Not the greatest Question

Hi Angela,

I think we all worry about that question every day. Don't feel bad about asking it. My Aunt is a breast cancer survivor over 5 years. I myself am only 6 months out of treatment. I worry everyday about the same thing. It's almost like somewhere deep in my soul I know I will get it again, just don't know when. Let's face it, everyone is always going to tell us what we want to hear. It's up to us to live our lives the best we can and try not to let it run our lives. We could go out tomorrow and get hit by a car, no one could tell us that either. I think it's wonderful that you help people like you do. There are always going to be those who don't survive we just have to concentrate on the day to day survival and enjoy life. Thanks for letting me vent myself.

Terry

Angela,
You seem to have hit on something we all feel. Fear of recurrance. My sister is a 10 yr bc survivor and I am 2 1/2 yr bc survivor. My cancer was er/pr - so after chemo I felt like I was free wheeling without a net. When someone asked my sister how she was doing one day, she said "good so far". After 10 years she feels the same way I do. Afraid cancer is still lurking around inside us somewhere getting ready to sneak out again. It is particularly hard when someone we know dies of cancer. It brings everything back so fresh in our minds. We can just live our best today and hope for the best.
Janet

Hi

I am glad that there are women like you out there that are willing to ask the hard questions and grateful that this website exists. I am six months out of treatment and worry about the same things that you are worrying about. I imagine we all worry about these things but mostly put our brave face out front for everyone to see. I still smile when I think about my friend who drove me to chemotherapy treatments who was marvelling about how strong and brave and upbeat we all were during treatment. I didn't say it but I was thinking that there was a small scared weak person in all of us but there was no point in letting that small weak person out to play. That wouldn't be useful to us or our caregivers.

I went to a support group for a brief period of time and it was populated with people at all stages of treatment. There were a lot of people like me in their first go around with cancer. We were all relatively healthy and strong and could continue to do sports, travel, work hard and lead a near normal life. Then again, there were a lot of the walking wounded. These people needed canes and walkers to get around some were on oxygen because chemo and/or radiation had wrecked their lungs or heart. They were on support and could no longer work. These were the women who were on their second or third go around with cancer. To a man all of these women were brave and strong and reasonably happy. They explained to those of us who had just had our first cancer treatments that when you lost your physical abilities you just automatically compensated. Instead of bike-riding, running or skiing you took up knitting or reading or quilting. Life just changed, it didn't get worse. I remember sitting there thinking that I really appreciated what they were saying and believed that to be true, but personally I wanted to be able to continue to walk and run and ski. I feel ashamed about it but I quit the group because I knew that those women could be me in future and I couldn't deal with facing the reality of that future. Anyway, the point of this long ramble is that I admire you for your direct involvement with and support of the women in your group. I'm sure that you have done immeasurable good for many of your group members. The only drawback is that it puts you into contact with the losses as well as the successes experienced in the group. Please focus on the strength that you have that you can be there for others. That is an amazing gift to them and says something really positive about you. Thanks again for being so honest and upfront about your fears. I wish you all the best and hope that the statistics fall in your favor.

Mbladet said:

Even though I had a double mastectomy(extensive DCIS, LCIS, microinvasive DC - nodes negative, HER23+, ER/PR-, High Grade, etc) I still worry. No chemo, no radiation ... I feel blessed but scared that there was no treatment needed. Both my oncologist and surgeon said to consider myself "cured" how can that be? Then one of the nurses said to think of it as "I am disease free and they don't expect it to come back" I read these posts from woman who have had recurrent or never ending disease and I am so sad for them. I take each day as it comes and thank the Good Lord for it - who knows if cancer will rear i's ugly head in my body again but until it does I will treasure each moment and pray for those who aren't as fortunate as I am.

You women who have mets but continue to offer support to others are amazing to me - God bless you.

Ahhhh..me too. Bilateral mastec., very aggressive cancer, no node involvement, dcis, etc. But, I still worry too. I try to not think about it but, it is always at the back of my mind. Then I feel guilty because of the horrible things that others of my sisters have to endure. Am I a survivor? So far. I am not dead. But, in my heart, I am not "feeling" like a survivor yet. 7mos from surgery. And, it is hard to talk to ppl. My onc says, hey, you are cured, but, she sees me every three mos.

