Got back from Young survivors conference!

micheleu · 02-27-2008, 08:08 PM

I met up with Audrey from Ohio in Jacksonville FL for the confrence. It rained the first night, but then was nice. I think there was 800-1000 of us there. Met alot of very young stage V survivors. After going to the conference, and seeing alot of you posting lately, I realize just how lucky I am not to have had a recurrence. I'm going to hit my 5 year this August and i'm very nervous about it for some reason. Why me? Why have I not recurred and alot of you have after the first to second year? It looks like alot of you got Herceptin right away also. I had 35 positive nodes, if anyone should not be here, it's me. I guess i'm having survivors guilt after going to the conference. These gals have not even had their children yet, and i have 3. I watched my son graduate last year. Many wish for that. I wish we could figure this all out. What made my tumor different then the gals that recurred? It's not anything that i've been doing, that's for sure. I don't eat like I should, and still weigh 9 pounds then I should. Anyway......I was a little dissapointed in the meetings. No one ever really was in charge of anything. No one talked to us, we just went to our breakout sessions. Has anyone here went to one of the young survivors conferences before. Maybe it was just me. Me and Audrey had fun. REally good seeing my friend again.

TSund · 02-27-2008, 09:19 PM

Michele,

You're there because so many of us desperately need to see examples of Hope. Those here who are surviving recurrences and those like you that don't have them despite the bad prognistics. Ruth's cancer was very large, and some days I get scared out of my wits of what the future might hold . I think I keep my sanity because I can see women like you do so well. As well as those who keep knocking those mets back. You provide Hope. Rejoice that you get to play that role, take that responsibility seriously, and continue to be the wonderful supportive person that you are. It means so very much.

Terri

Christine MH-UK · 02-28-2008, 04:25 AM

It is good that some of us our lucky. I know all about high risk survivor guilt: of the three people I know who got taxotere when I got it, I am the only one who didn't have the cancer come back and I have seen too many good women die.

Still, I think that it is good that we exist, not just to give hope to others but also to help make things better for those who are diagnosed after us.

Take care,

Christine MH

Mary Jo · 02-28-2008, 05:35 AM

Hi Michele,

Thanks for checking in and sharing your feelings with us. I, too, remember at the beginning of my "journey" wondering why I was stage 2? Why didn't mind "spread" like others? Why, why, why? Oh I remember the guilt I felt and cried over it at times. At times I would just wait for the other shoe to drop as I figured "why" not?

Who knows "why" some of us don't get mets - why some do and then go to a NED status - and why some do everything and nothing works. It is mind boggling at best.

I'm glad you are doing well - glad you are NED and so understand how you feel.

Love and hugs to you,

Mary Jo

P.S. Also happy you had Audrey had such fun.

Julie2 · 02-28-2008, 09:15 AM

Michelle,

Good to see your posts on the board. I know that you participated in the UW vaccine trial. Did you get immune response to that vaccine?

Thanks,
Julie

micheleu · 02-28-2008, 10:39 AM

thanks all,
No Julie, I did not get a response from the vaccine. They said that it might be "hiding" somewhere other then my stem cells that they checked. No one knows for sure

Lolly · 02-28-2008, 06:01 PM

Michele, how nice to hear from you! You are a beacon of hope for us, don't ever forget it. And yes, there are still so many unknowns about cancer biology, even as it seems the cure is so close.
Another funny thing, as you know I participated in the UW vaccine study also, but after I had recurrence. I had a response, but still recurred again that fall. Go figure!

<3 Lolly

Chelee · 02-29-2008, 07:03 PM

Michele, I have to agree with Lolly...you are a beacon of hope! And lets not forget our wonderful Audrey. You two are quite the pair and I must say the two of you give so many women hope to hang on to. There is no rhyme or reason as to why some recur right away...and then others that never do? It boggles the mind.

You think they would want to check tumors out from long term survivors like you and Audrey that haven't recurred and really study them? Is that ever done?

I know you said it has nothing to do with what you eat...but out of curiousity...what types of foods do you eat if you don't mind me asking? I've changed my diet quite a bit, but it still needs some improvement.

Do you eat any red meat, chicken, fruits and veggies...or what? Or do you just eat pretty much what you feel like? Do you eat the same say you did prior to your DX's...or is it totally different? Can you give me a *rough* idea? Also do you get alot of exercise?

