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All TopicsForum: HER2/neu Positive Breast Cancer → Topic: Stage 1 HER2+ 1.0cm Tumor

Topic: Stage 1 HER2+ 1.0cm Tumor

Forum: HER2/neu Positive Breast Cancer — Testing, Herceptin (trastuzumab) treatment, side effects, and more.

Posted on: Apr 29, 2009 12:47PM, edited Apr 29, 2009 12:50PM by Watts76

Watts76 wrote:

I found a lump back in December, and had an ultrasound and biopsy that came back positive for Cancer.  I had the lump removed on March 18, 2009, and results came back that the margin and lymph nodes were negative for cancer.

I am 32 years old, and had been taking Depo Provera for 5 years(stopped in Dec.), which I found out later could slightly increase the chance of getting breast cancer.  I feel that the development of this tumor may have been hurried due to the increase of estrogen that Depo provides. 

I just had an appointment with an oncologist yesterday to discuss treatment, and was told the lump was HER2+.  He suggested Chemo every 3 weeks for 6 treatments, and Herceptin for 1 year.  He said this is just a preventative measure, and is not mandatory.  Something to decrease the chance of developing cancer later in life.

I live in Canada, and Herceptin is not available as a lone treatment. In order to receive it, you have to have Chemo as well.

I have decided against getting this treatment for now, as the cons outweigh the pros right now.  There is no other history of breast cancer (or any other cancer) in my family, but there is a history of heart condition, which Chemo is said to increase the risk of.  Also, the ongologist said that the tumor was removed and margins/nodes were clear and that I could very well be cancer free.  (I know this is the unrealistic way to look at things)

I am going to be getting radiation treatment for a few weeks and be on Tamoxifen for 5 years.

Again the Oncologist did not push Cheme as a treatment, but said he would have had the cancer been in the lymph nodes.

I just wanted some insight into this. Any would be greatly appreciated.

 Thanks

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Apr 29, 2009 02:17PM jpann39 wrote:

Watts

We sound very similar....my lump was larger @2.4 cm but the size is the only reason I was staged at 2...no nodes, her2 was negative for me as well as everything else.

The surgeon told me that stage 2 was a free ride to the chemo train, but the oncologist said he wouldnt recommend chemo as my tumor was slow growing (grade 1)...I choose no chemo after having the oncotypedx testing done on my tumor and received a score of 12.

I also had been on the Depo Provera for several years and was also dx'd with a malobsorbion disease so was forced to take high doses of B12 in shot form so I believe between the two of those the cancer was brought to light quicker.

Im comfortable with my decisions in treatment and even if it does come back I dont think I will be doing the "what if" game.....I choose the best for me at the time...

Best wishes

Jule

'Gain strength by the positive and don't be sapped by the negative"

Dx 11/4/2006, IDC, 2cm, Stage II, Grade 1, 0/9 nodes, ER+/PR+, HER2-
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Apr 29, 2009 04:12PM, edited Apr 30, 2009 11:47AM by Sassa

Watts,

Unlike jpann, your cancer is HER2+ which most likely means it is grade 3.  This means a very aggressive form of cancer.

Although your lymph nodes were clear, 20% of cancer spreads through the bloodstream and not the lymphatic system.

 Chemo and herceptin, definitely a must do in my book.

The chemo and herceptin will find any cancer cells floating around the body and destroy them. 

Dx 11/6/2006, IDC, 1cm, Stage I, Grade 3, 0/9 nodes, ER-/PR-, HER2+
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Apr 29, 2009 04:37PM noellech wrote:

I just wanted to chime in that the doctors here at Northwestern would have recommended chemo/herceptin - primarily because of your age. They told me I was young at 42 and for that reason recommended chemo/herceptin. My tumor was 0.5 cm, grade 1, very ER+ but Her2+.

Dx 6/21/2008, IDC, <1cm, Stage Ia, Grade 1, 0/6 nodes, ER+/PR+, HER2+
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Apr 29, 2009 05:35PM tapril wrote:

Watts

I also live in Canada. My dx is so similar to yours. I am 34 and had a 1.5cm lump removed march 17 I had clear margins and 0 out of 17 lymph nodes. Today was my first chemo treatment. Chemo was mandatory,because of my age. I also need to follow up with radiation upon completing chemo. I am shocked that this is not your recommended treatment.I was told that with my dx and this treatment that my recurrence rate is 3 to 5%. They want me to live for another 50 years not the 10 i could possibly get without treatment. I am having chemo every 2 weeks with a white blood count boost the 2nd day. This is for 16 weeks. I will also be on herceptin for a year. I also have no history at all in my family. Just so you know I had my heart tested before chemo and will monitor it every 3 mos. Have you had any other opinions. I did and they all said the same thing. Good luck.

