THE WELCH COMPANY
440 Davis Court #1602
San Francisco, CA 94111-2496
415 781 5700
rodwelch@pacbell.net
S U M M A R Y
DIARY: August 19, 2005 08:51 AM Friday;
Rod Welch
Request 2nd opinion from UCSF for Millie having surgery.
1...Summary/Objective
..............
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CONTACTS
0204 - University of California San Franci O-00000835 0404
020401 - Ms. Sheridan L. Tinker O-00000835 0404
020402 - New Patient Coordinator
020404 - Admissions O-00000835 0404
SUBJECTS
2nd Opinion UCSF Letter Requests Criteria for Surgery Mastectomy IBC
2nd Opinion #2 UCSF Letter Requests Criteria for Surgery Mastectomy
0904 -
0904 - ..
0905 - Summary/Objective
0906 -
090601 - Follow up ref SDS 15 0000. ref SDS 13 0000.
090602 -
090603 - Submitted request for 2nd opinion to Sheri at UCSF, asking if Doctor
090604 - Benz is available to update his analysis of the case last year on
090605 - whether surgery is a viable option, ref SDS 0 PC5R, and if Doctor Benz
090606 - is not available, whether someone else can comment on Millie's case.
090607 - ref SDS 0 PC8T Included links to key issues, and to the chronology of
090608 - patient history. ref SDS 0 PC4P After submitting the letter, called
090609 - UCSF and left a message for Sheri that Millie is seeking another 2nd
090610 - opinion. ref SDS 0 PPVV
090611 -
090612 - [On 050823 UCSF responded with referral to surgeons in Berkeley.
090613 - ref SDS 19 AI8N
090615 - ..
090616 - [On 050823 scheduled meetings with three (3) surgeons. ref SDS 19
090617 - 0001
090619 - ..
090620 - [On 051108 notified Doctor Benz and UCSF of success following
090621 - advice of referrals, which led to successful surgery and dramatic
090622 - recovery from secondary IBC. ref SDS 20 SJ5H
090623 -
090624 -
090626 - ..
0907 -
0908 -
0909 - Progress
0910 -
091001 - Submitted ref DIT 1 0001 to Sheri at UCSF that implements Millie's
091002 - request yesterday, and follows up the call to Sheri, ref SDS 17 0001,
091003 - with a letter based on planning reported in the record for 050811.
091004 - ref SDS 15 IS6F
091005 -
091006 - [On 050823 UCSF responded with referral to surgeons in Berkeley.
091007 - ref SDS 19 AI8N
091009 - ..
091010 - [On 050823 Millie requests further consideration by UCSF,
091011 - ref SDS 19 QF7N, and asks about a new breast cancer treatment
091012 - trial. ref SDS 19 7I5Y
091014 - ..
091015 - [On 051108 notified Doctor Benz and UCSF of success following
091016 - advice of referrals, which led to successful surgery and dramatic
091017 - recovery from secondary IBC. ref SDS 20 SJ5H
091018 -
091020 - ..
091021 - The letter to UCSF says...
091022 -
091023 - 1. Doctor Benz examined Millie last year on Oct 18, and wrote an
091024 - opinion [received on 041117] to assist the oncologist at Kaiser
091025 - in managing Millie's care. ref SDS 5 ZO6L Kaiser eventually
091026 - implemented recommendations in UCSF's 2nd opinion. After some
091027 - ups and downs, Millie has made a strong recovery, and now needs
091028 - further guidance on whether to have surgery, being discussed by
091029 - Kaiser. ref DIT 1 0001
091031 - ..
091032 - 2. Doctor Benz 2nd opinion indicated that UCSF could provide
091033 - further comment, as needed. ref SDS 5 OV3T Millie wants UCSF's
091034 - comment now, because Doctor Benz stated in his 2nd opinion
091035 - letter that there was "no role for surgery" based on her
091036 - condition at that time. ref SDS 5 OU5P A 2nd opinion from
091037 - Stanford [received on 041209] said there might be a role for
091038 - surgery after regression of inflammation. ref SDS 6 SN97
091039 - Therefore, Millie wants further review of the surgery option
091040 - based "full" regression of inflammation that has now occurred
091041 - at this time, after implementing Doctor Benz's treatment ideas.
091042 - ref DIT 1 QC6L
091043 -
091044 - [On 050823 UCSF makes referral to surgeons, which may
091045 - indicate that there is now a role for surgery in Millie's
091046 - case. ref SDS 19 AI8N
091048 - ..
