Positive stories, please come out of the woods - Page 2

bejuce · 02-01-2010, 07:02 PM

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

lkc Gumby · 02-01-2010, 07:30 PM

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!

flynny · 02-01-2010, 09:29 PM

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!

Shobha · 02-02-2010, 09:05 AM

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

jhandley · 02-03-2010, 05:54 PM

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)

Sherryg683 · 02-03-2010, 11:16 PM

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

Linda · 02-04-2010, 12:07 AM

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

Terri B · 02-04-2010, 02:14 PM

How's this for a positive story: I just had another Grandson last week! This should make you smile!

Nancy L · 02-04-2010, 09:48 PM

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.

bejuce · 02-05-2010, 12:02 PM

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

Kat · 02-05-2010, 12:26 PM

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.

Marilyn · 02-07-2010, 08:59 PM

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!!!!!!

fauxgypsy · 02-22-2010, 07:27 AM

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.

schoonder · 02-22-2010, 08:14 AM

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

islandgirl · 02-25-2010, 07:20 PM

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

margaret · 03-04-2010, 10:56 PM

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.

Karen Wheel · 03-05-2010, 06:00 AM

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

turbo · 09-17-2010, 08:32 PM

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!

ElaineM · 09-17-2010, 09:28 PM

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

Deborah Phaed · 09-18-2010, 06:34 AM

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.