HER2 learning more is it a bad thing?

[sweetsunflwr]

Found it! - T1a: Tumor more than 0.1
but not more than 0.5 cm in greatest dimension

[Hopeful]

Timely article just posted: http://her2support.org/vbulletin/sho...eferrerid=1173

Hopeful

[Barbara H.]

I was diagnosed in 1998 at a later stage than you and didn't recur to stage 4 until 2004. That was 6 years later. I knew about Herceptin and requested it but it was not available to me. When I recurred the cancer was everywhere including a 3 cm tumor in my brain. I had surgery and was only given Herceptin to make my life tolerable because my daughter was married two months after I recurred. Three weeks after I was given Herceptin I was NED. One and a half years later I recurred again in the bones. Navalbiine and Zometa were added for about a half a year. Then I took a break from Dec. to Sept. to get into the T-DM1 Trial. I was on that trial for two years but had to stop due to a reaction. T-DM1 put me into total remission, and I remain in remission with Tykerb/Hercepitn. I have a good quality of life and continue to work.

I really believe that if I had been given Herceptin from the beginning, I may not have have progressed to Stage 4. Of course I am not a doctor, but with your family history I would fight hard to receive Herceptin. I find it to be an easy drug. It is targeted therapy and therefore has few side effects for most people. You should not lose your hair with Herceptin.

Best wishes,
Barbara H.

[KDR]

SSF
After seven weeks of Taxol, my hair started to fall out. It only thinned. I was more comfortable with bandanas and pretty scarves than I was with my very expensive wig. It grew back while I was still on Taxol. Wonder if anyone's ever mentioned it may come in completely different? The back and nape of my hair is coming is totally curly, and it used to be straight before. I'm on Xeloda, Tykerb and Herceptin now and there is no hair loss.
Best
Karen

[chekmark]

I just want to make sure that I understand this correctly. You were diagnosed a year and a half ago and are thinking about doing herceptin now? I also had a 1.5 cm her2+ tumor with neg nodes and was told I needed both chemo and herceptin from the get go and started on femara. (Like tamoxifin but for post menapausal). Can they even do herceptin this late in the game? You got my head spinning. Like the others have said I think you should maybe consider a second opinion or have a heart to heart with your current oncologist. Yes this cancer thing is a very scary thing and unfortunately we have to deal with it forever. l hope that you qet the answers that you are looking for so that you can have some piece of mind. Good luck to you.

[KirisMum]

Chekmark, you've misunderstood. Her tumor was 1.5mm, not 1.5 cm - one-tenth the size of yours. Personally,I think your oncologist is giving you wise advice, sweetsunflwr. Treatment is not without its own side effects, even Herceptin. AND he encouraged a second opinion with Kansas, which I would certainly follow up on, just for my own peace of mind.

[KirisMum]

You also might want to think about getting genetic testing, sweetsunflwr, for BRCA 1 & 2. it's a long shot, but with so much breast cancer in your family, I would want to have that issue settled ( unless you already have; I can't remember if you mentioned that).

[chekmark]

My mistake, so sorry. Well then that changes everything. I was told that if mine was as small as yours that I would not of needed anymore treatment. You are so fortunate to have caught it so early. We all just have to pray and hope that the monster stays away forever but we have no control over it. Kirismum, I have been following your story and so glad that your daughter is doing so well. She has been so strong, god bless you both.

[MJo]

I was T1b -- 55mm or 1/2 centimeter. That was six years ago when Herceptin was just coming out of clinical trials. I had an aggressive oncologist, plus I wanted to hit the cancer hard. Now, six years later, it sounds like the medical community is moderating a bit. I know that adriamycin -- the Red Devil -- isn't routinely used any more. Maybe with your tiny tumor you can avoid chemo, but I agree with the other women here that you need to get a second opinion about Herceptin. I think er I remember a quote from Dr. Slamon, who discovered Herceptin, that every women with Her2 cancer should get Herceptin. One of the members here- Jean - got Herceptin one year after diagnosis, I think.

[AlaskaAngel]

Herceptin works about half the time. But I agree with MJo and StephN, and would give it and/or ovarian ablation strong consideration, especially if you are not yet in menopause -- even if just the briefer course of Herceptin. I don't know how old you are but your photo is beautiful and looks like you are young.

