The scary stuff!!!

[webmum]

Debbie says:

I think what all our discussions about anxiety and fear are really about is accepting uncertainty. But everyone's life is uncertain. No one's life (even the sweetest, healthiest newborn's) is certain. We've just experienced a higher-level alert than most, in this regard. We can use that alert to explore and grow. I see that as an opportunity for which I am grateful. Cancer is just one of so many things that can afflict people. I do not see it as a "terrible disease". I do not hate it. Everyone has burdens. This one just happens to be one of ours.

For myself, I'm no longer scared. I mostly let go of scared about a year after diagnosis. This is not to say that I believe that I will never recur and die. I know and acknowledge that possibility. Sometimes, in fact, I "use" that possibility to remind myself to focus on what's important.

wow Debbie, thank you so much for writing this, I've just finished rads after almost a year of treatments/ surgery etc etc, and I'm still in that scary place where you can't quite allow yourself to live your life again because you're so scared it's going to hit you again..........in the meantime you waste precious time of your life....

where you are now is where I hope to be some time in the future, won't be a year from diagnosis as that is only a month away....but hopefully, not long after that.....so again, thank you for expressing it so well, for showing me there is a way out which doesn't entail any "thinking positive" - how I hate that phrase - nor feeling paralyzed by fear of recurrence.



(I have been visiting this forum from almost soon after my diagnosis, rarely post as I nver feel I have much to contribute that hasn't already been said by someone else, but I thank you all ladies as you are an incredible source of information, and reading your stories has helped me get through this really long and difficult journey!)

Chiara

[AlaskaAngel]

http://www.medicalnewstoday.com/articles/116735.php

[DanaRT]

I have a great-aunt who underwent double masectomy in 1982, she is alive and ornery in a nursing home at 94! I also know of a woman who had two different breast cancers ten years apart. She's also doing very well and in her late 70's. Let's keep the faith.

Sadly, one of my chemo friends lost her life on Thursday, she was Her2 postive. She was 72 and survived many happy years following diagnosis. She was a wealth of information and very supportive during my chemo treatments. I shall miss her.

Dana

[BonnieR]

Dana, those are beautiful girls!

[tricia keegan]

Pink girl, love the discussion here and can identify with your thoughts and am every bit as confused as you.
I've just celebrated my third year out and was feeling good in believing totally herceptin had changed the stats for me and I was one of the lucky one's.
I say this because two of my friends dx with me have had recurrance's, one to the liver and passed very quickly and one who is still in horrendous tx having had a huge tumour growing on her spine the whole time she did chemo with me!!
I was feeling confident, this evening I sit here with a pain in my knee, it's been there over a week and if still there next week will have the attention of my onc but...suddenly I have that dull scared feeling in the pit of my stomach and wonder if this it???
God do we ever get over this fear??
I doubt it and imagine I'll never have a pain that is just a pain anymore but mets somewhere in my mind. I think cancer does'nt just affect the body but no matter how positive the personality it always has a profound effect on the mind too.
Thanks again for bringing it up!

[BonnieR]

Today I just began reading a book called "After Breast Cancer" by Musa Mayer. It was sent to me by the people who make Herceptin. When I began treatment there was someplace you could sign up for info from them and I have periodically received little encouraging pamphlets, etc. Now that I have completed the year of treatment, this book came. The timing is perfect. It looks to address so many of the concerns and fears we all share.

[Becky]

I wanted to post another 2 cents. I did read (4 years ago when first starting my journey) that Stage 4 (5yr survival) stats were 45% (perhaps it was not disease free survival but when looking on cancer.org, the 5 yr disease free survival for those diagnosed (chemo naive) at Stage 4 is 26%. Just wanted to say that as "Unregistered's" statistics were right. None the less, think about how GOOD that is (and those stats are from at least 5 years ago).

Had lunch with MJo and Joan M today near New Hope, PA. It was very nice to meet 2 more from the board. Very soon we are going to post to have a lunch in NYC so stay tuned for a "sign up" in the next couple of weeks.

