Oncotype Dx for microinvasion (especially at Kaiser SF area)?

percy4 · March 2014

I've just finished radiation after a lumpectomy for low-grade DCIS with microinvasion. My next step is deciding about hormonal therpy. I can't use Tamoxifen because of uterine issues. I'm a bad candidate for Arimidex or any AI as I've had life-altering hot flashes for 12 years, and already have joint pain (my work requires the use of my body) and serious sleep problems. Would not like a dug that worsens these SEs, and then also have to take bone-builders (with their own set of problems), anti-depressants, etc., to combat them. Years of which would cost more than the darn test. My MO does not disagree that this all would probably be a problem for me taking them. The Ondotype Dx would give me my PERSONAL chance of recurrence. She will not order it, and said her colleagues all agree. Yes, it it "standardly" (a word I've come to hate) done on 5mm> tumors to decide about chemo, but in my case I need it to decide about Arimidex. If, as we suspect, but are guessing, my recurrence chance is very low, I can pass it by without being worried all the time. If, as does happen with some low-grade tumors thought to have a low recurrence chance, we are surprised by a higher-than-expected score, I will have to bite the bullet and take the AI, or at least try it (something I barely could do, as I can't be limited in my movement at work even for a trial period) knowing what chances I'm taking if I, as expected, can't take the SEs and stop it. She simply won't hear me, just keeps refering to what the test is standard for, though, of course, she has the authority to order it if she chooses. She used Adjucant Online, she emailed me, and said my recurrence chance is low, 14%, so no need to check further, she says. Take it or don't, she says, it's not vital. 14% is NOT low. Looking at Adjuvant Online, I see that a 1mm tumor is lumped in with a 1 cm tumor in their gauging recurrence, and that besides about three other questions of grade, type and HER2 status, that's it. VERY general, as is Cancer Math. My pathology included many more factors that point to me very probably having a much lower chance than 14%, but, as there can be and are surprises with the genetic Oncotype test, I just can't know. Adjuvant Online also states clearly that they got their info from women who've died, and are therefore much better at predicting mortality than recurrence. Let me remind you that I was led away from a node biopsy by my former MO and BS, something I've never been confortable with, so feel even more deserving of this test to know my own chances. So I can make a wise decision. NONE of this moves her; she sounds like a robot, and concluded the email back-and-forth by saying she'd be happy to refer me to another oncologist for another opinion. This after telling me twice (for back-up) that she consulted with ALL her colleagues at my facility and they all agreed, so what's the point of speaking with one of them? My case and reasons may not be the usual, but each case has to be taken individually, and I have seen people here with micros who have had the test ordered for them. What do you all think, what would you do, any cases or studies I can refer to? Go to Patient Relations (don't think it will help, they'll probably just say it isn't standard). Has anyone in the SF area had an oncologist with Kaiser order an Oncotype for you with a micro? If you have, please PM me the doc's name and facility. Diet and exercise , the docs tell me, can reduce recurrence by 30%, but I'm not sure that's as dependable, especially if I start it months after diagnosis. She pointed out that if it comes back, it's very unlikely to kill me. As if a possibly higher-stage recurrence, losing my breast, chemo, reconstruction (IF that can be done after rads), and months of lost work, which will bankrupt me, wouldn't be bad enough). It goes without saying that I can't afford the test on my own (how much is it, again?) Beesie; I think you do agree there is a different recurrence chance for a micro than there is for a 1 cm tumor. Am I right? Any ideas/info appreciated - Percy xx

percy4 · March 2014

I do know I can't expect to have test after test for total comfort, but this is one test, my final decision in my treatment, and I have good reasons.

Beesie · March 2014

Percy, the way I see it, I don't think the Oncotype test for invasive cancer will provide you with any meaningful or actionable information or reliable information.

The Oncotype for invasive cancer is used to determine the need for chemo, based on the risk that someone might develop a distant recurrence (as determined by an analysis of the genetic make-up of the invasive cancer). The assumption of the test is that the patient will be taking Tamoxifen and the risk reduction benefits from Tamoxifen are already built into the numbers.