AlaskaAngel

[Hopeful]

Ok, I'll make it even more user-friendly - here are salient quotes from the article I linked above, posted in the Articles of Interest Forum:

With the absolute benefits of treatment yet to be determined, investigators also are looking closely at the risks associated with skipping adjuvant treatment.

The findings of an observational cohort study presented at the annual meeting of the American Society of Clinical Oncology (ASCO) suggest that women with early HER2 positive T1aN0M0 breast cancers can safely do so because of the low distant recurrence rate observed in this patient subgroup. A higher rate was observed in those with T1bN0M0, indicating that adjuvant systemic therapy may be more relevant in this patient population.

The study assessed outcomes among 237 women with HER2-positive T1a (116 patients) or T1b (121 patients) tumors diagnosed between 2000 and 2006, all of whom had negative nodes and no metastases. Most did not receive adjuvant chemotherapy or trastuzumab.

With a median duration of follow-up of 5.8 years, the rate of distant recurrence was 0.9% among patients with T1a tumors versus 5.8% among those with T1b, lead investigator Dr. Louis Fehrenbacher, an oncologist with Kaiser Permanente in Vallejo, Calif., reported in a poster presentation, analyzing data from the tumor registry of the Kaiser Permanente Clinical Care Program of Northern California.

Results for the actuarial distant recurrence-free interval showed a 5-year rate of 96.5% for the patients as a whole, with 99.1% and 94.0% in the T1a and T1b groups, respectively.

"The take-home message is, I think, the T1a's have too low of a risk of distant invasive recurrence to justify chemotherapy or trastuzumab," Dr. Fehrenbacher said in an interview. "We need to specifically individualize the risk of the patient based on the size of their primary [tumor], because the T1a's and T1b's are quite different in our findings."

In a recent review article looking into whether the existing data supports a definitive treatment threshold for patients with T1aN0M0 or T1bN0M0 HER2-positive breast cancer, Dr. Pusztai, along with lead author Dr. Catherine M. Kelly of Waterford Regional Hospital in Waterford, Ireland and colleagues, wrote that "a blanket recommendation to treat all small HER2 positive breast cancer with trastuzumab-based therapy will almost certainly lead to clinically significant cardiotoxicity in some without any benefit in breast cancer recurrence."

Hopeful

[alicem]

Have you considered having an Oncotype DX test?

http://www.breastcancer.org/symptoms...ncotype_dx.jsp

Just one more tool that might help you make a decision.

I agree with Steph, a second opinion would be valuable!

[Sheila]

I am also a victim(?) of sorts of the pre Herceptin era...back in 2001 and as you can see, although my tumor was small, and I was node neg, I recurred 1 year later...i did get Herceptin then, because I went from Stage 1 to Stage IV...I have been on it ever since. I agree that a second opinion is needed, preferrably by a breast oncologist, who is current with the latest treatment recommendations. Even the short term herceptin would seem to be a valuable insurance for you.
I often wonder, what if Herceptin was available to me back then?

[alicem]

My dearest Sheila,

I often wonder, what if Herceptin was available to me back then?

My thoughts EXACTLY! How I wish it would have been, more than you'll ever know!

Love, Alice

[Barbara2]

I would still be asking for herceptin...no matter how small the cancer.

[sweetsunflwr]

Ladies,
I appreciate all the information and I am still wondering. But after me and my oncologist spoke he told me that the Board would not even approve him to give me Herceptin or Chemo due to my tumor size 1.5mm. He said I can get a second opinion if I wanted to and he would set it up in Kansas City but that is a 4 hour drive from here, I am out of vacation and sick leave even though I am on FMLA I would miss out on a lot of money to drive for the second opinion. I just don't know what to do now? And I am 41 years old - thank you for the wonderful comment about my photo AlaskaAngel...

[sweetsunflwr]

I am also BRCA1 and BRCA2 Negative I had the test when I was diagnosed with Breast Cancer, my sister is also negative...

[AlaskaAngel]

Sweetsunflwr,

To me, your question has resulted in a discussion that is really valuable here, and I'm glad for every response so that all of us are able to give it some personal time and thought.

