To all recently dx. and those who are visiting the site who are

Jean · 02-07-2010, 11:39 PM

early stage and wondering about their treatment choices and what decisions to make....

http://journals.lww.com/oncology-tim...Small__.1.aspx

Don't take a small tumor lightly!
Jean

suzan w · 02-08-2010, 03:50 PM

A big "AMEN" to this!!! Thank you Jean!! XO Suzan

Laurel · 02-08-2010, 06:28 PM

Really great post, Jean! Thanks!

karen z · 02-08-2010, 09:22 PM

Important post Jean-
Thanks much
k

Jean · 02-08-2010, 10:36 PM

Thank you,
I am just so weary of hearing "my dr. said not to worry, it is small....etc. etc."

Jean

karen z · 02-08-2010, 10:45 PM

I know, I know. This will be a good post to bump up on a regular basis and perhaps result in an increase in more second (and third) opinions.
Best,
K

MJo · 02-09-2010, 07:14 AM

After reading a version of this a few weeks ago, I thinked my oncologist for being so aggressive with my treatment. Of course, I agreed to it, so I patted myself on the back to.

Laurel · 02-09-2010, 05:02 PM

That's right, MJO, because it takes some balls to go through chemo when your nodes are negative and your tumor tiny! That old argument that the side effects are more dangerous than the disease seems to be put to rest with this report. It's kinda nice to have chosen correctly for once!

AlaskaAngel · 02-10-2010, 07:17 AM

Well then, why bother looking for any treatment that is less traumatic, less uncomfortable, cheaper, and more effective if cancer patients are so delighted with the status quo? After all, radiation and chemotherapy pay their providers rather handsomely.

AlaskaAngel

Becky · 02-10-2010, 07:39 AM

I will not take sides on the aggressive treatment of Her2+ cancers. The problem on how to treat is touchy because there is still not enough information on individual tumors yet. Because of this, one has to lump themselves in with the possibility that you will be a person who would recur. For example, results on this study are not done yet but again, I emphasize that for distant recurrence free survival (5 yrs) is 85%. So, out of 100 women who have small tumors and are node negative, 85 will be fine with masectomy or lumpectomy with radiation. Of course, 15 will not - we need to find that 15 more consistently and aggressively treat them.

Secondly, the study does not separate the Her2+/hormone positive from the Her2+/hormone negative women. This is significant and may point that Her2+/hormone negative women need to be treated differently. Do more of this subclass recur than hormone positive. Bunches of other studies say so (the metastatic statistics as well as all the earlier Herceptin adjuvant trials). Anyway, I agree with both sides of this question as some Stage 1's need aggressive treatment but who are they? Unnecessary treatment is bad for the immune system and the body as well as costly (I absolutely guarentee this is where oncologists make their money - just remember the thread on the cost of a Herceptin treatment! This difference is due to the way the doctor's practice marks up the drug and is not due to Genentech). Research has to make a breakthrough on who to treat and who not to. Many women (even on this board) are treated when they don't need to be. You will just never know (with today's technology) if you survived because of treatment or you survived because you were in the 85% of women who didn't need treatment besides surgery.

AlaskaAngel · 02-10-2010, 09:12 AM

On this website many MANY of those with small tumors have repeatedly raised the question as to whether the use of trastuzumab alone would be effective for them rather than combining it with chemotherapy. To date the practice has been to err in favor of adding chemotherapy. Until there are trials that allow these groups of women with small tumors to try trastuzumab alone for treatment, there will be no answer to their question.

Laurel · 02-10-2010, 09:28 AM

Well said, Becky, and AlaskaAngel, I do agree that the less is more approach would be absolutely welcomed. I nearly crapped my drawers when my Onc spoke the "chemo" word to me. I mean, seriously, what was she thinking? I'm node neg for pity sake, woman!

At the end of the day, I rolled on the toughest go out there, because I subscribed to the theory of hitting it as hard as possible the first go 'round in the hope to never have to address it again. It was the singularly most difficult decision I have ever been asked to make.

While I do fervently pray there are better, less assaulting treatments for all of us regardless of stage, it is admittedly comforting to have my decision supported by research because it was not easy to toe up to the line every other week to be systematically poisoned. I frankly find chemo barbaric in its collateral damage on healthy tissue. I embrace diet and supplements in addition to the conventional wisdom of our day.

I do wonder where it will all shake out at the end of the day. Will they find that triple positives, such as myself, could perhaps avoid the whole chemo experience, opting for only Herceptin and Hormone treatment? Of course, thus far we seem to have improved survival rates with chemo, H, and hormone therapy, so perhaps not.