DX 3/30/2009,IDC,1.5cm, Stage 1,grade 3 ,0/17nodes,er+/pr+,HER2+

Dx 2/18/2009, IDC, 1cm, Stage I, Grade 3, 0/17 nodes, ER+/PR+, HER2+
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Apr 29, 2009 05:36PM Watts76 wrote:

I am going to ask the oncologist to run the onco dx test and also a FISH test to see what the results are. I might actually call and tell them to do them before I go back in 3 weeks so they have the results.

I have put together a list of about 30 questions to ask when I go back as well.

Thanks for the replies.  Please keep them coming!

Lumpectomy/Node Removal March 18, 2009

Dx 2/23/2009, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Apr 29, 2009 06:09PM Kaidog wrote:

Wow.  I'd get a second opinion about your decision....   I know chemo isn't pleasant, but you're young and - if no one's already told you this - HER2 is a nasty cancer.  It's aggressive and easily metastatic and most oncologists these days don't screw around with it.  Be careful! 

Trying to love my chemo curls

Dx 4/10/2009, IDC, <1cm, Stage I, Grade 2, 0/4 nodes, ER-/PR-, HER2+
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Apr 29, 2009 07:23PM REKoz wrote:

Just another country heard from. My diagnosis is strikingly similar to yours and I had four rounds of chemo with herceptin and will continue with herceptin for a year. I echo what the latter posters said. Her2 pos is very aggressive and chemo was a given for me. Though I was able to do 4 instead of 6.

I'm like most of the ladies here that want to hit it with the hard guns the first time. Hopefully there will be no second but at least I'll know I everything I could.

Best of luck

BMX 11/08, Abraxane/Carbo/x4 1/09 Herceptin until 1/10, Recon w expanders-1st exchange Dec. 09. Revision from 700 Style 20 to 600 Style 45-Oct 10

Dx 10/16/2008, IDC, 1cm, Stage Ib, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Apr 29, 2009 07:46PM, edited Apr 29, 2009 10:31PM by orange1

Watt76-

Please strongly consider getting another opinion.  Even small node negative her2+ tumors have a significantly worse outcome than Her 2- tumors. Herceptin + chemo will reduce your odds of recurrence significantly.  As others have said, your young age makes chance of recurrence higher.

The graphs below are from the Journal of Clinical Oncology, Volume 26, Number 35, December 2008.  The recurrence rate for UNTREATED (no chemo, no tamoxifen) small tumors (between 0.5 and 1 cm) is approximately 30% (see bottom graph).  If you are hormone receptor positive, tamoxifen will decrease the chance of recurrence.

 

Fig 4.Kaplan-Meier curves for 10-year outcomes based on HER2 status for patients with &le; 1-cm tumors (n = 326) and for the cohort who did not receive any adjuvant systemic therapy (n = 225). (A) Relapse-free survival in patients with T1a-b pN0 tumors. (B) Breast cancer-specific survival in patients with T1a-b pN0 tumors. (C) Relapse-free survival in patients with T1b pN0 tumors who did not receive adjuvant systemic therapy.

The TCH regimen is unpleasant, but not awful.  More importantly, it is short-term. In 4 months you'd be done.  In 6 months, you'll be done and have short hair. If you get distant metastasis, you will be fighting for your life for the rest of your life.  Also TCH (the regimen you would likely receive) has a very low incidence of cardiac toxicity, and when it does occur, it typically improves back to normal over time.

Please think long-term.  Now you have the opportunity to cure this (if indeed, you have a few BC cells wandering around your body). 

Good Luck.

Jackie

Dx 8/2007, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Apr 29, 2009 09:25PM mmm5 wrote:

Orange

Can you break down graph A and B I understand C

Dx 4/4/2008, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Apr 29, 2009 09:33PM Estepp wrote:

Wow... Her2+ and no chemo... no way.

Her2 is way to aggressive. You are not at a high risk of local recurrence.. but distant. Even though it was not in your nodes.. did it have a blood supply? I am in the States and go to a breast center here.. so it might be different there. EVERY person on my huge team told me.. at my age ( 40 at the time) and Her2... Chemo for SURE!

