Need information on early stage adjuvant herceptin

Hi,

I just heard about the approval for herceptin for early stage disease. I just saw my oncologist in Aug. and he informed me that I only had a 4mm invasive her2+++ and that I did not require further treatment with Herceptin. I was diagnosed and treated with chemotherapy in 2002. He said that since I was node negative or consider node negative because my first lymph node only had a micrometatsis-less than 2mm big, I did not need Herceptin treatment. Additionally, he said my risk of reoccurence was so low due to only a 4mm her2+ invasive that I did not need Herceptin. Further, he said the risks out weigh the benefit in a case like mine. I trusted him in Aug. and put Herceptin out of my mind, believing that he would know since he is a breast oncologist at the esteemed Dana Farber Cancer Institute in Boston. Again, he considers me node negative with very small invasive her2+ disease and does not feel I need the Herceptin. So at this point I am still inclined to listen to him. However, I do worry at times if indeed I should be taking Herceptin.

If anyone is in this particular boat with very early stage disease that is node negative, and has been informed that Herceptin is indicated, please let me know and the reasons why.

Thanks,
Marie

My disease particulars
dx. 2002 with 4mm invasive her2+, 1 sentinel node + for less 2mm rest of nodes clean.
tx. masectomy with 6 months of CMF
NED since

Also I just pulled off the below critera from the Herceptin after adjuvant chemotherapy in Her2 positive bc. trail which is listed below. It appears that I do fall out of the criteria as my node was not positive by traditional standards. Again, only a micrometatsis and my invasive was less than 1 cm.


The hormone-receptor status of the tumor was determined and the tumor tissue was accessible for central review. Eligible patients had node-positive disease (irrespective of pathological tumor size) or node-negative disease (including only a negative sentinel node) if on pathological examination the tumor size was larger than 1 cm.


Marie

[uma]

Marie (Guest)
To arrive at a decision in your case is very simple. All you have to do is get a Bayer Her2 serum test done. Your score in that test should decide if you need Herceptin or not. For more on that test, please visit Gina's excellent descriptions of it. You can access all the postings of Gina from the the Member's list.

You have nothing to worry, as far as I can see from my experience of adjuvant Herceptin for Her2.
Uma

[Petesmom]

Hi Marie,

I had a 7mm IDC ER+/HER+++ back in March of this year. This was a recurrence (last cancer was in 1998, same breast, IDC 8mm, ER+/HER-, no nodal involvement). My onc said basically the same thing as yours...that the risk of recurrence was very low and the risks of doing chemo outweighed the benefit. I had a mastectomy and my ovaries removed so that I could take Arimidex instead of Tamoxifen. He did say that with those of us presenting with small tumors, no nodes but also having adverse factors such as HER+++ can make it a tough call as to what our options are. Right now, I am quite comfortable with my treatment plan. You just need to really look over your options and decide, along with your doctor, what is best for you.

Good luck,

Petesmom

Hi Ladies,

Thank you for your kind and helpful information. I will check my serum her2- I appreciate that suggestion. Also, thanks for your gentle responses and scarring me that I haven' had Herceptin yet.

Marie

Thank you for NOT scarring me ladies. Excuse me for forgetting teh NOT.

Marie

[suzan w]

my dx: invasive lobular, bilateral mastectomy in June 2005-7mm tumor, node neg., her2+, ER+,PR+...all scans neg (bone, CAT). had oncotype DX test done and it showed me at a high intermediate risk for recurrence. Onc. recommended 6 rounds of AC (had many side effects so only did 4) and am now on herceptin every 3 weeks, and Arimidex as well daily. The results of the oncotype DX persuaded me to do the chemo and herceptin.

Wow, Suzanne you had a very good prognosis without the Herceptin. Look at the Adjuvant web site and observe your low risk of recurrence. I think for you it is 2%. Yet, your cardiac risk are much higher taking the Herceptin. How many doctors recommended the Herceptin? Just curious. Maybe I am in the dark but I can't see why you need Herceptin.I thought the studies done for adjuvant herceptin had a criteria that you had to have either a 1cm tumor or a positive node to take Herceptin.

Confused,
Robin

[AlaskaAngel]

Hi Robin.

The clinical trial criteria excluded those who were node-negative and less than 2 cm. However, at the same time, the criteria for doing chemotherapy was set at 1 cm or greater for node-negatives (and in some cases even as low as 0.5 cm).

So on the one hand those falling in this group were being told that the risk was substantial enough to recommend chemotherapy, and in particular a drug known to cause some risk of heart problems (Adriamycin/doxyrubicin), and on the other hand the same group of patients was being told that their risk was not high enough to allow them to participate in the clinical trial to see if they would benefit from having Herceptin.

