Stage 1 HER2+ 1.0cm Tumor

07rescue

What sort of immune boosting therapies have you added and do you continue them now. I think this is a very interesting conversation and I really agree with all points. I am of the belief just as Blue dasher states that we need the chemo with Herceptin just based on the info illustrating the benefits of H during TC vs following chemo.

In addition I am concerned about my long term risks of other disease due to the impact on my white counts. I still struggle some with my white count ratio and the neutrophils keeping up with the lymphocytes

Mmm5

I used a variety of immune boosting herbs and medicinal plants recommended by a trusted Chinese herbalist I have been in treatment with for almost 20 years for a lifelong case of endometriosis and rheumatoid arthritis. She is extremely professional and while she is not an American MD herself, she has worked with many MDs and has brought some of the most trusted MDs from China to the US to work in our teaching hospitals. In China many hospitals integrate the culturally accepted traditional Chinese herbal treatments with western treatments, often enhancing them and ameliorating side effects and reducing serious complications. This has been vigorously pursued in the treatment of cancer in Chinese hospitals with the wherewithal to conduct research. I want to make it clear that much of the research done in China is poorly financed and is disavowed and discarded as inadequately controlled and regarded as being of low quality and reliability by American MDs, so it is a real judgement call as to whether one should pursue such an integrated course of treatment based on their body of research. I choose to in large measure because I have a long established personal relationship with a provider who I know to be very conservative and safety oriented by nature. Absent that kind of relationship it would have been a more difficult decision to make. I felt safe in her care, or as safe as anyone can feel who has cancer.

I have heard of quite a few people who underwent chemotherapy and saw their white cell counts diminish and never return to normal, including several people who participate on this board and the HER2support board, as well as in non internet life. I started out with an abnormally low white cell count, so believed myself to be at greater risk of serious immune system impairment if I underwent chemotherapy. I really felt that I had to get Herceptin, and adjuvant chemotherapy was left up to me to decide.

This is what ultimately convinced me to do chemo: 

I had a reddish skin lesion that appeared on my breast shortly before I found my cancerous lump, right over it, which progressively spread in numbers over both breasts during the time I had to wait to have my double mastectomy (2 1/2 months). After surgery the skin lesions remained in the skin that was left intact on my sternum, a strange lingering reminder of the presence of cancer after all breast tissue was supposedly removed, down to the fascia. I was concerned about those persistent lesions, although there is no scientific evidence to warrant my worry. I simply had an intuition that my body was warning me in the only way it could that the danger of cancer had not been surgically removed, and that it needed help.

3 1/2 months later (my chemo was delayed because my life partner of 35 years died in the interim, requiring my full attention throughout those months, along with serious issues on the oncology service I was using, requiring a change of oncologists) I started chemo plus Herceptin (TCH X 6). Those remaining little brownish red spots disappeared entirely three days after the very first TCH treatment. They have not returned.

I suppose it could have been a coincidence, but for me seeing those remaining reminders of my cancer disappear was very convincing that I had done the right thing pursuing further treatment for my .9 cm T1bN0M0 cancer. I just had to figure out how to stay intact despite bad kidneys and poor immune function from my lifelong battles with incurable diseases. For me, Traditional Chinese Medicine was the answer. 

This type of herbal approach is very individual, so for the best treatment I would recommend going to a reputable practitioner if available. If there is no one in your area there are a couple of widely recommended immune boosters, such as Ganoderma Lucidum (also known as Reishi mushroom) that boost white cell counts for many people. This kind of approach is best undertaken with an evaluation and supportive herbal therapy specific for your personal constitution, especially if you have other health issues in addition to cancer. There has been some Chinese research done that reassured me that it would enhance the effects of my chemotherapy, not diminish or negate it. 

I never like to encourage anyone to pursue alternative care without giving this very long explanation of my choices, and to make it clear that there is not an accepted body of sound research to support such a choice. But so far it has worked well for me, despite my precarious health and long term illness. I needed the herbal support for my immune system in order to survive chemotherapy, otherwise I could not have lived through it. Even with it, I had bouts of kidney failure during chemo, and have a seriously lowered MUGA from my continued Herceptin treatments (I might has to take a Herceptin holiday).

