Log in to post a reply
Aug 10, 2007 08:28PM
My diagnosis story is essentially the same as yours, went to the doc for back pain and found out I had stage IV mets to spine. I know how frightened you are, and how confused you still feel after 3 months. To be honest, it takes a good year to really get your feet back underneath you in any way, so just hang on tight and keep coming to the board for support. Also, seeking out a therapist with a background in working with cancer patients is a great idea. Ask at your treatment center if they know of anyone.
It's true that it is very hard to find support if you have mets, as many support groups lump us in with everything from "worried about it" to stage III. I struggled for a long time to find a mets group to talk to and only recently found this one. It makes a world of difference. I know you are frightened about your upcoming tests. I can say that believe it or not, you get better at dealing with them as time goes on. This test may tell you that your treatment is working. I will be praying for that. Also, remember that if whatever treatment you are on is not working, there are many, many others out there, so don't flip out if that happens. I was first put on tamoxifen but knew even before my first 3 month PET that it wasn't working due to the increased pain in my back, despite the radiation. I went right to chemo because the cancer was enveloping my spine too quickly. I was put on taxol/carboplatin. I decided to get myself into Sloan Kettering for a second opinion and they suggested Taxol/Avastin, which was the newest thing out there for advanced stage bc and was thought to be especially effective for women who had not had substantial chemo yet. I decided to go with it and after about eight months of that with Zometa I found myself being told i had no active cancer. I've been on Femara ever since (13 months) and remain in remission. Sooo...don't forget that everyone's cancer is different and the trick is for you and your doctor to find the right treatment for you to get your cancer stable. Tamoxifen is the most common first step. There ae other hormone tx out there too that can be tried before chemo. I only jumped to chemo because my spinal integrity was in jeopardy.
The first treatment you try may work, or it may not. Yes you are approaching a fork in the road but it isn't one that will determine with finality anything, other than whether or not your current treatment is right for you. Try not to give the cancer any more power than it really has, OK? Chemo is not so scary as it is cracked up to be, especially for us stage IVs who are usually given less toxic doses that some of the earlier stagers, to preserve our quality of life. If you have to go there at some point, let us help demystify it for you a bit, OK? Don't listen to those people out there with those "my aunt had cancer and such and such horrible thing happened to her" and so on. Get it from the horses mouths (sorry ladies, no offense intended).
Of course this is still overwhelming to you! Don't judge yourself on that. It will be, for a while. Later, you will have periods between those overwhelming days and things won't be so hard, all the time.
You've come to the right place for support and information. There's so much to learn, not only about cancer but about how to live, get money if you can't work, see your world in a different way and so on. You'll find all the answers, or leads to answers, through here. I know it's hard to believe right now but you will also receive many gifts through the journey you are embarking on, and I don't mean a brand new washer and dryer. There are so many blessings that come along with this diagnosis.
You're in good shape. I didn't find this website for at least 6 months. It took me 2 years to realize they had discussion boards and chat rooms!
Hang in there and feel free to email me if you like for any questions. I have a lot of experience with bone mets to the spine, pain control and so on. You are not alone in this. We all look out for eachother.
Keep us posted on your test results!
6/30/2005, IDC, 5cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-