I'm so glad you and Audrey had a chance to get away and have some fun. I'm sure you two had a blast. Its always nice to get together and catch up in person.

Chelee

micheleu · 02-29-2008, 10:35 PM

Chelee,
I wholeheartedly think my cancer was caused by stress. My life now is so much different. I do not stress out like i did before. I try to get at least 2-3 30min. walking sessions a week on my treadmill. I take multivitamin and try not eat alot of fat. I do eat meat and don't do good on the sweets! I have tried to cut my breads in half of what i was eating. I did do Maitake mushroom tablets faithfully the first 3 years after dx. I got them on Maitake.com on the internet. They have to be the D fraction(i don't know why just heard that) I wish i could say that it has been what my lifestyle is, but i don't think it is. I really think the stress is the most important. I did have my tumor checked for PTEN and it was postive. I've brought up that same issue with a scientist about checking survivors for markers, but of course they always have some excuse why that won't work, go figure.

Ruth · 03-01-2008, 02:22 PM

Oh Michele, I know exactly how you feel. I am rapidly coming up on my 5 year mark and the survivors guilt is with me also. I had my 6 month checkup this week and I almost had a panic attack in the office. The only thing my Onc. was concerned about was my blood pressure showing higher than it ever had. I've never had high blood pressure and I think (he does too now) that it was the "white coat" syndrome. It is fine now and I have checked it 4 times since Tuesday!
My life is completely different and it is interesting that I took Maitake extract faithfully for a long time. I am so much happier than I was and stress is much lower. I hope one day many of our questions will be answered. I don't know why I am doing so well. My favorite nurse says that I bring hope too. My Oncologist won't let me go to a year schedule yet because he likes for me to come in and share the hope with patients. They always ask me to walk around and visit. My nerves are usually not the best but if I can help in any way, I'm so glad to. Maybe our tumor cells will be studied. I thought about going to the Young Survivors session but didn't want to go by myself! I think this 5 year mark is bittersweet in many ways. I have lost so many of my friends that I made since diagnosis. It is hard at times to not really know the answers of why things happen as they do.
Hugs ~ Ruth

Sherryg683 · 03-01-2008, 11:15 PM

To be honest I haven't had the guilty feeling yet, all I can feel is gratitude right now. My Oncologist says he really can't say why my mets went away so quickly after starting treatment and has not returned. I just pray that it stays that way, I just feel too lucky to feel guilty. And I know very well that luck can run out, just trying to stay positive that it doesn't. It is very hard for me watching my brother go through what he is going through with his melanoma. Nothing has worked for him and he's taking an experimental drug right now that is pretty much his last hope. He will find out in a couple of weeks if it is working. We were diagnosed a month apart. He told me that he had prayed to God to please not take the both of us. Maybe God has listened to his prayers, I just want him to listen to mine now and save my brother. This all just doesn't make sense. I just wish God would plant the knowledge into these researchers that would finally find a cure for this disease. We are losing way too many good young people..sherryg683

lisajones4 · 03-03-2008, 05:29 PM

Michele - I don't post often, but I wanted to reply. You have given me so much hope. I was diagnosed at age 36, IIIA with 7 positive nodes more than two years ago. I hope that I can continue on the path that you (Audrey, and so many others) are on.

I too think mine was caused by stress ... my mom was undergoing treatment for lung cancer; I was separated from my husband; and I was the main caregiver for my 2 year old daughter. What a crazy time!

Anyway, you and others are so appreciated. Thank you!

Lisa

madubois63 · 03-03-2008, 06:08 PM

Michelle - I just wanted to pop in and say hello. It's been a long while since we've talked. I am glad you are doing so well!!! There is no rhyme or reason to this stupid disease. Please don't let the guilt get to you too much. It really does no one any good. I've wondered why I am still here and not my friends that were diagnosed with lesser degrees of this disease (it all sucks). It doesn't make any sense. Congrats on your sons graduation. My son graduated last summer too. He is in his second semester of college and doing very well. What a gift for us both to see them turn in to men. Keep doing what your doing!!! Love you...