If an alternative therapy helps keep someone in chemotherapy who otherwise would have discontinued due to serious adverse events, it may be justified on that basis, even absent rock hard evidence, to my way of thinking.

Best of luck to everyone with their choices. 

Bluedasher,

This discussion is a really good one, at least in part because we are trying to get across what has been documented, and asking questions about what we don't know, without taking it personally.

I wasn't able to understand what I needed to know when I was diagnosed, to be able to make an intelligent choice for my treatment. At that time, the trials for trastuzumab had not been completed, so treatment was CAF, CMF, or CEF, and I think maybe some AC. Aromatase inhibitors were only available for those with mets. Tamoxifen was the only drug available for treatment after chemotherapy. Trastuzumab was not recommended yet. Patients like me were being tested for HER2, but the results were not discussed with us because the trials were still in progress. The only "rule" was that chemotherapy was recommended for all bc patients with tumors over 1 cm, and in some cases could be considered for tumors between 0.5 cm and 1.0 cm. This rule was based on trials that are now rather ancient, when breast cancers were lumped all in a pile. 

Because we all have cancers with so many different characteristics, it is really hard to get an understanding of what has actually been documented so that each of us can make a decision that fits our individual situation. I'm hoping our discussion will make the distinctions more obvious.

What is not recognized (because of the natural tendency we all have to base decisions on fear) is the difference between what has been documented and what hasn't in terms of chemotherapy, no chemotherapy, chemo with trastuzumab, and trastuzumab alone.

The trastuzumab trials did not document anything to support chemotherapy with or without herceptin for those patients who are hormone receptor positive and HER2 positive with tumors under 2 CM that are node negative. The reason I say that is because those patients were excluded from the trastuzumab trials. Right? Or not?

The second documented factor is that most HER2 positives are hormone receptor negative. So when considering trial outcomes where it seems as if HER2's benefit from chemotherapy, the benefit is for those who are HER2 if they are also hormone receptor negative, like Bluedasher and the majority of HER2s. Thus, because hormone receptor positives are a minority they are being swept into the belief that chemo is helpful to them "because being HER2 is more aggressive".  Again -- keep in mind that the trastuzumab trials using chemo plus trastuzumab excluded the hormone receptor positive patients under 2 CM and node-negative. I'm talking about proof, not fear.

These are patients who may benefit from trastuzumab alone. However, there is no proof of that because no adjuvant trials have been done to show whether trastuzumab alone is effective for node negative hormone receptor positives under 2 CM.

Please do critique what I am saying. It is hard for me to know that I chose chemotherapy that provided no significant documented advantage to me because of the damage it has done to me, and in addition I have never had trastuzumab. I had CAFx6.

Bluedasher, another point I would like to discuss is that when a group of patients who are marginal at best in terms of benefitting from a therapy like chemotherapy, we tend to "think" in terms of the chemotherapy itself, alone. However, it isn't given alone. It is usually given with other support drugs, and those drugs can be detrimental. For example, almost all patients receiving chemotherapy get steroids with the chemotherapy. For many, the steroids bring weight gain. The chemotherapy is intended to shut down hormonal production, and so that causes these patients to have lower testosterone levels. The steroids cause breakdown of muscle tissue during the long period of disability and weakness, and because of having far less testosterone from that point on, there is less ability to rebuild muscle tissue after treatment. Chemopause encourages weight gain. Weight gain is a risk factor for recurrence. Thus, although the chemotherapy was given and intended to prevent recurrence, at the same time the drugs given with the chemotherapy contribute to recurrence. For those whose tumors are under 2 cm and node negative, chemotherapy does add to their risk -- not only in terms of weight gain, but also in terms of developing some additional potential for leukemias.

The added risks don't stop there. In addition, chemotherapy often includes the administration of blood boosters, especially for dose-dense treatments. These drugs have risks. They can be essential -- but if breast cancer patients only benefit marginally from chemotherapy IF AT ALL, how essential is this additional exposure to blood boosters for hormone receptor positives under 2 cm with negative nodes?

The added risks don't stop there. In addition, the combination of chemotherapy with radiation increases the risks as well. If one has just the radiation and doesn't add the chemo, the risks are lower.

