Breast Cancer Index

windingshores

I was shocked to discover, yesterday, that my MD at a major cancer center in a major city had never heard of the Breast Cancer Index. Do other people's oncologists order this test? Mine just gives me a non-specific risk rate for years 5-10 on hormonal therapy, based on stats not my own particular cancer.

A side question: how the heck do we ever know if our cancer has begun to spread, if our MD's fine circulating tumor cell labs unreliable. Particularly in the light of osteoporosis, osteoarthritis and spinal stenosis, I don't see how I could ever identify pain related to cancer, at least not until it was well-advanced. Do any of you have docs who do CTC tests, or scans, at certain points along the way in treatment?

SpecialK

Mine brought the BCI up before I had learned about it and I had the test done two years ago. I was concerned with insurance coverage at that time since it was not a widely used test, and my insurance did deny it. The lab that does the test, Biotheranostics, will handle insurance appeals until they have exhausted this process, and if you are an insured patient whose insurance denies, they do not charge you for the test. My personal opinion is that they need to broaden their data base so they are willing to absorb the cost of the test for those insured patients whose insurance refuses to cover the test. If you are uninsured they have a patient assistance process. My oncologist does do tumor markers at each appointment, and has throughout the time I have been treated by him - 7 years - I always have a CBC, CMP, Vit D, CEA and CA-27/29 prior to each appointment with him. I have been scanned for time and for cause - either a PET or MRI depending on whether it is passage of time or for a symptom, and where and what type of pain it has been. I also believe, that at least in a number of cases I have personally seen, that finding mets earlier has afforded more longevity. I like that my oncologist shares that philosophy.

windingshores

The oncologist does not any blood work at all, but expects the PCP to do liver enzymes and lipids, but the PCP wants the oncologist to do them. I am thinking of changing oncologist and I am certainly changing my PCP (for many reasons).

It has been my experience that online forums provide so much information that my docs, of my kids' docs, or my mother's docs, don't have or act on.  Our docs are great in so many ways, and some will do things we request, but sometimes we do have to bring information to them.

My pathology was grade 3, 1.4cm, with LVI,  ki67% 20, and my HER 2 was positive at first, then equivocal then negative. Mixed ductal and lobular. Not a good picture but then Oncotype was only 8!

I found a second opinion who was not so chirpy cheery about my chances and took my concerns about discordance seriously. She retested HER2 with a higher cell count and redid the Onctotype too, advocating for coverage.  She also did a CTC test, maybe more, and an echo to see how chemo might go for my heart. So I have a good option I think.

The decision about stopping Femara at 5 years is a serious one and I was grateful for the info on this forum.

farmerlucy

Here's a funny for you. My onc moved practices and I thought I'd give the new onc a try. I called and asked for a consult re: BCI test. Nurse called me back four days later and said “Since you aren't BRCA pos the doctor would not order the test, so NO." Huh? Wow. Mass confusion there for sure.

I hung up and called my old onc's office and said I'd changed my mind and I was moving with her.

Folks, repeat after me “You must be your own best advocate."

windingshores

And keep going until you are satisfied

bc101

My MO did the BCI but only after I asked and insisted on having it done. The result showed me as low risk so I'll not be continuing past 5 years. My MO said if I wanted to, I could stay on AIs a few more years, which I'll probably do. But I am high risk for bone loss and fractures, they say. That's another thing to worry about...

My team will not test for anything unless I have symptoms. Last year I had an MRI and PET due to widespread pain throughout my body. I believe it was most likely from the AI, but I have arthritis and was taking statins. I quit the statins and that seemed to help. My joint pain seems to come and go so it keeps me guessing. I also never get blood work at my cancer clinic. Recently I had an ultrasound due to a lump in my armpit- they say it's scar tissue. Ugh. I'm terrified that if I don't die of a recurrence, my implants will kill me - either that or the DHEA I'm taking to relieve the vaginal dryness. <sigh> I honestly believe I'm getting top notch care and the good news is that both my BCI and Oncotype put me as very low risk, but still, I sometimes drive myself crazy with worry. Hugs to all of you!

