Five years out???

[tricia keegan]

I've noticed in the past few months many of us posting having reached the magical five years.

I hopefully will celebrate this next month, herceptin had just been approved here in Ireland a week before I was dx in the summer of '05 so I was very fortunate.

It got me thinking, I know it'll be a while yet before we have study results on the change (if any) this has made to the number of people who recurr with her2+, but thought it may be interesting to see how many of us here have (or about to) reached this milestone.

If nothing else, I'm sure those of us who do may give confidence to those newly diagnosed her2+.

I find myself hoping herceptin really has made a huge difference in adjuvant treatment, not just in print but in actual lives. Please post if you're almost five years or beyond with no recurrance:)

Tricia x

[Audrey]

Happy to report that I was diagnosed in the summer of 2001 and am almost 9 years out with no recurrence! I think Herceptin has made a huge difference and am soooo grateful.

[Laurel]

Long way from 5 years here, Tricia, but thought I'd chime in that I just had my 2 yr cancerversary on the 9th, nice Mother's Day present for me this year! NED times 2! Hoping for 30 more!

Fun post, thanks! Congrats to both you and Audrey!

[caya]

Congrats ladies! Every year is a milestone now!!

all the best
caya

[Catherine]

I will be 5 years out from DX next April 2011. So I am on my way to 5 years. I, too, hope that Herceptin was the magic many of us needed.

Tricia...happy for you and your 5 year mark next month. Is 5 years still a "mark?" I am not making a joke....I am just not up-to-date on the terminology. In the olden days, 5 years was always the "good mark" to reach and feel somewhat confident that you could "relax."

All the best,
Catherine

[mcgle]

Will reach the 'all clear' 5 year mark in November; no recurrence as yet! But I am an anomaly in that I received neither chemo nor herceptin, in spite of being weakly HER2+. Think it was the right decision now, though anxious at the time - the medics thought it would be 'a nonsense' to throw the heavy guns at a strongly hormone positive tiny tumour, in spite of its HER2+ status.

Mcgle (UK)

[Jean]

Tricia,
I have been wondering the same thing the last few weeks. I wanted to know the number of women who have been dx. and received hercpetin and have had no recurrence and have reached a milestone such as min. 5 yrs. Then we could also total those 5 yrs. out who have Not had herceptin.

So lets start adding them up..certainly we should see some impressive numbers?


Mcgle (getting close to 5 yr. on 11/10 yea no herceptin)
Catherine (getting close to 5 yr. 4/11 yea - herceptin)


Tricia 1- 5yrs out - herceptin
Audrey 1 -9 yrs. out - herceptin (in trial)
Jean 1 - 5 yrs. out -herceptin

total of 3....min. 5yrs. out no recurrence NED with hercpetin.
.please continue to add onto this number if you are 5yrs +...and no recurrence/and NED...

PS Laurel....Congratualions on hitting the 2yr mark! What a great Mother's day for you. Wishing you continued years of NED....now onto 3,4,5, 6, 7, 8, 9, 10 - well you get the picture :)

[tricia keegan]

Thanks for commenting everyone, and Audrey congrats to you at nine years!

Laurel, every year is a milestone and I hope you enjoy and celebrate your two years, many congratulations!!!

Catherine, I'm really not sure if five years is a "mark" but it feels like one to me! :) I noticed Steph mentioned in another thread that after five years the risk of recurrance is reduced a little but maybe someone else knows more?

Mcgle, it's interesting to know you did not have herceptin and I wonder if many other's did not have it but still NED...

Jean,I'm sure it's something many of us have wondered about and it'll be interesting to note how many additions we get posted here:)

[Diane H]

I'm five years out this spring, and looking for 50 more! Big collective hug out to everyone

Diane

[Vi Schorpp]

Hi all: It was 7 years for me April 6, no herceptin. I love these milestones.

