For early stage patients who are...

[Jean]

UNCERTAIN OF HAVING TREATMENT PLEASE DO LOOK AT THE FOLLOWING ARTICLES FROM 2008 SABCS.

http://www.posters2view.com/sabcs08/view.php?nu=SABCS08L_269
[702] Poor survival outcomes in HER2 positive breast cancer patients with low grade, node negative tumours. Implications for trastuzumab therapy?

http://www.posters2view.com/sabcs08/view.php?nu=SABCS08L_444
Significant increased recurrence rates among breast cancer patients with HER2-positive, T1a,bN0M0 tumors.

[Laurel]

Yes, Jean, I have seen these results. There still is the nagging question of whether we need the full chemo-quotient or can get by with just Herceptin, especially with highly hormone positive tumors where the efficacy of chemo is questionable. Does the associated risk of leukemia and heart disease with ACTH outweigh the benefit, if indeed there is a benefit of chemo for someone with my pathology, of this protocol? That remains to be ascertained. I chose the ACTH based on current knowledge, but always felt it would be proven to have been over exposure, especially with the AC. I suspect in the future we stage 1 a,b'ers will be subjected to a taxol/herceptin protocol only. Again, time will tell!

Ya know I always tell my clients I'd be dangerous with a crystal ball when they want me to predict the future. Sure could use one of those....

[Jean]

Laurel,
It is unfortunate that the data is just not there to prove or negate the chemo portion...it would be wonderful if the (hopefully the near ) future will offer us the data we all want to hear.

While an A/C chemo has been a concern along with herceptin there is the topo112a test to assist in making a chemo decision of A/C.

I have found that change is slow in coming. Just recently I saw my onc. who said, "You know that you saved you're life"?

At the time of my dx. 2005 chemo/herceptin was not offered for early stage small tumor patients. I continued to pursue as my gut was not buying that my small aggressive tumor should just have an AI treatment.

Today as I read these posts from the BCS my heart is deeply sad and broken....for those women who had small tumors and on that basis was not offered a better treatment. I knew very little about bc in 2005 was not even aware of the subtypes, her2 etc. until I was dx.
I only knew to have my yrly exams as early detection helps. Then when I was dx. I was blown away by the behavior and reaction of many top onc. who treated this nasty dreadful disease at the early stage with the attitude, of "you are lucky you caught it early, now just go home" just like that...you had surgery, you had radiation...and if possible AI...HER2 was not even part of the equation...How terrible is that?

Her2 being a aggressive bc - after my research about HER2 and hitting this site I knew for certain my treatment was wrong.

It is very distrubing when new memembers join who have even larger tumors who are micro node positive are terrified and unsure of treatment. It is heart breaking!

We need to offer all information that we can along with our knowledge and wisdom.

I often think, "what is worse the disease or the cure?"
We do know that we reduce our odds of recurrence with treatment...does not haveing treatment do that?

These are difficult issues we all face.
Jean

[Laurel]

Well said, Jean, and it's so true for us early stagers. We simply must lead with the knowledge that exists presently. I tried to get the topo 2 study, but my onc was not agreeable. I chose the ACTH because of statistics and because I challenged my young, female oncologist by asking her to place herself in my shoes and then tell me what she would do. Without flinching she said she'd pick the ACTH over TCH, and absolutely would do chemo followed by Herceptin. At my last visit she cited the studies you referenced in your lst post to this thread.

At the end of the day, I felt I needed to go as aggressive as possible so that should I (God forbid!) recur I will not be filled with regret. No "if only s" for me. I would encourage all early stagers to follow our lead and go the chemo/Herceptin route and let the chips fall where they may. I understand the temptation to resist chemo. I certainly tried to avoid it! However, I am at peace with my decision and will remain so come what may. I do hope the protocol will become one where there is less chemo, or no chemo recommended to be eligible to receive Herceptin. It would be nice to have chemo in early stage hormone +, Her-2 + BC be determined to not warrant the risk and therefore not a part of any future protocol. More research is needed for that to occur, and perhaps based upon that new research chemo in conjunction with Herceptin will remain the protocol of choice for us.

