Mixed Messages from doctors

Mavericksmom

One would think, having gone through breast cancer twice, that I would have no problem moving on “question free” with follow up care. Instead, I am confused at the mixed messages I get from my doctors.

I don’t understand:

Does having 24 negative nodes removed the first time and none removed the second time (16 years later), mean this time I am node negative? Why? Are there no other nodes that the cancer could go to?

My doctors said my nodes were negative when they sent my sample to Oncotype Dx. My score was 21. No need for chemo due to being older than 50.

Does this mean I have low risk of recurrence or of getting cancer in my other breast or both?

If I am low risk, as I suspect, why do I need to see my MO/BS every three months? Why can’t they just let me move on with my life, see me once a year?

Meow13

I think it is standard the first year after dx to have appointments every 3 months, then after 1 year you get 6 month appointments. Then eventually it is once a year.

I am suprised that you received chemo in 2003 and not tamoxifen. Not sure why you weren't put on hormone therapy ASAP.

Mavericksmom

Meow, The “no Tamoxifen” was my choice. Without going into a long explanation suffice to say I was not and I am still not a fan of the lab that invented Tamoxifen. I worked 7 years in research for a major drug company so I am aware of things most people don’t know about. Also, IMO the drug is way over used. I don’t regret my choice at all!

I am reluctantly on Letrozole but if I get side effects I will stop it.

Meow13

You know if I could go back I am not sure I would have done the AI drugs. The benefit doesn't look particularly convincing and my bones and skin to a hit on them.

Beesie

The Oncotype test results only provide an assessment of the metastatic risk from your current diagnosis. It does not provide an estimate of local recurrence risk, and it says nothing about whether you might develop a new primary in the contralateral breast (or the ipsilateral breast for those who had a lumpectomy).

The chemo recommendation from the Oncotype result is an assessment of the amount of risk reduction benefit that chemo will provide, and whether this benefit is greater than the risks that you would be exposed to by having chemo. A "no" recommendation on chemo simply means that the risks of chemo outweigh the benefits, and that your long-term prognosis therefore will be little different if you have endocrine therapy alone, rather than chemo and endocrine therapy. It doesn't mean that you have no risk. And whether it's a "low" risk depends somewhat on your personal definition of what constitutes low risk.

The appendix of the TAILORx study included this chart, which shows 9 year metastatic risk for those over age 50, based on the Oncotype score and the treatment.

What the chart shows is that at Oncotype 21, the risk level with Tamoxifen alone is actually about a 1/2 percentage point lower than the risk with chemo plus Tamoxifen. Both risks are in the range of 5%. This information should have been included in your Oncotype report, provided to you by your MO.

As for why the MO sees you, it's at least in part because you are on an AI and the MO's job is to monitor how you are doing on the drug and to recommend actions to reduce side effects.

Mavericksmom

First let me add to my last post that my view of Tamoxifen was from 2003. Because I am well past menopause now, (chemo put me into menopause) I have not read anything about Tamoxifen since 2003, so some of the reasons why I refused in 2003, may no longer be true.

Beesie, THANK YOU!!! Your information was very helpful! I did not get a chart like that chart above, but I did get a recurrence score and absolute chemotherapy benefit. It showed that chemo would not benefit me. <1% for chemo, but they did say Risk of distant recurrence at 9 years is 7% with AI alone. I have no idea what the 9 yr risk would be without the AI. My MO told me once, but it was when she told me I didn't need chemo this time and I was so happy about that, I barely absorbed anything else she said.

I really don't feel any better having the statistics. I was given a false sense of being cured the first time. I wish I had a dollar for every time one of my doctors told me I had such a tiny cancer and that after 5 years I was basically cured!

Beesie

Is this second cancer considered a recurrence or a new primary? There is a big a difference. If this is a new primary, which seems likely after 15 years and since your first diagnosis was IDC and this one is ILC, then it means that your first cancer was effectively treated. The simple fact is that as women, we are at risk to develop breast cancer. Having had breast cancer one time - even if successfully treated - doesn't make us immune from being diagnosed again. In fact because we've had breast cancer one time, we are actually higher risk to be diagnosed again. And as we get older, our risk to be diagnosed a second time increases, just as the breast cancer risk for every woman increases as she gets older. If this is a new primary, the fact that you got breast cancer this second time in no way reflects on the success of the treatment for your first diagnosis.