Also.. only 20% BC are inherited...

God Speed and choose wise sister!

Laura

We are the Ta Ta Sisterhood! Her2+ BC is what I had.... and yes sisters.. I had lymph node involvement...Plus Radiation AND Implant only Reconstruction. DX 6/25/08

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Apr 30, 2009 12:18AM, edited Apr 30, 2009 12:22AM by AlaskaAngel

Hi Watts,

Consider my signature line/history. If I could go back in time, with MY history and not yours I would refuse chemotherapy and use hormonal treatments/therapy plus trastuzumab, even if it meant going to another country to get it and having to pay for it on my own. Trastuzumab was not available to me back when I was being treated. Chemotherapy is vastly overrated. But given your young age on top of being HER2 positive (and without knowing your ER or PR or your grade -- could you post those?) and your choice of tamoxifen, I would suggest you get another professional opinion.

I believe tamoxifen is NOT a good choice for some HER2 positives. Since as early as 1998 a concern about using it for some HER2 positives has been noted (google tamoxifen and AIB1). I believe the concern is meaningful. When I completed chemo in 2002 I was put on tamoxifen and was on it for 1 3/4 years before finding out about the research that indicated that for about 1/3 of the HER2 positives, tamoxifen may actually contribute to recurrence. I would not recommend tamoxifen alone for a HER2 positive.  

There is some discussion indicating that when tamoxifen is taken concurrently with a drug like trastuzumab it may work.

-AlaskaAngel

Dx 12/3/2001, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+Surgery 01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
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Apr 30, 2009 10:05AM teelee wrote:

I also live in Canada. At least where I'm from in Alberta a FISH test (CISH test here), is automatically done when you have a HER2 positive result from your surgery. As far as the oncotype dx testing. It is not done here  in Canada. It hasn't been around long enough for it to be covered by health care. So it has to be paid for out of pocket.

I am very surprised with a HER2 postive result chemo and herceptin wasn't automatically recommended, especially with your young age. Having a BC diagnosis at an older age is actually a much better thing (or so I've been told). I agree with Tapril and others. With a HER2 positive diagnosis chemo with Herceptin is definately something you should seriously consider.

Dx 2/18/2009, IDC, 1cm, Stage II, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Apr 30, 2009 11:53AM Watts76 wrote:

Updated the diagnosis.  The oncologist said I was a 2-3 for grade, but I put 3.

Chemo and Herceptin were recommend, but not"mandatory".

Thanks again

Lumpectomy/Node Removal March 18, 2009

Dx 2/23/2009, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Apr 30, 2009 02:45PM QueenK wrote:

From my perspective, here is the deal.

I was told my cancer was measured under 1 cm.The medical oncologist did NOT reccomend chemo as I had clear nodes and grade 2.That said I made a deal with myself, if it was HER 2+ I would have had chemo.

In someone so young it can be very aggressive.

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Apr 30, 2009 06:03PM bluedasher wrote:

mmm5, graphs A and C both show breast cancer free survival but graph A includes women with either T1a or T1b N0 (node negative) tumors while graph B only includes women with T1b N0 tumors. T1a means that the invasive tumor is 0 to 0.5 cm. T1b is 0.5 to 1 cm.

Graph B is shoing breast-cancer specific survival - which means the number of women who didn't die from breast cancer. It looks like the probability of dying from breast cancer in the 10 years after diagnosis of a less than 1 cm HER2+ node-negative cancer for women who don't get adjuvant therapy is about 10%.

This data is similar to that in the MD Anderson retrospective study presented at San Antonio last December. That data looked at 5-year recurrence for women diagnosed with tumors less than 1 cm between 1990 and 2002 who didn't get chemo or Herceptin. That showed recurrence probability of about 23% and distant recurrence (mets) at about 13%.

Looking at your signature lines, both you and Watts have somewhat larger tumors (T1c - ones between 1 and 2 cm).

My tumor was a T1b (0.9 cm) and I decided to get TCH (Taxotere, Carboplatin and Herceptin) chemo. This treatment has much lower heart risk than AC-TH. Adriamycin (the A in AC-TH) can damage the heart. Herceptin also can decrease heart function but the damage from Herceptin reverses after Herceptin is stopped - which isn't as true for the damage that Adriamycin does.

