Hi,
This is general question that I've been struggling with. I have stage 4 nsclc (adenocarcinoma egfr+ del19) with metastases to the brain, spine, and bones. I'm a 29 yo asian male never-smoker. Ever since my diagnosis, I have been, to paraphrase Dr. West, "Educating myself on my disease like my life depended on it". However, I sense this has lead to strain in my relationship with my oncologists - I fear that my self education is conveying distrust of them, which is not the case.
I'm struggling with how to best approach them with therapies, which I've found through my independent research (much on this site) that are not yet the standard of care, and haven't been discussed as treatment options in our appointments. Obviously, we don't have enough time in our appointment to discuss every single experimental treatment, but I occasionally find some that are worth considering in my specific case. When I've tried to bring up undiscussed treatment options in the past, it was quickly dismissed without reason, leaving me to wonder if my life will be cut short by not receiving the best treatment based on the available evidence.
For example, I find the evidence for adding Avastin to my 1st line Tarceva regiment summarized by Dr. West to be convincing, especially in my case of being an asian with efgr+ exon 19 deletion mutation.
http://cancergrace.org/lung/2014/06/10/kato-erlotinib-with-or-without-b…
This therapy is not the standard at this time, so most oncologists that would not agree with Dr. West. Seeking a second opinion is not expected to help.
As a patient, how can I advocate for "gray area" therapies for myself, given that I've considered the evidence and weighed the risk/reward?
Reply # - May 6, 2015, 02:03 PM
That's such a good question.
That's such a good question. Personally I'm pretty upfront and find it easiest to talk to the person, in your case your oncologist about your feelings about wanting to be a part of the decision making process and that you trust his or her judgement. If you're not able to have that conversation with the onc perhaps asking his or her nurse how the best way to go about it might be.
I'm don't know where you are but it doesn't sound like you're being seen by a lung cancer specialist so perhaps a 2nd opinion at a large research and or teaching hospital will give you the opportunity to speak more openly with a lung cancer specialist. Your onc shouldn't have a problem with that. Most onc welcome a 2nd opinion to a case. Dr. Weiss has written an excellent post about it, http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…
If you've not tried engaging your onc in conversation about your cancer care he or she may not know you've educated yourself on the subject. Often people are fine to let the doctor do all the decision making without trying to find information out themselves. In turn doctors often don't try to explain the very intricate subject of cancer care. If your onc finds you've become quite educated on the subject she may be more likely to talk to you about the reasons behind the decisions being made.
Whatever the reason you should be able to have a conversation with him about your care. It's you're life and your life depends on it.
Janine
Reply # - May 6, 2015, 03:38 PM
I am being treated by
I am being treated by thoracic oncologists at a world class research and teaching hospital in Boston. Although I have been thinking about getting another opinion. Thank you for the link. Would it be useful to get a second opinion within the same institution? Or would traveling for one be preferable?
Maybe the issue is more of a difference in philosophies between myself and my oncs. I am willing to accept therapies deviate from the standard of care when there is some evidence to support it and the risks are relatively low. Whereas most oncs, even (especially?) world class ones tend to support the generally accepted standard of care.
On when to change from standard practice, Dr West talks about this example specifically:
"while I think the fact that docs are happy with the median progression-free survival (PFS) of 10-12 months with various EGFR inhibitors for first line EGFR mutation-positive NSCLC makes it hard for the combination of Avastin (bevacizumab) with Tarceva (erlotinib) to drive change in practice, even with a 6 month improvement in PFS"
http://cancergrace.org/cancer-101/2014/08/10/8-factors-on-evidence-lead…
Maybe a doctor who is more on the "innovator" or "early adopter" side of the spectrum would be a better fit for me. Do anyone know how I could identify such a doctor?
Thanks
Reply # - May 7, 2015, 12:46 PM
I would probably favor going
I would probably favor going to another institution, since your case may already have been discussed among the oncologists at your current facility, and the recommendations you've been given may represent a consensus among them.
One way to try to judge whether a particular doctor favors cutting edge treatments is to search to see if they are actively involved in clinical trials. Most cancer centers have web pages which list their current trials. You can also search PubMed to see if they are actively publishing research results.
JimC
Forum moderator
Reply # - May 7, 2015, 04:32 PM
I agree that going to a
I agree that going to a different institution is likely to be more fruitful. Though it's possible that an oncologist will reverse a decision of a colleague in the same institution, they may follow an institutional policy or have a dominant person's view direct how others think.
To be clear, I conveyed that this approach is not a clear standard of care, even if I think the data are supportive of it. In fact, most oncologists have not adopted this, though I must confess that I think that it's hypocritical for oncologists to have different thresholds of evidence required to change their practices in some realms vs. others. Knowing all of the lung cancer specialists in Boston, I can assure you that all of them do treatment approaches on patients that are far more speculative than adding Avastin to Tarceva.
If you feel strongly enough, you can "doctor shop" to find someone who will support your decision. I don't generally favor patients force an issue, particularly if there isn't compelling evidence to support it, but I do think it's reasonable to seek to work with someone who will be open-minded enough to recognize if a patient/caregiver are making a very informed decision based on a very compelling rationale and some reasonable evidence. In some cases, I think pride of not wanting to have a patient guide a decision can lead to resistance.
Good luck.
-Dr. West
Reply # - May 8, 2015, 07:53 AM
JimC,
JimC,
Good point about the clinical trials. Thanks!
Dr. West,
Thanks for the response. Your article was clear that Avastin+Tarceva is not the standard of care. I appreciate your efforts in advocating in contrary to the established standard, in this particular case and others.