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 -