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[stephanie59]

Wow! I found this site completely by accident through an article about Herceptin in Woman's Day magazine.

My story is a little different. I was diagnosed Stage 2 (one lymph node) breast cancer that was HER 2 positive (3+) almost 8 years ago at age 51. Although at that time they did not routinely test for HER 2 I got lucky.

After research showed me how aggressive this kind of cancer can be I went on the hunt for the right oncologist.
After three who blew the HER 2 diagnosis off and offered me routine A/C Chemo treatment, I found Dr. Thomas Shiftan (currently an active member of the HER2 community) who proposed a very aggressive program of four A/C treatments followed by 4 Taxol treatments. I also took Tomoxifin for five years and am now on Femara (the tumor was also +1 estrogen positive).

Herceptin was finishing clinical trials for women who had recurred and had just been FDA approved. However, as a newly diagnosed cancer patient, I was not able to receive Herceptin as part of my treatment. Later, when they begin clinical trial for newly diagnosed patients, I was not eligible because I had already received chemo. Since I believe it is a real miracle treatment, it has been very frustrating to me not to be able to get it.

I don't know any one else with my type of cancer. Even though I have been cancer-free for 8 years and my oncologist is very positive, I need some feedback from other HER2 survivors.

Is there anyone out there like me who has survived HER2 positive cancer without Herceptin? If so, how long has it been? Does anyone have any idea if an 8-year survival rate indicates that I am out of the woods?

Thanks for letting me share my story. I hope to hear from some of you soon. Stephanie
http://her2support.org/vbulletin/images/statusicon/user_online.gif

[Shell]

Stephanie-


I don't know the answers to your questions, but welcome to the Board and may you enjoy continued NED...

Shell

[Lolly]

Hi Stephanie, welcome! I know we have at least one member, Alaska Angel, who's several years out from diagnosis and currently NED from early stage Her2+ with no Herceptin (for the same reasons you cite). Click on "Members List" above to find others with a similar dx. as your's. I am sure it's extremely frustrating not to receive Herceptin now, but I'm so glad you found us as you will be able to post your concerns and get lots of support and advice from those of us who've "been there, done that".

<3 Lolly

[Joe]

Stephanie,

Welcome to the group. How have you escaped us for the past few years? Christine, the founder of this group, lives in Carlsbad and was also treated by Dr. Shiftan. Dr. Shiftan is also a Board Member of our organization.

Have you ever read "HER2 - The Making of Herceptin"? It tells the story of Barbara Bradfield who was recruited for the Phase I clinical trials. She received Herceptin for 3 months and absolutely no more after that. She is still cancer free
almost 15 years after the trial and living well in Oregon. Here is her story as it appears on our website: http://her2support.org/story1.htm

On the other hand, Ms. Ginger Empey of Bakersfield has been on Herceptin over 11 years and has no long term effects other than being in complete remission.

Dr. Slamon told her 2 years ago that in all likelyhood she could discontinue Herceptin and remain cancer free. She chose to stay on Herceptin.

Warmest Regards

Joe

[Becky]

Dear Stephanie


I attended 2 different conferences this year. The first was the YSC (Young Survival Coalition) in Denver. There, I met so many women (most under 40) who were HER2+. Three women in particular were survivors like you (including the YSC President, Randi who is over a 10 yr survivor and had the same treatment as you did - which, she said at the time taxol was "out of the box). One of the other women said she was also ER/PR pos and refused tamoxifen and she is obviously fine.

Your long term prognosis seems very good. The first 2 yrs beyond diagnosis are the most vunerable. This is especially true if you are hormone negative. It would be rare to recur so far out but there is a remote possibility that it can happen so you do have to be diligent. You have the exact same situation as me (with one node and ER pos) so you are an inspiration for me (2 yrs out) but I was able to also get Herceptin because of timing.

The second show I went to was this year's ASCO. There was a paper given on the benefit of following AC by taxol. This study separated out looking at that benefit by pathology. Her2+ women (regardless of hormone status) and triple negative women (not ER, not PR, not HER2) gained GREAT survival benefits by adding taxol to their treatment protocol. So.. your aggressive oncologist did a great thing to you by giving you the drug. Taxol does nothing in regard to survival benefit to women who are ER/PR positive only (therefore, a testy agrument occurred during the presentation of this paper - some oncologists attending the presentation loudly debated why the drug is given to women who don't benefit from it since all node positive women, regardless of pathology, now receive 4 taxol treatments).