[harrie]

The way I try to look at the present and the future is like this: For today, if I am NED right now, and there is nothing significant that I need to be concerned with, I really want to appreciate THIS day. Who the heck knows what tomorrow may bring. It may bring yrs and yrs of days like today, it may bring situations like before where I will be needing to contemplate options and whatevers.....So no sense in jumping the gun and spoiling the carefree days right here and now. I will deal with the future when the future becomes present.

Dont get me wrong...many times I do slip and worry about what may happen,....I just try not to for the above reasons.

[swimangel72]

Thank you all for this interesting discussion - I do not worry about recurrence but I do worry about a new, different cancer showing up in my body - and I worry even more about a life-threatening disease showing up in my husband or kids. I feel strongly that if I do get a recurrence, I'll get through it. Sometimes though, I feel superstitious - when I look at the palm of my hand and realize how short my lifeline is compared to other people.......silly, of course, so I try to get negative thoughts like that out of my mind. Heck, for all I know, I could get hit by lightning tomorrow (considering all the thunderstorms and rain we've had in my region, it's not an impossibility!) So I'll continue to say my prayers for good health and happiness for my family and friends - and do my best to live life to the fullest!

[Bill]

Amen, Harrie. The Buddhists would call the essence of your post, "mindfulness". Living in the moment. If you dwell on the past and worry about the future, you cannot enjoy the only thing that you really have-the present. The past, you "had" that and now it's gone. The future, you may or may not "have" it, who knows. The only thing that you actually "have" is right here, and right now, and we should enjoy it to the fullest. Be mindful of every moment, and how we spend them.

[Sheila]

If what some say about the statistics of survival being stage IV, then I have alot of living to do in the next 2 months...because that will be my 5 year mark as stage IV.... and getting close to 7 years as a survivor....I focus on living, not on the what ifs....the way I see it, cancer has altered my life, and some of my plans, but it will NOT alter my spirit! Each day is a gift to ALL of us, healthy or not, and what we do with that gift is what truly counts and makes a difference....I'm a IV, I have always dreamed of being a 10!

[Bill]

You have always been a 10, Sheila.

[harrie]

Another thought.....

Every single person alive on his planet has "X" number of days left to live their life. It is a granted that in the days to come, some days will be great and some will be challenging. To spoil a good day with worries about something that may happen in the future that we have no control of at the present, is a thoughtful waste of a good day that already has so many blessings to be appreciative of right here and now. AND...these blessings may for some reason not be around in the future. BUT......remember too....the future will probably be holding some surprise blessings for us that we are totally clueless about right now!
Life has a way of working itself out really well if we just allow it to be.

[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

[Sherryg683]

[quote]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.

Becky,
My oncolgist told me exactly the same thing. He said it was very possible that I had a complete response to my initial chemo and there was a possibility that I would not reoccur. Meaning that the chemo had gotten every stray cancer cell. He told me from the beginning that he expectecd that if I were going to reoccur that it would be in the first 7 to 9 months after chemo, that's when they see the majority of reoccurances in stage IV that had responded to chemo. It has been 2-1/2 years since my diagnosis and I have been NED since the first scan they took, which was 6 weeks into treatment. Now I am not saying that I will never reoccur, I am usually more of the glass half empty type of person and kind of expect bad news every time I get scanned but I have been pleasantly surprised. We have to have hope or we'd just as soon give up now. I still believe God has a few miracles that he hands out and if I could live another 20 years, I'd consider that a miracle. ..sherryg683

[harrie]

Oh my God Tricia!! I absolutely positively LOVED reading your story. It makes me want to totally jump for joy and just give you the biggest hug!! Your picture is absolutely beautiful also.

I also love that quote what you included on the bottom of your post. I am going to safe that one.
Well, I think i might want to save your whole post actually.
Lots of love to you,
Maryanne