In your case, with only a microinvasion, it is already known that your risk of distant recurrence is extremely low - probably only about 1%. An Oncotype result would assume a larger tumor (since the test is not meant to be used on tumors less than 5mm in size), and would almost certainly present you with a higher risk. It won't be accurate.

I'm guessing that the recurrence risk that you are likely thinking about as you make the Arimidex decision is your local recurrence risk. And I'm thinking that it most likely is the size and grade of your DCIS that will be much more a factor in your local recurrence risk than the genetic make-up of your microinvasion.

Perhaps what would be more appropriate would be the Oncotype test for DCIS, which is used to determine whether or not rads might be beneficial. You've already had rads, but if the analysis of your DCIS suggest the possibility of a high risk of recurrence, that might lead you to take Arimidex. On the other hand, if your score is low or intermediate, given that you've already had rads you might feel more comfortable skipping hormone therapy.

I don't know whether that approach makes sense or not, or whether your doctor would agree to sending your DCIS sample in for the DCIS Oncotype test, but it seems to me that those results would be more meaningful than anything you'd find out by putting the tiny microinvasion through the invasive cancer Oncotype test.

percy4 · March 2014

Thank you so much, Dear. I needed to hear either validation about my predicament as I perceived it, or something else. I am glad the test would not be valuable for my micro. I am pretty sure that, given her attitude, my MO will not order it for DCIS. This info is a great relief to me, because, as you know, I am very careful about my treatment. Could you please address my other question, if you have the info? Is a 1 mm, low-grade tumor less likely to have local recurrence than a 1 cm tumor? Thanks. Again, you've relieved me greatly from feeling like I have to fight for this. That's what is so great about this board (and you!).

percy4 · March 2014

Also, from what you just said, I'm feeling pretty OK without the Arimidex, given that my DCIS was low-grade and non-necrotic. Know it isn't a promise, but...Yay!

Beesie · March 2014

"Is a 1 mm, low-grade tumor less likely to have local recurrence than a 1 cm tumor?"

In most cases, I think the answer is "yes" but I don't think the answer is always yes. A lot more goes into the determination of local recurrence risk than just the size of the tumor.

If someone with a 1mm tumor has only 0.1mm surgical margins and someone else with a 1cm tumor has 10mm surgical margins, the local recurrence risk might be higher for the person with the 1mm tumor. Or if someone has a couple of 1mm tumors that are spaced apart and someone else has a single 1cm mass with well circumscribed borders, even with similar surgical margins, it's quite possible that the local recurrence risk could be higher for the person with the small tumor.

But I don't see how the question relates to your situation. Your local recurrence risk isn't determined by the fact that you had a 1mm invasive tumor. Your local recurrence risk is based on a assessment of your total tumor, invasive and DCIS, and the size, focality, margins, etc.. If the microinvasion was right at the margin of your tumor, it likely would factor into the risk calculation, but if the microinvasion was in the middle of
the tumor, it might not factor in much at all. That was the case for me. My local recurrence risk would have been very high if I had not had a MX. This didn't have anything to do with the fact that I had a microinvasion. My microinvasion was in the middle of my tumor and probably wouldn't have affected my recurrence risk at all, if I'd had a lumpectomy. The bigger issue for me was that I had over 7cm of multi-centric high grade DCIS with comedonecrosis. If only the microinvasion had been considered, I could easily have had a lumpectomy; with reasonable margins, I would have had a low recurrence risk. I faced a much higher risk, and needed to have the MX to reduce this risk, because of the DCIS not because of the microinvasion.