You will not find many women like you on this board probably because they do not need the support and aren't the type to want to give support to others. But I encourage you to stay as you can help many of us "graduate" to your cancer free survvorship. You can show many that Her2+ women can and do do well.

I am glad you have found us.

Kind regards

Becky

[AlaskaAngel]

Believe me, Stephanie, we are all glad to hear from you...! Lolly, Joe and Becky covered it darn well. I admire your gutsy approach to your situation at a time when not a lot was widely known about HER2 -- and only wish I would have been that smart... I not only did not get the benefit of Herceptin, or even dose-dense, but I did not get any taxane as part of my treatment. Yet to encourage you, I continue NED at almost 5 years out. The primary reason you are one of the isolated few who are so far out from treatment may not be, as you might fear, because so many have recurred or died, but simply because testing for HER2 was so sporadic and not very reliable, and certainly not standard until 2005. They are probably "out there"; they just don't know they were among the 30% HER2 positive.

Do I have anything to add to what the others said?

For one, since there is a question as to whether chemotherapy ends up just protecting those parts of us that are outside the blood brain barrier, and we seem to be somewhat vulnerable to ending up with brain mets, consider having periodic MRI of the brain so you can catch it early rather than late. One very fine thing about this board is that there are some people here who clearly have benefitted from doing that.

For another... although I have diffiiculty comprehending some of the technical language you will find in posts here, I would recommend you try too to understand RB's, Becky's and Lani's posts and comments. (I personally lean toward organic/vegetarian, as well.)

Of the 3 onc opinions I received in 2005 regarding adding Herceptin now, 1 was opposed, 1 was willing to authorize it, and 1 was neither supportive nor opposed. I have not yet had Herceptin.

RobinP is someone who was also in our category, and her past posts about the FinHer trial (shorter use of Herceptin) are worth reading also. She did choose to do "late" Herceptin.

My personal interest at this point is in the development of better analysis of the tumor for indicators for recurrence.

Thanks again for sharing your story.

AlaskaAngel
HER2+++ (not yet FISH'd or CISH'd)
ER+
PR+
T1c
dx at age 51
Lumpectomy, rads, tamoxifen for 1 3/4 years, Arimidex

[MJo]

I am thrilled to read that you are an 8 year HER2 survivor without Herceptin. I got diagnosed in late 2005 around the time the time the Herceptin story broke. When I started reading about Her2, I felt I was doomed. Your story gives me hope that I will also be a long-time survivor. I want to die in my bed when I'm 99 because all my parts have worn out!!

[chartermom02]

I was diagnosed in October 2000 with Stage 1, ER+/PR+, Her 2+++ IDC; tumor was 2 cm and Grade 3; had 4 A/C but no Taxol due to being node negative; no Herceptin of course back then; also did 35 RADS; 3 years and 10 months of Tamoxifen and am currently on Arimidex (since 11/04) - currently NED; having my annual mammogram and ultrasound next month; as well as a breast MRI to follow some little thing they found about 8 months ago - it's been biopsied and pathology was benign; follow up MRI in April again showed it but it was smaller and less enhancing so they're leaning toward a benign abnormality but getting the MRI just to follow for a while.

My biggest fear about recurrences will be AFTER I'm done with Arimidex; I feel it might just be delaying the inevitable. In the past, recurrences were "quicker" - within that 2 year period - but that was before all of the hormonal therapies we have now. I hear alot about recurrences in the 7th year after diagnosis and that's about 2 years after most people end their therapies. Just my silly way of thinking about things at times!!

Gloria

[Joe]

Stephanie,

I neglected to add that Christine was first diagnosed in 1990 and did not have a recurrence until June 1999. Of course there was no HER2 testing in 1990, but the assumption is made that she was HER2 positive all along.

Regards
Joe

[RobinP]

Welcome Stephanie! It is so good to learn of a long term her2 survivor, well beyond 8 years. You did have aggressive treatment, and I hope you never relapse. I understand your Herceptin concerns.

Last Nov. I had the same issues when I learned about how wonderful adjuvant Herceptin was in early stage her2+ bc. Then I was three year post treatment. But I ONLY had CMF, a crappy her2 chemo, for a small invasive her2+, one positive micro metastatic node and positive lymphatic invasion.