For now, in the adjuvent setting chemo with Herceptin is the best bet in my opinion, and apparently in the opinion of most oncologists. This is an excellent thread, Jean, and I thank you for starting it. I pray it helps some early stage 1 gals/guys determine their treatment choice.

[swimangel72]

I feel very conflicted about my course of treatment. My oncologist put me on 4 months of Navelbine and Herceptin for a year because he didn't want to damage my heart unnecessarily with the stronger drugs. I feel like I'm in my very own drug study - I don't know anyone else who has ever had this treatment. My onc said that Herceptin has been proven to work as long as it's given with ANY chemo........a second onc agreed with him since my tumor was Stage 1 and Grade 1 and since I had a mastectomy. Deep down in side, I believe that even Herceptin alone would work just fine for someone as early stage as me..........but still I worry because even the manufacturer of Herceptin doesn't suggest this kind of treatment. But I'm not permitting this worry to take over my life.......I'm looking forward to being finished with my year of Herceptin in April - then to keep taking the Arimidex for the full 5 years. I hope and pray I never get a recurrence or new cancer.

[MJo]

Thank you. This is sobering data. I have been off Femara for one month due to high liver enzymes. Will get results of my latest test next week. Hope I'm back to normal. Have not worried much about whether or not to go back on an aromatase inhibitor, since I was T1b. Now I will definitely insist on a talk with the oncologist.

[Jean]

MJo have been thinking of you and you're tests results.
Sending you best wishes for great news.
Please let us know and update us.

Hugs,
Jean

[karen z]

Jean,
Thanks very much for posting these sobering but important data.
karen

[mom22girlz]

I just feel sick when I read this..... I really like my oncologist, but he did not feel chemo or herceptin were warranted for my case. I am stage 1, triple +, with a very small tumor but, Her2 was 3+. I was 47 when diagnosed, pre-menopausal. When you said, "you are lucky you caught it early, now just go home" just like that...you had surgery, you had radiation..." it rang so very true for me. I feel like I am over reacting if I have any fears about my cancer coming back. What do you do if you didn't receive more treatment at this point? Thanks for reading. Susan

[Becky]

Dear Susan

I am sure you have read many of my posts. Many, many times I have reiterated, just because a woman is Her2+ does not imply that she should will automatically recur.

My onc told me that recurrence rates for Her2+ or triple negative is higher than the plain old hormone positive type and that I should subtract 10% off the stats on Adjuvant online. A woman with your stage would probably have a NON recurrence rate around 95%. So, let's say you have an 85% chance of not recurring (because of Her2+).

Also, things like exercise and eatting right also reduce your recurrence rate. And... from your "Join date" (on this board), you are already past the first two years where recurrence rates are the highest (and recurrence means local recurrence too - not just distant and that is part of the stats too. Not that we want any recurrence at all but local and distant are in the recurrence rate). So, you are getting more and more in the safety zone every day.

Not everyone needs additional treatment. The problems surfaces in the question of "who does" need more treatment than just surgery, surgery/radiation, surgery/rads and chemo? In the future, there will be more tumor testing to help answer these questions so that nobody is over treated.

Right now, you are doing well. Keep on walking and drinking that green tea and taking your Vitamin D3 supplements and ENJOYing those two girls. Things are going good for you and the odds are in your favor that they will continue to be.

[AlaskaAngel]

Susan,

A very relevant factor that has been pointed out many times by a variety of people and articles is that the probability that the chemo would turn out to be the right chemo for the particular cancer and body that one happens to have is limited. Having received chemo (and even in some cases Herceptin) may not have made any helpful difference. Add that to the number who never needed any treatment at all in the first place. And then add to that the unknown number for whom chemotherapy may actually promote their particular cancer.

