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 11, 2005 07:25 AM Thursday; Rod Welch

Planning 2nd opinion on surgery for mastectomy IBC patient.

1...Summary/Objective
2...Referral Letter for Millie to Send to UCSF, Stanford, Kaiser


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SUBJECTS
2nd Opinion #2 Planning Surgery Mastectomy IBC Relapse Recovery Taxo

0703 -
0703 -    ..
0704 - Summary/Objective
0705 -
070501 - Follow up ref SDS 13 0000, ref SDS 11 0000.
070502 -
070503 - Develop request for input on surgery for mastectomy on patient with
070504 - IBC.  Assist surgeon prepare written analysis by gathering other
070505 - opinions from UCSF, Stanford, and from another doctor who has written
070506 - on surgery for IBC patients.
070507 -
070508 -     [On 050812 case study on chronology patient history prepared to
070509 -     support 2nd opinion. ref SDS 15 0001
070511 -      ..
070512 -     [On 050819 letter to UCSF requesting 2nd opinion to backup
070513 -     Kaiser's analysis. ref SDS 16 0001
070515 -      ..
070516 -     [On 050823 UCSF responded with referral to surgeons in Berkeley.
070517 -     ref SDS 17 AI8N
070519 -      ..
070520 -     [On 050823 scheduled meetings with three (3) surgeons. ref SDS 17
070521 -     0001
070523 -      ..
070524 -     [On 050907 problems with Business Office getting medical records
070525 -     again. ref SDS 18 11D8
070527 -      ..
070528 -     [On 060712 inquiry on process and worry about bureaucracy
070529 -     requiring complex steps for obtaining 2nd opinions, and working
070530 -     with Kaiser. ref SDS 19 VQ6N
070531 -
070532 -
070533 -
070534 -
070536 -  ..
0706 -
0707 -
0708 - Background
0709 -
070901 - Case study on considerations for performing surgery in this case is
070902 - listed in the record on 041210. ref SDS 7 657F
070904 -  ..
070905 - On 050727 the surgeon offered to support due diligence. ref SDS 11 O85O
070907 -  ..
070908 - On 050729 another surgeon within Kaiser at Oakland called Millie and
070909 - offered to consult on the surgery issue. ref SDS 12 V15F  On 050805
070910 - meeting scheduled for 050826 for Millie to meet and consult with
070911 - Kaiser's surgeon in Oakland. ref SDS 14 V15F
070913 -  ..
070914 - Objective is to prepare a letter for Kaiser to request follow up
070915 - opinions, similar to the letter on 041002. ref SDS 3 K138
070917 -  ..
070918 - Referral opportunitues are listed in the record meeting with the
070919 - surgeon on 050727. ref SDS 11 LA3I
070921 -  ..
070922 - Millie's entitlement to a 2nd opinion is also listed on 041002,
070923 - ref SDS 3 FA8O, and Kaiser reported on 050727 that IBC is a rare
070924 - disease; most practitioners have limited experience. ref SDS 11 QJ3Q
070925 - This current project need not address issues of payment at this time,
070926 - since UCSF and Stanford have both offered follow up consultation.....
070927 -
070928 -             UCSF........................... 041117, ref SDS 5 OV3T
070929 -             Stanford....................... 041209, ref SDS 6 HS6L
070931 -  ..
070932 - Another source for 2nd opinion is listed in research from the meeting
070933 - with the surgeon on 050324. ref SDS 9 F36O
070935 -  ..
070936 - On 050729 meeting with primary care physician discussed due diligence
070937 - on performing surgery to treat IBC, ref SDS 13 U24K, and cited
070938 - planning with the surgeon on 050727 to submit written analysis,
070939 - ref SDS 11 PF7O, based on two (2) criteria...
070940 -
070941 -    1.  Surgeon determines patient ready for surgery...
070942 -
070943 -        a.  Recovering sufficiently from IBC for surgery to be
070944 -            performed, closing the wound with healthy tissue, discussed
070945 -            on 050727. ref SDS 11 OV5H
070947 -             ..
070948 -        b.  Scope of surgery, both breasts. ref SDS 11 NT9G
070950 -             ..
070951 -        c.  Experience performing masectomy on IBC patient. ref SDS 11
070952 -            QJ3Q
070954 -         ..
070955 -    2.  Patient determins benefits from surgery for longevity and
070956 -        quality of life exceed risks....
070957 -
070958 -        a.  Surgeon's analysis on 050727. ref SDS 11 VL4O
070960 -             ..
070961 -        b.  Criteria for decision on 050724. ref SDS 9 VL4O
070962 -
070963 -
070965 -  ..
0710 -
0711 -
0712 - Planning
0713 -
071301 - There are several options for notifing folks to get expert opinion on
071302 - pending issues....
071303 -
071304 -    1.  Kaiser could submit referrals which might get better interest
071305 -        and feedback because of official standing...