Eventually, I consulted with an oncologist from Yale that was an expert and researcher in her2 pathways. He guided me to have my tumor specimen analyzed for various pre-clinical markers for indicators of reoccurrence and indicators of Herceptin response. As a result of those studies on pTen, her1, her2, her3, her4, IGR, and TAB250, the oncologist encouraged me to do 9 weeks of adjuvant Herceptin. The 9 week regimen was something done by the FinHer study with just as effective efficacy and no cardiac risk in three-four year follow-up.

I think your situation is different and more unique than mine. For one, you are EIGHT years post treatment! That certainly says something. Also, you are hormonal positive. In the HERA study, hormonal positives did not relapse as much as negatives in the first few years of follow-up. The indication was NOT clear why. But researchers ONLY speculate that hormonal positives have a different natural history and MAY relapse much later. I certainly hope more will be known in time as the various studies mature. Until then, too many unanswered questions. Whose in the woods, whose out of the wood, who knows?

[RobinP]

Just wanted to add Good luck to you! Keep posting too, nice to have you here.

[Dianaq]

Hi Stephanie,

I too am so glad to hear of your 8 years. I have just decided to not have chemo and join a clinical trial that involves, Herceptin, Tamoxifen, Ovarian shutdown and Radiation. I know alot of you feel stongly about taking Chemo for her2+ but I am still not all that convinced.

[stephanie59]

Diana: I understand how you feel about the chemo. It is not a great experience. But I can tell you that it does kill fast growing cells and that is exactly what HER2 is all about. Even if you are node negative, cancer cells may already be into your blood stream and I truly believe the only option is to nuke 'em. Before Herceptin, AC and taxol was the recommended treatment for HER2+ tumors. I believe Herceptin is a wonder drug, but it seems clear that it works best in conjunction with regular chemo treatment especially taxol. I have no lasting ill effects from the chemo and in fact felt almost 100% within a couple of months after the end. I am not really clear as to why you are so against chemo, but I do know that HER2+ cancers need all ammunition available if you want to survive. I believe I survived because my oncologist gave me the most agressive treatment available and even though I often felt like the treatment would kill me before the cancer had a chance, everytime I went for chemo I knew those nasty little cells were being zapped. Talk to some more survivors before you make a totally final decision. Good luck to you whatever you decide. Stephanie

[Joannie]

Stephanie:
I just hit my three year mark as NED. I had a 3.3 cm tumor, which was removed via mastectomy in April 2003. Finished chemo (AC/Taxol) in August 2003, dose dense. I just missed the "boat" with Herceptin. I knew it was the ticket when I started chemo, but I was told I wasn't eligible. I have battled myself constantly about taking late herceptin. I ended up getting 4 opinions. Only 1 recommended it. I just couldn't decide, so to date, I have not taken the Herceptin. I guess at this point, I have put it to bed. I worried about it every day for 3 years that I didn't get it. I wish there was a clear cut answer on it, but it doesn't seem there will be for the small group of us in this situation. At any rate, I'm doing well and I wish the same for you! Glad to see your post and welcome to the board.
Joannie

[RobinP]

Dianaq I wish you good luck with your clinical study on Herceptin without chemo. I think we need to know more about how Herceptin without chemo works in the adjuvant study so I thank you for your participation. Certainly, chemo is not the answer for everyone for various reasons.

To me, Herceptin is what is really changing the ball game for Her2 positives. Nothing else has increased survival like it in the adjuvant setting. Even when H. was used later, after chemo in the HERA study, it was still very effective at decreasing relapse. So I don’t see why it still would not be effective alone, without chemo. In fact, in the HERA trial many kinds of chemotherapy were used with and without Taxol, but the Herceptin study group still faired much better than the controls NOT on Herceptin. Further, Becky reported from the 2006ASCO that use of late H., far as three years out from treatment, was having early signs of H. benefit. To me, that says a lot to support your clinical study.



The only thing I would suggest is that you test your tumor for TOPAII since this is the one case that I would strongly recommend AC chemo for her2+. Take care.

[Kathy T]

I was initially dx. 22 years ago at age 40--of course there was no HER2 testing being done then--I receved aggressive chemo at the time,also Tamoxifen for 8 years--and did not relapse for 19 years at which time I was retested and found to be Her2+++--I have received Herceptin, estrogen blockers and bone radiation since then and have been resonably maintained with that regime.