The added risks don't stop there. Those who have chemotherapy generally go on to be tested more frequently with exams that include more radiation, such as CTs and bone scans, because of physical complaints brought on by the discomforts brought on with chemotherapy, and the inability to distinguish between chemo-caused physical discomfort and other causes for physical discomfort. For example, often CTs are used for patients whose labs (done because of chemotherapy) are abnormal.

One edit here -- In addition, chemotherapy adds significantly to the potential for osteoporosis and osteopenia, which are causes for bone fractures; and we know that bone fractures are a risk for earlier death for some patient groups.

Yes, there is still the need to shut down hormonal production for hormone receptor positive patients, but that can be done surgically and with other drugs that don't require all the problematic treatments that go along with chemotherapy.

Using documentation from trials that are based on hormone receptor positive patients staged higher than 2 cm plays more on the fear factor than truth.

Please do point out any blind spots that I have.

Thank you,

AlaskaAngel

AlaskaAngel, first off, I would like to correct your statement that "most HER2 positives are hormone receptor negative" which leads you to the assumption that the hormone positive ones are swamped out in the trials by the hormone negative. HER2+ cancers are not hormone positive as often as HER2- ones and misinterpreting that kind of statement leads to this error. From a few sources, about 77-78% of HER2- cancers are hormone positive and about 49--50% HER2+ cancers are hormone positive, (see http://www.medscape.com/viewarticle/502685) so that is lower than for HER2- cancers but still about half the HER2+.

In the BCIRG 006 trial, 54% were hormone positive. Hormone negative was one of the risk factors that allowed a woman with a node negative tumor between 1 cm and 2 cm participate in the study but it wasn't the only risk factor. On the other hand, I haven't seen anything that breaks out the number of node negative 1 to 2 cm tumors in that study and I'm assuming that it was small. About 29% of the cases in the study were node negative.

I don't base my decisions on fear. I'm an engineer and try to analyze all the facts. However, as an engineer I also realize that the information often isn't complete and I need to go with the best extrapolation possible from the facts. I had cancer last fall and had to make decisions based on the information available, not on trials that it would be nice to have seen. It seems like your arguments against chemo are based more on fear than on facts.

Adriamycin (and perhaps other antrhacyclines - I haven't looked at them) has a small (~ 0.2%) of producing Leukemia. They also have a long term risk of heart damage and about 2% of the time reduce heart function to the point where the patient can't have Herceptin. Since Taxane based therapies like TCH don't have these risks and produce about the same reduction in recurrence, I personally think that Adriamycin and other anthacyline based therapy is a poor choice for a small node negative HER2+ cancer (and possibly that is true for larger and node positive cancers though I understand people wanting to treat those with something that has data from more trials). 

Steroids - I think you are exaggerating the danger/impact of the small amount of steroids that one might be given to cope with chemo. In an earlier period of my life when I was having asthma problems, I was on a steroid, prednisone, for months at a time. Many others are on steroids including decadron for long term for treatment of other disorders. For chemo treatment, I had 16 or 8 mg a day for the 3 days around a chemo treatment. I don't think 18 days of steroid use over my 4 months of chemo had a long term impact on me. 

I can't speak to chemo effect on long term testosterone levels as I haven't looked into it. I know that chemopause is more likely to be permanent the older the woman, but since I was post-menopausal shortly before the onset of chemo, I don't have personal experience with that. I had some muscle loss during chemo but was surprised how quickly afterwards I re-gained strength. 

The only blood booster I got was Neupogen for white cells, which my doctor doesn't use automatically but only gives if the low white cell count is causing problems. And we used the minimum dose that maintained my white cells at a reasonable level. I think Neulasta may be overused. I got transfusions twice for low RBC. I think the data on red blood cell boosters indicates that they may increase tumor growth and therefore shouldn't be used with adjuvant chemo.

I have already agreed with you that there is a lack of trials on node negative small HER2+ tumors. The data on how high the recurrence for them is without chemo is pretty new (Dec 2008) and there are more trials starting now but it will take years for them to produce results. Herceptin testing in adjuvant chemo started less than 10 years ago and there are a lot of variables to test so it isn't surprising though it may be frustrating that those tests haven't been run. There is also a lack of trials in other areas such as testing shorter duration of Herceptin vs the year that many of us get (only one small trial, FinHER). 

