When patients don't want standard of care - example

[BobbyHeenan]

This seems to come up more often than I saw in training, but out in practice seems to happen all the time.

How do you all handle this? Do you acquiesce and try to mold rec's based on their preferences (within reason), or is it a my way or the highway approach?

Example:

In brief, just saw a patient that is 10 years out from bilateral mastectomy with ALND for bilateral lobular cancers. She never had XRT but did end up with R arm lymphedema. She now has a 1 cm chest wall recurrence (ER + lobular) in the L CW, far upper outer quadrant (almost like an axilla recurrence in a node, but no nodal tissue at all on specimen...though could be a completely replaced node. Hard to know). She is TERRIFIED of lymphedema (I don't blame her), so she first went to surgery with just a WLE with negative margins - no nodes taken. She's declining chemo (though Calor trial suggests mostly triple neg patients benefit most from chemo in this setting).

The boards answer here is comprehensive XRT (at minimum CW, axilla, and SCLV IMO); but she's "requesting" local site only XRT (basically just treating the operative bed). I actually think this is reasonable, but certainly leaves her at risk.


All kinds of other examples I can think of for these scenarios I seem to see (other example is axumin PET + node s/p prostatectomy and patients wanting only that one node treated).

What kind of approaches do you take here? Unless completely egregious, I have taken the approach of "some is better than nothing" when in these situations and end up treating to what I think is a reasonable plan that the patient agrees with, but I'm not sure if that is the best route to take. Obviously I take the time to explain why I think the "boards answer" is typically best, but sometimes you're stuck.

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[medgator]

I've done it, I just document the heck out of my consult note about it not being SOC etc and counseling on the specific risks of non-standard tx.

I treated axilla without cw before for a physician pt with oncology training. Primary was small and wouldn't have warranted tx on its own

 

[BobbyHeenan]

I've done it, I just document the heck out of my consult note about it not being SOC etc and counseling on the specific risks of non-standard tx.

I treated axilla without cw before for a physician pt with oncology training. Primary was small and wouldn't have warranted tx on its own

Thanks - that's typically been my approach. Just document well and explain thoroughly the reasoning behind doing what I'm doing.

The Simul post about working at an MDA affiliate made me think. It's really not infrequently that I'm having patients decline certain measures, and wonder how that is handled in that setting. I'm glad I have some understanding partners and some flexibility out here.

 

[medgator]

Thanks - that's typically been my approach. Just document well and explain thoroughly the reasoning behind doing what I'm doing.

The Simul post about working at an MDA affiliate made me think. It's really not infrequently that I'm having patients decline certain measures, and wonder how that is handled in that setting. I'm glad I have some understanding partners and some flexibility out here.

Yup. Another example is medically-inoperable T3N0 nsclc.... Nccn talks about "definitive RT and chemo without really mentioning concurrent. I personally do concurrent +/- some mild hypofx thrown in, have a lot better experience with that vs doing SBRT, pretty much the case in any >4cm tumor in my experience

 

[Palex80]

The boards answer here is comprehensive XRT (at minimum CW, axilla, and SCLV IMO); but she's "requesting" local site only XRT (basically just treating the operative bed). I actually think this is reasonable, but certainly leaves her at risk.

That is the "boards answer" but it is based on "bad" data.

Traditionally post mastectomy RT has included lymphatics but you can make the argument against treating lymphatics. There is no data to point out that treating lympatics in this scenario will prolong survival. We have been doing it traditionally, but why have we been doing it?
Would we treat the lymphatics too if this patient did not have had a mastectomy?

Let's simply presume she had breast conserving surgery with ALND, declined postoperative RT and now came back with a recurrence in the breast, which was locally excised again (no mastectomy) without a sentinel procedure. Would you still treat the lymphatics? And if yes, which ones would you treat for a 1cm recurrent tumor? Why should the indication to treat lymphatics depend on surgery of the primary?


For the record:

I'd say that in around 10% of my breast cancer patients the decision on volumes to treat is a joint decision and many of these patients ask me to ommit lymphatics or specifically ask for "more" lymphatics to be treated. There are so many "grey" areas out there: axillary nodes in patients with positive sentinel nodes and no ALND, mammaria interna nodes, the list goes on and on...

 

[evilbooyaa]

In general, I think it's fine to do something that is in-between nothing and "standard of care", as long as you believe that whatever you will be doing will benefit the patient.

For this patient, treating CW only compared to CW + comprehensive nodal is not that different, at worst, and at best, may be equal based on Palex's points above. I would not treat just the local area but the entirety of the chest wall, but even then, if she wanted local RT only (and not CW) that would still be better in terms of recurrence than not treating her at all.

Document extensively that this is not what your primary recommendation is and that patient understands the risks related to this.