AlaskaAngel

[alicem]

Susan,

I think that you would be wise at this time to get a second AND third opinion from an oncologist rather than relying upon us. Don't get me wrong, the women here I have found are intelligent and extremely well informed. That being said, I don't know how many of us are MD's. As I have researched Herceptin, I realize that a lot has happened in the last 2 years since you were diagnosed. It wasn't until November 2006 that the FDA approved the drug for women with early stage breast cancer with Positive nodes that were Her2+++. It wasn't until January 2008 that it was approved for women with early stage breast cancer with Negative nodes. The clinical trials and studies had not been done to support it any earlier. Your oncologist might have given you sound advice, based on what was known in 2006, but it might not be sound advice now. I looked for earlier posts and found the following:

how many started out with DCIS with or without microinvasion

You might find the second post by VaMoonRise interesting. Her case sounds similar to yours, having had just the lumpectomy in 2004, but 2 years and 9 months later, cancer was found in her liver during gall bladder surgery. I am not trying to scare you, because you very well might be one of the lucky ones where it really was caught early enough. The side effects of Herceptin are very few. If you could even get just Herceptin, without the chemo, that might be a good option.

You can read my signature for details of my situation. I am Stage 1, triple positive with a tumor of 2 cm - (at its largest dimension the path report said). I don't think 2 cm is necessarily considered small, even though it is about 3/4". I asked my oncologist what my odds were if I did nothing more. He told me I had a 34% chance of a distant recurrence (i.e Stage IV) of cancer. Technically, the odds are in my favor by 2-1 of not having cancer return. I did not like those odds however, so I opted for the chemo/herceptin treatment. I feel that I was fortunate in that my mastectomy surgeon strongly recommended that I have the Oncotype DX test - it came back with a score of 60 - and it confirmed the odds of a 34% recurrence. At the very least, you should see if your oncologist would recommend you have this test. If you score above a 30, then you are at a high risk of a distant recurrence, and the chemo and herceptin should be something you should consider. I know there are risks to chemo, but when I weigh those risks against the risk of a distant recurrence, it was an easy decision for me to make.

I am keeping you in my prayers and hope that the answers become clear for you. The last thing you want is to constantly be looking over your shoulder and worrying, or having something happen and regretting that you didn't do all you could do.

Sending you warm hugs,

Alice

[Becky]

Dear Alice

I am very sure that Susan will not be able to pursue additional treatment over 3 years after surgery and radiation. Susan is not a newly diagnosed patient. After one year or so, what was done is done.

Kind regards,

[karen z]

Susan,
I agree with Alice that you should seek second/third opinions from the best rather than rely on the conflicting opinions of individuals on the site. It never hurts to ask and to gather more information- increased knowledge from excellent docs can only help- always. You might start by finding out who some of the docs were that DID insist on chemo/Herceptin for early stagers in the earlier days (05/06) and seek their opinions at this point.
Best,
Karen

[Jean]

I also have to wonder....are there any trials on late herceptin? Why not reach out to UCLA and ask?

Best Wishes,
jean

[Jean]

Susan,

I do not know the details on this phase 11 trail of delayed herceptin, I have copied the link to UCLA and there is a contact number, hopefully you can get some answers.

-Best Wishes,
Jean

http://breastcenter.ucla.edu/body.cfm?id=56&oTopID=53

[harrie]

Very interesting thread. Thanks for posting it Jean. One thing I wanted to add in regards to the high Oncotype score. The higher the score is generally indicative of the greater possiblity that the chemo tx will be effective.

In the future, this may also help clarify treatment decisions.
New genomic test can personalize breast cancer treatment [Washington University in St. Louis / Summary]

[AlaskaAngel]

It will be interesting to find out what factors are involved in the decision to do late Herceptin.

From the basic description, this trial doesn't evaluate the usefulness of treatment with late Herceptin, but rather is designed to figure out why patients who have completed any of the many different variations of treatment without Herceptin would accept late Herceptin.

AlaskaAngel

[Hopeful]

It would appear that the study has been terminated due to lack of accrual:

http://clinicaltrials.gov/ct2/show/N...m=Her2&rank=72

Hopeful

[karen z]

Susan,
I would still contact UCLA for advice and still get those second and third opinions from the best. Again, being informed as you can be is always a safe route.
Take good care.
Best Wishes,
Karen