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Debbie L. · 09-09-2011, 07:41 PM

Just to clarify (AA), I was stage 3a, definitely not early stage (I'll leave my signature below).

The way I saw it, the visits to my onc didn't offer protection, and they didn't offer solace. I liked to visit with him -- as we enjoyed somewhat-eclectic conversations about things like the benefits of exercise, and weight control, and looking our mortality in the face -- but he had no protection to offer me at those arbitrarily-timed visits. Indeed, "early" detection of mets offered little protection to me (brain mets excepted, and since I didn't get Herceptin, those were unlikely to be my first site of recurrence).

I knew what symptoms were concerning, and I did make special visits for a few of them. Later on, my PCP responded to a few concerns with appropriate f/u (an MRI for persistent migraines, and a BRCA referral for a new discovery of pancreatic cancer in a maternal cousin and 2 previously-hidden breast cancer diagnoses in maternal aunts). All those concerns proved to be groundless (negative MRI of brain, and no BRCA mutations found).

I am not saying that this (avoidance of medical encounters) is the right style for everyone. But I do think that it's a fine style for some of us. Vigilance and frequent testing may reassure some -- not a bad thing. But it probably will not affect the ultimate outcome, should we have a recurrence. If any one of us feels more protected by frequent onc visits and testing, then I am fine with that person pursuing those options. But it is also true that there is no evidence to support that style of care, and so for those of us who are more comfortable with fewer medical interactions, it is perfectly reasonable that we follow our gut, or instincts -- and inform ourselves of what symptoms are concerning and should be reported, while eschewing those arbitrary onc visits.

I'm curious if there are other on this forum who share my approach. My perception of the culture here is that "more is always better" is the majority-opinion. Which is fine. We are each the best person to make that call, for ourselves. I only post this evening to be sure that if there are others who might feel differently, they feel okay to express their opinion.

Debbie Laxague

09-09-2011, 07:41 PM	#6
Debbie L. Senior Member Join Date: Jul 2006 Posts: 463	Re: Scheduled Onc visits at 2nd Year of NED Just to clarify (AA), I was stage 3a, definitely not early stage (I'll leave my signature below). The way I saw it, the visits to my onc didn't offer protection, and they didn't offer solace. I liked to visit with him -- as we enjoyed somewhat-eclectic conversations about things like the benefits of exercise, and weight control, and looking our mortality in the face -- but he had no protection to offer me at those arbitrarily-timed visits. Indeed, "early" detection of mets offered little protection to me (brain mets excepted, and since I didn't get Herceptin, those were unlikely to be my first site of recurrence). I knew what symptoms were concerning, and I did make special visits for a few of them. Later on, my PCP responded to a few concerns with appropriate f/u (an MRI for persistent migraines, and a BRCA referral for a new discovery of pancreatic cancer in a maternal cousin and 2 previously-hidden breast cancer diagnoses in maternal aunts). All those concerns proved to be groundless (negative MRI of brain, and no BRCA mutations found). I am not saying that this (avoidance of medical encounters) is the right style for everyone. But I do think that it's a fine style for some of us. Vigilance and frequent testing may reassure some -- not a bad thing. But it probably will not affect the ultimate outcome, should we have a recurrence. If any one of us feels more protected by frequent onc visits and testing, then I am fine with that person pursuing those options. But it is also true that there is no evidence to support that style of care, and so for those of us who are more comfortable with fewer medical interactions, it is perfectly reasonable that we follow our gut, or instincts -- and inform ourselves of what symptoms are concerning and should be reported, while eschewing those arbitrary onc visits. I'm curious if there are other on this forum who share my approach. My perception of the culture here is that "more is always better" is the majority-opinion. Which is fine. We are each the best person to make that call, for ourselves. I only post this evening to be sure that if there are others who might feel differently, they feel okay to express their opinion. Debbie Laxague __________________ 3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband. 4/01 ~ Bilateral mastectomies (LMRM, R elective simple) - 1.2cm IDC was found at pathology. 5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA ERPR 5%/1% (re-done later at Baylor, both negative at zero). HER2neu positive by IHC and FISH (8.89). Lymphovascular invasion, grade 3, 8/9 modified SBR. TX: Control of arm of NSABP's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion. 2017: Mild and manageable lymphedema and some cognitive issues.