HER2 Support Group Forums - View Single Post - Routine marker testing and recurrence... worth it?

hutchibk · 10-16-2007, 09:07 PM

We are learning and proving daily that commonly proposed "guidelines and standards of care" by all kinds of organizations and networks are obsolete and flat out wrong... and we are successfully proving conventionally held wisdom to be wrong, especially here on this site. Our experiences here will prove to be more than "anecdotal." Cancer, the testing of, the treatments of, and results of said treatments, are not one size fits all. IMO, applying that type of "generic" guideline to breast cancer as a whole (when we know there are over 100 types of breast cancers), and to the standard of care post primary disease, is proving to be antiquated thinking. I consider buying into the referenced theory to be like believing statistics about how long I will survive. It should not be taken at face value. Doesn't necessarily apply to the patient in treatment. It is merely theory. Sorry. I do believe in this case (and potentially other cases) the NCCP guidelines should be taken with a grain of salt.

Not to be ugly, but I am reasonably certain that the NCCP does not print the word/sentence "Duh." in their reports and findings. That is based on your own opinion/prejudice about what other people believe to be true, yet butts up against what your research indicates to be true to you.

10-16-2007, 09:07 PM	#26
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	We are learning and proving daily that commonly proposed "guidelines and standards of care" by all kinds of organizations and networks are obsolete and flat out wrong... and we are successfully proving conventionally held wisdom to be wrong, especially here on this site. Our experiences here will prove to be more than "anecdotal." Cancer, the testing of, the treatments of, and results of said treatments, are not one size fits all. IMO, applying that type of "generic" guideline to breast cancer as a whole (when we know there are over 100 types of breast cancers), and to the standard of care post primary disease, is proving to be antiquated thinking. I consider buying into the referenced theory to be like believing statistics about how long I will survive. It should not be taken at face value. Doesn't necessarily apply to the patient in treatment. It is merely theory. Sorry. I do believe in this case (and potentially other cases) the NCCP guidelines should be taken with a grain of salt. Not to be ugly, but I am reasonably certain that the NCCP does not print the word/sentence "Duh." in their reports and findings. That is based on your own opinion/prejudice about what other people believe to be true, yet butts up against what your research indicates to be true to you. __________________ Brenda NOV 2012 - 9 yr anniversary JULY 2012 - 7 yr anniversary stage IV (of 50...) Nov'03~ dX stage 2B Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo. Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin Feb'07~ Genetic testing, BRCA 1&2 neg Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin May'07~ Started Tykerb/Xeloda, no WBR for now June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic! Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2 Oct'07~ PET/CT & MRI show NED Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone) Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors. Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen. Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen. June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen. Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice. Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots. Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011. Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah. "I would rather be anecdotally alive than statistically dead."