Chelee · 03-03-2008, 11:23 PM

Michele, I totally agree with you about the stress factor. In fact it was the first thing I thought of when I was told I had bc. There had been no cancer in my family and no one would believe the amount of stress I was going through for years prior to being DX. I know I'll never really know why but I think its the major player...at least for me. My diet prior to DX wasn't too bad, but since DX'd I have made many good changes.

There are many women that have that surviors guilt you have. But I must tell you I am so thankfully that there are women out there like you, & Audrey to give so many of us hope that not all recur. When I was first DX and found this board it was the women like you two that gave me real hope which I needed so much since my onc was so doom and gloom. So don't feel too bad because there has to be some that don't recur...why not you.

I agree with what Lisa said...I want to follow your path. Its women like you two that let me know it is a real possiblity.

I so appreciate that you stick around and post when you guys have time. It means so much to so many.

Chelee

Audrey · 03-04-2008, 11:20 AM

I just wanted to chime in here (late to the party) about stress--I think stress was partly to blame for my cancer, too. I had two young pre-schoolers at diagnosis and didn't seem to be getting nearly enough sleep, putting myself last in everything, etc. I finally learned to put my needs first as far as taking care of myself--if I'm tired I will take a nap and not worry about my "to do" list so much. I'll try to get a massage now and then and not worry that it is too much of a luxury... Regarding the Young Survivors conference, there were SO MANY young women there, it was empowering as we all danced to "I Will Survive", but I find myself still thinking about some of the women I met, in their twenties and thirties, facing inflammatory bc and raising small children...We have to find a cure, it's just heart-breaking what so many of us have to go through. On a lighter note, Michele and I saw two women there wearing t-shirts that said "Breast friends--making mammories"--so cute. There is definitely a sisterhood among survivors and such a strong bond. Keeps me coming back here to see how everyone is doing and to be a cheerleader for those still in the fight.

Chelee · 03-08-2008, 11:50 PM

I just recently read an article how a study showed that stress can cause ovarian cancer in some cases. I can't help but think that could possible be a major player in many (not all) cases. I found it interesting once when someone started a thread on here and I believe it was RhondaH? It was just for fun so that everyone could tell the board a little bit about themselves and family.

It got alot of replies. I couldn't help but notice how many of the women that had been DX all were in long term marriages. (That includes me) lol What does that say about us women that are married 20 plus years? We are responsible for so much. I've always had to far too many people to take care of...my plate was over flowing with stresses. That's just what many of us women do. The other thing I noticed in that thread was many of those women were nurses. I found that interesting too. I would think that would be a very stressful job even though a rewarding one. Nurses have alot of responsiblity put on them. They get close to the men and women they take care of. Not to mention all the work that goes along with nursing in general. Talk about stress.

When I went through that thread I was trying to see if there were common things we all shared. I was surprised to see the two main things were long term relationships/marriages, & nurses which to me equals alot of stress. (I might be way off here, but just my 2 cents on it.) (Disclaimer...this is by no means an official study.) LOL

One last thing...Audrey...I LOVED what that T-shirt said. I WANT one!

Chelee

Joannie · 03-09-2008, 06:04 AM

Michele:
I too feel that stress played a huge part in me getting breast cancer. I have always been active with exercise and ate a pretty good diet. Love raw veggies and all fruits. However, stress has always gotten me down. I took on everyones problems. Over the last few years, before my diagnosis, I had great amounts of stress and I know I just internalized it all. After I completed treatment, I sought out physcological help. Upon walking through his door the first time, he asked me what I hoped to accomplish and my response was "Teach me to deal with stress!" Over a period of 6 months, he did that. He validated that I can love someone but not have to carry their burdens for the choices they make. It was the best investment in my future that I could have made. I still get stressed from time to time, but I really have learned to listen and just walk away. I too am coming up on my 5 year mark in August. I'm also NED. I'm greatful for everyday and will work very hard the rest of my life to help bring awareness, raise money to search for the cure, and most importantly for me, be there for every sister who gets breast cancer who knocks on my door in complete desperation. I had so many survivors help me in my time of need. Before bc, I never felt like I had a true purpose in life. I feel like my calling is to offer support, encouragement, and hope. Through all the difficulties that cancer brings, God has granted me this gift. Thanks to all of you for all of your inspiration. I'm almost 5 years out but come to this site at least 4-5 times a week.