Thinking outside the box

[AlaskaAngel]

I see the posts by people who have been diagnosed with large mass breast cancers that went undetected by mammogram and ultrasound and they end up being diagnosed at advanced stages, and I am puzzled by it.

With these people, or with the people who have not been diagnosed with bc but who have particularly dense breasts, and sometimes their cancers aren't seen with just mammogram and ultrasound, I wonder why it isn't routine for doctors to reach into their bag of tricks and have those patients do simple labs like a CA 15-3, or even just the basis liver tests like ALT, AST and alk-phos, to see if those provide the kind of additional information that might result in a closer look, with better diagnosis?

Comments?

A.A.

[Jackie07]

You would think that they are that 'smart'! :)

Doctors are seeing so many patients, they really don't spend enough time on individual cases.

When my recurrence was finally found, I began to question whether those 'high' protein numbers on the blood test reports could have been indicators of a growing tumor.

It's really hard to swallow the news when I was finally told about the recurrence. I 'should have' insisted on having bilateral mastectomy in 2003. I 'should have' insisted on getting Herceptin. I 'should have' requested for breast MRI...

Well, I'm going to watch Spur's game (against Miami) and forget about all these 'should'ves'... :)

[Hopeful]

AA, funny you should ask: http://www.springerlink.com/content/3m1l87v83w1w6j88/

They describe it as not ready for prime time, but it is the kind of out of the box thinking you encourage.

Hopeful

[ElaineM]

I hear you everyone !!!!!!!
Yes. Jackie. Alot of things are not addressed, because doctors have so many patients and are so busy. We have to be super proactive to get all our needs taken care of.
I think there was a movement to put certain general tumor marker blood tests on the list of things to do during an annual check up for everyone. I often thought that is neccessary before the movement even started.

[AlaskaAngel]

When we are diagnosed with bc, even those with some medical training have a steep learning curve. I like the philosophy expressed in Becky's signature because it is so true, that we usually DO know more than we think we do, and are stronger than we think we are. Sometimes what seem like "odd" insights are simple but more valuable in actual application than the current professional "standard operating procedures". What is the harm of asking individually to have these labs run, if we happen to be people with dense breasts, even if our providers haven't thought about doing it? Doing them might even be just as helpful as doing MRI's as standard operating procedure for dense breasts, but a lot less invasive and less expensive. And if we don't think outside the box, some of these less expensive possibilities are less likely to become available to those who don't have the access to MRI's that some of us might have.

This also brought back a memory for me about something I had specifically asked my onc about in writing prior to receiving his recomendations about chemotherapy. He is a hematologist. At the time he totally ignored what I asked him, but it is possible that I was right on target, even more so than I knew at the time. (I am not a hematologist.) I had written him to tell him that a few years before being diagnosed with bc, I'd done an autologous blood donation for another surgery I'd had, and the ELISA testing of that blood had shown a reaction similar to HTLV but "indefinite". I wanted to know whether that reaction was related to my breast cancer, and whether having that reaction was any kind of indicator of greater hazard in regard to such future possibilities as leukemia if I were to have Adriamycin, Cytoxan, and 5-FU. At the time he ignored the question entirely, but for all we know, the reaction I had may have been the mysterious, still unknown, protein specifically indicating some part of my particular breast cancer. I received those ELISA test results 3 years prior to my diagnosis.

Was he the fool for not pursuing my question more thoroughly? I don't know. But I do think it was an intelligent question worth asking, and worth more respectful consideration from a hematologist, as an oncologist treating a patient for breast cancer with chemotherapy that affects the immune system.

AlaskaAngel

[bejuce]

Hi AlaskaAngel,

I've wondered the same thing about those tests - the CA 15-3 is just a blood draw but every time I'd ask an oncologist about it, they'd shrug it off, saying the test is not reliable, blah blah blah. I don't know why it's not - haven't done much research on it yet - and I don't know why it'd hurt the patient to offer it. Maybe it's an insurance issue?

I never got one myself, until yesterday that is - I asked the oncologist who's running the vaccine trial I'm on for a test, and he immediately said sure. Mine came back normal at 12.7 (yay!) but I have no idea what this means since I never did a baseline when I was diagnosed.

In any case, my experience in trying to get this test done just proved again how much we need to be our own advocates and talk to multiple doctors until we get what we want.

[Laurel]

A.A.,

I wonder why in the case of dense breasts they do not automatically do magnified views with our mammos? In my case I had a labyrinth of DCIS that after magnified views had been taken could be easily seen, however on the standard views it did not show up at all. My onc. said it had to have been growing for years to be that extensive. I began my annual mammos at age 40. On my eighth mammo they saw a change in some calcs they had been watching for a few years (unknown to moi). This lead to a bx. After a positive bx I went to Hershey Med. where they ordered the magnified views. They showed me just how extensive the DCIS was which prompted them to urge me to have a mastectomy. Fortunately for me my invasive component was small, but had a magnified view been ordered anytime in the 8 years I was having mammos, the DCIS would probably been noted. My surgeon felt it had been growing over 10 years, which corresponds with my history. With my 3rd child I noted that my left breast was performing poorly where with the other 2 children it had been my better side. I remember thinking that it just seemed "clogged" somehow. No mastitis, so I just worked the right side more and it responded to the call. My son was 13 when I was dx'd with left sided breast cancer. I am guessing that cancer had begun sometime between my 2nd and 3rd child, more than 13 years until dx'd.

Moral of the story: tell your friends to ask if they have dense breasts. If so, insist on magnified views at least every other mammo!

[KDR]

Hi, All
My BC Antigen 15-3 was always in the normal range--even when dx'd Stage IV. However, my CEA was 599.1 at dx and we use that a baseline. My facility uses these tests as guides only, and their scans trump all other tests.
One wish of mine? Docs would religiously do Vitamin D test.
Karen

[AlaskaAngel]

Magnified views as a standard for dense breasts is another very interesting bit of "thinking outside the box", and hopefully will be read and given serious consideration by those here who are part of the process of evaluating proposals for further study of breast cancer.

Markers are not reliable for everyone. They measure the level of disturbance in the body processes, but the measurement can be the result of other disturbances than the particular focus of interest, such as breast cancer. For example, if one has a different disease that triggers some of the same body responses as breast cancer does, the marker would show a change even though it might have nothing to do with breast cancer. It is possible that markers may even change in response to diet.

In addition, for some patients the ups and downs of the marker readings create a lot of anxiety. Doctors respond to this by either doing the markers but just being aware of them as one more possible indicator and not making the patient aware of the results for anxious patients, or else they may decide not to have the test run for the more anxious patient.

I wanted a baseline. I get the one used for ovarian cancer because of family history for that, as well as one of the markers used for breast cancer. At the end of chemo mine were at the top end of normal and within a year they dropped down to staying in the low to midrange of normal. Some get the CA 27.29, some get the CA 15-3, (which are considered more applicable to breast cancer) and some in addition get the CA-125 (which is for ovarian cancer), and some get the CEA, which is for general cancer and other cancers. The CEA can turn out to be helpful for some with breast cancer.

I tend to think mine have not bounced around because I have no other chronic diseases of any kind. I also try to eat a low-inflammatory diet, and get moderate exercise.