The BCIRG 006 study showed 4 year recurrence (the most recent data I could find since the study is still under way) with TCH treatment of node negative tumors (most in the study were 2 cm or larger) to be less than 7%. I think the 4 months of chemo and year of Herceptin was worth it to move my 5-year recurrence probability from 22% (or more since my tumor was a the high end of the 0 to 1 cm range) to 7% (or less since my tumor was smaller than many in the BCIRG 006 study).

The BCIRG 006 interim results can be found at
http://www.bcirg.org/Internet/Studies/BCIRG+006.htm

Look for the link on the page to the 2nd interim results slides. These have a lot of information including information on side effects. Slides 24 to 29 are about cardiac effect. 

The whole world is a narrow bridge and the main thing is to not fear.

Dx 9/2008, IDC, <1cm, Stage Ib, Grade 2, 0/5 nodes, ER-/PR-, HER2+
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Apr 30, 2009 11:03PM NanaA wrote:

Ladies, finished taxol #6 of 12 on Tuesday but having problems with hands and foot neuropathy and onc may change to somethings else, but I hope that he will consider just letting me continue the herceptin every 3 weeks and forgo the rest of the chemo.  The only reason for the chemo was to get the herceptin which they do not normally start without chemo. This next treatment would be #7 of taxol and 3rd for the herceptin.  Had I not been her2+ they would not have even talked about chemo for me, just radiation.  Hopefully onc will think 7 weeks is enough along with the herceptin for a year and radiation still to go, but we will just have to wait and see.  Femara will also be on my agenda too.  Since I am 61 age is a factor in what they will advise. Not quite so many years to reoccur in me as in a 34 year old.  Annette

Dx 1/15/2009, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2+
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May 2, 2009 12:42AM, edited May 2, 2009 12:47AM by swimangel72

Watts - sounds like you need a second opinion. What does he mean "recommended but not mandatory?" That's like saying "I recommend you get a heart transplant but it's not mandatory.".........NOTHING is "mandatory"............but if he's the PROFESSIONAL it's his duty to inform you that with Her2+ breast cancer, chemo and Herceptin is not only recommended - it's STRONGLY recommended by MOST oncologists with knowledge from the latest studies. I think your onc is playing word games and you should insist he be clear - what would he recommend to his MOTHER or his SISTER who had a similar dx to you? Bottom line - you need to get a second opinion with an onc who does a better job explaining your recurrence risks with Her2+ cancer. Oh and btw - from my own research - many women who were not able to receive Herceptin years ago ended up with brain mets - even women with Stage 1 tumors. Sorry to come on so strong, but I've learned so much about Her2+ bc and Herceptin and you did ask. Another place to go for help is www.her2support.org. Good luck with your extremely difficult decisions!

P.S.  Edited to add - I was put on a very unusual treatment - I had Navelbine for 4 months every two weeks with Herceptin and then continued with Herceptin every two weeks for a year. My onc didn't want to give me strong chemo since I really only needed the Herceptin - he wanted to spare my heart and my emotions, kind man that he is. I never lost my hair and the only side effects I had were a bit of diarhea from the Navelbine and bad fingernails from the Herceptin. Talk to your onc about the chemo choices that are the LEAST damaging - the Herceptin treatments are really very easy. I was able to drive myself there and back and I never needed any pre-meds at all.

3/3/08 Right-side mastectomy with immediate muscle-sparing free tram; 3/9/08 Developed abdominal MRSA staph infection and hernia;Completed 4 months Navelbine and 1 year Herceptin; Arimidex - 3 more years! Diagnosed at age 53

Dx 2/5/2008, IDC, <1cm, Stage Ib, Grade 1, 0/7 nodes, ER+/PR+, HER2+
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Jul 25, 2009 04:31PM cookie2009 wrote:

Hi, I was diagnosed bc stage 1 in may, and had a mysectory in june. No lynh modes, and clear margins. the tumor was only 2ml. I am ER AND PR negative, and her2 positive. I am 58. My oncologist says no chemo or hemp because of tumor size. I am getting a second opinion. I am really worried. Can anyone give me some information?

Cookie2009

Cookie

Dx 5/5/2009, IDC, <1cm, Stage I, Grade 2, 0/4 nodes, ER-/PR-, HER2+
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Jul 25, 2009 08:36PM sheila888 wrote:

Hi cookie2009,

I can only tell you my own experience

I am also 58. I was diagnosed 2005. ( please look at my profile )

I had an lumpectomy Tumor size was 1.2cm all together 8 rounds of chemo, Herceptin 52 weeks and radiation 33 days. I was 8 months post menopausal when i was DX. Now I am on Femara because i was ER+. I hope this info helped you .You can Pm me if you wish.

