Fear of re-occurence

Hi Eval,

I have been where you are right now and I know you will hear from many others.  I think that time helps to quell the fear a bit but I won't deny that it is still there.  I am just about 2 1/2 years out and I live a very full active life.  BC is always on my mind but not as constantly as it used to be. When treatment ends I think we feel that we are set adrift - no one watching us anymore -and that was disconcerting for me.  Again, the passage of time helps and you end up dealing with the diagnosis and doing what you have to do to ensure long term survival.  My Onc is so negative every time I see her that now I just consider it a contest, I am determined to out live her! So I don't have any advice except that these boards were a life saver for me and we get it here.  We have been where you are and can tell you that it does get better.  And you will have a long full life and be here to tell us about it.  Carol

Hi....I think as time goes by we need to go on with our lives. I have days when my fears are overwhelming and then I have days where I think I will beat this. I often cry at night before I fall asleep or cry in the middle of the night when I wake up. For me this releases some of the tension. I hate to show my fear around my husband or my sons. They are so worried and my display of fear makes it worse for them. I also have tried to stop talking about my fears to friends. They too are afraid for me and it can make our time together harder for them. If you look through this sight you will see many people who have made it far with a bad prognosis and you will also see those who had a good prognosis who are now dealing with mets. I often read the success stories. As they say more will live than will die. I don't think this sight reflects all of the successes mainly because most of the people on here are newly dx. I think people who go on without recurrence don't come back to the sight to post, I wish they would so we could see the success. I have stopped reading the statistics. So many of them are old and also not very specific to let you know where you stand in the study. As far as what your radiologist said I had conflicting prognosis from my surgeon and my onc. My radiologist didn't say anything. My surgeon was so up beat. He is older and has more experience. My onc is young and goes by the book. He never gave me much of a prognosis...just the general for my stage...which is 3 like you. Keep the faith, live each day as well as you can and find some inner peace.

Eval, I had 25 of 32 cancerous nodes.  I'm coming up on my third anniversary with no recurrence.  Any statistic you see today refers to women who were diagnosed at least 5 years ago, some 10 years ago.  Treatments are constantly changing.  You're probably getting better treatment than I got just 3 years ago.  Mentally it helped me to know that my oncologist believed I was going to be around for a long time.  His confidence in my treatment plan made me more confident, even though I knew nothing was guaranteed.  

Good luck with radiation.  You'll probably find it's a lot easier than chemo but keep taking care of yourself and getting as much support as you can!  

Amy G.

EVAL

Here are a couple more.....

A friend of mine was diagnosed with a 5cm tumor and all of her nodes were all matted in a ball..filled with cancer.  She had her masectomy on Sept 11th 2001 (do you really think the surgeons were paying atttention to her with 9/11 going on?).  Anyway she is doing just fine 7 1/2 years later. She is still working as an attorney.

Another woman that saw my oncologist had 18 nodes positive and she is now 20 years out and just fine.

My surgeon told me that he has someone with 33 nodes positive and she is now over 20 years out.

Know that your treatment today is WAY better than what they got then.

I had  these people's stories on my bathroom counter for the first year so that each day I could believe I could be just like them.  So far so good!!

Fists up!

Jacqueline

Eval,

My first post.

Jan 2005 I was DX and it wasn't good.  Stage III, 6+cm and 2+cm in my nodes (chemo first so I don't know how many nodes).  All this and I was 38 yrs old, had 4 children (2,4,7 & 10yrs)  and was scared to death they would grow up without me.  With family, friends and this website, I made it through chemo, mast surgery and radiation.  At the end of it all I was like you, scared of recurrence, looking for some sort of statistic that could tell me my future.

Well I've learned that each day gets easier.  It is now 4 yrs since my dx and I am NED and very healthy.  Sometimes I think my doctors are surprised to see me so healthy.  Instead of worrying about the statistics I can't change, I decided to work on the things I can change. I fight to stay NED.  I eat very healthy and try to exercise every day.  I have learned that taking care of myself has to be a priority.  I'm also teaching my children, friends and family to be as healthy as possible.  Besides this, I pray alot, I thank God for every day and have faith that I will be here for my family. 

I just had to let you know, we do make it and life though different, will be good even great again!

    

I know how you feel Eval and others who are scared. Its a really scary business this. I think at the time of dx I was too stunned to take it all in.Even when the onc said that I had 'poor prognosis breast cancer' all I could think about was 'how was I going to beat this thing?' It was later that I realised the severity of the situation. Oh yes there are days when I am scared and days when I am very sad and do cry especially when friends have reoccurrances.

It is over two years for me now. I had 23/24 nodes positive and there was some activity outside the nodes - not good. But I am well and enjoying life despite having some problems with SEs from Femara and with rheumatoid arthritis. Life is different as Faith said but it can be good.

Try to avoid stress, this is one of the things my BS says is so important in order to stay NED. Don't let worry consume you. Focus on the next stage of treatment and then getting yourself back to health. Sometimes talking to someone helps as does knowing that you have people supporting you. I had a wonderful prayer chain that went right round the world so I felt that there was always someone there for me.

Big hugs to all ((((()))))

Alyson

Hi Ladies, I was dxed May 05  with 12 out of 14 pos nodes, Her 2 pos, very aggresive tumor.

axillary and sentinel nodes were actually replaced by tumor! blah,blah blah, dismal prognosis to

say the least! I am coming up on 4 years and am doing great NED. LOVE proving my surgeon

wrong.

Anyway, don't pay attention to the stats , they are outdated and non reflective of current tx.

You will resume your lives.

Gid Bless,

My boyfriend's aunt Evelyn had bc in the early 1970s when she was in her 40s. She had a large lump and lots of positive nodes. The only treatment Evelyn received was a mastectomy...no chemo, no radiation, no Tamoxifen or AIs. She made no drastic changes to her life; she didn't become an exercise junkie, and she regularly eats at Denny's. Evelyn is now in her early 80s and never had a recurrence. In fact, she's pretty spry for a lady her age!

I'm 2 years out from dx. Her2 positive and had an aggressive (Ki67=70%) tumor.

I was Stage III locally advanced (positive Inframammary node), and when I asked my Onc about my prognosis, he said I think you are a "Cure".  It sounded good to me!

Hi,

I was stage 3A, 4/9 nodes. Two nodes were each 1 cm each.  HER2 3+.

I just celebrate 4 years out dancing with NED. 

Wendy

THANKS ALL for the uplifting stories. That is my goal for the coming year, staying healthy and getting my confidence back (somewhat). Well, I will try. The risk for recurrence seems to be greatest during the first 2-3 years or so. Never thought I would wish for myself to be 5 years out (&older) instantly!

I was like KerryMac...at first they thought I was HER+ but after fish...no. My sister who is an administrator of a hosipital...and had talked to the oncs there...was disappointed when I was negative. She said HER+ is bad but with herceptin these people have a better chance than us who can't have it.....It is a very effective treatment for most people.

Thanks again. I hope it works and also that the 1 year will be enough. Well, I really hope for everyone that their treatments will work just fine. Wish with all my heart that they just find a cure for this thing once and for all. Wish wish wish....