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 -