[lkc Gumby]

I am 5 years out this month! Herceptin rocks. NED

[bashmaz]

Hi - I'm just over 8 years (April 5 2002) - no recurrence and no Herceptin. Doing very well.
Good luck to all on reaching this milestone.
-Marianne

[newgg]

Rollin in at 6 years in June....triple pos. Finished initial chemo and did battle for herceptin a year later...YES !! A quote I found: " when Kismet hits you hard, it is life affirming to HIT BACK" !!

[Susan]

Hi All: It's 5 years out for me this week! No recurrence! I have my mammogram, and chest x-ray, blood work next week and see the oncologist the following week. I hope to cut loose from the every 6 months exam. I'm feeling great, and it all seems like sooo long ago that I was diagnosed.

[PinkGirl]

Count me in .. 5 years for me in August. Feel very lucky to have
had Herceptin as an early stager ... approved in Canada right when I
was diagnosed in 05

[Becky]

I am nearing 6 yrs with no recurrence!

[Kat]

hello, all! I, too, am about to be 5 years out and NED! I was diagnosed July 2005. I didn't think I'd live. I'm so grateful to God, and all the fine doctors and nurses. Onward, everyone! kate

[Morgan]

Me too! 5 years in June and no recurrence.............

[schoolteacher]

I love hearing all this good news. All of you are truly wonderful. Thanks for the encouragement.

Amelia

[tricia keegan]

Thanks to everyone for your replies, I can't remember all the names but whats coming across here is so many of us surviving even after five years, with and without herceptin:)

That has to be great news to all reading this, and a special mention to Susan celebrating her five years this week!:) Many congrats Susan !

I had a feeling when starting this thread there were many of us out there, I'll give it a few days and count the numbers and see what we get to! Thank you again to everyone.

[CLTann]

I refused herception, chemo and radiation. I will be NED sept 2010. Just add to your stats.

[karen raines hunt]

I celebrated 5 years in April. I am doing well (no recurrence) and am really convinced Herceptin is responsible. Yea Herceptin!!! I guess I need to change my signature.

[Sheila]

Tricia
Congrats early on 5 years...it is a great milestone...I think this shows the value of the early Herceptin group....although I passed my eight year mark, I didnt get the adjuvant Herceptin and I have had to fight for 8 years......may you be blessed with 50 more!

[suzan w]

5 years ago this month I was diagnosed, and on June 14th had bilateral mastectomy and consider that my "Cancerversary"

[TriciaK]

Thanks for keeping score, Tricia! I am so thrilled to be added to the list. I was diagnosed with BC in 1985, treated only with bilateral mastectomy,( no chemo), then mets to spine in 1990, (again no chemo, but psychonueroimmunology, self-hypnosis and vegetarian diet). Cancer-free for 15 years then her2 nodes in lungs were found after a heart attack in 2004. I was treated with 15 months herceptin, with navelbine added the first 6 months. That will make it 6 years in June this year since first her2 diagnosis. Be sure to post the accumulated score for all of us to rejoice in! What a blessing her2 has been! Hugs, "The other TriciaK"

[chrislmelb]

I'm 6.75 years past diagnosis. I had late Herceptin.

[VirginiaGirl]

I was 5 years out in February. They were not giving Herceptin for early stagers at that time. After mets were diagnosed the following year, I got Herceptin. Still waiting for NED...

[tricia keegan]

Thanks so much everyone for taking the time to reply to this thread.
I'll give it a few days and we should have an idea of how herceptin has made a difference to us, although I'm thrilled to see a few ladies who did'nt get this drug still NED:)
Many congrats to you all!!!

[LoriE]

I just celebrated my five year mark last weekend!

[tricia keegan]

Many congratulations Lori!!!:)

For anyone keeping a watch on this or simply curious, so far we have the tally below-

18 Had herceptin (no recurrance)

3 No herceptin (no recurrance)

Huge congrats to everyone still NED, and hope other's will add their comments as we need quite a few more to get an overall view. however, it's inspiring to see so many early stagers still doing well either with or without herceptin:)

Thanks everyone for posting !

