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Survivors, where are you

bvakilian
Posts: 3
Joined: Sep 2002

I would love to talk to someone who has been through what I am experiencing. Six years ago I had level 1 breast cancer (lumpectomy & radiation). I thought I had it beat, until May of this year when I was diagnosed with metastatic breast cancer to my brain. I have undergone surgery to remove most of the large tumor. I have had whole brain radiation. CT scans have indicated that I have several small lung tumors and a small liver tumor. Becasue I am Her2 positive, I am currently on Tamoxifen and I will undergo future scans to see if the tumors have increased. I have never talked with anyone that has survived over 5 years. I would love to talk to long term survivors. Most of the survivor stats I have seen are discouraging. Is there anyone out there that can help? Since today is September 11, I have felt the need to reach out...

24242
Posts: 1417
Joined: Mar 2001

Funny how you say you haven't met anyone survived more than 5 years when I have met many. I meet woman all the time who have had cancer 20 years ago or even 15 before not mastesising anywhere else. I think the younger the age the stats alittle less encouraging, but still lots surviving more than 5 years. I am 5 year and had stage 3 with plenty of node involvement 11/21 positive. I am so sorry to hear of your reoccurance, my only wish is that this time you beat it. Hang in there, you will meet many around here you can relate to. I am so glad that you found us.
Be good to yourself,
Tara24242

judy22
Posts: 119
Joined: Apr 2002

Hi there I don't have the brain tumors but do have the liver and lung. I am a 5.5 years survivor. Hope this helps. Judy

jeancmici
Posts: 682
Joined: Feb 2001

Hi!

I am so sorry abbout your recurrence - mostly people feel they can relax a bit after 5 years free. I am almost one year past completion of treatment; think you will find most of the people here are first-timers or recurrence sooner than 5 years. Long time survivors do not read her, I think, unless there is a recurrence.

You should know that prognosis is better the longer it takes for recurrence generally.

You would be a help in turn to let us know if you had any symptoms that led you to know about the mets. Were you still being tested regularly? In my case, unless I have symptoms or DEMAND scans, I will only have regular blood profiles - not tumor markers, etc.

I am guessing - with stage 1 six years ago - you did not have chemotherapy or take tamoxifen until the recurrence.

Will you have chemo in addition to tamoxifen? You'll find the strength to do this. As Tara says, many women are fine for long periods of time - even the second time around.

You will also have a number of these ladies here praying for you along with the rest of us.

Keep in touch and let us know how things are going.

Hugs and prayers,
Jean

neenie
Posts: 13
Joined: May 2002

I'm sorry to hear about your reoccurence of cancer. I'm 46 yrs. old & a 6 yr. inflammatory breast cancer survivor. The odds of me being here today were low, but I didn't think about that. I just did what I felt I had to do to get better. I had a mastectomy, was on chemo for a year (started 3 months before the mastectomy), and radiation for 6 weeks. I've also been taking Tamoxifen for almost 5 yrs., which I stop taking in about 2 weeks. So far, I'm in good health. Do yourself a favor - DON'T dwell on statistics. They're just a bunch of averages and everyone is different. I know a woman who is a 40+ yr. breast cancer survivor. She turned 100 in July. Please try to keep a positive attitude. Neenie

inkblot
Posts: 705
Joined: Jul 2001

Hi:

I am very sorry to hear of your recurrence but many, many women survive long term, even following treatment for recurrence. You must remain positive and believe that YOU will also! Stats, as related to cancer, mean very little actually and I never placed any value upon them. I'm hoping that you won't either.

I am approaching my 1 year anniversary, post treatment. I too was Her2 positive but was not advised to take Tamoxifen. (I am 17 months out from my initial surgery) I'd like to share with you that I know several women (long term good friends) who have survived well past that five year mark. One friend is a bc survivor of 20 years and the other is a bc AND ovarian cancer(Stage 4) survivor of 14 years. Another friend has survived bc for 27 years. A casual friend's sister has survived 17 years. A friend's Mother survived bc for 28 years, had a recurrence (chest wall) and survived another 15 years post recurrence treatment. She lived until age 78 when she passed on from a massive stroke. LONG TERM SURVIVORS ARE OUT THERE!

