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Old 10-24-2007, 08:33 PM   #68
hutchibk
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I spoke with my doctor today about this debate. He stated that it is hotly discussed and controversial among oncologists as well... it seems to me to be broken down into basically two groups: *those clinicians who prefer to follow generalized guidelines and prefer to align their clinical approaches pretty strictly in adherance with studies, and *those clinicians who prefer to use every tool at their disposal to determine what is the earliest indicator for an individual patient and prefer to tailor their clinical approach to each patient as an individual. I asked him his thoughts and 20 years of experience regarding the following three questions, and (in my words, not verbatim) this is the result of our discussion:
1. Is there a significant value to using TMs as a method of surveillance post initial DX and treatment? He uses TMs on every b/c patient. He uses them as a piece of the big picture, and that much of the time they closely correlate to recurrance. He does not shrug them off, even if they don't seem to apply easily to a certain patient. For very many, TMs are a very significant tool, but on the flip side, they do not always yield trustworthy info for every patient. It is true that TMs can be tricky and misleading some of the time, and the rest of the time they can offer tremendous insight. He believes that in innumerable cases they offer tremendously valuable early indication and can contribute substantially to offering better and longer survival, and valuable info regarding treatment options and treatment response. He increasingly finds that studies which seem to discount the value of TMs are often flawed and/or outdated. He would rather use TMs than not. And he is very adept at applying the TM info correctly to each individual patient.
Follow-up question: Should clinical cases where tumor markers have been found to correlate directly to metastatic disease be considered merely "anecdotal" in comparison to the studies of the last 8-10 years?
If only one life were saved or extended, that is not "anecdotal." The use of the word "anecdotal" to describe a significant success seems to be merely an attempt to diminish the clinician who might not necessarily agree with or has opposite experience of the studies.
2. Is there a survival benefit to monitoring and attempting to diagnose metastatic disease at it's earliest, rather than waiting for clinical symptoms? Unequivocally, YES. In 20 years, he has seen multitudes of lives positively extended due to the earliest possible DX of mets. When they are smaller and more contained, they are easier to treat, easier to combat and eradicate, and come with less collateral damage and less additional medical complications than if found later when more damage has been done. With the earliest possible DX of mets, treatment options can usually be less invasive, less aggressive, and very often yield the best possible outcome. That speaks multitudes about positive QOL as opposed to the difficulty to QOL that can be caused by more aggressive and more invasive treatment options. His example was "why would you NOT monitor (scans, labs, etc) for bone mets and instead wait for symptoms? How would it NOT be better to DX a hip bone tumor met early and eradicate it, than to wait for a broken hip to tell you that you had a tumor that disintegrated the bone and caused it to break? Then you have a tumor that is bigger and might have broken away and continued to spread. Then you have a problematic and expensive hip repair surgery, which may not even be an option. Then you have a patient who is potentially in a wheelchair for the rest of their life. Then you have tremendous pain issues. Then you have a patient who's overall health, well-being, and well-survival potential is tremendously compromised. And on the flip-side, an early DX of the same hip bone met could avoid most, if not all, of those issues. Of course there is a significant survival benefit to finding it sooner rather than later. (And using me as an example... in my case we were able to use a new and less invasive treatment option as opposed to whole brain radiation, because my mets were found extremely early and very small and had not yet produced symptoms. Had we not found them until they were causing symptoms, I would have faced the much more expensive and more physically difficult probability of targeted rads or WBR... Additionally, we have knocked back the same mediastinal nodes twice now due to the assistance of rising markers and earliest possible detection.)
3. What do you think about the QOL distress that some cancer patients claim is caused by close surveillance? Overwhelmingly in his practice, QOL distress is caused when patients worry that they are not being monitored closely enough. If QOL distress is truly caused by close surveillance, then why even do the initial screening exams? Why go for pap smears or mammograms or colonoscopies or to the dermotologist to begin with?

I just thought this might be valuable to the discussion. Maybe everyone should ask their docs about their thoughts and experiences regarding similar questions...

I feel so very lucky to have the doc that I have. He is a true gem. He practices oncology from the standpoint of the individual and not from the starting point of statistical studies. He is part doctor, part psychologist, part priest and he is a brilliant man.
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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."
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