(Thanks Sheila for your good wishes too!)x

[Unregistered]

I, too, am five years out with no recurrence. Diagnosed in Feb. 05 at age 45, stage IIIA, 6 mm tumor, 3/6 nodes positive, HER+++. Had bilateral mastectomy, Herceptin and the usual concoctions of poisons.

I just had my annual oncologist visit this week and I asked her about the five-year mark and what it really means. She hedged a bit, but said it's great to make it five years with no recurrence because most recurrences do occur in the first five years. But she also said, in not so many words, that reaching the five-year mark doesn't mean I'm "home free."

Like all of us, I think about every symptom and ache, but I continue to try to just live my life. I have two teenagers and I pray every day that I will be here for them for a VERY long time.

It's nice to read about so many no-recurrence survivors ... may God bless all of us (no matter where we are in our journeys) on this wonderful board.

[Debbie L.]

9 years from stage IIIA diagnosis (details below). No Herceptin. I was in the trial but lost the toss. NED since primary treatment.

Debbie Laxague

[Lien]

I'm 6 years out, diagnosed in Jan. 2004. No chemo, no herceptin, but still NED. (I'm assuming the spot on my nipple that will be tested this Thursday is nothing to worry about... )

Jacqueline

[WolverineFan]

I am just one year out, but thanks to all the wonderful people in the medical profession, and on this board, I plan to be here and let everyone know when I hit the five year mark! Thanks for all the honesty, laughs, inspiration and encouragement. And to all my wonderful her2 sisters, as my nearly 10 year old daughter says, you rock!!!

[candlegranny]

i see alot had arimedex. what is that?
I am new to this. foumd lunp myself jsut 3 months after a mamorgram that said i was fine. i am 56 yrs old . have stage 3C. 31 nodes removes 18 positive. 2 in my neck showed up on PET scan are inoperable. starting herceptin and taxetol next week, get chemo every 2 weeks neg for pro and estrogen. HEr2 at 60% or aomething like that
my surgeon told me he didnt expect me to be a breast cancer surviver! this site has given me so much encouragement. Hope I am as blessed as you all are in 5 yrs. praying this will work and i can report NED.. i will get 6 weeks of radiation too

[Jean]

Candlegranny,
Arimidex is an anti estrogen pill for those of us who are etrogen postive who are post menopausal. Since you are negative for estrogen this would not be a treatment for you.

I am sorry to hear that you were dx. - but yes you have found a great group here.
Shame on your doctor for saying to you that you would not be a survivor....maybe it would be better for you to get another opinion. A second opinion by a breast cancer specialist - one who is used to fighting back this disease and winning!

Where do you live...the ladies here can offer other dr. close to your home that you could consider.

Best Wishes,
jean

[Lien]

Hi candlegranny,

Sorry you had to go looking for us and that you have gotten on this rollercoaster you didn't want.

I am always surprised to hear about doctors who seem to be able to predict your outcome. There is no way to know whether you survive or not. I know people who were diagnosed with stage I and who are dying, and I know several people who had stage IV and are still very much alive, even more than 12 years later. So forget about what he said, he doesn't know what he's on about. Statistically your chances may not be so good, but you are not a statistic. You could very well be one of those who beat the odds.

I suspect you are not getting arimidex, because this is hormonal therapy, and as your tumor wasn't hormone sensitive (ER/PR positive) it probably won't help you.

If you have any doubts about your treatment plan, go for a second opinion. Have you had a mastectomy? lumpectomy?

Hang in there!

Hugs

Jacqueline

[candlegranny]

i had a modified radical masectomy of my left breast. the surgeon is the one that said ' in hia opinon' so after a little thought i realized he is not GOd and he dont know my will! I think he is looking at positive nodes. my tumor was 2.7 cm. but hey.. 31 taken out amd only 18 positive that is so much better than 31 positive isnt it? my oncologist told me that since i have no underlying health issues he dont see any reason wny i wont be here 10 yrs from now. God has the final say so; i am so glad i found this site. i found several things on internet.. but this site uplifts me
i live in Ky. fort knox area. i go to Louisville for treatments.
you ladies are awesome. i am so blessed to have found this site.

