Stage 1 HER2+ 1.0cm Tumor

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. 

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+

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! 

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 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

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

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.

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.

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

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

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.

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

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.  

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.

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?

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.