Positive stories, please come out of the woods
 

Hi my HER2 family,

I have been a little overwhelmed reading all the stories
of recurrence and the emotional postings by those who lost their loved ones to this dreadful disease - MightyOak, Irene, Julierene, and many others.

I'm sitting here in my family room with my youngest - who's only 3 - and trying hard not to cry over the losses we've had on this board and over the fights that many of our members are so unfairly but courageously fighting.

I think I'm in desperate need for a reminder of the positive stories here to alleviate some of my fears at the moment. I can't stop wondering whether 3, 4 years from now I'll be unfortunate to have to deal with a recurrence. All that I want in life is to be here for my hubby and kids and to see them grow into adulthood. I love them so much and the fears of leaving them are too much o bear sometimes.

So please I ask those of you with several, many years out to share your stories again as I sit here in fear. How many of you are out there who were stage 3 and with many nodes out?

Thank you so much!!!

Bejuce (Marcia)

Re: Positive stories, please come out of the woods
 

Hi Marcia,
I'm happy to share my story with you so far--I was diagnosed at age 36 with Stage III breast cancer, had 11+ nodes & my prognosis was "poor" --at the time my son was 5 and my daughter was 4. I learned I was Her2+ and that was considered a bad thing, since Her2+ cancers are more aggressive and less treatments were available (like Tamoxifen, etc.). I had a mastectomy, went thru chemo, radiation and was fortunate enough to get into a clinical trial with Herceptin for a year. It was such a tough time for me, I was so pessimistic about my survival--planned my funeral and was so worried about leaving my small kids. But I also discovered this website & began to connect with others in my situation. (I also met my dear friend, Michele U on this site and we met up with our Moms and daughters--it was great--she had StageIII cancer with many positive lymph nodes, too and is also doing great over 5 years later!)
Happily, after treatment was over I kept expecting a recurrence, but none came. I did have my remaining breast removed several years ago due to DCIS, but I really can't complain--I'm feeling well and most days now I don't think the cancer is coming back. I still check in here from time to time to check up on old friends and lend my support and prayers to people who might need it. I hope my story gives you some hope--I know there are others here that have not had recurrences either (Ruth, Yorkiegirl, to think of a few). There are many reasons to stay positive, even in the face of so many losses here in recent months. Herceptin is a great drug for a lot of people. Try to stay in the moment and not get too carried away into that awful "what if" spiral. I used to look at my kids and burst into tears, but now they are 12 1/2 and 14...Keep the faith.

Re: Positive stories, please come out of the woods
 

Hi Marcia ~
I was also diagnosed at age 36 and with 10 positive nodes. Many matted together. My daughter at the time was 9 months old and now sweet Emma is 7 1/2. There are non recurring stories out there but many just don't post anymore as they move on. I have a good friend who is 15+ years out from stage 3 (was 29 at diagnosis) and had no herceptin! She had everything else there was at the time (stem cell transplant; high dose chemo)and her baby is in college now. I have had a hard time too reading about Joy, Irene and Julie. I want to take a break from here for a while because it hurts so much. It's tough and no other words describe how horrible this disease is. But with all that I'll be on my 7th year soon and I feel physically just fine. I still worry sometimes but my Oncologist told me I shouldn't anymore...just enjoy life. Audrey almays makes me smile when I see her post something since she has my signature and she's ahead of me by a couple of years. We are both doing great and I think there are many of us out there.
Love & hugs ~ Ruth

Re: Positive stories, please come out of the woods
 

I won't share all the details, but I was diagnosed in January 1999, so you can see that I am celebrating 11
years of survival so far !! A doctor told me I probably had only 6 months to live in January 2000, but as you can see that didn't happen. The day he told me that I decided it was not going to happen to me. I got busy and made sure it didn't happen.
I still have to push for the health care I think I need.
I still have to write letters. I still have to make phone calls. I still have to ask for things. I still get second and third opinions when neccessary. I still have to do alot of research. I still have to take care of myself 24/7. I still have to keep on top of things, but it is my responsibility to myself and I have no intention of stopping. I want to be a very old lady someday.
There are others on this board who have survived longer than me. I think we have a thread somewhere about that. Please check it out.
Don't give up. Keep putting one foot in front of the other and keep going no matter what.