[Jean]

Welcome Candlegranny...I know you will be here on our site a very very long time indeed. Great attitude.

hugs,
jean

[sherri]

yes 5 years out. Dx in Dec. 2004, stage 3C and IBC, HER2 +++, chemo, surgery radiation and then 1 year of herceptin. So far so good and hope to be NED for years to come.

[tricia keegan]

Thanks for all your input ladies, and it's refreshing and encouraging to see so many posting NED still:)

Welcome Candlegranny, I'm glad you found us and hope so many survivor's here give you hope :)

[Ruth]

Hi Tricia ~
I was diagnosed stage 3 almost 7 years ago next week....so hopefully this will give some hope out there.
Hugs ~ Ruth

[candlegranny]

Sherri you sound alot like me. stage 3c but i dont know what IBC is. still learning. what an inspiration. seems like everyone i talked to was stage 1 lumpectomy and percentages like 96% it would not return but they were not HER2. I am so excited that i found this site. I need to work on my stats at the end of my emails. got to learn exactly what it all means and what i have so i can get it right. I try to be positive but until i found this site i thought Her2 always comes back, so in the back of my mind it was hard for me to plan the future. NOt any more. I cannot exlain the hope I have since this site.

[tricia keegan]

Candlegranny, glad it's helped to read of other's beating this for longer than the Dr's thought initially:)

Btw, IBC stands for inflammatry breast cancer which is very aggressive so Sherri is really beating all the odds! While it's still too early for anyone to say if herceptin has made a long term difference to us, it has certainly helped many of us so far gain more years and recurr less often I think. This is why I began this thread, coming up to five years myself I wondered how many other's out there are doing well, without a recurrance and while this thread is in no way a scientific result I think it's still very encouraging. :) I also have a friend who is a twenty three year survivor, she had an aggressive large tumour and twenty two positive nodes and that was all those years ago. They did'nt test for her2 then so she thinks she was triple negative but does'nt know for sure.

Thanks again everyone, I'll do a summary on numbers tomorrow.

[micheleu]

Tricia, I'm almost 7 years out with 35 pos nodes! you will be there too!!

[tricia keegan]

Michele, wow!!!! Thats amazing and congrats to you and thanks for posting as so many of us find it encouraging to hear from ladies like you:)

Ruth, congrats and thank you too!! :)

[Mary Jo]

5 years for me too. http://her2support.org/vbulletin/images/icons/icon7.gif I was diagnosed June 24, 2005 - stage 2B - 1 node microscopic invasion.....

No recurrence....thank God everyday for the life I now live!

Mary Jo

[tricia keegan]

Delighted to see your post Mary Jo, I also was dx in June '05:)

[Adriana Mangus]

Ann;

Question...How do you figure you are going to be NED in Sept. 10.?..Are you counting from the time you were diagnosed? back in 1995..so five years out will make you NED?

Just wondering, curious...

[tricia keegan]

Our latest tally as of today

Herceptin - 23

No herceptin- 5

Recurrance's - 0

All good news so far:)

Adriana, Ann was dx in Sept '05, so I think she means assuming all is well she'll be five years out then. I've included you in the stats Ann:)

[Carol.hope]

It's been five years this month for me. I remember how desperate I was to find people who had survived bc. I was so thankful to find Christine! Now there are many of us.

I'm grateful for Herceptin! I only got 6 months of it, due to heart problem, but a study or two, including one on the list for the current ASCO convention, seem to show that even a small amount of Herceptin makes a difference! I'm going to assume I got enough!

My chemo brain injury keeps me from posting much, but I so appreciate all you wonderful people and being able to read your posts and hear your encouragement to others.

