What would you do differently? - Page 3

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.

DianneS · 02-28-2009, 10:07 PM

Awk, now I can't see your name (Pink Lady?) but your dx and mine are almost the same.

I am happy to know that you are NED and hope to get to that point. I am just finishing the Taxotere Carboplatin Herceptin (Hercep until NOvember) and am scared that I have done enough to stop this beast.

Hope to hear from you. I don't post much as I have fibromyalgia and get horrible migraines from sitting. As well, am recovering from the onslaught of chemo since November.

Diannes

03-03-2009, 06:06 AM

Hi Ladies,

Been lurking since diagnosed with IDC on 19/1/09. Had lumpectomy on 10/2/09 with third doctor 9 after not happy with the first two. ER (+), PR (-) and ERB ++, 167 (20%)

Will start on TCH this Thursday on 5/3/09 at govt hospital since the drugs are given at cost. Will still cost about 250K.

Got four synthetic wigs at discounts. Look quite nice to me. Real hair wig costs HK 5 K or US$600!

Like many, I am fearful on embarking chemo since my immune system will be destroyed/severely compromised and my heart will be at stake.

Other than the stupid BC, all my other organs are in tip top condition plus my blood too. Am wondering whether it is silly to compromise/gamble/exchange all the good parts of my body just to beat BC. My and teh family's quality of life will change forever.

hey, dear sisters, please provide some survival stories to balance up the grim ones! I am not in denial, just want to hear two sides of the coin, if there is any............

And, BTW, what is a port? Is it the same thingy they stick to your hand during surgery to facilitate transfusions/injections? I will ask teh doctor to provide one tommorow prior to the start of the chemo. I will drink lots of water, then coffee during taxotere transfusion.

Thanks and hugs to everyone!!

Jackie07 · 03-03-2009, 08:22 AM

Welcome ipohgirl,

Can you repost it on the New Comer's thread? It won't get buried as easily as in the other forums. Also, if you register, you will have all the replies sent to your e-mail address. You also will be able to tract your subscribed threads on the board. There's also a 'private message' fuction available once you are registered.

Actually, I am going to repost this in the New Comer's section. Hope you will find it.

There are several threads on long term survivors. Click on the 'Search' button on the Gold bar on top of the Board, then type in 'long term survivors'. Hope you will find the stories encouraging.

Jackie07 · 03-03-2009, 08:53 AM

Please go to New Comer's thread to welcome ipohgirl in HK.

Thank you.