Topic: Triple positive but NODE-NEG! stage I

wallycat,

Thanks.
First oncologist said OncotypeDX is usually not pursued with Her2+ people, meaning I guess that Her2+ in itself is a score-raiser. This Dr also said no research so far has shown Herceptin works by itself. A second oncologist/researcher told me that they are "trying to figure out" if Herceptin can work alone - but those studies could take a few years to complete... but right now, no one seems to know

i cannot understand why they did not research the effectiveness of herceptin by itself when the drug first emerged, but they it apparently was not done/

Hi Bluejay,

   I usually lurk-- I read and post for my mom Teena- but was moved to post because your dx is almost exactly the same as my mom's.  She too had a node neg, 1.1 cm, stage 1, grade 1, triple positive tumor. Many women on this board have said it is strange to be her2+ and grade one, but that was her diagnosis. She was 59+1/2 at dx, and finished chemo a few weeks before her 60th birhtday.

    She did taxotere, carboplatin and herceptin. She did her treatments once every week for three weeks with one week off, for four months, and she continued the herceptin after the chemo until she had had a year of herceptin. 

    She actually did her rads first because the Dr originally thought no chemo, but the oncotypedx came into wider use right then and she was tested. Her score was in the lower part of the intermediate range of scores. With the intermediate score and her2+ she decided on chemo. She is postmenopausal so she now takes arimidex.

   Going from the propsect of surgery, lumpectomy, rads and hormonals to chemo was difficult emotionally because having to have chemo somehow made it all so much more scary and dire. The chemo was hard, but she says feels good that she did everything she could to prevent recurrance, especially because her2+ tumors can be sneaky, even at stage 1. What gave her peace of mind about her decision was the oncotype dx score which is thought to be highly accurate. I hope you will get this test-- it's a great tool.

Good luck Bluejay,

Myisha, for Teena 

Hi Bluejay,

Although I did have chemotherapy followed by rads and a brief run of tamoxifen, I want to make some comments that favor not doing chemo for you to consider.

Most of those online in any breast cancer discussion fall into one of two groups. They are either those who were diagnosed within the last couple of years, or they are those with mets. Don't read too much into that, because those who haven't had mets and are farther out generally move on in their lives and don't want the constant connection with cancer discussions. It isn't that they all recurred. Somewhere between 90 and 95% of all those diagnosed today in the USA with bc are diagnosed as early stage bc, and their recurrence rates are low and survival rates high.

So by far and away most of the discussion we see online is either by those who are either in treatment, just past it, or those who have recurrence or mets. You are not hearing much from the perspective of those who are more than a few years out who have never recurred.

Mine is only one person's viewpoint, but here are a few thoughts that I have for you to consider.

I am 6+ years out from treatment and here are the advances that have happened in that brief timespan:

There was no Adjuvant online for me to use when I was diagnosed.

There was no Oncotype Dx for me to consider when I was diagnosed.

The taxanes were generally not used for anyone who was ER or PR positive as it was felt they only were of benefit to those who were not.

There was no trastuzumab yet except for those actually in the trastuzumab trial and they results were not yet available.

There were no aromatase inhibitors to consider as part of my treatment options.

There was only tamoxifen available.

Oncologists (with the exception of the same onc who predicted that estrogen replacement therapy was likely contributing to breast cancer, Dr. Susan Love -- and who was heavily criticized at that time for saying so) were not willing to seriously investigate whether or not the use of Lupron and such drugs/oophorectomy was a reasonable alternative to chemotherapy for those with hormone receptor positive bc, and openly criticized that "notion". (Dr. Love supported investigation of that possibility.)

Now, considering that all of that information was not available just 6 years ago... and add to that....

There are vaccines in the works for HER2's that are looking very, very good, and that may work best for those whose immune systems have never been compromised by such toxic therapies as chemotherapy.

Trastuzumab and lapatinib are just the first kinds of drugs that offer some less toxic mechanisms for helping to keep cancer at bay. Others are in trials.

There is much more documentation now that maintaining a proper BMI, exercising, and eating a diet high in vegetables and fruits and balancing types of fats CAN help keep cancer at bay.

But most important of all, far more of those diagnosed today are diagnosed as early stage bc than just 6 years ago. This is the group most likely to have better, less toxic choices.

Chemotherapy benefits HR+'s the least, and HR negatives the most; HR-negative recurrence rate is high in the first few years after diagnosis whereas HR positive is not. Chemo's main effect is in the first few years after treatment.

AlaskaAngel, 6+ years out, no taxane, no dose dense, no Herceptin, and NED

P.S. See thread posted about Herceptin and Avastin; these are therapies that are on the horizon for newly diagnosed.

Caya,
what did you find hard(er) about Taxotere, and when you say 3 rounds, do mean 1 x every 3 wks?