Five years, and onward!

- Carol

[Linda]

I'm another almost 5 year-er. I'm over 5 from dx, but just under 5 from surgery (I had neo adjuvant chemo.) Stage 3a. er/pr-. Large tumor. NED!
Linda

[Kimberly Lewis]

I keep forgetting when you start counting... diagnosed in 2005. Actually went in for my appointment today all happy thinking I was hitting my 5 year mark. I ended up having a seizure when they were doing my blood draw! 2 of 'em right in a row, now I have to wait to see a neurologist and possibly a brain scan - darn!

[MJo]

I was diagnosed October 28, 2005, so I am looking forward to 5 years this October.

[tricia keegan]

Congratulations ladies, it's great to see so many hitting the five years and beyond!

Kim, fingers crossed for you and sorry you have this little "bump" to sort out but I'm sure you'll be hitting that five year mark too!!:)

[Connie Jean]

So excited to see this poll. I am 5 years cancer-free. Had adjuvant Herceptin and Tykerb. Such miracle drugs! Love my life.

[Christine MH-UK]

Six years and no recurrence. Received herceptin a bit later than normal.

[AlaskaAngel]

Hi, sorry not to have responded sooner -- I read the initial post and had thought that only those who received trastuzumab were included in the tally. And as a Stage 1 I do find it hard to post about still being "NED" because it is so unfair that so many others never even got the chance to "start" from an early diagnosis. At the same time, I do post about it to encourage people who are just terrified about being diagnosed at all, because maybe if they know that someone diagnosed as "high-risk" stage 1 with high-grade HER2-positive disease, and who has NOT even had all the treatments available now and is still NED, they will feel a little less panicked.

AlaskaAngel

Dx January, 2002, still NED
CAFx6 (4 weeks apart, not 3, due to declining blood boosters)
Radiation
tamoxifen x 1 3/4 years as a strongly ER+, PR+
No taxane
No trastuzumab
No AI
Use of nightly melatonin, freshly ground flaxseed, diet and exercise in hope these things help with prevention of recurrence.

[tricia keegan]

Thanks everyone and I'll do another tally tomorrow!!

Alaska angel, thanks for posting too. It's obviously not an official poll but thought it would give us all an idea of how we're doing .
Its wonderful to know you're doing so well despite the lack of herceptin and I'm glad to add your stats to the numbers to give us an even outlook!
Many congrats to you on doing so well, and thank you again to all who have posted:)

[Soccermom]

5 1/2 years NED. received 1 yr weekly Herceptin.. began 6 weeks after completing AC/T dose dense (was JUST approved for early stage Her2+)

[tricia keegan]

Thanks again to all who posted here.

Our new total is-

29 Had herceptin/ no recurrance to date

6 had no herceptin/no recurrance.

Thanks to everyone !

[tricia keegan]

Thanks again to all who have posted here, our latest tally is-

29 Had herceptin/no recurrance

6 Had NO hercpetin/no recurrance

Tricia :)

[kitty9]

Hello! I am now five and a half years out and still NED - Diagnosed Oct 2004 with stage 3c - 19 positive nodes. I had lumpectomy,chemo,rads and two years of herceptin. Honestly, I didn't think I'd get this far. You can too! Kitty 9

[imdavidson]

Hi Tricia,

Yep, five years out here too. I was able to get Herceptin through a clinical trial at UCLA and I am so grateful.

All the best to you.

[Kimberly Lewis]

by the way.... The neurologist reports that my MRI was clear and had a couple guesses why the seizures but that was it! no news is good news I guess!

[DiDi70]

Hi Kim,

That is wonderful news! I am so glad to hear that your MRI was clear.

Have a really wonderful day.

DiDi

[tricia keegan]

Thanks for adding to our list Kitty, Idelle and Kim and many congrats to you all:)

I'll update shortly as tomorrow I see my onc for my mammo results and if clear will officially be in the five year club too:) x