So in your case, when assessing your local recurrence risk, you would need to consider not just the 1mm microinvasion, but the entire area of cancer, including the DCIS, the size of the area of DCIS, the grade of the DCIS, the focality of the DCIS, the margins around the DCIS, etc.. And isn't that what Dr. Lagios did for you in his assessment, in which he concluded that you should have rads, but didn't think that hormone therapy was required? What did he assess your local recurrence risk to be?

percy4 · March 2014

Well. It's all hard to say. He was guessing, but based on all factors, he put my recurrence chance at about 5%. I'm presuming he meant local recurrence, because he had said that with a treated microinvasion, I basically didn't have a chance of distant recurrence, so we weren't discussing that. He thought my Oncotype score for the micro, based on everything, would have been about a 7 if done. It had near tubular morphology, luminal A type, and was a VERY low grade 1, with wide margins all around. Did not discuss probable Oncotype score for the DCIS. The DCIS had one wide and three narrow margins, not narrow enough for him to think re-excision was needed at all, but narrow enough for him to recommend rads for that reason, and because of the micro, and boosts to the tumor bed because of the micro. The DCIS was estimated by the HMO to be 4 mm, by Dr. Lagios to be 30 mm in full extent in a scattered fashion. However, he felt the DCIS was not a "bad" type, as he considers grade 1 and 11 without necrosis to be low-grade. This was a lengthy telephone discussion; I was writing as fast as I could, but I do remember these high points. My distinct impression about his 5% recurrence chance is that he was taking the pathology as a whole, both DCIS and micro together considered. As to the Arimidex, he pretty much doesn't think anyone with a situation in our catagory would benefit that much, so I don't think that was entirely specific to me, but it was a big "No". He did say my lifelong chance of a BC in the other breast could be as high as 20% now, so I guess the 5% was referring to the treated breast; to a recurrence, and not a new primary. His conclusion was that I had a very good prognosis, I should do the rads, and go on with my life. Which is good. Still; between the differences about size and recurrence chances I've been given, I don't really know WHAT to think my local recurrence chance is. Is the 30% lowering of recurrence with diet and exercise (if done seriously) accurate? That's what the RO told me. Even if you start 3-4 mo. after diagnosis?

percy4 · March 2014

You know, it's very frustrating, all of this. This is my second MO, and she' not turning out to be helpful. You, Beesie, were able to explain very concisely why the Oncotype Dx wouldn't be helpful to me about my micro. Through many emails, this MO only continued to tell me it was not standard, and that her colleagues agreed. If she had simply explained as you did, I could have understood. And, then, telling me she uses Adjuvant Online to predict recurrence, rather than her own brain, my own pathology, and maybe specific tests or not. I looked at Adjuvant, and, as I said, it is very general, doesn't even ask about margin width. And they state clearly in their disclaimer that they are not as accurate about predicting recurrence as mortality, and should not be used in place of a doc's judgement for deciding treatment. And THIS is what she uses to tell me what I can expect? It can't be accurate enough to make decisions based on it; must be several percents off either way it could go with more specific pathology looked at and thought about. She's been useless. Sounds harsh, but it's true. And I do know she can't know exactly, but she's not even trying to figure it out closely. Just says I'm low-risk, probably won't die if I have a recurrence, and basically "Go away" (with a smile). As if the difference between 14% (in in 7) and 5% (1 in 20) isn't a determining factor in my decision-making. At least Dr. Lagios is basing his thoughts on me, specifically, with what pathology they sent him from the HMO, which he re-examined. So, what SHOULD I think my recurrence chance is? I really can't decide how to proceed if I don't know it. I'm sitting here right now in the middle of a hot-flash which has basically lasted the last 12 years (all through peri and now worse in menopause) so it's no small thing for me to know whether I'm low low-risk or high low-risk for local recurrence before I consider going through the hell (for me, flashing day and night already and working on my feet, needing limber joints) of even a trial period of an AI. Oh, Dear...

lisagwa · March 2014

Percy, Glad to hear that you are striving to find answers. I can not help or add anything to the first part of your post. However, I did want to mention that certain anti depressants help with hot flashes. When my hot flashes became worse, I went to an endocrinologist and found out I had hypothyroidism. The medication for this has helped too. Best wishes to you.