BlueJay -

Yes I meant Taxotere - 1 treatment every 3 weeks x3.  I found the Taxotere harder- I had some joint pain, extreme fatigue and mouth sores and sores that were on my bottom - not pleasant, but I used sitz baths and the onc. prescribed a cream to use. The fatigue could just have been the build up of the immune system weakening after the 3 FECs.  But I will tell you that I never missed a treatment, my blood counts were always okay to have chemo, and I never had to use the Neupogen or Neulasta.

After I finished the 6 rounds of chemo, I had a month's break, had another MUGA scan to check my heart (fine) and then started Herceptin in June 2007.  After one month on Herceptin, my onc. started me on Tamoxifen.  He wants me to stay on it for a few years before switching to an AI because I have ostopenia, and Tamox. is good for the bones, the AIs are not. This Thursday May 8th is my final Herceptin (#17).

Caya,
it sounds like you did well on your therapy. that's great news.

I had heard that taxotere is harder to tolerate than Taxol. I wonder why you weren't switched if you had a difficult time on taxotere? I have a friend in europe who had stage II, who used the exact combo that you did. She also reported extreme fatigue but, ironically, had no other side FX from taxotere. No neuropathy, nothing. She did say she had extreme mental fatigue all the way through, lasting until about a month or so afterwards. Did you experience that?

Dejaboo,
you have a curious situation. Did you think about getting a confirmation for your path results? It wouldn't hurt to have another lab run the tests again. Also wondering: with such a small tumor, why a bilateral masectomy, and why no lumpectomy?

Re: herceptin alone - would you do this even though there is no study that shows benefit for herceptin alone, or do you know of some study that does demonstrate this? It seems insane to me that Genentech never tested it by itself.

Interesting that a few people have said that their oncologists said Taxol was too toxic-- compared to
A/C? What about heart problems with Adriamycin.

swimangel,

i will inquire about that chemo drug. do you mind me asking what hospital you were treated at?

blzgsam,

why only 3 rounds? (assuming you mean 1 x every 3 weeks) & what were your main side fx?
did you have to deal with chemopause?

I am also triple positive and node negative.  I did do taxol, carbo and herceptin. (chemo was complete March 27)  I now do the hercpetin drip only every 3 weeks.  I had 6 rounds of this chemo regimen and it worked well!  I had surgery last week and the tumors were gone, gone, gone. I had two 1.2cm and 1.8 cm and then some DCIS that of course does not react to chemo at all.  

 I did have side effect including hair loss, fatigue, change in taste and some heartburn.  Overall though I made it through okay.  

I had chemo first because at the time no one had looked into the microcalcifications that were picked up by my mammo, they were focusing on the tumors that were in quadrant 1.  I had a core biopsy on this and then the MRI and then chemo was reccomended to shrink in order to get clean margins come surgery time. I was orginally having a lumpectomy.  At the time my port was put in my surgeon did say we need to have your microcalcs looked at again and sent to pathology.  This took a few months to get to.  They were cancerous and in another quadrant.   This then changed my surgery to mastectomy.  I continued with the chemo as it was working accding to the u/s I had.  I was already at my 4 of 6th treatment at this time.  I liked knowing that it was working even though I knew now they would have to remove the entire breast.

As far as chemopause, yes I did.  I am 46 and was already experiencing some irregularity but since starting chemo nada!  My onc. said we have to wait and see on this and then will test my hormone levels etc.  For now I am on tamox.  I may have my ovaries removed.  

I did not have any neuropathy at all, one bonus!     

Hi AnnNYC,

Yes... and no.  The logic behind testing against a standard therapy that "has a known degree of effectiveness" is very questionable, partly because the degree of effectiveness was never identified as to which patients definitely benefit, and primarily because of the newer knowledge of all the varieties and subgroups of breast cancer patients. It may well be that there are subgroups who actually do worse with the addition of chemo to Herceptin, who might very well do better without the chemo.

Under the current practices we have no avenue for finding out whether a new agent works better alone than the current regimens.

Thank you, Ann - I agree. Because the potential, but unquantifiable, negative effect is never considered as part of the IRB's deliberation, it "doesn't exist", and we need more thought about the process to find a way to include it.

A.A.

I had 1.6 cm, E+, her2+ with nod-neg.  My treatment was carboplatin, taxotere and herceptin for 6 cycles and then herceptin every 21 days for a year. I have 3 more herceptin treatments to go.  I also had the genetic test done because my mom had breast cancer twice and now ovarian. I have the BRAC1 genetic mutation, so I just had a double mastectomy with tram flap reconstruction 4 weeks ago. The surgery lowers my chances of the cancer reoccurring from 87% to about 2%. The path report from surgery showed no cancer cells!