Re: Positive stories, please come out of the woods
 

Thanks for starting this thread Marcia, and thanks to all the wonderful survivors who have shared their stories. Congratulations to you all ladies and please know you inspire all of us.
I needed to read this this evening as will have my mri results for suspected bone mets this coming Wed. I 'm still hoping for plain old age and really want to hit that that five year mark in July:)

Re: Positive stories, please come out of the woods
 

Hi Marcia. While I'm not Her2 positive, I am a long time bc survivor. At the time of my diagnosis (26 years ago), I thought I was stage two. Now I think maybe I was stage three. They didn't test for Her2 back then. I was treated pretty agressively---had a right modified radical mastectomy and a year of CMF chemo, on a three week cycle. Initially, I did a month of weekly chemo. My recollection isn't the greatest, but I think I had nine of sixteen lymph nodes affected...and back then the number affected the length of chemo. If more than half of those sampled were malignant the treatment was for a year, otherwise chemo was for six months.

It took me a long, long time to believe in my health.....I too had young children. They were eight and eleven at the time. I'm now grandma to five! Prior to cancer, I had lived like many young people do---believing I'd live forever. Cancer certainly makes one aware of mortality. I guess my "new normal", which isn't so new anymore, was mostly about not living in fear. It sure was a process for me. As I said, it took a loooooong time for cancer not to e the focus of my life. Now my sister has been diagnosed(Her2+) and I'm thinking about it a lot more again. I completely understand how we need to hear about women who are NED...that's why it's so important that the ones who are doing well continue to write to groups.

There has been a lot of loss on this group lately, and these men and women are among the most caring I've come across online. I wish us all comfort in the wake of this loss, and also hope for ourselves and other sisters and brothers we love.

Barb A.

Re: Positive stories, please come out of the woods
 

I'll share a very short version of my story that should give you some hope. I was diagnosed in October of 2005 at age 38 while pregnant with my daughter...she turned 4 in October. I just had my quarterly scans and all is clear (thanks to Navelbine & Herceptin for the last 2+ years).

I know how you feel. I lost a friend to breast cancer earlier this month and it shook me to the core. She was also a young mother like us. But I have been living with metastatic disease for over 4 years and have realized that I just have to embrace the moments life hands me and focus on the positive memories of the ones that we have lost.

Re: Positive stories, please come out of the woods
 

hi marcia-

i don't have a long-term survivor story to tell since i just got diagnosed on august 27, BUT having just finished chemo and having had the tumor (albeit a little stage 1 tumor) taken out, i honestly feel like there's no cancer in me. in fact, if it weren't for some minor annoying chemo side effects, i feel healthy as a horse! i have my Fuck Cancer (pardon the french) hat on and that pretty much says it. i think we all will wrestle with fear of recurrence to one degree or another (or progression), but i like to think that if it happens, they will have progressed even further with treatment. i read a post by Vickie H last night that I loved, about living life versus surviving it. the last paragraph started with “Survival is all about numbly going through the motions and just getting by. Living is being aware of every emotional sting and scrape, as well as the joy and delight that happens on a daily basis.” she ended by saying she chooses to live life. i found her post very inspirational, and since then i would rather call myself a 'liver' instead of a survivor. it is extremely sad to see all the losses in this group of late and my mother just said to me over lunch "isn't that depressing?" i said to her that it is more than balanced out by all the wonderful "livers" i see here without whom i might have been a lot more frightened and lonely. i also believe that those who have lost their battle would not want us to turn away from this place and let cancer and grief win. after my husband died i let cancer and grief practically own me, but that's a really crappy way to live. when i got cancer too i could have let it happen all over again, but i REFUSE to. it is huge to lose someone - and here, multiple people - to cancer, but living, and really living life, is the best revenge and exactly what those who've died would want to see us do. a healthy respect for cancer is in order, but living in fear is not really living at all. -valerie

Re: Positive stories, please come out of the woods
 

Hi Marcia,
I know what you mean about being overwhelmed by all the sad news we have experienced on the site recently. We are a close family feeling others pain.

Please remember there are many positive stories now because of Herceptin. I think the sisters we lost and most recurrences were not given Herceptin when first diagnosed. They received Herceptin at the metastatic stage. If my memory serves me right Herceptin was approved by the FDA in 2006? We are so fortunate to have had our miracle drug at the beginning of our battle with cancer.

