Do I have a choice in treatment?

i am very sorry you are dealing with this. did they tell you what type of cancer it is? is it idc, what is the grade, are lymph nodes involved, is it hormone positive, what is the her2 status, what is the oncotype score if no lymph nodes are involved, all of these factors would go into making a tx recommendation and decision. perhaps you should seek a second opinion or ask your doctor what other options there are, but i would ask the above questions.

I would definitely get a second opinion.

I did.

And the second opinion doc gave me a much better protocol.

We would look at other choices if we were buying a refrigerator- but for some reason we don't think to do that with our own health. 

Also, you can have your tumor sent to an independent lab at a major cancer center for a second opinion on your pathology too! I recommend that also.

I am SO GLAD I got my second opinion. I think it made all the difference in the world.

and as an answer to your question, YES, your doctor should let you have some input in your decision. Remember, HE WORKS FOR YOU.

Good luck!

g 

Milkshake (now sims2addict),

This is going to sound harsh, so please don't take it wrong.  And, I am going to make some assumptions about your situation (your tumor) that may not be warranted.

I guess someone told you that you would get to choose what type of chemo you would get.  I was never told that, although I did decide to discuss some alternatives with my onco.  There aren't always a bunch of options from which to choose.  The chemo that was recommended for you (ACT) is a fairly common one.

More importantly, though, you have already made one choice.  It sounds like you would like to save ("conserve") your breast, despite the fact that you have a fairly large tumor in there (4.6 cm).  Even when embedded in a large breast, that is a pretty big tumor; and "big" sometimes translates to "bad".  Also, when the tumor is removed, the surgeon will need to remove a "margin" of healthy tissue around it.  A safe margin is generally 1 cm on each side; so the lump the surgeon will try to remove will be at least 6.6 cm in diameter.  That, of course, assumes that the current estimate of the size of the tumor is correct and it isn't even larger.  So, maybe one of the reasons for the aggressiveness of the chemo is because of the size of the tumor and the need to shrink the tumor so that you can have breast-conserving surgery.

Also, you said the tumor is very near, and perhaps in, your skin.  Once a tumor invades the skin, it can spread more quickly because of the very efficient lymphatic drainage system in the skin. You don't want the tumor cells to win this race.

You said this:  "my Her2 were all negative."  It's better for a tumor to be HER2 negative than HER2+, but it is also important to know whether it has estrogen or progesterone receptors (ER and PR).  A tumor that is ER negative is harder to treat, and generally more aggressive, than one that is ER+.  If a tumor is the size of yours and is also ER/PR (and HER2) negative, it would generally require an aggressive chemo regimen.

Finally, you said this:  "Is there an option where my hair loss risk is lower?"  Yes, there are chemo regimens where the risk of hair loss is lower than with ACT.  However, those regimens would probably not be appropriate for a tumor the size of yours or in a situation where the goal was to shrink the tumor before surgery so the remaining breast tissue can be conserved.

I know the hair loss issue is huge.  Believe me, I do.  I am wearing a scarf over an almost-bald head as I sit here typing this.  I lost my hair about a month ago, 2 weeks into my first treatment with Taxotere/Cytoxan.  But, if the choice is losing my hair versus risking that my cancer will return (and that is one of the trade-offs), I would not hesitate to lose my hair again.  And yet again, if necessary.  Hair grows back, and you really only get one good shot at breast cancer. That good shot comes in the beginning.  After it recurs, you are chasing it and it can be very hard to catch, especially if the recurrence is in tissue other than the breast.  And, I don't think oncologists these days "try" milder chemo regimens and then switch to something stronger if the first one doesn't work.  They use what they think will work best to effect a "cure" the first time (although the word "cure" is seldom used in the field of breast cancer anymore).  

The bottom line is that, regardless of whether you get chemo before your surgery or afterward, your oncologist would probably want to use an aggressive chemo regimen that incidentally would cause your hair to come out.  So, you do have a choice, but it's an ugly one.   You can choose to keep your hair, or you can choose to save your life.  That really is what it's all about.

This is a difficult situation we are in, but we can get through it and get our lives back when we're done. 

otter

sims2addict,

"I'm suppose to go next week to have the port put in and start chemo Friday, but I'm think of waiting until next Friday so I am more mentally prepared to handle it."