There are test results that show that Herceptin slightly reduces the occurence of new primary cancers compared to chemo without Herceptin.

The data from the MD Anderson study on women who got no chemo (and no Herceptin because it wasn't even used for adjuvant then) for node negative tumors smaller than 1 cm, says HER2+ cancers had 23% recurrence and 14-15% distant recurrence. I'm sorry that they didn't break out the hormone positive vs hormone negative numbers for HER2+ in the results they showed, but I believe that they would have if they showed a significant difference and as I mentioned before about half the HER2+ tumors are hormone positive. With nothing but chemo and rads, that's almost a one in 6 chance of getting mets (aka distant recurrence). That justifies doing something even if that thing produces small risks so the question becomes what?

TCH had lower long term risks and lower short term side effects than AC-TH while producing the about the same benefit. In node negative tumors (even if they were larger than ours), it dropped recurrence to about 7% which is a lot better than 23% and IMO worth any slight long term risks especially since 15% were mets. While we don't know what the improvement would be for our smaller and, in your case hormone negative, presumably it reduces recurrence to something lower than that.

I don't think there is any data that indicates that the need for scans due to discomforts is any higher for women who had chemo than for those who didn't. The treatment related scans that I've heard of have been mostly to check that lumps from surgery and rads were scar tissue vs new tumor growth and I don't think chemo plays a role in that. Overall, the radiation exposure from the scans is pretty small.

Would just Taxol plus Herceptin be about as good with less long term and short term risks? (The carboplatin has a pretty healthy share of the side effects.) We don't know, but there is at least one trial starting looking at that for small node negative HER2+. 

How much of the gain would we get with Herceptin alone? We don't know. We know that for bigger and node positive tumors, recurrence dropped by 36% (hazard ratio 0.64) when chemo was started with Taxol in a 3rd generation chemo rather than starting it after Taxol. This may indicate that there is an interaction where Herceptin at the same time as a Taxane does a better job. How much this applies to node negative less than 1 cm tumors or those between 1 and 2 cm and hormone positive, we don't know.

Orange 1 and Bluedasher

"It seems like your arguments against chemo are based more on fear than on facts."

Are you saying that those trials match the general HER2 positive population?

While it is a bit uncomfortable to be mistaken, my goal is to straighten out confusion whether it is mine or anyone else's. Getting the most accurate answer is what counts here.

I don't know if those studies would be truly representative of the percentages of all HER2s, since they use selective criteria for the patients included in the trials.

For example, this is the selective criteria used for BCIRG 006:

"Inclusion criteria:

• Histologically proven breast cancer with an interval between definitive surgery that includes axillary lymph node involvement assessment and registration of less than or equal to 60 days. A central pathology review may be performed post randomization for confirmation of diagnosis and molecular studies. The same block used for her2neu determination prior to randomization may be used for the central pathology review.
• Definitive surgical treatment must be either mastectomy with axillary lymph node involvement assessment, or breast conserving surgery with axillary lymph node involvement assessment for operable breast cancer (T1-3, Clinical N0-1, M0). Margins of resected specimen from definitive surgery must be histologically free of invasive adenocarcinoma and/or ductal carcinoma in situ (DCIS).
• Patients must be either lymph node positive or high risk node negative. Lymph node positive patients will be defined as patients having invasive adenocarcinoma with at least one axillary lymph node (pN1) showing evidence of tumor among a minimum of six resected lymph nodes. High risk lymph node negative patients will be defined as patients having invasive adenocarcinoma with either 0 (pNo) among a minimum of 6 resected lymph nodes or negative sentinel node biopsy (pNo) AND at least one of the following factors: tumor size > 2 cm, ER and/or PR status is negative, histologic and/or nuclear grade 2-3, or age < 35 years.
• Tumor must show the presence of the her2neu gene amplification by Fluorescence In-Situ Hybridization (FISH analysis) by a designated central laboratory."