Good Luck. I am a firm believer for a second opinion.

Smile Sheila Smile

Sheila♥

Dx 4/8/2005, IDC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2+
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Jul 25, 2009 10:52PM jenbal wrote:

Mainly addressed to Watts and Cookie -- My tumor was small (.23 cm), no nodes, no LVI, clean margins. Between all that, and my age (50), my onc said whether to do chemo was pretty much up to me. He said if I were 35, he'd "throw the book at me," meaning AC-T chemo plus herceptin, but at 70, he might recommend against any chemo -- BECAUSE OF THE SIZE OF THE TUMOR and the risk of heart damage from the chemo+herceptin. So Cookie, your onc's recommendation may not be completely out of line, but a second opinion might be worthwhile for your peace of mind.

In the end, I opted for TCH because I didn't want to take any chances on recurrence. Watts, when your onc says chemo+herceptin is "something to decrease the chance of cancer occurring later in life" that's exactly the point!! If it recurs anywhere outside the breast, it's metastatic and you're in treatment for life and your chances of that life being as long as it should are greatly diminished, especially at your age. Please keep pushing and let us know what works out.

Dx 2/3/2009, IDC, <1cm, Stage Ia, Grade 3, 0/5 nodes, ER-/PR-, HER2+
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Jul 26, 2009 12:42PM swimangel72 wrote:

BTW - my oncologist consulted with his "tumor board" - a group of other oncologists in this metro area before making his recommendation that I receive Navelbine plus Herceptin every two weeks. I would hope that your oncologist also consulted with a tumor board, and isn't leaving the decision on your inexperienced shoulders - that would be TOTALLY unprofessional! I also got two other opinions from two different oncologists, and they both agreed with my original onc's recommendation (which gave me much peace-of-mind, especially since I didn't follow the "normal" chemo protocols with Herceptin.)

3/3/08 Right-side mastectomy with immediate muscle-sparing free tram; 3/9/08 Developed abdominal MRSA staph infection and hernia;Completed 4 months Navelbine and 1 year Herceptin; Arimidex - 3 more years! Diagnosed at age 53

Dx 2/5/2008, IDC, <1cm, Stage Ib, Grade 1, 0/7 nodes, ER+/PR+, HER2+
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Jul 26, 2009 01:41PM, edited Jul 26, 2009 02:02PM by AlaskaAngel

mmm5, watts76, cookie2009

As an oldtimer I think maybe a history lesson might help.

When I was diagnosed in 2002 as HER2+++, the trial in the US that was being done to show whether trastuzumab helped or not hadn't reached conclusion so it wasn't being recommended as a standard part of treatment for anyone who was HER2 positive at that time.

The reason there still is confusion about what to do for the smaller HER2 positive tumors is because right or wrong, in creating the clinical trial, they limited the people who could be in it to those who had EITHER a tumor over 2 cm OR had at least one positive node. That meant that when they completed the trial, there was no data to base a decision on for those of us with tumors that are less than 2 cm AND no positive nodes.

Ever since then, the confusion has continued, with fear quite naturally being a strong motivator in a situation where they have continued to not do trials to cover the people caught in this gap. If they had included smaller tumors in the trial we would know more about whether we should be doing chemo plus trastuzumab, or just trastuzumab, or what. What is most unfortunate about this is that they have come up with a sloppy "scientific" recommendation that for those of us caught in the gap, trastuzumab should be combined with chemo to work "best" -- whether that is mostly true for more advanced stages or not, rather than for early stage bc  -- yet by playing it safe with that recommendation there is no protection being applied against the known toxicities of chemotherapy itself.

One also needs to understand that the majority of HER2 positive patients are ER- and PR-, and chemotherapy works best for those patients, but distorts the perception of what works "best" for "HER2 positive" patients in favor of chemotherapy.

It is important to note also that people who choose chemotherapy often claim or assume that the chemotherapy is "keeping them NED" when in reality it may be providing no coverage against recurrence for them at all and only provided toxicities. No one who makes that claim can say for sure scientifically that chemotherapy is what "worked", or not.

What would make the most sense would be to have a trial for early stage HER2 positive bc using just herceptin with no chemo, so that we could establish whether or not insurance companies (who are now paying lots of money out for the chemo treatments and all the resulting problems and support that goes along with it, the steroids, the antinausea drugs, etc.) could pay for the heceptin for us instead.