It's unfortunate, but procrastinating won't change anything unless you really need the extra time to negotiate with your employer for time off work, or to make arrangements for child care on your "bad" days etc.  Time will just allow your cancer to grow larger (although that might not make any difference, either, at least for a short delay).  The sorry fact is that it is very difficult, if not impossible, to be completely prepared to handle chemo.  You just have to ready yourself as best you can in the time you've been given, and then DO IT (like the Nike commercials).  The sooner you start, the sooner you'll finish.

I found out on a Friday that I would need chemo, which was a surprise.  I had an appt with my oncologist the following Monday (3 days later), and I started chemo the following Thursday--6 days after I learned I would need chemo. 

I think having more time at the other end (after chemo is finished) is more valuable than having time at this end, for a lot of reasons.  You just have to DO IT.

otter 

I agree with the others.  Of course you are fearful of chemo... and of course, no one would CHOOSE to get chemo... I wasn't thinking "oh boy, please let me get chemo!" 

I was lucky to have the choice of chemo, my bc was small, .8cm, and my onc said that he didn't think it was necessary.  But, my surgeon wanted me to get chemo, and I am glad I did.  We discussed different options for chemo, when I mentioned to my surgeon that I was getting 4 txs of Taxotere & Cytoxan, and said that I was upset about losing my hair, he said that I needed to use the strongest chemo I could, to make sure bc NEVER comes back!  My onc. didn't really give me a choice of which chemo to get.  I think that is very rare, to be given that choice. 

I am the biggest chicken, and if I got through it, then SO CAN YOU!! 

Good Luck!!  Please keep us posted. 

Hugs,

Harley 

Just a moment, did you get a second opinion? I just wanted to chime in here because I am a trained patient advocate. I have been to San Antonio this year and I saw the analysis of CMF vs ACT treatment in breast cancer patients.

It has been proven that ACT treatment the anthracyclines are FAR MORE CARDIO TOXIC and DO NOT BENEFIT women with breast cancer except those with an overexpression of HER. In other words, you should probably be getting less toxic treatment and YES your gut was telling you correct information.

These drugs, even though they have been proven to be no more effective then less toxic CMF treatment, (except again if you are her2neu overexpressive or positive)-- they are not being taken OUT of chemo regimes-- fast enough in my opinion. 

They can not only weaken the heart muscle but cause irreversable neuropathy in some cases.

I would certainly listen to your gut and ask your doctor to review the abstracts and meta analysis from San Antonio this year also here is an article I found online http://www.medscape.com/viewarticle/567978

In addition if you are node negative you may want to get an oncotype DX test-- this will tell you your 'RS' or recurrence score so that you can see how likely you are to recurr and benefit from chemo.

Good luck feel free to contact me at my website

http://youcanthrive.org 

I agree with AnnNYC.  I think some of the statements in the earlier post over-reach a bit:

"It has been proven that ACT treatment the anthracyclines are FAR MORE CARDIO TOXIC and DO NOT BENEFIT women with breast cancer except those with an overexpression of HER. In other words, you should probably be getting less toxic treatment and YES your gut was telling you correct information.

These drugs, even though they have been proven to be no more effective then less toxic CMF treatment, (except again if you are her2neu overexpressive or positive)-- they are not being taken OUT of chemo regimes-- fast enough in my opinion."

The link in www.medscape.com is functional, but you have to be registered to access it.  I read it.  It's a summary of a paper that was published this year:

A. Gennari, et al.:  HER2 status and efficacy of adjuvant anthracyclines in early breast cancer: A pooled analysis of randomized trials.  J. Natl. Cancer Inst. 100:14-20, 2008.

I have a pdf copy of the paper by Gennari et al., as well as an editorial that was published in the same issue of JNCI.  The paper by Gennari et al. was a "meta-analysis"--it wasn't original research, and it wasn't a prospective clinical trial.  It was a compilation and re-analyis of data from 8 papers that had already been published.

In their report, Gennari et al. acknowledged the following weaknesses of their own study:  "Only eight randomized clinical trials published data on the effects of adjuvant anthracyclines according to HER2 status.  Summary results rather than individual patient data were analyzed, and there was no centralized reassessment of HER2 status. The methods used to determine HER2 status differed among the trials."