In summation, to all who are on the fence, my sage advise is to do your research, chose a course of treatment, undergo it, and then live in peace with your choice. The truth is to second guess yourself is not productive, nor in keeping with a positive mindset. In the future, hopefully a less debilitating treatment than Adriamycin/Cytoxin/Taxol/Herceptin will be in the pipeline for all of us. At this point in time, I would again chose it as my treatment, but hope research will prove that some or all of these drugs can be dropped from the protocol in favor of less aggressive treatment. May it be!

karen z · 02-10-2010, 09:33 AM

Given the aggressiveness of our disease and the effectiveness of currently known treatments for our disease, I am grateful for the investigators' research on this topic (which should lead to an increase in similar studies with perhaps more finely defined subgroups) and the post on the research.
Best,
Karen

Jean · 02-11-2010, 12:23 AM

A few points to digest...remember when the Oncotype DX test first came out? Then we were advised that all Her2 tumors would most likely come out on the high end score. I had the test done (only later to be told by Dr. Slamon) that all the dr. had to do was look at the KI67 level of my path report. Which was high.

I wish to express something for the 100th time and not go off course...by throwing in the of cost of treatment and all the rest of the objectives....such as treatment hurts our inmune system and kills our good cells and how damaging it is....and please do not think I am a walking screaming lady who insists all cancer needs chemo. It is a complex and difficult decision making process.

My point and I would like to keep the foucs on this especially for the newly dx. gals. IT IS NOT THE SIZE OF YOUR TUMOR IT IS THE CHARACTER OF YOUR TUMOR.

While we all realize that the larger the tumor the odds change for node involvement. While it is favorable to have an early dx. with a small tumor - the bets are off with her2.

Please understand my reasoning here...it is not about complaining about costs of treatment. (whats the point of money if we are not around to spend it)...it is not about the danger of treatment...(all treatment that is available today is harsh) and certainly has side effects.
But we have to make tough choices depending on our tumor and its own character. It is not about taking sides
on this issue...we are all on the same side...the side of
staying well and getting rid of this disease in our bodies that will only destroy us.

There are many aspects of medicine that are costly and that is just a fact of life. My son had to have a costly back surgery to the tune of over $100,000 between surgeon, hosptial intensive care for 2 wks, additonal week in the hospital...the anesthesia bill alone was over $9,000, blood transfusions, physical therapy. All medical care is exspensive...I know of none that is cheap or at a bargain.

We have been advised that the chemo has snygery with herceptin. Do I think the future may hold just herceptin? I sure hope so. I know of one lady on our site whose dr. did treat her with just Herceptin alone and she was an early stage patient.
Very few onc. will agree to that treatment. So until we have trials....and more research we have to work with what we have. I certainly hope that the near future will be able to tell women if they need chemo/and or herceptin...until then for someone like me when I am told that my small tumor has a high risk score of recurrence I opt for the chemo/herceptin and take the advice of Dr. Slamon...

As Becky points out 85 % will not recur - I strongly want to share with the newly dx. that don't think because you have a small tumor you can dismiss the fact of her2 bc.

I have a question to throw out...how many of you when you consulted with your drs..first the surgeon and then the onc. discussed the character of the tumor? None
of the three top guys I saw did, they didn't even think I should be more concerned even though I was her2. Tumor size was the major highlight. I was told that due to the size how lucky I was. It was only when I did research on the internet that I discovered material on the tumors characteristic. The perception of tumor size alone is outdated. Prognostic factors need to be employed to assess the risk profile with regard to the tumors biological factors.

Gene expression profiling is a new area in breast cancer treatment. This technology uses the genetic profiles of tumors to predict which cancer may be more aggressive and therefore, more likely to beneift from chemotherapy.

We are in the very early stages of understanding the molecular and genetic differences in breast cancer, which will continue to spur the development of new targeted therapies. Until then women have to question their dr's and ask lots of questions and not be swayed by tumor size alone by any dr.

jean

MJo · 02-11-2010, 07:58 AM

Because my tumor was small, I was about to go straight to radiation. In fact, I consulted with the radiation onc and had a start date. My medical oncologist interfered and insisted I consult with him first -- because of the Her2. He described Her2 as "evil" He gave me both sides of the story -- probably the surgery got all the tumor, 85% chance of it not recurring, etc. Then he gave me the other side: high oncotype score, Her2 status. Then he left it up to me. Believe me, I didn't want chemo. I was petrified. But I decided to hit it hard. The oncology nurse told me that if she had my diagnosis she would have done the same. After three A/Cs I was so sick that I didn't do number 4 and took a month to recover. I seriously considered not doing Taxol, but a after a month I felt healthy and strong and went ahead with it. The nurses cheered when I came back for my second round of chemo. This is not scientific evidence, but those doctors and nurses have seen some stuff and felt I made the right decision to be aggressive with my early stage Her2 cancer

Jean · 02-11-2010, 12:41 PM

Another interesting and recent informative article.

http://www.medpagetoday.com/Oncology/BreastCancer/18206

http://www.pharmanews.eu/roche/408-g...r-of-herceptin

This is the recent evidence for us to work with now.
I certainly hope that five years from we will have powerful advancements to treatment. These articles should offer some peace to the newly dx. lady, least we never forget how we felt when we were first dx. I have always felt that the dx. holds a two fold fear of the disease. First the dx. then the treatment is a huge burden on any woman.