071306 -
071307 -        a.  Primary care physician is on vacation, and so not available
071308 -            to perform due diligence, reported on 050729. ref SDS 13
071309 -            IY7G  Previously, on 040909 primary care physician was not
071310 -            familiar with requirements for Kaiser to support due
071311 -            diligence, and so urged this be performed by the patient.
071312 -            ref SDS 2 X836  Therefore, even if available, it seems most
071313 -            likely PCP is not an effective path for getting this work
071314 -            done, even though diminimus following up prior work product
071315 -            received by Kaiser, and which has been implemented fully by
071316 -            Kaiser.
071318 -             ..
071319 -        b.  Backup for primary care physician could submit referrals,
071320 -            however, the record consulting backups indicates this would
071321 -            likely fail....
071323 -             ..
071324 -            A backup for primary care physician began an examination of
071325 -            on 040517, and then called the primary care physician to
071326 -            take over after seeing issues involved in the case.
071327 -            ref SDS 1 SM6M
071329 -             ..
071330 -            A backup for primary care physician conducted a meeting on
071331 -            041104, but reserved decisions on treatment for primary
071332 -            care physician to make after returning from vacation.
071333 -            ref SDS 4 Q54O
071335 -             ..
071336 -        c.  Surgeon has offered on two (2) occassions to submit written
071337 -            analysis in the case.  On 053247 the surgeon planned a
071338 -            report to the Oncology Department, which was not evidently
071339 -            submitted. ref SDS 9 ER7F  On 050727 the surgeon again
071340 -            planned to submit a written report on pending issues.
071341 -            ref SDS 11 PF7O
071343 -         ..
071344 -    2.  We could submit the record to the surgeon along with a draft
071345 -        referral letter to pending sources listed on 050727.
071346 -        ref SDS 11 LA3I  This would take up a lot of the surgeon's time
071347 -        for review and editing to construct a letter that fits personal
071348 -        preference and style.  There would likely be anxiety about
071349 -        Kaiser policies along the lines discussed with primary care
071350 -        physician on 040909. ref SDS 2 X836
071352 -         ..
071353 -    3.  We could make a referral to other sources, and notify the
071354 -        surgeon so there is an opportunity for the surgeon to clarify
071355 -        scope of referral, as needed, and to use the referral letter to
071356 -        collaborate with colleagues at Kaiser, for example, Doctor
071357 -        Shim, who contacted Millie on 050729. ref SDS 12 V15F
071358 -
071359 -            [On 050819 letter to UCSF requesting 2nd opinion to backup
071360 -            Kaiser's analysis. ref SDS 16 0001
071362 -             ..
071363 -            [On 050823 UCSF responded with referral to surgeons in
071364 -            Berkeley. ref SDS 17 AI8N
071366 -             ..
071367 -            [On 050823 scheduled meetings with three (3) surgeons.
071368 -            ref SDS 17 0001
071369 -
071370 -
071372 -  ..
0714 -
0715 -
0716 - Implementation
0717 -
071701 - Referral Letter for Millie to Send to UCSF, Stanford, Kaiser
071702 -
071703 - Based on the foregoing options, ref SDS 0 6C4S, will prepare a draft
071704 - for Millie to make the referral, as was done on 041002. ref SDS 3 K138
071705 -
071706 -            [On 050812 case study on chronology patient history
071707 -            prepared to support 2nd opinion. ref SDS 15 0001
071709 -  ..
071710 - Millie can consider sending the following with cover letters tailored
071711 - to UCSF, and to Stanford, with copy to Doctor Riley-Paull for
071712 - reference and submission to Victoria Shim to prepare for the meeting
071713 - on 050826....
071714 -
071715 -            [On 050819 letter to UCSF requesting 2nd opinion to backup
071716 -            Kaiser's analysis. ref SDS 16 0001
071717 -
071718 -    1.  I need a 2nd opinion on my condition and treatment options for
071719 -        performing masectomy on the left breast infected with IBC, and
071720 -        now showing significant regression of disease.
071722 -         ..
071723 -    2.  I am currently being treated at Kaiser for breast cancer,
071724 -        originally diagnosed in February, 2002, and treated with
071725 -        surgery (lumpectomy), then drugs and radiation during 2002.
071726 -        There was no treatment during 2003.  On June 14, 2004 I was
071727 -        diagnosed with IBC.  Within the past few weeks, after many ups
071728 -        and downs, my condition has improved markedly following six (6)
071729 -        cycles of Taxotere and capecitiabine (Xeloda).  On August 18 I
071730 -        will get another treatment, then treatments will be paused for
071731 -        surgery.  Side effects are beginning to impact tolerance for
071732 -        treatment, so a break is timely, as discussed with the primary
071733 -        care physician on July 29, 2005. ref SDS 13 VP4N
071735 -         ..