Those weaknesses are significant, and they are common to many "meta-analyses."  They reaffirm the importance of conducting randomized, prospective clinical trials before wholesale changes are made in traditional chemo regimens.  Results of "meta-analyses" may be used to support arguments for new clinical trials, but they hardly ever justify major changes in clincial management of diseases. 

An editorial that accompanies the Gennari paper in the same issue of JNCI says this:

"...before we abandon anthracyclines as a component of our adjuvant chemotherapy regimens, we need to critically review the available data in light of our current understanding of the molecular heterogeneity of breast cancer. For example, we now know that molecular heterogeneity exists within both HER2-positive and HER2-negative tumors, which is associated with differing sensitivity to chemotherapy....

"Both HER2 and basal-like subtypes of breast cancer are more sensitive to chemotherapy compared with the luminal subtypes. ... from a mechanistic viewpoint the dominant hypothesis is that topo2 [the gene that encodes topoisomerase II alpha] is the actual target for the anthracyclines and that HER2 amplification and/or overexpression is simply a surrogate for topo2 expression.  However, the data from clinical trials linking topo2 gene amplification with selective benefit from anthracyclines remain weak because of small sample sizes. So the question of whether HER2-positive tumors are sensitive to anthracyclines because they express more topo2 or simply because they have a higher proliferaiton rate remains unanswered...."

"...optimization of adjuvant chemotherapy for patients diagnosed with breast cancer will depend on defining the baseline prognosis and chemosensitivity of each subclass of breast cancer beyond those crudely defined by HER2 status alone. In some sense, the meta-analysis by Gennari et al. may already have only historical importance in this rapidly evolving field. For patients, however, that is great news."

The bottom line is that we are at the leading edge (I hate that term) of sweeping changes in the way that BC is managed.  The problem is that oncologists only know a few of the answers, and they don't even know all the questions.  HER2 is an important variable, but it may not be directly linked to anthracycline sensitivity (i.e., there may be HER2- tumors that respond to anthracyclines, too).  Other characteristics that are indicative of rapid cell growth may be more important than HER2 status itself.  That's where Oncotype testing comes in; but it, too, may turn out to be too simplistic.  After all, it's just a formula that adds and subtracts weighted values from a bunch of lab results; and at this point the "recurrence scores" are based on outcomes from a fairly small number of patients.

More clinical trials are underway in all these areas.  I hope the results come soon enough for us to benefit.  Then, we'll have real choices.

otter 

I wanted to apologize, I believe I responded to this post thinking I was responding to another, where the pathology was different.

This is a case being a estrogen negative and her+ that statistics are agreed chemo is a good option.  I think that these types of cancer are the best statistically to benefit from this treatment.

 
I don't think I know how to work these boards yet!

Wishing you good luck and best outcomes in your treatment decisions, you're sure making educated decisions, and that will benefit you in every way. 

Sims2addict, Hi, I bought that game and wanted to play it so badly, but just could not figure it out.  So I sold it.  It looked like so much fun!

Back to your cancer.  At your age, they want to go after your tumor hard and fast.  Remember, the first shot at this is the best shot.  If you metastasize, like Elizabeth Edwards, that is it.  No second chances.  Not to say that many of these women don't live for many years, because many of them do.

But with a Triple Neg and that big a tumor, hit it with anything they want to do.  I remember Lance Armstrong, his doc gave him a 5% chance of beating his cancer, he had liver and brain involvement when diagnosed.  They did go full tilt boogie with him and he is still alive and well.

I am 9 years post treatment and a Triple Neg, also.  My cancer was small, and no nodes, and I am fine.

Hang in there, and come and post often, you are a sister now.

Gentle hugs, Shirlann

Hi everyone,

It's been 3 years since I did TAC; but I wanted to share something with all of you that helped when I was going through it all.  My son who is a Pediatrician told me not to worry about my cholesterol right now and to eat eggs.  They are a simple protein and your body needs lots of protein right now.  I had them maybe 3 times a week for breakfast.  I don't know if it was just my physical makeup or what; but I never needed a Neulasta shot.  My oncologist was even amazed.  Hope this helps someone.

God bless,

Chris