Kathy T

[stephanie59]

Kathy: are you saying you were cancer-free for 19 years and then recurred? Do you know for sure that it is a recurrance or is it a whole new cancer? Where did the cancer recur? Not to say I won't be happy to be cancer free for 19 years, but I am a little worried about recurring and am talking to my oncologist about being a bit more proactive. Aside from yearly visits, blood work including tumor markers and a mammo, I have no other tests. In fact, I have no idea what most of you are even talking about. Several years ago I had a MRI and a bone scan but that's it. My oncologist prefers to depend on the blood work as an indicator of something going on. He feels the scans etc. are a waste of time and tells me the blood work will show something sooner than the scans...What do you all think? Stephanie

[AlaskaAngel]

I have at least 3 reasons for going along with the general consensus here about scans.

First, for far too long the HER2s were not separated out and treatment basically was lumped in with whatever testing schedule was used for the wider range of all bc, and I think to some degree it is taking a while for oncs to wake up and get with more frequent imaging for HER2's. Second, the problem with not having more frequent imaging is that if a recurrence is again strongly HER2 positive, it is a faster-growing bugger. Third, from what I've seen here, late recurrences frequently are brain mets (and these do include people who were originally diagnosed at stage 1). If those aren't addressed when they are small they are much harder to deal with.

Using the "Search" option at the top of the screen, enter any distinctive words about whatever it is you don't understand, and lots of past posts will come up that you can read and try to interpret. Lots are very technical, but follow the discussions about each post to see what others had to say too.

A.A.

P.S. I should say, there are those here who also were diagnosed originally as Stage 0 who recurred as well.

[RobinP]

My grandma relapsed with ocular metastasis after 19 years NED too. I don't know what her tumor makeup was as this was years ago that she died. I might add too that the only treatment back then was radical masectomy which she did have.

[Bev]

Hi Stephanie.

I vaguely recall a graph of time out to recurrence. It rose and peaked at 2 years but then had a little uptick at 20 years.

At 8 years out, I would guess your chance of recurrence is only a few percentage points higher than someone who has never had cancer to get it.

So don't stress too much. Keep educating yourself and follow up everything with the docs. My onc doesn't scan either unless your'e symptomatic. She would though if I had my data and insisted on it. Take care. BB

[Jean]

Stephine,

Welcome to this wonderful site. So glad you have joined the site and it is wonderful to hear that you are 8 yrs. out! Your history and updated information will be appreciated by all on the site. This is a fantastic group and we truly learn so much from each other. Welcome Sister!

Hugs,
jean

[Vanessa]

Hi Stephanie,

I would also like to welcome you to this site and wish you all the best!!!!!!

[stephanie59]

Thank you to all who have so kindly responded to my request for feedback. Finding this website and listening to all of you prompted me to call my oncologist today and have a chat about being more proactive regarding recurrance. I only see him once a year now and like Bev's onc, he feels scans are not as reliable as symptoms. Although he did not have data regarding future survival rate at 8 years out, he did tell me that there is only a 2% recur rate for HER2+ at 10 years. So my husband did the math and it looks like I have over a 93% chance of making old bones. I did ask him about late use Herceptin and he did not think it was necessary. Even though I believe Herceptin is a magic bullet and I advocated for it for years without success, he made a comment that made me feel less anxious: "You know, Stephanie, many HER2 women have survived without Herceptin".

I am really glad I made this call because it got him thinking about other issues I have. My mom had cancer at age 62 (and died at 78 from CHF) which did not put me at higher risk, but I had a cousin on my mom's side who was first diagnosed at 40 and died in her early 50's. So he is going to have me tested for heredity genes just in case. He told me he is more worried about me getting cancer in the other breast than he is about a recurrance.
Not sure if that made me feel better or not :)

Anyway, it got me thinking about how important it is to be able to talk to your oncologist and to feel ok about calling to ask questions even 8 years later. He always returns my calls and never makes me feel like he is rushing to get off the phone. If any of you out there do not feel ok with your onc, I urge you to find a new one. They and the nurses become a serious lifeline to survival. When I went from seeing Dr. Shiftan 4x a year to 2x and then once, I was really scared. It's like when chemo ends and even though you are so glad, it's still scary because you no longer have the feeling that the bad cells are getting zapped and what if they aren't all dead???!!!