I just saw my onc Jan 11 and ask her how many recurrences she had from patients who had Herceptin since it was approved for early stage breast cancer. She said only ONE! That is amazing since she treats many at a large teaching hospital in Chicago.

One other thing to consider is when most breast cancer survivors are finished with treatment and doing fine they get on with their lives. They don't want to think or hear about cancer. I am so thankful for members here like Becky and Jean who stay on the site and continue to offer their knowledge and wisdom to all.

I am reminded every day to celebrate life because of my cancer. My children are grown and I am now into grandchildren. I want the same dreams as you, to see them grow, go to college and marry. Because of Herceptin we really do have that chance. Take a deep breath, enjoy your wonderful family and concentrate on all the blessings. Continue to remember those struggling right now and keep them in daily your prayers.

I am 3 1/2 years out.
Hugs,
Donna

Re: Positive stories, please come out of the woods
 

I think, as has been pointed out already, that often a site like this may be tipped because, of course, people are more likely seeking help and support when they have issues going on. We don't hear as many of the success stories. I have had the same experiece in other self help situations. Old timers may not come around as often but hopefully they visit often enough to offer hope and balance.
I attend alot of functions at the cancer center but many people never want to darken the door again, once treatment is over.
Keep the faith.

Re: Positive stories, please come out of the woods
 

I'd love to share my positive story too. With all the sad news we do need to encourage one another on as our hearts grieve for those we lost and love.

I was diagnosed in 2005 with stage 2B and 1 positive node. I was 45 years old. I just celebrated my 50th birthday and am fast approaching my 5 year cancerversary. I am healthier and happier than ever before. Life is good and life goes on.

How I wish I could wave a magic one and make all our sisters well.....but sadly, we can't. We can only live (each of us) one day at a time and take them as they come. I don't know what my tomorrow holds but for today I am here so I will grab ahold of each day and live it to the fullest.

God Bless you and may Peace rest in your heart...

Mary Jo

Re: Positive stories, please come out of the woods
 

Marcia,

Remember Andi BB? She's more than 10 years out after having a recurrence just a couple of years after her first diagnosis and treatment.

Check out the 'long-time survivor' thread by using the 'search' button - seems every so often, the same question is asked, so you are really not the only nor the first one to want to know the 'positive' stories.

And Christine - the founder of the Board - has also been NED for many, many years...

It's good (and smart) for you to be careful and keep on surveilance. I (and the doctors) was 'fooled' by the mammogram results for four years before finally got my recurrence figured out. It was always extremely painful having mammogram for me because the glass was pressing on the pebble-like tumor. But there are articles out there stating that 'some' women have painful mammograms without having breast cancer... And the physician who had read my mammo kept on calling the shadow on the film 'scar tissues'...

I couldn't have any children but I understand what you are talking about. My Mother raised six children while enduring WWII, fleeing communism, escaping polio epidemic, numerous typhoons and earthquakes... She always states that had it not been for us children, she would have either walked out of the marriage or had drowned herself... She's turning 87 this fall and will be a 12-year Non-Hodgekins Lymphoma survivor.

And my Father, the man to whom she's had so much mixed feelings, is going to be 95 in the fall...

I know you are probably looking for the stories of those who do not have recurrences. But I really think that it is important to know what to watch for (such as a painful mammogram in my case) and that there's life even after recurrence...

Re: Positive stories, please come out of the woods
 

Marcia,
This was a wonderful request....

As I read the replies each one brought a huge smile to my face! I kept repeating, yes thats what we want to hear....

I too have felt so heart broken over our recent loses.
It has been way to diffiuclt to bear. I hate this disease and what it does to beautiful women who have so much to live for.

We must always remember that more are beating this disease and each day we get closer and closer, do I dare say a cure? I think what we will see in the very near future years ....is control of this disease with women NOT dying...but keeping it controlled. Especially when caught in the early stages. We must continue to not allow the doom of cancer to control our lives. We are always getting another new arrow to put in our quiver to fight this ugly nasty disease.

Greek myths are filled with tales of the Amazon women
Warriors who cut off their right breast in order to gain strength and power to shoot their arrows. They would go to any extent to achieve victory. They are mentioned in the tale of the lliad. There is a growing body of evidence that the Amazons women Warriors were as real as the civilizations who wrote of them. I know this,
they are real for they are here right on this site.

jackie....I had to chuckle like heck when I read about your Mom...she sounds wonderful.