Meow13

Mine never mentioned the test either and he is the best breast cancer mo in Seattle.

voraciousreader

a few years ago I asked my MO about Dr. Dennis Sgroi research regarding the BCI score. he told me it wasn’t yet in clinical use so he would not recommend it until it was further studied. So, I forgot about it....and then, last year, my MO finally recommended it and Ihad it done. What I found interesting was that the percentage risk of recurrence was no different than the cancermath.net score that I calculated when I was first diagnosed almost 8 years ago...

windingshores

One thing that bothers me about Onctotype is that LVI is not taken into account. That is no doubt true of BCI as well. If my cancer has a low recurrence score, it is hard to figure out why the cells of my cancer had the capacity to break through into vessels. Anyway.....

Thanks all. I have decided to see my second opinion oncologist, who does do blood tests, and was willing really to do anything that clarified things and that reassured me. I am only three years in so that will probably be next year.

In the meantime, my current cancer doc thinks this deep local pain in my buttock is sciatica and did not order an x-ray, but I am not so sure, having had sciatica before. I have lots of pains but this one is very local and sometimes intense so I will see PCP and get it x-rayed regardless. Sciatica needs treatment too!

My oncologist did say that it is common to start worrying after 2-3 years, that some people feel there is a grace period of sorts. Others are nervous at first and get less anxious as time goes on. I'm in the first group!! I find that in some ways I live with the assumption that cancer will show up again somewhere. Not necessarily in a bad way. It's back burner. But for the first few years it wasn't on the stove at all

windingshores

I just had a long conversation with a rep at Biotheranostics, the company that does the Breast Cancer Index. I finally got someone who can explain the test. They have a new report format that does not assign risk category, only risk %, and simply a yes or no to whether there is benefit to continued endocrine therapy.

My risk of 5.7% is up to me to classify The old cut off was 5.1% for "low risk" so the old report has me as "high risk." My Oncotype had me at a 6% risk with a score of 8.

The results of the testing for hormonal treatment effectiveness IS binary, just a yes or no, no score or spectrum Fully 95% of women do not benefit, and only 3-5% DO benefit. The numbers at the bottom of the page with the graph (In my case 13%without therapy and 9% with) do not actually pertain to any particular client and have been removed from the new report because that part of the report is so confusing. High risk people who DO benefit have a risk reduction of 65%.

The first test, for risk of recurrence, includes cell proliferation, like the Oncotype (though some different markers). PLUS H/I (ratio of two genes) which interprets the estrogen signaling pathway. Think of this as how fast or slow the cars go, not how many cars. Estrogen scores from pathology (I was 95%) measure how many cars, not the speed.

The second test is H/I only without proliferation. As I wrote above, it is binary, just yes or no. The "no" people sit very close to the line where therapy actually could do harm. So this is like the chemo decision where chemo actually harms when it doesn't benefit.

It is possible that those of us with "no benefit" have not been benefiting in the first 5 years either, but BCI is only validated for years 5-10 for those who have already done 5 years of therapy and have no recurrence of disease.

So "Low benefit" really means "No benefit." "High benefit" people benefit substantially from continued meds so I guess that would help with motivation.

Some women opt to continue meds regardless for security even though it may not actually be helping. For people with high risk I think the low benefit score would be especially hard to accept.

There is a company rep in many areas that will talk to doctors.

The woman I spoke with is sending me a copy of the new revised report, patient and doctor pamphlets and also directed me to their revised website with more patient information. They will be doing more direct to comsumer marketing with a campaign entitled "Not Another Minute."