If your risk of recurrence with an AI alone is 7%, the your risk without an AI is approximately 10% - 11%. This information is not provided in the Oncotype results, but there have been numerous research studies that have shown that AIs cut the risk of a metastatic recurrence by about 1/3. So doing the math, this means that your base risk without the AI would be 10% - 11%, and taking the AI and reducing your risk by 1/3 would bring it down to 7%.

Mavericksmom

Beesie, they called it a recurrence, but I don't know why. I thought the same as you, that it was a new primary.That would mean my gut telling me NOT to take Tamoxifen in 2003 was the right decision!

As for my current risk. If my risk is only 10-11% without an IA why in the world would I agree to that???? Why would anyone agree to that? It would never be 0% risk. If I have between a 89-90% chance of NOT getting cancer without taking an AI, there is no way I would take it!

It sounds like the doctors are pushing drugs on us because it is really all about money and not about helping us! I will ask my MO about this in November, but if she confirms what you said, I am NOT taking the stupid Letrozole! Seriously, why would I take a drug that is causing me to take other drugs to combat the side effects just for a stupid hypothetical 3-4%? That simply doesn't make sense!

I remember telling my MO I would not take the IA unless my risk was of it returning was 40% or higher! Sounds more to me as if I should be good for another 16 years, not doing anything. Most likely I will die of something else in less than 16 years.

I am not afraid of getting cancer again, I am afraid of having to see cancer doctors again! Both times I came out physically worse than when I went into it.

Beesie

"If I have between a 89-90% chance of NOT getting cancer without taking an AI, there is no way I would take it!"

It's not a 89%-90% chance of not getting cancer, it's a 89%-90% chance of not dying from this diagnosis of cancer. Which means that without any other treatment, there is a 10%-11% chance that you will develop a metastatic recurrence which will eventually lead to death. So the 3%-4% benefit is a 3%-4% chance of saving your life.

That might not make a difference in how you look at it, but it might. Personally I would not take an AI or Tamoxifen to reduce my risk of an in-breast cancer by 3%-4% (that is in fact the decision I made 14 years ago). But I would at least try it if it reduced my risk of death by that amount.

Mavericksmom

Regardless, it is still hypothetical and I see no difference when talking such a small percents.

I will discuss with my oncologist but it isn’t enough of a benefit to outweigh the risk of limiting estrogen. Estrogen is still needed for brain and bone health in menopausal women

Yogatyme

I am having exactly the same struggle re: whether to take Letrazol. My tumor was 7mm, no node involvement and I had BMX bc I have BRCA1 mutation. My only other health issues are hypothyroidism and glaucoma. I eat well, exercise and have a BMI of 21. Since estrogen after menopause is primarily from body fat I feel like my risk is lower but still reading and considering all my options. Interesting enough, my eye dr said, “remember,cancer research is primarily driven by big pharma”.Good luck with the decision making.

Mavericksmom

Yogatyme, amen to your eye doctor! I agree 100%! Breast cancer is big business!

I am going to talk with my oncologist but I am so tired of one size fits all cancer treatments! AI’s are just that, so is tamoxifen. So is radiation and to an extent, chemo. I do think the OncotypeDx is the greatest advancement for breast cancer patients because it replaced the old standard of 1 cm or greater automatically needing chemo. I am very thankful my score showed chemo would not benefit me. That test wasn’t available when I had cancer in 2003.

I need my doctor to tell me I have a minimum of a 20% chance of getting a metastatic recurrence if I don’t take the Letrozole in order to continue taking it. I am going to discuss this with my MO, but I am not as afraid of cancer or death as I am of breast cancer treatments! Oncologists don’t like to talk about what the lack of sufficient estrogen does to the brain. I don’t want to live longer and but end up with Alzheimer’s! They are now studying the effect of AI’s on Alzheimer’s occurrence. Too early for conclusions one way or the other. Oncologists don’t like to talk about quality of life vs quantity of life. I hate their “magic” numbers of 5 years, now 10 years. If more women live five years after diagnosis (or ten, etc!) it’s only great if they have quality life. I read way too many stories on this message board of women suffering from worsening bone loss because of the AI’s robbing them of precious quality of life

My BS was so condescending to me, saying “ you might have to take a tiny little pill after surgery.” He was talking about the AI, but acted like I was a child and calling it a tiny little pill would make me be fine with it. I think there is a lot to be said for our own gut feeling and knowing what is right for our own body.