This may not be a great question, but it is an important one. From what I have read lately, doctors are backing away from referring to their patients as being 'cured' from cancer. The truth is cancer can happen to anyone at anytime. Being treated successfully for one form doesn't protect you from developing another form. Cancer is chronic. Knowing what you will probably die of isn't the worst thing that can happen to you. Yes, it is scary, but you can learn to deal with it, especially if you have a life worth living! I am 48 and my doctors have given me ten years to live. Right now, I feel like I could be around another 50 years and I intend to do all I can to make that happen. There are new treatments and protocols being developed all the time and the longer we last, the better our chances. Besides conventional therapies, I am meditating, doing yoga, gardening, making love, enjoying my children and becoming a quasi-vegetarian. Will this help me live longer and healthier? I hope so, but what matters is the quality of my life. I went to a cancer tea this year and saw women who had survived breast cancer for 20 or 30 years. Considering how primitive the treatment was for cancer back when they were diagnosed, their survival is a testament to the human spirit and everything that doctors don't know! Wildangel, don't try to hide your fears, face them. Reality is never as bad as fear says it will be. Whatever we have to go through, we will find the strength and help we need when we need it. When I was diagnosed stage 2, I thought I was lucky. Now that I am stage 4, I still think I am!

Angela, a couple thoughts:
Sometimes I think there are more recurrences or mets because more women are surviving their initial dx and treatment (wheras in the past maybe they didn't).

There are women in the support group that I go to at the cancer center who are 20+ survivors, no mets. My aunt died of heart failure many, many years after breast cancer. Her daughter is 14 years out from dx, no recurrence or mets. So it does happen.

The fear is real, though, and pretty normal, too. I belong to a couple other online BC support groups and we've lost several members in the past few months, and others have found they have mets. Sometimes it seems overwhelming. But then I remind myself of all the women who are not involved in support groups, either face to face or online, because they are doing well and don't feel the need or the desire to be part of a BC support group anymore.

You wonderful gal and all of the wonderful answers aren't we all GREAT. I think it might be time for you to be a tiny bit selfish and go do just fun things for a couple months. There are many women who are cured of cancer. Remember Betty Ford and Nancy Reagan. My sisters best friend of thirty years had bc 22 years ago and all of us can list many many more people. Give yourself a rest from all of this just for awhile. I'm two and a half years out and do I worry you bet ten minutes a day and then I live the rest of the day. Linda

wildangel said:

I feel like you all know my heart. To be able to express what the doctors deem the "unspeakable" and have other women just like me tell me they feel the same way is amazing.

I pray for all of us. I hate this disease. I think BC is the only one that lurks around like a terrorist ready to attack. I don't think other cancers do that do they?

Even though we haven't found any answers it sure makes me feel better knowing that you are out there asking the same questions.

Thanks so very much.
Love,
Angela

Hi Angelea,

I am new to CSN and just now read the messages related to your initial question in September 2004. If you're still involved in CSN, I'd just like to add my two cents worth.

I'm dealing with metastatic breast cancer which appeared in my liver two years ago, even though I had an excellent prognosis after lumpectomy, chemo, radiation, and Tamoxifen six years ago.

I've come to realize that no one, cancer patient or otherwise, has a guarantee of life or good health.

As I look around me, it's apparent. I'm 60 years old and have experienced quite a few friends and acquaintances leaving this world in the past few years...some because of cancer; others heart problems (a young woman in her forties!); others through automobile accidents, etc. So...I've come to wonder if this life is for the purpose of learning and experiencing as much as we can fit in in the time we are given; and then go on to whatever waits for us next after these experiences.

I also have come to believe that personal growth, love, and relationships are the only real things that are important. All the rest is icing on the cake, so to speak. If I think about it, all the nice material comforts I enjoy mean nothing if I imagine being on my death bed tomorrow. But if I have been able to figure out how to love my husband and participate in the lives of my two sons, my Mom, my sister, and anyone else in my path, I'll feel that my time was not wasted. I'm not always successful, but my focus is on doing that.

I have felt perfectly normal all along in this journey with cancer. I have not felt like a sick person, which is what scares me the most. I know that there is cancer in my body and that it may at some point take over. I try to remind myself when I get scared that I'M ALIVE TODAY AND I FEEL GOOD! Then I try to make good use of today by being observant, learning, and respecting the other human beings around me.

I think there are people who are fortunate enough to live a very long normal life after a cancer diagnosis. But recurrence does seem very possible to me. As I read the statistics on breast cancer after my original diagnosis, I was aware that they always used the five year mark. I remember thinking that this was not a very long time in the scheme of things, and wondered why it seemed to be the standard of measure. I wonder if your suspicions are right; and if those who escape recurrence are in the minority. I don't really know what the statistics show, but for me it's worth looking at it that way because it encourages me to try to live a life that focuses on what truly seems worthwhile.

I have no way of seeing the future, but I do have some control over how I see today...that's all I really can do, even if I live to be a healthy 90-year-old with no more cancer.

So, that's what I'll try to do...and if I get sick and feel bad, it will be the hardest thing to do, but I hope I can still find something positive to focus on while I'm here and then move from this body-shell into the next level with some sort of dignity.

To answer your question, it does seem to me that cancer may very well return at some point and shorten my life. But the more important question is what am I doing with the life I've been given?

Hope you don't mind my addition to the mix of ideas.

Anitarae