Re: Positive stories, please come out of the woods
 

Marcia,

Thank you for your post. It's nice to be reminded that we thrivers need to say hello every now and again.

3 1/2 years ago I received a diagnosis of inflammatory breast cancer, locally advanced (12 positive lymph nodes), HER2+, estrogen +; the statistics I found at the time said that survival was 24 to 36 months.

I am now 41 months since diagnosis and 32 months since surgery.

I wish I could say that I don't worry about recurrence. I do. I guess I find strength in every day, or one day at a time. It's taken a long time to get where cancer is not the entire focus of my life. And I struggle with it every now and again - my boss was diagnosed in 2009, still undergoing treatment; my best friend has battled for 8 years and has entered hospice this month; another friend had recurrence in the same breast 6 years later (and only a year ago). And then I read of the ones our site has lost. It can be very disheartening and emotional.

Stay strong.

Hugs.

Re: Positive stories, please come out of the woods
 

Thanks for the uplifting stories. I really needed to hear them today.

Amelia

Re: Positive stories, please come out of the woods
 

Marcia,

Thank you so much for starting this thread. It was very uplifting and reinforced the reasons I love this board so much.

Re: Positive stories, please come out of the woods
 

Ditto, Marcia. I have been feeling so low due to our many loses. This thread is really helping me heal and hold onto to hope tightly.

hugs,
shobha

Re: Positive stories, please come out of the woods
 

And another positive story:

Last week, my niece turned six. She was born the day before I was diagnosed.

My aunt, not a blood relative, survived cancer for 20+ years. She's in her 80's.

I know a woman who was stage IV 13 yrs ago. She's NED

I know several women who had a recurrence, one even had 3, who returned to NED.

On the Breastcancer List (www.bclist.org) several women were diagnosed with stage III a long, long time ago. They are doing fine.

Like others have said: when you have survived for a long time, you don't post so much. There's just not that much to say. Life goes one. We are fine. We want to give back to the forum or list that saved our sanity. But if you need us for our positive stories, we are only too happy to oblige. I don't know about the statistics in your country, but here in the Netherlands 10 year survival is very high. Around 75% overall I think.

This is a list for HER2 survivors. Many of us had our first diagnosis before Herceptin was available. Consequently, there are more people with advanced disease. I think things are getting better now that we have targeted therapies.

Love

Jacqueline

Re: Positive stories, please come out of the woods
 

My dear friend Barbara in my support group was stage 3B in 2005. She got Herceptin and just passed the 5 year survivor mark.

Re: Positive stories, please come out of the woods
 

Hope I can help someone. I usually don't post but I too have been saddened by so many losses on this site. So many wonderful men and women. I was diagnosed Stage IIIA in March of 2006. I am coming up on 4 years and am so grateful. I still do worry about the cancer returning but I try to just give it to God. My mother who was 86 passed away last Thanksgiving. She was so worried about me and the cancer coming back. She was diagnosed with gall bladder cancer in October and died a month later. By the time they found her cancer it had spread all over. The doctors said she probably had it for several years. So we never know. I just try to take one day at a time. This site has been such a blessing to me through the years. I hope this gives encouragement to others!!
Nancy

Re: Positive stories, please come out of the woods
 

Thank you all for your wonderful stories of hope and words of encouragement. I needed that this weekend as I kept thinking and praying about those we've lost recently. I have an appt with my oncologist tomorrow before my Herceptin infusion and we know how antsy we can get before seeing our oncologist.

I found a small rash on my skin (near the drain that was placed on the non-cancerous mastectomy side) and now I am freaking out that it may be skin mets. I've already researched the archives and convinced myself it's nothing, but still, I'm a little on the edge. And to add to that my period has come back with a vengeance (I've been on Tamoxifen since October) and you have the picture of a worried, stressed camper.

Thank God for this group and long-term survivors everywhere!

Big hugs to all of you,

Marcia

Re: Positive stories, please come out of the woods
 

Hi marcia!
I think we all feel the pain when we've lost a " sister"
The reality is though many if us with " bad prognoses" are doing great.
I am coming up on 5 yrs, 12 pos nodes, no clean margins, blah,blah blah.
Am doing great, you will too!

