therapy and whether to do it.

djhawx · November 2013

I was just diagnosed with Stage 2A er/pr positive breast cancer with one lymph node positive. I have recently had surgery and have been scheduled for another to clear a wider margin. I am also scheduled for chemo, radiation, and adjuvant endocrine therapy. Whenever I mention the side effects of the chemical therapies, the mo I am seeing dismisses them as minor or a comment of "if you want to live".

With the resources that seem to be available to me, I have decided that the chemical therapies are less of an asset and have decided to forgo the treatments. I would be interested in knowing if others have discontinued or not started the rote therapies that appear to be offered?

curveball · November 2013

Have you had an Oncotype test? That can throw some light on the risk/balance benefit of chemo. Maybe your feeling that chemo is not an asset will be either changed or confirmed by the results of the test. If you score low, you may be right that the risks out weigh the benefits, even with a positive node. Once I got my test result, at the high end of the intermediate range, I had no doubt about doing chemo.

As for endocrine therapy, not everyone has debilitating side effects on tamoxifen or AI's. ISTM you could at least give them a try before deciding they are not for you. You might also investigate the possibility of ovarian removal instead of estrogen-blocking meds. I was already postmenopausal at dx, so this wasn't on my list of treatment options, but you didn't mention your age, so maybe this is a possibility for you.

Lastly, if your MO dismisses your concerns, it sounds to me like time to talk to another MO, at least for a second opinion, and maybe for a total switch. Saying you will follow the treatment plan "if you want to live" sounds manipulative to me, but the fact is that appropriate chemo and/or endocrine therapy are proven to reduce the risk of recurrence. Doing them doesn't guarantee that you won't have a recurrence or mets, and skipping them doesn't guarantee that you will (as implied by your doctor's remark), but they do reduce your risk. One thing I found helpful in reviewing treatment options was the cancermath statistical calculator. You can input your diagnostic information (age, tumor size & grade, etc) and see how much the proposed treatment plan will affect your risk. I find the pictogram view easier to understand than the mortality curves or. I used this calculator to help me decide between two different chemo regimens. The one originally suggested by my MO had two percentage points more risk reduction, but also a 3-6% chance of causing a side effect I didn't think I could live with, so I asked my onc what were my other chemo options and did one of the other choices rather than the original recommendation.

If it sounds like I am trying to talk you into reconsidering your decision, I think maybe I am a little. So I will add one thing on the end that I was told early in my treatment, that has helped me with some difficult decisions along the way. Choose the path you are least likely to regret, regardless of the outcome. If you pass on endocrine and chemo now, and later have a recurrence or mets, will you beat yourself up with "if onlies", or will you be at peace with your decision? If you do the treatments now, and by who knows what means, it later becomes clear that you didn't really need them, will you be OK with that even if you got a permanent side effect from the treatments? Only you can answer this question, and sometimes that's the best way to decide. Sometimes there simply aren't enough hard facts to base a decision on, and then the "path of least regret" might be the only way to decide.

BrooksideVT · November 2013

Definitely, as Curveball points out, an oncotype is called for, simply because it will clarify your chance of recurrence (I don't recall exactly, but I think it's chance of metastasis rather than local, curable tumors), with or without hormonal treatment. The test will let you know the percentage of protection chemo will offer. In my case, the percentage was just over 2% and it was an easy escape, with, thankfully, no need for second guessing. Having seen the scores, it was my onc who just yanked chemo right off the table. I am on arimidex, and very happy to have this drug to fight recurrence.

And it sure seems a sitdown with a different onc is called for. Your guy clearly believes feels chemo is important for you, but hasn't got a clue as to how to explain why he feels that way. Please don't let his Neanderthal communication skills disable your decision making in this area. You need to be able to make an informed decision, and this requires someone to actually discuss your individual pathology in conversation with the world of statistics and research, share the actual research with you (hard copy or website), and maybe address alternative treatments with you as well.

I am neither for nor against chemo and/or hormonal treatment for you , but very much in the camp of a fully informed decision. I'm also a bit concerned that your onc seems to feel so strongly that some of his medical interventions might make a real difference for you.

djhawx · November 2013

When I wrote this post, I was very depressed and felt as though I did not have any good options. I will be receiving my results to the test in about a week and will definitely keep your response in mind(keeping an open mind). I am extremely happy with the surgery and radiology teams, but the mos seem only interested in curing the cancer with no regard to how the chemical therapies would affect my life. I had one who felt that my sexual intimacy with my husband should not be a consideration at all, since I am post menopausal(58 yrs). This was mentioned in front of my husband. How am I going to trust the therapies if the doctors do not take my concerns seriously. All the side effects I brought up were actually dismissed by the second mo as "a bunch of whining women complaining on the internet". But when I research, I am finding articles which state that doctors tend to understate the side effects of the medication. I would never have believed that, but I do now. How can I go into any therapy if the medical oncologists available to me will dismiss my concerns.

BrooksideVT · November 2013

Of course those who post their complaints are the ones with the side effects--why else would they need the support we all receive here? And, yes, we whine when we need to. That said, we usually only whine when we have something to whine about. Your paternalistic onc cannot predict which side effects you will have, or to what degree. There is only one way to find out--try the drug and see. You can always quit. That said, I am certainly not suggesting you blindly say, "Yes, doctor," and follow his recommendation. His comment, for me, just confirms his Neanderthal status, and your need for a new doc. Your excellent BS or RO can possibly help you make another choice.

djhawx · November 2013

Thank you for your response. I read your post with interest because it seems many of the stats on your initial cancer are similar to mine. Am I to assume that the original chemo failed, and the subsequent endocrine therapy also failed. Now that you are on the tamoxifen, how are you handling that. Are there many side effects?

ruthbru · November 2013

I was 2A also, did chemo, rads, and 5 years of Arimidex with no problems. If I recall correctly chemo/rads gave me a 20% risk reduction & the anti-hormonals gave a 40% risk reduction of recurrence. I was really happy that I had something I could do for an extended time to reduce the risk that I ever have to go through cancer treatment again (and if it comes back, cancer treatments for the rest of my life....BLAH). Most people do not have terrible problems, I have 5 local friends who have done or are currently doing one sort of anti-hormonal or another, NONE are having serious SEs. It is only natural that people who do have trouble, are the ones talking about it, and of course, one would not take ANY drug (including aspirin) if one read and believed they would experience every potential SE listed. Go in with an open mind & give it a shot. You can always switch to something else or go off entirely if the SEs are bad.

I'd look for a different medical team personally; just because your doctor is an insensitive jerk, it does not necessarily mean that you shouldn't take an anti-hormonal. Don't like your dislike of him cloud your choices.

djhawx · November 2013

I see you are now on Taxol, and I just wanted to say good luck. I really appreciate your input and am seriously considering some chemical treatment. Hope all goes well. Thank you.

therapy and whether to do it.

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