This created a group of people from the past for whom there is no clinical trial data to say that Herceptin either helps or hurts more. A group that exists in a vacuum. A group that was pointedly left out of the ASCO recommendations about Herceptin.

However, we do know that anyone who is HER2+++ and is either recently diagnosed or who is less than 6 months out from completing treatment IS recommended to have Herceptin.

In addition, testing for HER2/neu has been somewhat unreliable since various tests were not being done accurately in some places. This was verified when selecting HER2 positive patients for clinical trials when somewhere between 17% and 23% of those selected were found to have inaccurate test results when retested. The recommendation was that for the highest accuracy the test should be analyzed at a lab that analyzed HER2 tests frequently and consistently (in other words, at major cancer centers). Usually the FISH test is considered more reliable than the IHC.

In addition a fair number of patients who fall in the node-negative, less-than-2-cm group don't know if they are HER2 or not because they were never tested or were never told.

So for all of the above people, the value of Herceptin is not known.

AlaskaAngel

[AlaskaAngel]

"However, we do know that anyone who is HER2+++ and is either recently diagnosed or who is less than 6 months out from completing treatment IS recommended to have Herceptin."

I just want to note that the broad recommendations for treating breast cancer in 2002 that recommended consideration of chemotherapy did not include those with tumors under 0.5 cm, in case that helps. And even those between 0.5 and 1.0 cm were generally not recommended to have chemotherapy. So the use of Herceptin given the possibility of damage to the heart would probably be viewed in that same light.

[anne]

Marie,

You did not say if you were Er/Pr - or +. I think if you are + you can have hormonal tx, so maybe Herceptin may not be needed. On the other hand, if you are er/pr -, I think it is considered much more aggressive and I think it may be a good idea to consider the Herceptin. I can think of a couple of ladies on this website that started out Stage I and then had recurrence. Your age may be a factor too. It is a difficult decision and good luck to you no matter what you decide.
Anne

Yep, I am in the vaccumm alright. I guess if I took herceptin for this late out after tx- almost 4 years, I would be creating my own trail study.

Thanks for the information Alaska.

Robin

Yes, I am er,pr negative, grade2-3. Yes, a high mitotic growth rate. Still I am almost 4 years post treatment and NED Ann.
Robin

[AlaskaAngel]

Hi Anne.

Those who are ER or PR or ERPR + could be prescribed hormonal treatment with a SERM like tamoxifen or an AI like Aromasin, Femara or Arimidex. However, does anyone know if that treatment is "best" for those who are both ER/PR/ERPR+ and also HER2+++? From what I've read, there are indications that there is a subgroup of HER2+++'s who are also ER/PR/ERPR-positive who should steer clear of tamoxifen in particular.

Also, since the AI's often work only for a limited time, do we know yet whether it is better for those in the gray zone who are HER2+++ and NED to do Herceptin, or to start an AI? Many of the women who are being treated for breast cancer are much younger today and the long-term outcome of putting them on an AI in regard to bone problems and joint problems (as well as any other effects that are not yet quite as obvious) has no answer yet.

Last but NOT least is the difference in approach with these persons in terms of libido and depression. Herceptin may be a better answer for this, since aromatase inhibitors are targeted at eliminating estrogen and Herceptin is not.

AlaskaAngel

Hi Alaska,

I am negative for er,pr. Therefore, heceptin would be my only other alternative to increase my DFS, not an AI.

Thanks.

Whoops, forgot to sign my name in the last post.But you see the computer IPS number.

Robin

This question is for Robin
Where do you find the Adjuvant web site for observing recurrance risk ?
Thanks
Carol

[RobinP]

Hi,
Here is the adjuvant web site link as requested.www.adjuvantonline.com
Robin

[RobinP]

Hi again,

Just thought I would update you folks on my doctor inquiries and responses to my question about late herceptin after adjuvant chemotherapy. My Dana Farber breast oncologist still says no to Hercepin after I spoke to him today, stating as you can figure that there is no data for my uniquie situation, particularly starting Herceptin so late- No known relative benefit this late in the game! Therefore, no Herceptin. Then he stated maybe I speak to another oncologist elsewhere as everyone at the Dana Farber is taking his same position on this matter.

Just curious AlaskaAngel do you start Herceptin late ?

Robin

[RobinP]

Just to let you folks know that I am still looking for an oncol. to give me Herceptin. I don't want to face a bc relapse.
Robin