To continue: 

The distribution that I've seen has indicated that 2/3 of the general HER2 positive population is HR- and 1/3 is HR+, which matches this particular recent one:

http://www.ncbi.nlm.nih.gov/pubmed/18256926  

RESULTS: The TMA included 354 cases, representing 51% of 687 breast cancers in the HTR (1995). The HTR and TMA cases were similar with respect to patient demographics and tumor characteristics. Seventy-six percent (76%, 268 of 354) of TMA cases were HER2+ and/or ER+, i.e., 28 HER2+ER-, 12 HER2+ER+, and 228 HER2-ER+. There were 67 HER2-ER- cases and 19 were unclassified.

I honestly would like to know. I do think our perceptions of it color to some degree how EACH of us think about the risks involved with being HER2 positive, and also our perceptions of the value or importance of various therapies.

Sincerely,

AlaskaAngel

We come from different viewpoints about how best to help others deal with breast cancer, but I do believe that is what we each are hoping to do.

I won't minimize the experience of those who, as a result of doing chemo, have or are actively suffering from:

1 "Adriamycin (and perhaps other antrhacyclines - I haven't looked at them) has a small (~ 0.2%) of producing Leukemia. They also have a long term risk of heart damage and about 2% of the time reduce heart function to the point where the patient can't have Herceptin."  ........After all, who knew when I was among those doing the standard recommended chemo that it (or any chemo given today) could turn out to be that risky?

2. Your argument discussing steroids is limited to personal experience and neither of us will win that one.  I'm glad the steroids were no sweat for you, but they were and still are for me, despite regular exercise and consistent dieting, and so in all fairness I will make the equally valid claim that you are underestimating the effect of steroids on a strictly personal basis. On a medical basis the effects of repeated steroid use are documented, including osteoporosis and diabetes.

3. I don't minimize the experience of those people who did chemo and have recurrence based on having had chemo that came with the rbc boosters that were also never a part of their so-called informed consent.

4. "I don't think there is any data that indicates that the need for scans due to discomforts is any higher for women who had chemo than for those who didn't." I'll leave this one up to our readers to decide based on what they know. Those who do chemo will know all too well how often they are scanned for elevated lab tests,  normal gastroesophageal tract irritation from chemo  (gotta check and see if the right upper quadrant pain and elevated labs from chemo could be liver mets!), below-normal lab tests, simple back pain, the bony aches that come with medications, and even for simple vertigo. People who don't go through chemo don't spend their lives so steadily involved with medical personnel. They are busy living normal lives, and do not have as many scans as people who undergo chemotherapy.

4. You and I agree that there is very little documentation to support the use of chemotherapy for small node-negative tumors, especially for postmenopausal women with HR+ tumors, but precious few patients are honestly  told that. They are needlessly subjected to all the risks above, which you feel I am over-rating.

5. "The data from the MD Anderson study on women who got no chemo (and no Herceptin because it wasn't even used for adjuvant then) for node negative tumors smaller than 1 cm, says HER2+ cancers had 23% recurrence and 14-15% distant recurrence. I'm sorry that they didn't break out the hormone positive vs hormone negative numbers for HER2+ in the results they showed, but I believe that they would have if they showed a significant difference and as I mentioned before about half the HER2+ tumors are hormone positive. With nothing but chemo and rads, that's almost a one in 6 chance of getting mets (aka distant recurrence). That justifies doing something even if that thing produces small risks so the question becomes what?"  

The risks as noted above are not "small " to those who end up with problems because they did chemo. The question is, why not just hormonal treatment and trastuzumab for those whose chemo characteristics get no benefit from chemo? Since there is no documentation specific to small tumors that trastuzumab with hormonal treatment would not reduce recurrence for HER2 positive ER/PR positive small tumors, why continue to spend our cancer research on  yet more chemotherapies with  trastuzumab for small tumors? How many patients who "do the time" with chemo realize that if they do recur, they have already locked doors behind them? I'm seeing clinical trials now that are taking only the newly diagnosed for the latest and greatest chemos.