Their patient services rep, who answers phone and emails, is mainly about billing. I had to be a little assertive to get info on the test as a consumer. I ended up with a marketing person who was excellent and is also an 11 year breast cancer survivor.

lala1

windingshores-- I am one of those unfortunate ones who got a "high risk of recurrence/low likelihood of benefit" and yes, it was very hard to accept. I am very interested in these changing guidelines. All of my doctors were surprised by my results. They had all predicted a low risk/no benefit based on my numbers. My Oncotype was 15 which is a 9% risk for recurrence so no chemo. My staging was hotly debated as being Stage 1B or 2A bases on my tumor being 2cm in one length but 1.7cm on another (basically it was oblong) but I was also Grade 3. Anyway, I had a UMX and 2 years later a total hysterectomy. I did my 5 years on Tamoxifen. My doctors were all against me continuing saying the low benefit really did mean low benefit and that I could reduce my risk much more by regular exercise and a good diet than I could by continuing Tamoxifen. So I stopped. It was hard for eventually got easier and now I (mostly) don't think about it....until I read something like your post. My BCI test came back at a 6.5 which gave me a 7.6% risk for recurrence in years 5-10. I'm currently in year 7 and doing well. I'd be very interested in seeing if they would "reclassify" my results or if they would still stand. So from what I understand, they now don't assign a number just your risk percentage? And would my percentage be the same under the new format as the old? I guess I'm just trying to decide if I should ask my MO to call them for further info or if I should do it myself. Hmmm..... all this is incredibly interesting to me. I love doing research on this kind of stuff!!

windingshores

I hope I didn't retrigger anxiety for you!

The old cut off for "low risk" was 5.1% on the BCI. Mine was 5.7% so like you I was surprised by the "high risk" score, especially since it matched my Oncotype risk of 6% (score 8) which was considered low. I think your 7.6% BCI matches your Oncotype of 17 as well. Biotheranostics is not changing the test, just the way it is reported, since evaluation of risk is individual. In other words, some people are very happy to get a 5.7% (me) but others are only happy with 2%. Also, they really made the point that the low benefit folks approach doing harm if they continue. For me that may be true, because I have had osteoporosis for a long time, and some heart stuff popped up on the meds, but for someone else, they might want to take the risk of harm and keep the medications as a security blanket.

One of my oncologists said I could take two years off and decide then. Right now I am so used to taking my little golden pill (I take brand name). This month I started taking it every other day, which is supposed to be safe, but I also figured I would try to taper. I have never heard of anyone doing that but I don't want a flood of estrogen. I am going to ask if that happens. Oddly, with the every other day regimen, I am having very frequent and intense hot flashes, which I wasn't having while taking it every day. Hmmm.

So lala1 no changes at all in your results but they are making interpretation up to you. If I were you I would think you would be low intermediate. Your BCI and Oncotype are so consistent and you have done well so far so no new worries!

I"m trying to get the Prosigna Assay and wrote about it in another thread.

lala1

windingshores---When my MO and I decided to stop the Tamoxifen, I was pretty anxious. He suggested that I treat it like AA and go one day at a time. He actually sent in a RX refill for one month and had me fill it and take it home. He asked that I not take it and just see how worried I was each day of not taking it. If I found that I was really panicked, then I could pop a pill and if the next day, I wasn't, then no pill. I never did take one. It just helped to have them there. Of course over time I just forgot about it. His way of stopping worked perfectly for me. So much of this stuff is psychological.....

As to harm from continuing, I have found that some of my SEs seem to linger even 2 years after quitting. I developed muscle pain which flares up off and on still. My hair thinned then and still is. I developed a slightly runny nose (no allergies or anything) which still slightly runs. And Tamoxifen started making me burp a lot....not all the time but frequently when I would lie down to sleep. It's better but still an issue sometimes. My dad is a doctor and told me recently that he feels that any medicine you take for 5 years which then gives you another however many years of benefit must stay in your system...maybe not forever but at least for many years to come. He thinks it permanently changes your body. Have to say he may be right!

windingshores

Funny, I just got a new script so I could keep some Femara even if I am not taking it MY 5 years is up in April.

Lots of hot flashes today! Doesn't make sense. It almost seems as if the pill is working better every other day.

Good luck with health and with worries!