More impossible decisions ugh!!!

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BlueHeron
BlueHeron Member Posts: 154
edited January 2016 in Radiation Therapy - Before, During, and After

I am almost 2 weeks post mastectomy for IDC with associated DCIS both within he tumor and outside of it, around it.

So I met with the radiation oncologist and I have more impossible decisions to make. The superior border was close post mastectomy, less than 1 mm. It was Dcis at the mArgin, not invasive disease. There is very little literature to guide us in this particular scenario. What research there is suggests that with high grade Dcis the close margin is a risk but less so low grade. However my Dcis is low grade but has obviously shown itself able to go invasive so it's not clear this is relevant. My tumor characteristics are really good (all cribriform and tubular, grade one). So WTF do I do? Radiation has its own risks. But recurrence would suck. The rad onc said its a really hard call. IM SO FREAKING TIRED of hard calls! I am not equipped to make these sorts of decisions! If I had wanted to complete a residency in breast cancer I would have gone to freaking MEDICAL SCHOOL. Ugh

Btw, I'm not planning recon so that is not a factor.

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  • Ridley
    Ridley Member Posts: 634
    edited January 2016

    Blue heron - sometimes I think docs are trying to give patients more input into the decision re care, which is a good thing, but if your rad onc hasn't given you a clear recommendation, don't be afraid to push her/him for one. I had the same issue on a different topic - radiation treatment wasn't clear for my scenario, so radiation or mast was left up to me. I nicely told my team that they had over 60 years of combined experience compared to my none, so I wanted a clinical recommendation from them. They talked and I got one.

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  • BlueHeron
    BlueHeron Member Posts: 154
    edited January 2016

    Thanks Ridley that's helpful. If I simply can't find my way to clarity I think I will do that.

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  • muska
    muska Member Posts: 1,195
    edited January 2016


    You can also get a second opinion from another RO. Sometimes, I get the discussion moving into a more productive direction by asking what would you do or recommend your wife do if you/your wife were in my shoes and why.

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  • etnasgrl
    etnasgrl Member Posts: 650
    edited January 2016

    I totally understand how you feel! This "journey" has been nothing but hard decisions and I feel totally inadequate to make the right ones!
    What has worked for me is getting as much info as I can.....from my doctor, a second opinion, (if needed), Dr. Susan Love's Breast Book, this website, etc.....and then make a decision. My oncologist told me when I was debating on doing chemo, that once my decision was made, DON'T LOOK BACK.
    Accept the decision as the best one for me, move forward, and have NO regrets.

    Breast cancer is such a crap shoot, which is scary. We can do all the right things and still sometimes it comes back. And sometimes it doesn't. There really is no way of knowing.
    So, my advice would be to do as much research as possible, get a second opinion if you feel it would help you, and then make your decision.

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  • labelle
    labelle Member Posts: 721
    edited January 2016

    If you do decide to do RADS ask about doing them in the prone position. Not all radiation centers offer this-you may have to shop around. For me the biggest worry with radiation to my left side was possible heart damage. This risk can be minimized by doing RADS in the prone position. I was glad I had this option.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2016

    I found it very helpful to get a 2nd opinion from another RO. He, my BS and my 1st opinion RO all had pretty much the same end in mind but were able to tweak the approach to address some of my concerns and the challenges of my situation. Their combined input helped me accept a difficult situation. I paid out of pocked for that and it was well worth it.

    I've also found that simply continuing to ask, ask, and ask has been fruitful - sometimes once MDs understand that you want information to help make/accept decisions rather than some text book sound bite, they can really open up and give you the goods.

    As to prone versus face up - it's not, unfortunately, suitable for all body types. However, not all hearts actually fall into the field of radiation - the sim will show whether you're affected or not.

    Best wishes working through your decisions.

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  • BlueHeron
    BlueHeron Member Posts: 154
    edited January 2016

    thanks, everyone. It does seem that so many of us fall into "gray areas" where the medical decision making is grueling. I have a close friend who is a radiologist in BC and she said that ultimately, we learn to lean in to the uncertainty, knowing that there are simply no guarantees and things are not clear, and we just do the best we can do and trust that. But in the meantime, while in the middle of the impossible decisions, it's just so hard.

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