091049 - [On 051108 notified Doctor Benz and UCSF of success
091050 - following advice of referrals, which led to successful
091051 - surgery and dramatic recovery from secondary IBC.
091052 - ref SDS 20 SJ5H
091054 - ..
091055 - 3. You were very effective last year scheduling support by UCSF
091056 - and in coordinating to transmit the doctor's opinion [on
091057 - 041117], ref SDS 5 LE6M, so I am hopeful you can work your
091058 - magic again and find a doctor with experience treating IBC to
091059 - comment on Millie's case. ref DIT 1 6K7M
091061 - ..
091062 - 4. Schedule - Millie's primary care physician at Kaiser indicated
091063 - in a meeting on July 29 that surgery after mid-September is the
091064 - time frame. ref SDS 13 BZ56 We need input prior to that,
091065 - because Millie will have to make a decision. She wants an
091066 - opinion letter, like Doctor Benz issued last year, to help
091067 - guide her decision, as well as input that might further support
091068 - Kaiser in prescribing treatment, including surgery. ref DIT 1
091069 - 1L8I
091071 - ..
091072 - 5. Millie may not need to come in for a visit, because the record
091073 - is very detailed in this case, shown on 050812. ref SDS 16 6L4M
091074 - She is available for examination, if needed, until August 27,
091075 - when she leaves for Chicago, and returns on Sep 8. ref DIT 1
091076 - FL9H
091078 - ..
091079 - 6. Since this is vacation time, it may be hard to get people
091080 - involved on short notice. Doctor Benz would be perfect, since
091081 - he has already worked on the case, and Kaiser has implemented
091082 - his earlier recommendations. However, if Doctor Benz is not
091083 - available another doctor with experience treating IBC patients
091084 - should be okay. ref DIT 1 ML9N
091086 - ..
091087 - 7. If UCSF needs additional payment for this follow up project,
091088 - please let me know the details. ref DIT 1 PL4L
091090 - ..
091091 - 8. You can forward this letter to your doctor candidates for
091092 - consideration of following issues. ref DIT 1 9M5F
091094 - ..
091095 - 9. Background...
091097 - ..
091098 - 10. A complete chronology of patient history with diagnostic test
091099 - reports is listed in the record on August 12, 2005, ref DIT 1
091100 - VM5J, and with precision links to original sources. ref SDS 16
091101 - 6L4M
091102 -
091103 - [On 050823 UCSF responded with referral to surgeons in
091104 - Berkeley. ref SDS 19 AI8N
091106 - ..
091107 - [On 051108 notified Doctor Benz and UCSF of success
091108 - following advice of referrals, which led to successful
091109 - surgery and dramatic recovery from secondary IBC.
091110 - ref SDS 20 SJ5H
091112 - ..
091113 - 11. Millie is currently being treated at Kaiser, originally
091114 - diagnosed in February, 2002, and treated with surgery
091115 - (lumpectomy), then drugs and radiation during 2002. There was
091116 - no treatment during 2003. ref DIT 1 5P6I On June 14, 2004
091117 - Millie was diagnosed with IBC; symptoms may have appeared as
091118 - early as December 2002. [see chronology, ref SDS 16 XX8G]
091119 - Within the past few weeks, Millie's condition has improved
091120 - markedly following six (6) cycles of Taxotere and capecitiabine
091121 - (Xeloda), as recommended by Doctor Benz. On August 19 (today)
091122 - she will start another cycle, then treatments will be paused
091123 - for surgery, if she decides to proceed. Side effects are
091124 - beginning to impact tolerance for treatment, so a break is
091125 - timely, as discussed with the primary care physician on July
091126 - 29, 2005. ref SDS 13 VP4N
091128 - ..
091129 - 12. On November 4, 2004 Millie was removed from treatment with the
091130 - Avastin trial due to pulmonary emboli. ref DIT 1 R43O On
091131 - January 4, 2005 treatment resumed with AC, implementing
091132 - recommendations in a 2nd opinion by Doctor Guardino at
091133 - Stanford, and as shown in a treatment plan developed on
091134 - December 20, 2004. ref SDS 8 XQ41 On March 29, 2005 after 4
091135 - cycles of AC, Kaiser changed the treatment to Taxotere and
091136 - capecitabine (Xeloda), implementing recommendations in the UCSF
091137 - 2nd opinion. At that time CA 15-3 elevated to 100,
091138 - inflammation had spread toward the neck, and cancer blisters
091139 - had appeared on the left breast. Six (6) cycles of Taxotere
091140 - and capecitabine yielded marked improvement, leading the
091141 - primary care physician to ask the surgeon at Kaiser to schedule
091142 - a mastectomy.
