understood about it, and it's completely understandable that you'd feel like "cutting off both boobs and reconstructing and cutting out all my female junk."

    I recently learned that I have some genetic 'challenges' too, and since I haven't been through surgery yet I feel as though I'm back to square one in terms of deciding whether to go ahead with the lx. or bilateral mx. My mind changes about 18 times a day!

    I found it very helpful to have a good talk with my surgeon (since she's the one I have the best rapport with). Then I sat down and made a list of pros and cons for both approaches. Just seeing it in black and white made it easier to sort out. (I still go back and forth, though!)

    I think at this point you probably need to heal, have some down time, and let things percolate a bit. It is a LOT to sort out. And it is saddening to think that you have this genetic change that you can't control. Most people around you aren't going to understand how you feel and may not even see the significance, which makes it harder.

    The good news is that knowing you have this mutation, you WILL be screened much more closely. Anything else that does come up is likely to be caught much earlier and your MDs will have to take it more seriously. So your outlook is, in a way, probably better than if you didn't know about the mutation. Plus it gives you some idea of what contributed to your breast cancer. I found that rather comforting, once I got my mind around it.

    You don't have to feel the same way but maybe something in all this verbiage will help. I hope it helps to know that you're not alone. Hang in there. Go have some chocolate!

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  • Cmo65
    Cmo65 Member Posts: 96
    edited April 2015

    Thank you for the kindness, ladies.  Much appreciated.

    Christine

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  • movingsoccermom
    movingsoccermom Member Posts: 225
    edited April 2015

    I can relate to genetic challeges. I am the oldest of 5 siblings; 4 of us have been diagnosed with cancer. 6/7 of my Aunts have been diagnosed with either breast/ovarian/uterine cancer. My Dad died of colon cancer. You see my diagnosis below. I am grateful to be stage 1, but certainly have had my down days since the initial phone call. Hang in there, read as much as you can, and make the best choices for you.

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