Hope that helps to give you some idea how limited the knowledge base is for the current recommendations, pro OR con.

AlaskaAngel

Dx 12/3/2001, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+Surgery 01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
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Jul 26, 2009 02:25PM, edited Jul 26, 2009 02:26PM by AlaskaAngel

Bluedasher,

I read your straightforward post with a lot of interest. I hope that by having a broad discussion of viewpoints we can untangle as many of the puzzling questions about therapy as possible. I can definitely see where you are coming from in your discussion above. What is important is to help each other see any of our own blind spots, because we all have them.

What stands out for me in reading that post (since I am seeing through the eyes of being a HR positive HER2 positive, and not as a HER2 positive HR negative) is that the information in it is based on the size of the tumor, not on the HR status. In addition you happen to be HR-. If I were HR-, I would probably be looking at it the same way you are. Is there a difference between the HER2 positive HR negative trial results in that size range of tumors you mentioned and the HER2 positive HR positive results in that size range of tumors?

AlaskaAngel

Dx 12/3/2001, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+Surgery 01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
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Jul 26, 2009 02:40PM LibraGirl wrote:

I'm also in Canada and have similar diagnosis to you.  I went into my first on consult thinking I would have to fight to get herceptin, but thankfully, my onc recommended it.  I only had to do 4 chemo to get it, so definately get a second opinion.  You may be able to get it with just TC (no heart toxic anthracyclines).  Your ejection fraction is monitored during the months you are on herceptin and if it drops too much you will be taken off of it.  It is worth trying Herceptin as it can make a huge difference in your risk for recurrence.  Many recent studies have come out that show even early stage women with small tumors and negative nodes can improve their disease free survival with this drug.  Without herceptin, my risk for recurrence was 30% but with herceptin (and tamox) I am now in the single digits. My onc felt that at my age I have many years in which to recur.  You are even younger, so please consider this fact too.  

Dx March 14 2008, IDC 1.7 cm, Stage 1, Grade 2, 0/3 Nodes, ER+ PR+ Her2+

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Jul 26, 2009 04:11PM swimangel72 wrote:

For more information on Her2 cancers - and a great support groups - check out www.her2support.org.

3/3/08 Right-side mastectomy with immediate muscle-sparing free tram; 3/9/08 Developed abdominal MRSA staph infection and hernia;Completed 4 months Navelbine and 1 year Herceptin; Arimidex - 3 more years! Diagnosed at age 53

Dx 2/5/2008, IDC, <1cm, Stage Ib, Grade 1, 0/7 nodes, ER+/PR+, HER2+
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Jul 26, 2009 10:54PM bluedasher wrote:

AlaskaAngel, I have read a number of research articles that have said that hormone status doesn't make as much difference for HER2+ tumors even though in HER2- tumors it makes a big  difference. Unfortunately, since I'm hormone negative, I haven't kept track of those articles and can't provide a reference. In the MD Anderson study that looked at recurrence for small tumors without chemo, they lumped hormone positive and negative together in the HER2+ group so that one doesn't help. In their numbers, the homone positive group only includes HER2-.

In the results from BCIRG 006, the chemo regimines with Herceptin show about the same amount of improvement (hazard ration) in DFS and survival for hormone negative and hormone postive but they don't show  the absolue values for that, just the hazard ratio. About half the tumors in BCIRG 006 were hormone positive.

Also, the improvement in terms of hazard ratio was better for node negative women. TCH improved node negative DFS and survival at 4 years by more than 50%. For node positive, the improvement was about 1/3 (hazard ratio about 66%). 

Of course there is the problem that there is no data for women with tumors as small as ours. Presumably, most/all of the node negative women in BCIRG 006 had tumors greater than 2 cm (they did allow for some other risk factors that would qualify a women with greater than 1 cm node negative tumor, but it seems likely that most who would have participated had larger tumors). 

But with data that says that recurrence without chemo for a tumor node negative tumor less than 1 cm is 23% and BCIRG results for all node negative women on TCH being 7%, I'm assuming that TCH will have given me at least that improvement and probably more (due to the smaller tumor) and that seems worth it to me.

There are some trials going on trying lighter chemos for HER2+ small node negative tumors. I know there is one on Taxol plus Herceptin. Up until the recent studies that showed how high recurrence was with small node negative HER2+ tumors, I don't think they were focusing on them but now the NCCN recommendation for chemo is a bit stronger on these cancers.

