What would you do differently? - Page 3

hutchibk · 02-21-2009, 12:51 AM

What I would do differently is to have learned a little bit more about my dx in the beginning, but I was so intimidated for the first 6 months. I thought I learned all I needed to know, but in retrospect I was so naive. I would have fought harder to find a way to get into the Herceptin phase 3 trial (I wasn't accepted outright because we saw something on my liver in scans that turned out to only be a hemangioma).

I am thrilled, though, that I did not get radiation at the outset or at all to the breast area, and would not change that decision for anything. I did do my research about that early on and am very happy with that decision.

karen z · 02-23-2009, 08:23 PM

What I would have done differently:
(1) Exercised more and consistently through all of it. I have also put on weight that I am finding tough to get off (but am trying).
(2) Would not have bought an expensive human hair wig (I am too embarrassed to say what I spent but it was more than Debra did I am sad to say).
Karen

jones7676 · 02-23-2009, 09:24 PM

I do have to say that this site and the people who are guests here has served as one of the best resources of information and help for me since I became a part of it and I wish that I had it right from the start.

Finally - always try to think positive!

I am glad that initially I chose to get a second opinion before I even started getting treated.

I also think it is important to keep your own set of records about any thing that changes. I have had many challenges trying to get information/scans etc put together as needed.

I wish I would have utilized a person/team who specialized in exactly the type of cancer for every change in my condition. I have been through 4 oncologists in a little over 5 years and I believe I should always travel the long distance (or even further if necessary) I need to any time there is any change and get another opinion about options.

harrie · 02-23-2009, 11:58 PM

Since I didn't find out I was BRCA2 positive until just before this past IDCIS, if I had to do anything differently, I would have been genetically tested the first time I had DCIS in my early 40s.

I wish I had found out about this site at the time I first found out I was HER2+. It would have given me much needed information and support. I didn't find out until after I started chemo.

What I would not have done any differently is this:
Exercise. I exercised a lot before my CA, during chemo I did what I could, and after I continued on a good program. I did not gain any additional wt by the end of my treatments.
Wig: I absolutely LOVED my real hair wig. I got it for a good price (I think around $600) and it look identical to my real hair. It was comfortable and NOT ONE person knew it was a wig.
CHEMO: TCH, I am glad I did it! Peace of mind for me. I tolerated it very well and feel 100% recovered.

HarrieCanarie

JustwannaBE · 02-24-2009, 06:10 PM

I would have made the drs do blood work prior to any surgeries, i.e tumor markers, her2 neu serum. I would have had the drs do pet scans before any surgeries, to see if there were any other tumors in me prior to my lumpectomy. I would make sure each and every single pathology test available had been done on all of my tumors and 2nd opinioned if they did not match. I have learned and I hope this helps anyone new to this site. Should of, could of, would of...I am a lot smarter now, in fact, too smart, as now I am obsessed with the cancer inside of me and wish I could turn it off. Go with your gut always, it won't let you down and then you can never say, I wish I would have.... also, this site has and does help me alot.