Re: Positive stories, please come out of the woods
 

I know the feeling. It is important to hear all these wonderful stories, as there are many, many women (and men) out there that don't have a reoccurrences and who live long full lives. I plan on being one of them. I will be 2 years out on February 22nd and I pray that I continue to do well! I got a clean bill of health in the middle of January (mammo, breast MRI and onc appt).

Continue to stay positive and keeping smiling!

Re: Positive stories, please come out of the woods
 

Marcia,

Praying that the little rash is just a rash. It does sound like a benign rash since it is on the non-cancerous mastectomy side. Keeping you in my thoughts and prayers!

hugs,
shobha

Re: Positive stories, please come out of the woods
 

Hi
I was dx stage iv 4.5 years ago. Have been in remission most of that time. Went off herceptin 6 months ago and just had a clean scan.Yay!

keep smiling!
Jackie (down under)

Re: Positive stories, please come out of the woods
 

I was diagnosed a little over 4 years ago, stage IV, 2 small micro mets to lungs. After 6 weeks of chemo another set of scans were taken and everything looked fine. Finished up 4 months of chemo and radiation. I have continued NED ever since. I will be on Herceptin indefinately. I still have my moments of doom and gloom, especially around scan time and when I hear of loses of fellow sisters and late at night when I think too much. But have decided to try and live and enjoy the rest of my life. I feel great again finally. I remember being told by my breast surgeon that I could be dead in 6 months. I feel like I have walked through the fire of hell with just a few brush burns to show for it...I feel so lucky and blessed at times it just makes me tingle. I too have young children and I have got to be around to see my daughter grow up..sherry

Re: Positive stories, please come out of the woods
 

Hi Sweet Marcia:
I was dx locally advanced in April, 2005. I'll never know how large my tumor was (huge I suspect) or how many pos nodes I had, because I had 6 months of neo adjuvant chemo. Unlike you, at surgery I still had a 6 cm tumor and one grossly positive node. My path report was hideous (super fast growing,er/pr neg) After that, I had rads, and the rest of my year of herceptin. My kids were teenagers at the time, and I know the fear you write of.
I have had no recurrence, no progression, not even any lymphedema or lasting side effects from treatment. Our kids are in college now, almost done!. I run, work out, travel, work hard and joke with my husband about getting old and eccentric. I often forget I had cancer and get caught up in ordinary aggravations at work, etc. Yes, there's always that little hesitation, wondering if tomorrow is when it will come back. But mostly, I'm in my life and back to my old self.
When I was first diagnosed, I clung to the stories of women who were years out and doing well. And most of those same women I tracked then are still well, now eight - ten years out.
Take care
Linda

Re: Positive stories, please come out of the woods
 

Re: Positive stories, please come out of the woods
 

I was diagnosed stage IIIC in August 2004. In March 2009, my cancer came back so now I am dealing with the challenges of stage IV.

But I am really writing about a friend of mine who has been stage IV Her2 positive for over 10 years and has only been on Herceptin and an estrogen inhitibor. She turned vegetarian and is very into yoga these days.

So there are success stories.

Re: Positive stories, please come out of the woods
 

Congratulations on your grandson, Terri!!! He's quite a stud! My dream is to become a grandma one day :)

Re: Positive stories, please come out of the woods
 

Hello, fellow survivors. Wanted to add my positive story to the lot. Diagnosed in July 2005, at 49, after just having a mammogram 6 mos ealier. Stage III. Tumor in the left breast, and at time of diagnosis a 1.2 cm tumor in the left lymph node. I know my surgeon did not expect that I would live. But here I am, almost 5 yrs out. No recurrance. It is difficult to know at first that you will survive. The knowing comes in time. It is a process. It has taken these 5 years to heal in mind, spirit, and body. It will come. The information and support on this site has provided indispensable comfort. To Joe and Christine, and all who post. Thank you.

Re: Positive stories, please come out of the woods
 

Here's a positive story for you. I was diagnosed on Feb. 8th, 2000. I had 12 of 19 lymph nodes positive and opted for a double mastectomy. I had chemo and radiation at this time. In July of 2001 I had metastases to my bones. Went through 6 months of chemo and continue on Herceptin to this day. Tomorrow I will be a 10 year survivor!!!!!!