The whole world is a narrow bridge and the main thing is to not fear.

Dx 9/2008, IDC, <1cm, Stage Ib, Grade 2, 0/5 nodes, ER-/PR-, HER2+
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Jul 27, 2009 12:35AM AlaskaAngel wrote:

Bluedasher,

Your ability to understand my questions is very much appreciated.

I have a question about the logic in this part:

"There are some trials going on trying lighter chemos for HER2+ small node negative tumors. I know there is one on Taxol plus Herceptin. Up until the recent studies that showed how high recurrence was with small node negative HER2+ tumors, I don't think they were focusing on them but now the NCCN recommendation for chemo is a bit stronger on these cancers."

What would the "NCCN recommendations for chemo that are a bit stronger on these cancers" be based upon, if there have been no trials for them to consider that show how high or low recurrence would be with small node negative HER2+ tumors that were treated with just traztuzumab and no chemo?  In other words, aren't they just basing that decision on data for either those who did chemo (or chemo with trastuzumab) and those who never had trastuzumab at all, since chemo is required to get trastuzumab? 

If  "Up until the recent studies that showed how high recurrence was with small node negative HER2+ tumors" is true, what would those studies show if those same "small node negative HER2+ tumors" didn't get chemo but did get trastuzumab?

Dx 12/3/2001, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+Surgery 01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
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Jul 27, 2009 12:45AM AlaskaAngel wrote:

Do we really know whether it was the TCH that will have given you at least that improvement and probably more vs no chemo, or how much of the improvement and probably more was due to the H and not the TC?

"But with data that says that recurrence without chemo for a tumor node negative tumor less than 1 cm is 23% and BCIRG results for all node negative women on TCH being 7%, I'm assuming that TCH will have given me at least that improvement and probably more (due to the smaller tumor) and that seems worth it to me."

Do we know how much better we might actually do (especially long-term) if our immune system is left intact versus affected adversely by chemo combined with the trastuzumab?

Dx 12/3/2001, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+Surgery 01/03/2002 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
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Jul 27, 2009 05:21AM 07rescue wrote:

"Do we know how much better we might actually do (especially long-term) if our immune system is left intact versus affected adversely by chemo combined with the trastuzumab?"

I asked myself this question many times before embarking on the TCH journey. It was really left up to me, and I had an oncologist willing to give me Herceptin only if that was what I opted for. At the same time I hedged my bets - I opted to include a variety of immune protective alternative therapy agents, mostly from Chinese Medicine, which bolstered my white cell count all through the chemotherapy process. I never required any of the granulocyte stimulating drugs, never had any infections, and my white cell count has returned to normal two months following chemo. I hope I have a good outcome from all this treatment. Too bad with cancer we cannot "try it both ways" and pick the outcome we like better.   :)

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Jul 28, 2009 10:55AM bluedasher wrote:

Alaska, chemo with Herceptin is becoming more common and more recommended with small HER2+ cancers because of studies that say recurrence is high for these with no chemo and no Herceptin. But there isn't data comparing Herceptin only, chemo only and chemo plus Herceptin for these.

"Do we know how much better we might actually do (especially long-term) if our immune system is left intact versus affected adversely by chemo combined with the trastuzumab?"

What data causes you to say that chemo makes our immune system not "intact"? I haven't seen anything that indicates that TCH causes long term immune system damage. My white cells were low during chemo but they have been fine since a few weeks after chemo. I'm 5 months post chemo and everything feels back to normal (except that I'm still waiting for my hair to get longer - it is well filled in but between 1 and 2 inches long - and the last bit of chemo nail on my thumbs and toes to grow out). 

We don't know how much benefit Stage I women would get from Herceptin alone. The risk with nothing is so high that I doubt that Herceptin alone would bring it down to less than 7% but that is based on extrapolating from women with larger tumors and results that say even Herceptin after chemo isn't as effective as starting Herceptin during chemo with a Taxane. I don't know that I would have been interested in entering a trial that did Herceptin alone. Perhaps if the Taxol plus Herceptin trial or other trials looking at lighter chemo with Herceptin for stage I have good results then one can think about trying Herceptin alone.

The whole world is a narrow bridge and the main thing is to not fear.

Dx 9/2008, IDC, <1cm, Stage Ib, Grade 2, 0/5 nodes, ER-/PR-, HER2+

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