Anyway, sorry for being so chatty. All these years I haven't really had anyone to talk to about all this so I guess I'm venting 8 years of concerns. Bless you all, Stephanie

[Cathya]

Stephanie;

Welcome and thank you for posting. Most importantly, congratulations on 8 years NED. I am finding your posts and the replies so comforting and encouraging. I have taken herceptin but am one of those who suffers with heart issues and it looks like I will be taken off it again. Now I realize that even the amount I received is a wonderful help and perhaps all I need. It is amazing to me that when I was diagnosed in 2004 with a 3 cm tumor I wasn't even going to get chemo as I was node negative. It was only after a second tumor was found in my clavicular node that things changed for me and I was given AC and Taxol. I have often wondered how many are like me.....her2+ with spread in a different direction than expected. I was only tested for her2 at that time because I requested it after reading so much about herceptin. You were so ahead of the game back then!!! Congratulations.

Best regards,

Cathy

[RobinP]

''Unlike ER-positive breast cancer, in which events are strung out over the course of 10 to 15 years, in HER2-positive breast cancer most of the events occur in the first five years and a lot of them occur in the first couple of years. That is part of the reason why, in each of these studies, we saw a dramatic benefit early on, even in the first year (Perez 2005b; Piccart-Gebhart 2005; Romond 2005)"

Survival after five years for her2+, er-, pr- is a milestone, not a guaranteed cure, but a certainly a positive milestone.

[Carolyns]

Stephanie,

I was diagnosed in 89 and received CAF. Then in 98 in the other breast 6 months after the birth of my son and had a mastectomy with no further treatment due to the early stage of the disease. Now again in 2006 with mets. treatment- Gemzar, Herceptin, Zometa.

The second and third occurences were not identified through follow-up from my cancer doctors rather through the insistence of my OB GYN. In fact, althought I was told (and knew) that it is not good to have BC twice before forty, I was never told what to do about it. Last year when I presented with two lumps above the right implant (8 years out) both my surgeon and onc. said it was nothing. I was so happy. Then my OB GYN insisted on an ultrasound. She said, "you know your body and you're getting a test to prove whether or not it is nothing". That is how I was diagnosed and why I am in treatment today.

Through all of this I have looked and felt great. I tried to push my doctors to follow me annually after 5 years. My doctors have always commented on how fit I am and how great I look. I don't think that they beleived that I would ever get sick and neither did I. I pride myself in taking good care and although I was not worried I felt that if the general population finds it normal to go for an annual check-up then I should see my BC doctors once per year too -even beyond 5 years out.

I wish than no one ever got cancer a second or third time. I also wish that I knew the appropriate follow-up after 5 years to make sure that if / when it did happen to someone else that they would have the chance to catch it sooner than later. I don't think my BC doctors knew (other than the tumor markers..read down for that info.). I was told later by someone that my OB GYN's mom had a recurrence of BC localized to the chest wall many years out from her original diagnosis. Thankfully hers was caught early and I believe that she has done quite well many years out. I beleive that my OB GYN's personal experience and knowledge saved my life twice.

Regarding blood work. My GP began doing my blood work and markers began to rise but he missed them. I guess no one looked at the blood work once it was sent back from the lab and then over to the Onc. Water under the bridge now but at some point (unsure when) the markers began to rise.

I hope that you never have to deal with BC again but I know that it is wise to stay alert about your health and enjoy life to the fullest along the way.

Carolyn

[Kathy T]

Steph,

I did not recur for 19 years--then to bones and lung--It was the original breast cancer as they did a bone bx. at the recurrance. I am amazed too, but it happens.

Kathy T

[Susan Rankin]

Hi,

Thank you Stephanie, Joe, and Becky for your reply. I feel so much better after reading your message.

I had a lumpectomy in August 2004, 1 cm., sentinel node was positive, Her2+++, Er+, Pr+. I had Adriamycin x 4, Taxol X 4, and Cytoxan x 4. 33 Rads, and one year of weekly infusions of Herceptin which my last one was June 20, 2006. I am now taking Femara. I fell into the window to get Herceptin as I had just finished chemo in March.

I am happy to hear there are survivors five years out.

Susan