I beleive, as someone else stated, that past the initial surgery and/or treatment, many women don't visit or post here as often and share their survival. Many women just really need the early support and answers to questions/ideas, etc. while on treatment(s). Some may return here with recurrence or just check in occasionally and that may be why it seems you're not seeing many long term survivors posting. Please don't let that get you down or deduce that not many women survive long term. They do! It just seems that as most women put their lives together again and move on from the bc experience, we hear less and less from them after the first year or two. They may be more comfortable putting some distance between themselves and previous cyber support systems, which is usually comprised of women in active treatment, newly diagnosed or experiencing recurrence. Everyone's needs are different as they grow beyond their experiences.

Like yourself, when I first came to CSN, I expected to see more long term survivors and was a bit disappointed to see that they weren't here. I've come to understand, how some women prefer to remain connected through groups and websites, etc. and some don't. Everyone must do what is most comfortable for them and what works best, depending upon their particular needs.

One of my good friends has remained connected, is an ACS counselor, attends seminars, etc. and always works to learn new things and improve herself while the other good friend, never wanted or needed any group connection(s). She tried a local group or two but it just didn't suit her and she never went back. Just an example of two long term survivors with very different needs. I hope that info helps some.

Since your lung tumors and the one in your liver are small, I think that's a very good sign that they'll be more easily treatable.
It's good that they were found early.

I wish you the very best and am sending a warm hug along with my love and caring. Please keep us posted.

Love, light and laughter,
Ink

jeancmici
Posts: 682
Joined: Feb 2001

Found this on another site - certainly should give you hope. there's a special section there on Her2/ recurrence

"Posted by SANDY-TO on 9/4/2002, 8:18 am , in reply to "recurring breast cancer"
207.35.188.14

Hi Jan, I have had recurring bc 7 times, yest 7 times. I was first diagnosed in 1989, I am no 49 years old. I am now in an a closed trial. I am receiving herceptin once a week and I am taking arimidex once a day. I know how scared you feel right now and how upsetting this is for you. I am still scared, but I take each day at a time and I am continuing to work through my treatmens because it helps me mentally and emotionally. I never went to a support group or received counselling and in hindsight I should have because this past Oct. when I was diagnosed again I fell apart and over the summer I was really depressed. Since I found this site in March, it has really helped me alot to know that I am not alone in this war. I live in Toronto, Ontario. The strongest advice I can give to you is trust your instincts, if you do not agree with your doctor(s) or if you don't like your oncologist, find someone you can trust, and always question what they are telling you. My surgeon told me this past October that if he had been more agressive the first time I might not have had so many recurrences. Thanks, Doc. nice to know now. Good Luck and e-mail any time. Remember this is a war and put on your battle gear and fight like hell!!"

Here's the URL:
http://pages.prodigy.net/replyasap/bc

bdean
Posts: 262
Joined: Feb 2001

If you would take the time to go back through these pages, you will find many survivor stories. It would be well worth your time. Also, being Her2neu positive has nothing to do with taking Tamoxifen. Tamoxifen is for estrogen positive tumors. I am Her2neu and take Herceptin - which is especially for her2neu tumors. Is Tamoxifen the only drug you are being treated with? No chemo?
You need to ask a lot more questions and do research for yourself on your diagnosis. It is amazing how much info you can find through the NCI or ACS or WebMD.
I'm not long term, but have many friends who have passed their 10th anniversary. One was told in 1990 she had six months to live! You're going to live as long as God deems so - cause only God has that power - no doctor does.
You will be in my thoughts and prayers. I wish you had left a name or at least initials, but God will know.
Hugs, Brenda

shirlann
Posts: 235
Joined: Oct 2001

Hi, dear sister, stop reading the damn stats. If you can, and you can, go to AOL's health site and log onto the breast cancer site. There is a whole huge group of women who call themselves Stage IV Amazons. Many of them are 6, 8 12 years out from mets. They just knock them down when they come up. They are amazing and I am sure they help each other. Most of the computer stores have discs for 1000 free hours on AOL, and if you really like it, you can sign up. Gentle hugs and all my prayers. Shirlann

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