by Gina Maisano and Constantine Kaniklidis
When is it too late for early detection? All experts agree that finding a primary tumor at its earliest stage offers the most benefit to the patient because it may not have had a chance to spread. Surgery and chemotherapy can be started to stop its growth. The patient has the best chance of survival if her cancer is found early.
There has always been a controversy about whether there is a good time to find metastatic disease. The defeatist answer has always been, “Well, the overall metastatic outcome is not improved if found early.” After 13 years of being among women who are in all stages of cancer, from Stage 0 to Stage 4, I can categorically report that yes, indeed, if you find your metastatic tumor early, it helps. Does that mean the cancer can be cured? Cure is certainly extremely rare. Although certain types of oligometastatic disease, with single or only a few detectable metastatic lesions, can be effectively “cured.” There are some other special cases where metastatic patients can sometimes achieve durable long-term remissions. However, without question, metastatic disease remains the greatest treatment challenge facing oncology. It is also the one part of oncology that receives the least amount research.
Consider the woman who goes for regular oncology visits after her treatment has ended. She is followed every 4 months. At each visit the doctor draws a Complete Blood Count and a Tumor Marker level. Tumor Markers measure the level of cancer antigens in the body. If all are normal, then the woman breathes a tremendous sigh of relief and begins praying that all will be well at the next visit. Sometimes tumor markers are elevated. They are notoriously hyper sensitive and don’t always indicate the presence of disease. However, if they consistently rise at each visit, it could mean that something is amiss and the patient is then sent for a scan. A scan could show nothing or it could show a small mass somewhere that needs to be immediately treated. Many women who have had breast conserving surgery often find regional or local recurrence in the same or contralateral breast this way.
The Complete Blood Count seems innocuous enough. But for a woman with breast cancer, an elevated calcium level combined with an elevated alkaline phosphatase level can mean the presence of metastasis to the bone. Found early, bone metastasis can be treated quite successfully with drugs and radiation. The woman is considered Stage 4, but there are still years of living ahead of her. Why? Because she found her disease early.
If a woman is going to develop metastasis, the ability to knock down the disease while it is still small, treatable and has not spread anywhere else yet, means more birthdays, graduations, weddings, Christmases, family vacations and memories. It extends her life - a life which is not a statistic.
At the 2013 American Society of Clinical Oncology meeting it was determined that regular blood tests are no longer needed. That goes for scans, too. The patient just needs a once-over by her oncologist every six months. And unless he has X-ray vision, what good will that do? Why even bother with visiting your doctor if they are no longer monitoring you? Some of the finest oncologists in the nation are following these guidelines. There is a window open right now where the patient can insist on blood work and when that window closes and patient insistence fails in the future, what some would call “subterfuge” will have to begin. In order to have a screening appointment, we will have to complain of some terrible pain that needs looking into. And, you can be sure, there will be a fight about that.
It should not be the case that the standard of care post treatment should also have to include a few sessions at the Actor’s Studio so patients can be more convincing when they pretend there is something wrong with them just so they can get a test to make sure there is nothing wrong with them.
There have been a lot of changes in medical care lately. This is one of the worst. It is as if our oncologists have given up. They are not fighting for us anymore. They are not our hero generals on the battlefield. Instead, they are waving the white flag of surrender to not be proactive, to not look forward, and to not protect us.
We don’t believe in surrendering. We believe in being your own advocate and refuse to let our oncologists toss us into the “Well, let’s see what happens” pile. Fight back. To that end, Constantine Kaniklidis, Director of Medical Research at the No Surrender Breast Cancer Foundation and Founder of Breast Cancer Watch has compiled a Patient Guide to arm yourself with when you next visit your oncologist.
Questions and Answers
Q: Some doctors seem to no longer be doing follow-up complete blood counts and chemistry panels, or CT, PET and MRI scans, or tumor marker testing. Why?
A: ASCO - the American society of Clinical Oncology - has recently (2013) issued a guideline update on "Breast Cancer Follow-Up and Management After Primary Treatment" that states that these tests are " . . . not recommended for routine follow-up in an otherwise asymptomatic patient with no specific findings on clinical examination". Oncologists often cite these ASCO Guidelines of 2013 as the reason for no longer offering these follow-up tests.
Q: But are these guidelines binding on oncologists?
A: No. ASCO in fact has explicitly disclaimed any mandatory force of these guidelines in clinical practice. Here's their disclaimer:
Disclaimer: “This information does not mandate any particular course of medical care. Further, the information is not intended to substitute for the independent professional judgment of the treating physician, as the information does not account for individual variation among patients” . . . “there is latitude for the treating physician to select other courses of action in individual cases”.
These guidelines are therefore explicitly discretionary, and they in fact instruct physicians to determine for themselves what if any of the suggestions to implement, counseling that the decision of testing and which tests should always defer to the “independent professional judgment of the treating physician”. So ASCO recognizes that "the information does not account for individual variation among patients" and that "the selected course of action should be considered by the treating physician in the context of treating the individual patient".
Q: Are there certain cases that motivate the type of periodic follow-up testing that's been customary until now?
A: There are no formal guidelines here, but certainly a strong reasonable case can be made in advanced/metastatic disease, and in challenging higher-risk scenarios such as triple negative breast cancer (TNBC) and HER2-positive disease, which plausibly require close follow-up to monitor both disease progress as well as response to treatment, but any individual breast cancer case, even outside these, can still be a reasonable candidate for continued follow-up testing. Every case is unique and patients should candidly expressed their views in an honest discussion with their oncologists.
Q: Is there evidence that these follow-up tests don't provide benefit?
A: In fact, there is only the absence of robust evidence decisively showing improvement to overall survival outcome, but this absence is not the same as having decisive evidence that the follow-up testing provides no benefit to the patient or her/his management. Every case is different, every patient is unique, and at least one authority (the National Comprehensive Cancer Network/NCCN) has expressed their view that although we have no decisive high-level evidence of benefit, we do have some evidence from several studies to suggest plausible benefit.
Q: What say, or role, does the patient have in what follow-up testing should be done?
A: Quite a significant one. So with regard to tumor markers, NCCN (National Comprehensive Cancer Network), whose guidance on testing and treatment is authoritative for both oncologists and insurers, states that" "The ultimate decision about whether or not to use CA 15-3 (BR 27.29) in this situation must be taken by the doctor in consultation with the patient" and they conclude that "In combination with radiology and clinical examination, CA 15-3 or BR 27.29 may be used to monitor chemotherapy in patients with advanced breast cancer", which is their stand on all follow-up testing. Therefore, you have a voice in any decision about these tests and should speak to your oncologist candidly concerning your own perspective on continuing periodic monitoring.
|Team No Surrender, Constantine Kaniklidis and Gina Maisano|