The scary stuff!!!

[madubois63]

Don't get me wrong...I plan on being a very old lady with lots of grand kids! No matter that I was originally diagnosed stage IV, reoccurred 3 times with bc, got leukemia from chemo, had liver failure and then extreme iron overload (there's more, but that's just minor stuff). I live day to day for each new treatment that will get me to next mishap...I do not believe in statistics! I write my own statistics and story...

[Mary Jo]

Hi everyone,

I can't believe I missed this thread. When I read the remark made about a recurrence happening to all of us at some point, it left me a little unsettled I must admit. I waited for someone to add their comments to this but none came. I'm happy you brought it up for discussion pinkgirl.

I liked reading everyone's comments and like many of you have stated I choose to live my life in the now. Taking the best care of myself that I can and enjoying each breath God gives me.


Whether I ever have a recurrence or not isn't something I can think about often as it would suck the life right out of me. What will happen will happen and I will cross that bridge when I get to it.

Very interesting discussion and thank you pinkgirl for addressing it for all of us.

Holding all my "sisters" and "brothers" close in prayer and asking for God's Peace to surround each of us as we travel onward..............

Mary Jo

[Becky]

Hi Unregistered

Your figures may be true for Stage 4 women who became Stage 4 - like your example of Elizabeth Edwards - she was not diagnosed Stage 4 but at Stage 3. She was treated with surgery, chemo and radiation and then recurred. These women will not be cured but may be NED for years without recurrence (and, as you said - they may never recur).

However, women diagnosed as Stage 4 from the get go, being chemotherapy naive, they may never recur and the chemo may do its magic the first time as it does in the lower stages of cancer (by erradicating micro mets that we don't even know are there). I stand by my fact and I am sure yours is true to but we are talking about 2 different kinds of Stage 4 patients.

[dlaxague]

Becky said: "women diagnosed as Stage 4 from the get go, being chemotherapy naive, they may never recur and the chemo may do its magic the first time as it does in the lower stages of cancer (by erradicating micro mets that we don't even know are there). I stand by my fact and I am sure yours is true to but we are talking about 2 different kinds of Stage 4 patients."

Becky, do you have some study or other information to give us to prove this statement? I've never heard that there's a difference between de novo stage IV diagnosis and a stage IV recurrence.

I do agree that no statistics available right now will apply to women being treated for mets right now - because things are changing too fast (for the better) for statistics to keep up. So the news is better than any study can show.

But again, I've never heard of this differentiation and if it's true, there would be many clues within it. Please tell us more.

Debbie Laxague

[TriciaK]

Somehow I missed this thread. I've just read it all, and all I can say is "WOW!!" No wonder I feel so much empathy and love for those on this website. You are all so incredible. I just have to add my 2 cents worth, since as most of you know I am a 23 year survivor of BC. I don't know how to do my personal history column at the end of each post, so will briefly repeat it here:
Diagnosed at age 56 in 1985 with early stage BC. Bilateral mastectomy + reconsturcton (silicone) No chemo
Mets to T-9 and T-10 vertebra in 1990 (within 5 years) No chemo, used diet change, psychonueroimmunology (hypnosis and meditation), plus 5 years of Tamoxifen. My last MRI in 1995 report stated "HEALED metastatic breast cancer)
I took that literally and "forgot" about BC for 15 years. Lived very active personal and professional life
Heart attack in 2004+ CT showed BC mets to lungs, now her2. In hospital 1 month due to heart attack and pnuemonia then treatment with herceptin and navelbine for 6 months. Herceptin alone for 9 more months. Heart affected (ef=30), triple bypass, 2006.
Moved 3 times; finally settled and stable in S. Utah, a wonderful area; last 3 PET's=NED (Latest PET in June 2008)
I am now 78 years old (will be 79 Dec. 9), looking forward to being 80 in Dec. 2009. I have severe fibromyalgia, so I have to ignore pain. I faithfully take diovan and coreg cr , which has greatly helped the cardiomyopathy and congestive heart failure. I also take femara and fuerosimide and the suplement Reliv. I eat mostly vegetarian, try to exercise some. My ef is now over 50. I live life to the fullest, am writing my life story, am very active in my church, enjoy my wonderful husband , 9 children, 32 grands and 32+ great grands. Life is good. I don't have extra energy to worry about BC, will probably die of a heart attack anyway, but life is still so much fun I plan to be around awhile, and no matter what, LIVE every day.
I don't know where I fit into the statistics, since my onc gave me less than a year when I started herceptin. I just laughed at him and said "Watch me!" I have cashed in my life insurance. That was fun.
I still think this website is one of the best things that has happened to me. I appreciate Joe and Christine so much, and I love and appreciate each one of you. As I read your posts I visualize each one of you and pray for you. I know how dibilitating fear is, but I remind myself that "fear and faith cannot co-exist" so I concentrate on faith.
Sorry this is so long, but I want to add one more thing, my latest favorite quote to live by. It's from the CancerCrusade:

When you come to the edge of all the light you know and are about to step off into the darkness of the unknown, faith is knowing that one of two things will happen: there will be something solid for you to stand on, or you will be taught how to fly. (Patrick Overton)

I believe that. And I love you all. Hugs, Tricia

[mts]

Tricia-

YOU are ONE savvy chic !

Maria

[Terri B]

Wow Tricia, who could read your story and not be COMPLETELY impressed!

You GO Girl!!!

[Mary Jo]

Just wanted to say I love you Tricia and think you are simply WONDERFUL. You offer such wisdom and love to this site and give all of us hope.

Thanking God for you "sister"

Mary Jo

[sassy]

One reason I no longer visit other sites is that discussions often become attacks, which serves no purpose. Here we have discussions that benefit us all.

I'm not a "stick my head in the sand person" at all. I have the possibility to recurr, just as we all do. But I do not believe recurrance is inevitable. Even in my small community, there are several ladies who were dx'd over 20 years ago and have not recurred. Many told me of their disease after my dx. I did not know they had had BC because it was prior to my move here 27 years ago.

One thing to remember is that the statistics quoted for 10,15,20 years survival are based on data that is for initial treatment 10,15,20 years ago. Not based on current treatment.

For those of us who were dx'd early stage, Herceptin has changed the stats significantly favorably. And if I'm not mistaken, the longest term stats available could only be for about seven years (since the initialization of the HERA trial). We are in a category that does not have historical statistical data.

Do any of us look at traffic death statistics and refuse to travel in a car? Probably not. But hopefully we look at the contributing factors to traffic deaths and take steps to increase our odds of survival, ie wearing seatbelts, not talking on cell phones when driving, etc. We should look at recurrance stats the same way and take those steps that we can to increase our odds of survival, ie treatments, lifestyle, diet.

Cancer is a part of our lives--otherwise we wouldn't be here. But it should ONLY be a part--not the whole.

Enjoy life.