Re: Positive stories, please come out of the woods
 

I was diagnosed in 2007 as Stage 4 (there may have been some mistakes in staging) and come May I will have been NED for 3 years. I had chemo and herceptin and a mastectomy. There have been problems but I am back for all intents and purposes to my old normal (a few years older and a little wiser.) I lost some things but gained others. I don't spend my days worring about recurrence. I accept the fact that the battle may not be over but I am still planting trees (literally and metaphorically). If I don't get to see them grow then someone will. I will not let cancer rob me of life while I am stil living. Hope this helps.

Re: Positive stories, please come out of the woods
 

The great satisfaction experienced by our scientific teams when they learn that new candidate drugs they are working on are not only effective in sustaining life, but probably even more important improve upon the quality.
Here's how an ex-vp oncology at Genentech remembers it.

http://www.bizjournals.com/sanfranci...&i=health_care

Re: Positive stories, please come out of the woods
 

Hi Marcia: I can so appreciate your wanting some 'postive stories' amidst all the intensity of peoples' journeys. You can see I've been through two cancers, multiple surgeries, and chemo. I have two young children (now 10 and 15). While it's been a roller coaster I really feel like it's an early lesson on how wild and unpredictable and rich this life of ours can be. Yes, I never would have wanted to be in this 'club', however, here I am. My kids lives have been bracketed by my breast cancer since they were 3 and 7. I don't want to sound all Hallmark-like, however, it does make life smell sweeter and all feel more fleeting and precious. It's been wildly difficult, too, but I feel it's taught us all about living in the moment, empathy, not sweating the small stuff. Take care.

Jude

Re: Positive stories, please come out of the woods
 

I wanted to add my positive story.
I feel like I've gotten the cure!
I had stage 3b, 9cm,er/pr - and her2+++ ,16 pos. nodes in Nov. 2001 at age 38. My daughters were 8 and 10.
Mastectomy, 4 ac, 4 taxol plus herceptin and 1yr herceptin and radiation.
I am so grateful. This board was a great lifeline for me during my treatment. I thank the creators Joe and Christine.
Blessings and prayers to all those going through treatment and still battling the disease. There is hope. Every new breath brings potential joy.

Re: Positive stories, please come out of the woods
 

Thanks for sharing all - I didn't see this one back in January - but read it today and really enjoyed the wisdom of the amazing people who continue to post on this site.

I see the point that sometimes it could be depressing to read bad news, however, I'm with the many others that say that even with the bad news the good news and the sharing of information and ideas is much more positive than the amount of bad news we get.

A big --- Thank you to the members who have been posting for years here and are long term survivors - Elaine in Hawaii - 11 years! YOU ROCK - and many others that keep us reminded that we can live long term!

I also - would love to see if someone has stats on how many women beat this long term - since Herceptin. As the things that you can still find on line do not seem to highlight this - a lot still say Her2 has a poor prognosis.

If anyone has these stats - or has any idea how to maybe find this - I am thinking everyone on the site would love to hear this kind of news.

1 year after surgery - no cancer! I'm on my way!
Karen

Re: Positive stories, please come out of the woods
 

I have not posted for quite awhile....want to spread hope with more positive stories. I was first diagnosed in '98
dcis ,then 2003 stage 3..then lung mets 2006.....stable 3yrs and now NED on herceptin only for 1 yr 6 month!Stay strong ..keep moving!

Re: Positive stories, please come out of the woods
 

I was diagnosed in January, 1999. I am still here. That is a positive thing !!!!!!!!!!!

Re: Positive stories, please come out of the woods
 

I haven't posted here since '05, but lurked today and saw this thread.

This month marks my 7th year out from DCIS, lumpectomy and 33 rads. It also marks my 5th year out from Stage 1, Her+++, bilateral mastectomy, Taxol (8 tx only) and Herceptin (7 mths only). August marked my 4th year out from thymoma (thorascopic resection only).

I also have inspiration for life from my best friend who's in her 6th year of living with Stage IV SCLC.

Both of us decided not to give this disease the power to take hope or the lust for life from us. We are still who we've always been and don't define ourselves by our diagnoses.

Live life and love your friends and family to the very fullest each day. No one, with or without this disease, is guaranteed life in the next moment.