071736 -    3.  The primary care physician wants to schedule surgery for a
071737 -        mastectomy next month, after I return from a vacation, and as
071738 -        reported in case history on July 29, 2005. ref SDS 13 BZ56  In
071739 -        a meeting on July 27, the surgeon indicated that regression of
071740 -        inflammation, together with other factors, means that a
071741 -        masectomy can now be performed, ref SDS 11 YY7F; there are
071742 -        questions about criteria and scope, as shown in case history on
071743 -        July 27, 2005. ref SDS 11 OV5H  The surgeon has further
071744 -        indicated the decision to have surgery rests with the patient,
071745 -        and presented criteria on this issue. ref SDS 11 VL4O
071747 -         ..
071748 -    4.  I need professional support to assess criteria on this
071749 -        decision.
071751 -         ..
071752 -    5.  Background.
071754 -         ..
071755 -    6.  A complete case history with diagnostic test reports is listed
071756 -        in the record on August 12, 2005. ref SDS 15 0001
071758 -         ..
071759 -    7.  Briefly, with respect to treating IBC...
071761 -         ..
071762 -    8.  I received 6 cycles of Taxol and Avastin.  The last treatment
071763 -        was on October 21, 2004.
071765 -         ..
071766 -    9.  On October 18, 2004 I was examined by Doctor Benz at UCSF.  He
071767 -        submitted an opinion letter to Kaiser received on November 17,
071768 -        2004. ref SDS 5 OU5P  I was also examined on October 19 at
071769 -        Stanford by Doctor Guardino; results of her examination were
071770 -        reported in a letter to Kaiser received on December 9.
071771 -        ref SDS 6 SN97  Both reports were thorough reviewing patient
071772 -        history, and offered suggestions, which were implemented by
071773 -        Kaiser.
071775 -         ..
071776 -   10.  On November 4, 2004 I was diagnosed with pulmonary emboli, and
071777 -        so was removed from the Avastin trial. ref SDS 4 0001
071779 -         ..
071780 -   11.  On January 4, 2005 Kaiser resumed treatment with AC,
071781 -        implementing recommendations by Doctor Guardino at Stanford, as
071782 -        shown in the treatment plan developed on December 30, 2004.
071783 -        ref SDS 8 7W4K
071785 -         ..
071786 -   12.  On March 29, 2005 after 4 treatments with AC, a change was made
071787 -        to Taxotere and capecitabine (Xeloda), implementing
071788 -        recommendations by Doctor Benz at UCSF. ref SDS 10 T58M  At
071789 -        this time, CA 15-3 was 100, inflammation had spread toward the
071790 -        neck, and cancer sores/blisters had appeared on the breast.
071792 -         ..
071793 -   13.  Five (5) cycles of Taxotere and capecitabine (Xeloda), yielded
071794 -        marked improvement; I had a sixth (6th) cycle on July 29, 2005,
071795 -        and a seventh cycle of treatment begins on Friday August 19.
071797 -         ..
071798 -   14.  Image testing throughout four (4) years of treatment shows
071799 -        regional, but not distant metastatic disease (see case history
071800 -        showing report for the most recent CT test on 050530, reviewed
071801 -        with the doctor on 050610. ref SDS 15 M85O)
071803 -         ..
071804 -   15.  Questions...
071806 -         ..
071807 -   16.  On July 27, 2005 the surgeon determined I am ready for an
071808 -        operation.  CA 15-3 dropped to 37, but subsequently bounced
071809 -        back to 46. ref SDS 11 YK6K  There are two (2) pending tests,
071810 -        which hopefully will show a decline or stable condition.
071811 -        Except for a scar from the original surgery in 2002, the left
071812 -        breast now appears normal in all respects, and compared to the
071813 -        right breast. ref SDS 11 YY7F  Is this sufficient criteria for
071814 -        an IBC patient to be ready for surgery, as discussed in the
071815 -        record on July 27? ref SDS 11 OV5H
071817 -         ..
071818 -   17.  Both breasts removed?  How should this be decided, as related
071819 -        on July 27? ref SDS 11 NT9G
071821 -         ..
071822 -   18.  Does experience operating on patients with IBC present a
071823 -        factor, as discussed with the surgeon on July 27? ref SDS 11
071824 -        QJ3Q
071826 -         ..
071827 -   19.  Will breast surgery do more good than harm, based on excellent
071828 -        analysis presented by the surgeon at Kaiser on July 27?
071829 -        ref SDS 11 VL4O  Specifically, Doctor Benz indicated in a letter
071830 -        received on November 17, 2004 that there is no role for surgery
071831 -        in this case.  Doctor Guardino at Stanford indicated in a
071832 -        letter received on December 9, 2004 that surgery might be
071833 -        helpful after regression of inflammation, which has now
071834 -        seemingly occurred.
071835 -
071836 -
071837 -
071838 -
071839 -
071840 -
071841 -
071842 -
071843 -
071844 -
071845 -
071846 -
071847 -
071848 -
071849 -
071850 -
0719 -