As Hopeful has thoughtfully provided, very current study indicates that T1a's have, by scientific study, very minimal risk. So what would be the rationale for doing additional treatment?

I can only speak for my personal basis for my opinion, not that of the others. I am concerned about 2 parts to your picture in particular, rather than the less specific conclusions of the study as it applies to the general population of T1a's.

You and I share a number of characteristics. We both are BRCA 1 and 2 negative, ER+, PR+, and HER2 positive, and have done about the same time with tamoxifen.

You are presumably younger at the time of diagnosis than I was. The majority of breast cancer patients in general (and thus likely also true even in the study) are older at time of diagnosis. I may not be correct but I do see age and menopausal status as being strong risk factors that increase my concern about your situation.

Because the particular chemotherapy chosen doesn't match the patient's cancer the vast majority of the time it is given, I don't put much reliance on my having done chemo as a protective factor.

However, I did quit taking tamoxifen based on a question that had been raised about the possibility that tamoxifen increased the risk of recurrence for some HER2 patients. I think it DID initially help me, in that it immediately reduced the density of my breast tissue and made it less difficult to read mammograms. Again, I only can speak for myself, but given your youth plus your reliance on continuing tamoxifen as your shield, I would add back in a short course of trastuzumab for additional insurance, even knowing that it only works for about half of the patients who are HER2 positive.

One really rotten thing about treatment is that no one seems to have found a way to protect us without seriously affecting our sensuality. Becoming menopausal through therapy ages us tremendously in many ways that medical providers completely fail to address or even recognize in their blind continued heroic overboard approach to treatment.

AlaskaAngel

[sweetsunflwr]

One part of me feels ok with what my oncologist discussed with me. Another part of me feels like I am just border line for treatment per my oncologist. He said due to the fact the tumor was 1.5mm no treatment is needed other than tamoxifen. I failed to mention that at the time of my mammogram it was for a routine 6 month check up for my left breast as it was full of cysts, and low and behold they found calcifications in the right breast that ended up being breast cancer. I am the youngest in my family to get breast cancer. I found it in it's very early stages which I am so thankful for.
I am just so undecided as to what to do? Maybe I should consider the second opinion in Kansas City. Problem being I would have to take off work to drive there and not get paid for it. That hurts the pocket book... I am already so sick of the tamoxifen treatment, I have had horrible leg pain and joint pain along with headaches, I still continue to have a menstral cycle that has not changed at all. Maybe it is a little lighter now that I have been on tamoxifen but other than that I continue to cycle every 28 days like normal. Which is strange as my onc said it would make me menopausal. I am going to look at the Kansas Univeristy Medical Center's website and maybe send them an email and see what they think? I mean what if I do go there and they say I should definately have Herceptin and a round of Chemo? Then who do I believe at that point? My onc told me he specializes in all cancers the KUMC specializes in just Breast Cancer. I am totally amazed at all the responses from this thread that i posted. He also said that I have a 1% chance of recurrance in the breast area due to my mastectomy. That reduces my risk considerably but it doesn't any where else in my body that is the part that scares me more than anything...

[Hopeful]

The majority of breast cancer patients in general (and thus likely also true even in the study) are older at time of diagnosis.

The article stated that the worst results were seen in patients age 35 and under, and went on to say:

"While the findings of this retrospective, single-institution study validate the large body of evidence suggesting that younger patients with aggressive tumor subtypes have worse outcomes when not treated with adjuvant chemotherapy or trastuzumab (Herceptin), the authors do not recommend universal treatment of this patient population." (emphasis added).

Overtreatment has the potential to cause serious harm. We have recently seen a paper that raised the question of whether giving radiation treatment to all patients with DCIS resulted in some cancer being made more aggressive by exposure to the radiation. Cancer, by definition, is highly mutable, and capable of changing its molecular structure on the fly to withstand whatever the treatment is throwing at it. Literally, what doesn't kill it makes it stronger. There is no benign cancer treatment - all of them are toxic, whatever they are, and should be used appropriately. This study would seem to indicate that the advice sweetsunflwr got from her oncologist was appropriate based on her dx.

Hopeful