AlaskaAngel · 02-11-2010, 01:58 PM

We can all agree that patients should be able to choose and genuinely be provided with the option that makes the most sense to them, given that at this point it is not possible to know what treatment will work for any given patient.

In particular, it is important to remember that at one time patients were not allowed to have the choice of trastuzumab at all, and it took persistent effort to make that choice a reality. Women were limited to choosing chemotherapy that stood a less than even chance of providing any benefit at all to them, whether or not they felt trastuzumab might be helpful in treating HER2 positive cancer.

It is certainly important for those who feel that adding chemotherapy is worthwhile to be able to have that choice. THEY do have that choice already. Given that there is no certainty that chemo will match any particular patient's tumor, it is those who are willing to do trastuzumab but not chemotherapy and who continue to be unable to have equal access to that regimen who are not being treated rationally.

The initial post of this thread emphasizes solely how important the option to use chemo along with trastuzumab is for these patients. It provides no option whatsoever for determining whether or not the addition of chemotherapy is genuinely necessary for small tumors.

Fighting for the choice of treatment is what is important here, not the criteria used for continuing to limit treatment for HER2 positive breast cancer patients to regimens that include chemotherapy without investigating the genuine possibility that trastuzumab alone may be the best answer for them.

AlaskaAngel

Jean · 02-11-2010, 02:56 PM

AA,
True enough that women do not have the option of herceptin without chemo. We have not had the trials of herceptin alone - when you consider that herceptin is truly a new drug only the last few years.

But we have to address what is available today. At least for those that have tumors that have high levels of Ki-67...and demonstrate other profiles that demonstrate that chemo/hercepitn should benefit them. While medicine has improved over the years (there is a wonderful book ) "the last 100 years in medicine" the advances in medicine is the most compelling in the last century.

The last two articles clearly demonstrate by the trial the improvements in patient survival just in the last 5.5 yrs. with the treatment of chemo/herceptin. Prior to this treatment women were fighting an uphill battle. Now at the very least we are gaining some ground.

While I do agree we need research in the treatment of herceptin alone - Just imagine the woman who has a small tumor of 4mm and the cut off for treatment is 5mm. How does she feel if she does want the treatment but the protocal is set. In life and medicine there will always be protocal and standards of care that we may not agree with, until the research proves differently. Doctors are terrified of being sued in todays world were everyone is on the ready to call their lawyer.

It was only in 1984 that the National Breast Cancer Awarness Month organizaiton came into being. So much has changed in the last dozen years...we still have a long journey ahead.

No single scientific discipline can answer the complexity of this disease. Many more paradigms need to be broken down to understand why controls break down as we sick/or get cancer.

All I attempt to do on this site is support the ladies that come to this site who have been dx. and are terrified of hearing they have breast cancer and may or may not need chemo/herceptin.

I guess I always attempt to see the glass half full, my mind positive and look for the cutting edge side of a situation...make a decison then pray like heck.

I promised myself I would not allow this disease to break my soul. I fought back each day to maintain my health, energy, deal with the loss that comes with this disease.
My hair is thinner, my joints ache here and there, the AI is stripping me of estrogen that does offer some good things, but being estrogen highly positive I have to accept what comes with that treatment. I can sit and brood, or I can put on my sneakers and go for a long strong power walk.

Someone recently said we should not be called survivors, but people who LIVE! ...I must agree.

Jean

AlaskaAngel · 02-11-2010, 04:15 PM

"Just imagine the woman who has a small tumor of 4mm and the cut off for treatment is 5mm. How does she feel if she does want the treatment but the protocal is set."

I imagine she would feel much like those who would like to have access to trastuzumab without chemo. Unless she is willing to search for and find a physician who will support and justify her treatment, and perhaps even pay for it herself, that is why we need to work together toward trials for this group of HER2 patients that are based on data using trastuzumab alone, and trastuzumab with chemo.

AlaskaAngel

Jean · 02-11-2010, 09:30 PM

AA,
I think we have gone off track, I started this post for an entire other reason. I believe you work in a hospital
and if that is true, maybe you would have access to
the connections to start the questions as to how to get those trials going.

Next time I speak with Dr. Slamon I will be happy to discuss this issue with him. I am not going to debate if a trial should have been in place and why it is not in place, my thread was geared in another direction.

The issue of chemo is a strong one for you. Are you on any active boards or committee to investigate this issue?
If so maybe you could share on another thread what we as a group can do to help get the trial and research on this issue moving forward.

Kind Regards,
jean