Beating Metastic Cancer when Given no Hope

   When I was first told I was Stage lV in 1998, with mets to my sternum, lung and a spot in my liver, I didn't even know what Stage lV meant so I went to the library and read about it.   It was quite a blow when I discovered that there was no Stage V and that was when I called all my friends together and told them, Ok, this is it.   Up until that time I had thought I was over and done with cancer....had my mastectomy in 90 and had passed that "magic" 5 year mark.  In reading I thought I would be lucky to live 5 more years providing I was one of the 50% who made it that far......don't quote me on this, but I think that was what it said.

The onco I went to (left the old one since I had been having pain which she ignored so I do think that this had been going on for several years) chose to treat me hormonally.   I had amazing results with the Als and also was on pamidronate (sp) for many years before going to Zometa and now get Xgeva.  When the hormonal treatments stopped working for me I went on to chemo( something I said I would NEVER do, but when the time comes you find you look at it in a different light and I was not ready to give up) and have done many different chemos since then......most of them were not successful, but the one I am doing now, low dose Adriamycin, is working wonders.  My tumor markers are all the way down to 528.9.   This might sound high, but considering they were 7,668 in Dec., this is a huge drop.

Cancer is not curable as we all know, but it is treatable.....the key is finding the treatment that works for you.  What works for one, doesn't necessarily work for another, just as what is really rough for one, might not have many SEs at all for someone else.  My onco has always told me he does not have a crystal ball, but so far I have been beating the odds and consider myself to be very fortunate.   I am still able to work and live what I consider to be a "normal" life. I am able to travel and do things and am not in pain.   Oh, I have back problems and my legs look like a road map and I have lost my hair a bunch of times and currently have no toe nails, BUT I am alive and actually in Florida right now visiting a BCO buddy.  

I can no longer keep up with my yard work and don't have the stamina to do all that I used to do, but heck, I am 62 yrs old.  Sounds really old and I never ever thought I would want to be 62, but when I look back and recall how I thought I would never reach my 50th birthday, it sounds pretty good.

The point is we are not statistics and Stage lV does not have to be an automatic death sentence.  All we can do is try everything there is to try and pray and not give up hope.  

Congratulations on your success so far.  I am betting you will get a lot more than 3 - 5 years.  You did do the right thing in starting this thread......giving hope to others is what this site is all about. 

Colleen and Mary you are BOTH amazing inspirations! Thank you for sharing your stories and for surely inspiring SO many others here!

--Your Mods

Thank you Colleen and Marybe. Reading your stories and how you have both been able to continue living with mets is truly inspiring. Your message of determination and hope certainly gives the rest of us cause to believe that there is a light at the end of the tunnel, so to speak.

I was devastated when I learned that I was metastatic (a term I had never heard before) about a week after my initial dx. Of course all of the stats that I read were very discouraging as well as reading that any mets to an organ was even worse. But then I found bco and found great support, information, knowledge, encouragement and hope.

I am just over a yr from dx and am doing very well with tx - started out with 8 lesions on my liver, now only seeing 4 on the scans! My QOL is great and I am enjoying my life on a daily basis.

Colleen and Marybe,

Thank you both for your inspirational stories. Despite an initial IIB staging, I was probably always stageIV. My last two scans have been great and after rads, my met is necrotic. I hope to keep managing this as long as possible. My life is, for the most part, very normal and I intend to keep it that way as long as possible. May we all be well and thrive as long as we can.

Caryn

Marybe , thank you for sharing your story . You are a true inspiration. It's stories like yours that give encouragement and hope.

Heidi - 4.5 yrs with NED is fantastic. I hope that he sticks around for quite a few more yrs yet! Let us know how your appt goes with your onc.

I was just recently diagnosed stage IV . 4 1/2 yrs earlier I was DCIS and had multiple lumpectomies to which they couldn't achieve clear margins so I chose to have a bilateral masectomy.  I really thought I would be  a lucky, long term survivior.  I have been searching these forums since my recent dx looking for just these types of messages.  I can't thank you enough for posting.  I hope to be posting here in many years.  I have a wonderful life and want to continue to enjoy it for as long as possible.  Thanks again for sharing your stories, they really helped.