091144 - ..
091145 - 13. The surgeon on two (2) occasions indicated limited experience
091146 - performing mastectomy with IBC, and noted that IBC is a very
091147 - rare disease affecting less than 1% of breast cancer patients.
091148 - ref DIT 1 G55I
091150 - ..
091151 - 14. Criteria for when IBC patient is ready for surgery. ref DIT 1
091152 - G55N
091154 - ..
091155 - 15. On July 27, the surgeon determined Millie is ready for surgery
091156 - based on visual observation that prior severe inflammation has
091157 - fully regressed, where the left breast now looks like the right
091158 - breast. CA 15-3 has dropped from over 100 to below 37, the
091159 - lowest point in 4 years of treatment. On the date of the
091160 - examination, CA 15-3 bounced back to 46. There are two pending
091161 - tests which will be reported today, and another CA 15-3 blood
091162 - test was taken this morning in connection with routine testing
091163 - for Coumadin treatment. These additional "dots" may show a
091164 - positive or negative pattern.
091165 -
091166 - [On 050819 CA 15-3 dropped to 39 after 6th cycle of
091167 - Taxotere and capecitabine (Xeloda), and for blood test
091168 - drawn on 050812, which was reported during chemotherapy
091169 - treatment. ref SDS 18 VK8K
091171 - ..
091172 - 16. Another question is the scope of surgery. Millie has discussed
091173 - having both breasts removed, as much for personal convenience
091174 - to avoid the bother of protheses, but also to provide a source
091175 - of healthy tissue for the left breast. Since inflammation
091176 - extended toward the neck above the breast for a few weeks prior
091177 - to starting treatment with Taxotere and capecitiabine at the
091178 - end of March, the surgeon has indicated there is an issue of
091179 - how much of the breast and surrounding tissue to remove.
091180 - ref DIT 1 T67H
091182 - ..
091183 - 17. Details of this discussion with the surgeon on July 27, 2005,
091184 - ref DIT 1 XL8H, are shown in the record for that date.
091185 - ref SDS 11 OV5H
091187 - ..
091188 - 18. Finally, Millie wants comment on whether surgery will do more
091189 - good than harm, based on excellent analysis by the surgeon on
091190 - July 27. ref SDS 11 VL4O Since at this time there is no
091191 - evidence of distant metastasis, and only regional metastasis
091192 - seems to be involved, would an operation increase the chances
091193 - of longevity and quality of life. ref DIT 1 AM8N
091195 - ..
091196 - 19. Mil is very grateful for Doctor Benz and the work at UCSF that
091197 - assisted her in recovery from a difficult situation this past
091198 - March. If we don't get a chance to work with the doctor and
091199 - your team again, just want to commend the professionalism and
091200 - high standard of care at UCSF. ref DIT 1 JN9N
091202 - ..
091203 - 20. Please call or reply to let me know progress on working this
091204 - project. ref DIT 1 GO4K
091206 - ..
091207 - 21. Post Script
091209 - ..
091210 - Last year Doctor Benz had trouble accessing links, and this
091211 - caused problems developing a case history for his analysis. He
091212 - did an excellent job under the circumstances, but we want to
091213 - facilitate review this time around. Typically, when you click
091214 - a link, if it opens a blank page, it means your browser "timed
091215 - out" going through the UCSF firewall. Click the "Refresh" or
091216 - "Reload" button on the browser, and that should give you access
091217 - to links into patient history. This will save a lot of trees.
091218 - ref DIT 1 00W2
091219 -
091220 -
091222 - ..
0913 -
0914 -
0915 - 1525
0916 -
091601 - Called UCSF to check on progress receiving the letter and scheduling
091602 - someone to provide 2nd opinion.
091604 - ..
091605 - 415 353 7070 #1
091606 -
091607 - 353 7027 #2
091609 - ..
091610 - The receptionist said that Sheri is in a meeting. She will ask Sheri
091611 - to call when the meeting ends.
091612 -
091613 - [On 050823 UCSF responded with referral to surgeons in
091614 - Berkeley. ref SDS 19 AI8N
091615 -
091616 - [On 051108 notified Doctor Benz and UCSF of success
091617 - following advice of referrals, which led to successful
091618 - surgery and dramatic recovery from secondary IBC.
091619 - ref SDS 20 SJ5H
091620 -
091621 -
091622 -
091623 -
091624 -
091625 -
091626 -
0917 -