Rubiayat · March 2014

Hi Percy, I wanted to reiterate what Beesie said about the usefulness of the Oncotype test. My IDC was 2.3 mm and I had the Oncotype test done. It gave me a distant recurrence rate of 19% with Tamoxifen, but as Beesie said, that is based on studies from patients with tumors >5 mm. Dr. Lagios didn't think the Oncotype was useful for me and that given how small my IDC was that my distant recurrence rate was more 1-2%. As for taking Al, are the side effects worth reducing your risk from 5% to 2.5%? My oncologist is recommending I take Tamoxifen and I think I am going to decline because I am concerned about the side effects and the absolute reduction in my risk is not enough for me to take a chance. One thing I do plan on doing is taking indole-3-carbinol (I3C) to reduce my risk. Below is a link to an article that discusses hormone therapies and natural treatments and below that is a summary of some research on I3C and cancer.

http://www.lef.org/protocols/cancer/breast_cancer_13.htm#treatment

A summary of studies shows that indole-3-carbinol (I3C) can:

Increase the conversion of estradiol to the safer estriol by 50% in healthy people in just 1 week (Michnovicz et al. 1991)
Prevent the formation of the estrogen metabolite,
16,alpha-hydroxyestrone, that prompts breast cancer cells to grow (Chen
et al. 1996), in both men and women in 2 months (Michnovicz et al. 1997)
Stop human cancer cells from growing (54-61%) and provoke the cells to self-destruct (apoptosis) (Telang et al. 1997)
Inhibit human breast cancer cells (MCF7) from growing by as much as 90% in vitro (Ricci et al. 1999)
Inhibit the growth of estrogen-receptor-positive breast cancer cells
by 90%, compared to tamoxifen's 60%, by stopping the cell cycle (Cover
et al. 1999)
Prevent chemically induced breast cancer in rodents by 70-96%.
Prevent other types of cancer, including aflatoxin-induced liver cancer,
leukemia, and colon cancer (Grubbs et al. 1995)
Inhibit free radicals, particularly those that cause the oxidation of fat (Shertzer et al. 1988)
Stop the synthesis of DNA by about 50% in estrogen-receptor-negative
cells, whereas tamoxifen had no significant effect (Cover et al. 1998)
Restore p21 and other proteins that act as checkpoints during the
synthesis of a new cancer cell. Tamoxifen has no effect on p21 (Cover et
al. 1998)
Virtually eliminate DNA damage and cancer prior to exposure to
cancer-causing chemicals (in animals fed I3C) (Grubbs et al. 1995)
Reduce DNA damage in breast cells by 91% (Devanaboyina et al. 1997)
Reduce levels of a major nitrosamine carcinogen in female smokers (Taioli et al. 1997)

percy4 · March 2014

Thanks for all that info. So frustrating. If only my MO had taken 5 minutes to tell me the Oncotype Dx is BASED on a >5mm tumor and presumes the use of Tamoxifen, we would never have gone back and forth about it. I'm not just a pushy idiot, as by now I'm sure she (and all the other MOs at my facility) think I am. I presume she either didn't care to explain herself, or she presumed I wouldn't be able to understand it. Each decision is important, and it's clear that she was so worried about holding her ground (God-complex and $$$) and telling me all her friends agreed that she never even thought of giving me the reasoning beyond "It's not standard". Sometimes, though my RO, for example, has been amazing, with all the wrong pathology and pissing contests and lack of explanation so I can decide things and all, I think I'll be just fine unless they kill me. Seriously, the woman is a robot, and the last one had never even heard of Black Cohosh (which MAY work as an estrogen in the breast), which I'd been using successfully for my flashes, when I didn't, at that point, know what to continue and what to stop. Thank goodness for this place, so I can at least ask the right questions, and thank goodness for Beesie, who was able to explain in 2 minutes what my MO should have told me to begin with.

mema4 · June 2014

Good heavens, all this is crazy. I did have the Oncotype test and it came back at a 5% risk recurrence after 5 yrs on Tamoxifen. I don't take the T because I'm on Cymbalta and it interacts, so I have just recently started on Arimidex. I'm still not sure if it's a help or not. My MO said to take it, but if the SE are bad too, he said just stop taking it; we can either find another AI or not take one. Now, that's crazy to me! Either I need it or not! I don't want to be looking at mets a year or two out when I could have done something now.

Oncotype Dx for microinvasion (especially at Kaiser SF area)?

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