3 things I wish I knew before I did anything!

I just wanted to put these 3 things out there to those newly diagnosed and to know about before you do anything. Please don't be overwhelmed. I wish I had this info before I did anything. Any and all comments are encouraged!! Anyone have their own story to add?

I trusted the team I met at the nearby hospital, and I wound up a disaster. I did not know anything then!! At the risk of looking totally stupid, even with a high-level, high-paying job that I can no longer go back to because I have not recovered, my intuition was correct, and I neglected it out of fear. Please don't do what I did!!

- Stage One with no lymph node involvement and under 2cms can still mean that you could need chemo. It depends also on the grade. (Mine was grade 3, IDC with DCIS). See an oncologist before any surgery or treatment. Ask about and research the oncotype score. Note: I did my bilateral mastectomy and reconstruction before seeing an oncologist. I was told I would not need chemo by the breast surgeon. All I was told was that I would need tamoxifen for 10 years. No one said to meet with the oncologist!! She should not have told me that I did not need chemo. I would have chosen a different reconstruction had I known what I was in store for. Please get your entire treatment laid out. And try to get a second opinion from at least 2 breast surgeons, 2 oncologists, and 2 plastic surgeons. Possibly even test results, too??

- It seems like Cold Caps could save some (40%?) of your hair during chemo - even with ACT or TAC chemo -- a super harsh chemo. An oncologist or facility might not mention this topic at all if they do not permit it onsite at the center. Look into the costs, pros and cons, and topic on this discussion site. Note: I was not told about cold caps before I set out on the chemo journey because the facility did not offer it! I only found out about cold caps after I already did all of the chemo from reading this site. I would have paid anything to try to keep my hair. It came back curly, and I hate it! It was long and straight!

- Regarding reconstruction - I wish I did everything differently on this one..... I should not have googled doctors. I found one with an AD marker on Google. I saw that the doctor was at my hospital, so I chose him. Duh, Google knows where you are! And you should really not pick a doctor who paid for an ad to be at the top! (Ps. It's better to go to a big city place even if you have to travel!!) Turns out his co - doctor was only board certified for three months and had a DUI!!! He did not go to the greatest school. The pictures he showed me might not have been his? I asked for more pictures, and he said he could not find any?, I opted for flap because I was scarred of implants for no real reason but that they would be hard. Implants (that's a whole other topic) are what 80% do -- I should have done what the celebrities do -- the minimally invasive way!! if you do want a flap, go to a place that does thousands of these. I neglected to ask him how many of the flap surgeries he did because I did not know to. If I did the math myself, it could not have been very many. Perhaps he did it for the experience and money. Don't be a guinea pig like I was!! I spoke with one of the patients. Just one. Not enough! Who knows if she was really a patient or someone with a different body type, age, activity level -- but I turned out a disaster. I should have asked to see her pictures! Lol!!! I should have asked at work where the 1% of wealth go as all my procedures were covered. I should have asked another ps what s/he thought of what I was about to commit to. Flap surgery is a whole new topic, but for me, it was not worth it. I have scars someplace where there was nothing wrong, and numb over 1/2 of my body from it, I'm missing chunks of my body, and lost a flap, so I have an implant now in one (and more surgery), which is not so bad in my experience. Also, I had to get a breast reduction to qualify for this flap (PAP -- as in my legs were basically ripped off and sewn back on, including painful scars in the crotch), and it's like I am almost flat anyway. Not worth it!! Please ask for an informed consent page to see what you are really at risk for. My ps did not inform me of the risks that would have put me off the surgery!! The 2 surgeons made over $400k on me!!!!

I think that's it...