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Oct 26, 2016 12:19PM
Thank you all for the replies! Sorry I forgot to include my name, I'm Laura
Mods – Thank you for the well wishes and for linking the articles. They don't offer the Oncotype test here, that was one of my first questions. So I'm kinda feeling my way in the dark trying to determine what my risk of recurrence is through my own research. I have no real idea though and that's also frustrating.
Those articles reminded me of another question I have, it seems there are a lot of studies and research on DCIS with lumpectomy. I've had a mastectomy, so would the lumpectomy findings also apply to me in some way or do I stick to only research that involves DCIS with mastectomy? This is where I get confused.
TB90 – Thank you for checking around here to help! Our situations sound similar, I really appreciate you sharing your story. I'm agonizing over this too! I'm sorry to hear you had the same struggle. While I was waiting for my first appointment with the RO, I thoroughly looked into the benefits of radiation treatment. I found a lot of info that convinced me of the benefits, but then stumbled upon the possible big risk to my heart. It was going to be my first question to the RO, but she brought it up first as soon as we met. The RO team concluded I was in the biggest risk group for heart damage because of my young age (44 yrs) and that my unusual scar path (my mastectomy had to also remove the two scars from my diagnostic surgery, so much of the scar lands very low closer to the heart). The research study she discussed found that younger patients in my age range were more likely to develop heart problems 10 years after radiation treatment. She was very concerned and for me, it solidified in my mind that radiation would be too big of a risk for me. When hormone therapy was brought up by the breast surgeon as a possible other option, that's when I let the RO know I was following their recommendation and declining treatment. I had no idea at the time that I'd be declined for hormone therapy. The hospital will be upgrading their equipment for heart sparing treatment, but that won't be done for another year or so. My mastectomy was this past June, I don't even know if they'd consider starting radiation after so much time has passed? What does echo in my head is exactly what you wrote, that I need to make a decision I can live with. I have no idea what I can live with! Do I risk my heart? Do I risk recurrence? I've agonized over that for so long and discussed it over and over with my sister and husband. I thought hormone therapy was going to be what was right, what I could live with. But then it wasn't an option. It's all very hard.
LAstar – Thank you for the hugs! I know I'm complaining and painting a negative picture of the healthcare system here, but there is so much that has been wonderful. One of the best things is that when you are diagnosed with breast cancer, you automatically and immediately get an appointment time with the breast cancer therapist. My Dad died the week before my diagnostic surgery and I had never been under anesthesia before, I was scared out of my mind and a huge mess! The therapist got me in the day before my surgery and helped me through everything, then made sure I was ok the day after. I saw her regularly from April until recently. I'm currently looking for a new therapist to get help more regularly over a longer period of time. The other one was great, but it's more for the active patients at the hospital. I thought I was ok and didn't need to find a new one to continue, but I had a total breakdown a few nights ago, I didn't realize how much I was pushing down and pushing off my grief, worry, and pain. We have a six year old son and I just kinda always kicked into Mom mode, being strong and taking care of the day to day. Then days turned into months and I realized I never processed the grief of losing my Dad because I went right into being diagnosed and the mastectomy surgery and millions of appointments, etc. Plus everyone around me was shocked and utterly heartbroken for what I was going through. I spent a lot of time making everyone feel better, so they wouldn't feel so sad for me. If that makes sense? I don't know why I did that, it was just an automatic response to want to help them feel better and let them know I was just fine. I think I did that so much that I convinced myself I was fine. But now I know I'm not, so I need to start the grieving process and get over that part. It's hard when you're 44 years old and you've lost both your parents. Wow, sorry that was so long! I have a lot that's pouring out, I really appreciate being able to vent here.
I will grab my notes tomorrow and see where the margin was, I think it was the lower part of the breast. You don't get your full pathology report here, so I had to ask a million questions and take notes, draw diagrams, etc. I also don't have a 'team' like you have in the US. The breast surgeon is the main point of contact and you get other appointments only as they are needed. So I haven't met with an oncology doctor at all, just the surgeon and the RO. I didn't realize I would be declined an appointment to meet with the oncology doctor so I could ask questions and present my wishes for treatment. Overall I get the feeling most patients don't go against the grain, so the doctors aren't used to being questioned or having patients request a treatment they haven't recommended.
I also forgot to mention that I am having genetic testing done. I submitted my family history and bloodwork, the results take six months so I should hear in February or March.
Thanks again everyone for your help and support!!
6/2016, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/2 nodes, ER+