I read with interest all the posts here and it was very reminiscent of all the research I did two years ago to help me make the decision I made.  I had Stage I,  Her2+, ER/PR+, tumor 1.2 cm. and no lymph node involvement.  I had a lumpectomy and 4 days later a wide excision and the wide excision was negative of cancer.  I chose 33 radiation treatments and I am on Tamoxifen, (which I'm happy to report has not caused any unpleasant side effects.)  At the time, all the information I had convinced me that chemotherapy would be of very minimal benefit in my case.  I am not against chemo but feel it is too widely used in many cases where it is of no benefit.  Breast cancer is on my mind daily and that would not have been different if I had taken chemo.  My mammograms, ultrasounds and MRI have all shown good results and free of cancer.  It's a difficult decision to make, one that shouldn't be made out of fear.  As one nurse told me, when you read the obituaries and someone has died after a "long battle with cancer", was it the cancer or was it the side effects and damaged vital organs from the chemotherapy?  I had numerous breast cancer survivors who had taken chemo tell me that in the absence of lymph node involvement and no evidence of being anywhere else, that they would not take chemotherapy.  The treatment that I took (lumpectomy, radiation, hormone therapy)  was the "gold standard" up until all the experimental trials started.  Adjuvant treatments are additional backup treatments for cancer that appears to be gone after the surgery.  The radiation treatment I took was a backup as is the Tamoxifen.  I do not feel like I'm playing Russian roulette.  Reality is, you just don't know what works and you certainly don't get a guarantee with any of it.  I was 53 at the time I was diagnosed.  It had been 7 months since my last period. I had been on birth control pills for 5 years prior to that.  I will always feel that that was a factor.  I would have taken Herceptin but they wouldn't give it to me without the full chemo regimen.  What we need is a proven, tailored, treatment individualized for each patient.  So much is still in the experimental stages.  If I continue with no recurrence, then I definitely made the right decision.  Had I taken chemo, then it would have been said that "chemo cured me" when in fact the cancer was already gone from the surgery.  So, the statistics don't always give a clear, accurate picture.  My advice is to research and realize that you have choices and options.  Drug companies like to compensate doctors who give them a lot of business.  Sad, but true.  And how many people are unnecessarily harmed by drugs that were of no benefit to them?  I hope and pray that we all beat cancer and that someday soon, there will be a much easier treatment and prevention.  What is right for one person may not be what's right for another.  But, we have to support each other's decisions and realize that we are a part of the cure, we are contributing in a positive way for future generations to be cancer free.  I will pray for our sisters who are agonizing over this, that one day, hopefully in our lifetime, a cure will be found and preventative measures will be discovered.  -- Janet

Curious what your chemno regimen was since I am very similar and considering options now

Hello Ladies,

I see it my way- despite the type of chemo used in recent clinical trials (BCIRG 006 or HERA) herceptin always proved to give ABSOLUTE benefit of around 6 percent in terms of disease free survival:

http://img.medscape.com/slide/migrated/editorial/cmecircle/2007/7168/images/winer/22.jpg

http://www.senology.it/SGallen.pdf

I think the differences in RELATIVE risk ratios (chemo+herceptin to single chemo) are due to different chemo regimens used in adjuvant treatments. Please look at the curves of control (no herceptin) arms in BCIRG 006 and HERA. The BCIRG 006 control arm is doing much better (77% in BCIRG and 71% in HERA) and this is the point. BCIRG 006 used best (strongest) available chemo regimens on the planet (for example AC->T), while HERA approved any, very often totally obsolete chemotherapies without taxanes and even anthracyclines.. And now, look at the curves of herceptin plus chemo arms, the absolute benefit in BCIRG 006 and HERA is the same (HERA 6,4%, BCIRG 5-6%)..

So as You see herceptin always decreases the risk of relapse by circa 6 percent (no matter which trial You take), but the majority of benefit for us is made by chemotherapy

Orange thank You for Your reply

I respect Your point of view but I can't agree with it.

As You see here (for example):

http://img.medscape.com/slide/migrated/editorial/cmecircle/2007/7168/images/winer/22.jpg

the gap between the curves in BCIRG 006 is ALWAYS the same. In second, third and fourth year the outcome is 5% for TCH (second year 92-87=5, third year 86-81=5, fourth year 82-77=5) and 6% for ACTH (93-87=6%, 87-81=6%, 83-77-=6%) so like in the HERA. In the HERA the gap after first year of treatment is also always the same over time (about 6 percent).