Surgeon
Department of Surgery
Kaiser Permanente
Permanente Medical Group, Inc.
1425 South Main Street
Walnut Creek, CA 94596
..
Subject:
Time Out Mastectomy Surgery Due Diligence
Dear Doctor:
I was notified today of favorable results from biopsies you took on October 12.
Very good news! Inflammatory breast cancer (IBC) was diagnosed from a biopsy
you took on April 19, 2004; now 18 months later, your follow up biopsies show
no evidence of cancer. Favorable mammogram results, and the PET scan test on
October 5th showing no evidence of distant, nor locoregional metastatic disease
presents a "clean bill of health" that relieves a big weight off my mind.
Right now, thanks to Doctor Johnson and the Kaiser team, I feel so healthy and
grateful I could cry!
..
At this time the Surgery Department has scheduled mastectomy to remove my left
breast on Friday, October 21. Thanks very much for expediting Doctor Johnson's
request, which he asked me to file with the Surgery Department after I met with
him on October 7th.
..
During our meeting on September 23rd, you seemed to indicate plans for ordering
a retest of the biopsy on April 19, 2004, which, as noted above, diagnosed
inflammatory breast cancer. Retesting was recommended by Doctor Shim, in
Kaiser's Oakland office, for the purpose of status change that might increase
treatment options in the event of relapse. Second opinions by Doctor's Grissom
and Bailey concurred. The report I received on your notes of our meeting makes
no mention of this retest having been ordered. Similarly, status change
retesting was discussed with Doctor Johnson on October 7th; however, the
doctor's notes, also, do not mention this issue. Please investigate, and let
me know when retesting the biopsy was ordered for status change.
..
I deeply appreciate the time you have given my case. Doctor Smith and Doctor
Johnson cite your strong commitment to patient care. I have a few questions
about the purpose, risks and benefits of mastectomy surgery, which can be
addressed with Kaiser's team care practice for a
Time Out
to implement treatment guidelines followed by Kaiser and presented
in the Healthwise Handbook listed on your website.
.. I am informed by you, and others, that my case is unusual and high risk.
Therefore, workup for this surgery requires special attention.
Before signing a consent for surgery, I want to
know what is being done and how this will benefit in relation to
risks for complications, which you and Doctor Smith mention in your notes.
Please coordinate with Doctor Johnson and submit written
explanation of the proposed surgery following Kaiser's outline in the
Healthwise Handbook,
that says in part...
.. Shared Decisions About Surgery
Every surgery has risks. Only you can decide if the benefits
are worth the risks.
.. Learn the facts:
What is the name of the surgery? Get a description of the
surgery. ..
Doctor Johnson called for a "standard mastectomy," and this
was submitted in a written request to the Surgery Department on October
7th.
..
Will surgery include axillary node dissection proposed by Doctor Shim
in her 2nd opinion consultation on September 8, 2005? Why or why not?
..
On October 12th four (4) biopsies were taken on the left breast for the
purpose of assessing recovery from IBC by complementing clinical
examination, and PET scan testing. These biopsies were proposed by
Doctor Grissom in a 2nd opinion letter on September 20, 2005 to, also,
help layout the boundaries for a very wide mastectomy that removes
previously infected skin, and for the purpose of reducing the risk of
IBC relapsing. Positioning of the biopsies was based on memory of the
examination on March 24th, when you observed IBC inflammation had
spread toward the neck. At that time, on March 24, 2005, you advised
that a mastectomy could not be performed, because there was not enough
healthy skin to close the surgical wound. This record indicates that
not removing breast skin previously diagnosed with IBC presents
post-operative risks cited by Doctor Smith and by Doctor Johnson
explaining the problem of microscopic disease causing relapse.
..
On September 28th, Doctor Smith showed photographs which she described
as a "standard mastectomy." There was a single line of incision,
slightly angled, approximately 2" - 3" long, and .5" to 1.5" above the
nipple. The nipple was removed and the skin was flat against the chest
signifying loss of underlying breast mass. The impression was that
minimal breast skin was removed in the photograph presented as a
"standard mastectomy."
..
This scope therefore does not seem to contemplate using the four (4)
biopsies taken on October 12th to guide a very wide mastectomy for
removal of previously infected skin, and in fact most of the original
skin, where microscopic cancer cells may remain, will remain in place
under a "standard mastectomy" scheme?
..
Please provide any additional explanation to clarify the planned
procedure for a "standard mastectomy" to treat a patient profile of
secondary IBC, multiple relapse, and pulmonary emboli.
Why does your physician think you need the surgery?
On October 7th, Doctor Johnson recommended a "standard mastectomy" for
the purpose of a "palliation strategy" needed for future relapse, which
may be caused by microscopic remnants of IBC disease not currently
detected by tests. In previous meetings the purpose of mastectomy was
presented to maintain "local control," which seems closely related to
reducing the risk of relapse in the left breast.
..
Is "palliation" the same as "local control" or, if local control
succeeds in avoiding relapse, and distant metastatic disease continues
to test negative, does this scenario avoid the time and expense of
palliation measures?
..
How will a "standard mastectomy" that leaves most of the previously
infected left breast skin in place, and which may contain microscopic
remnants of disease, support "palliation" to maintain "local control,"
when removing the breast mass also removes blood vessels that bring
treatment and nutrients to the breast skin?
..
If all of the skin with remnants of disease is not removed by a
"standard mastectomy," does this risk another surgical wound that fails
to heal for a year, as occurred with the punch biopsy? What strategy
is planned to meet this contingency? Patient history in this case
shows that chemotherapy treatment with Taxotere and capecitabine
(Xeloda) provided palliation that healed the punch biopsy wound. Is
this the plan for healing the mastectomy surgical wound? What other
measures are planned for this contingency.
..
On May 17, 2004, I received from the primary care physician the report
on the biopsy you took that discovered IBC. At that time, research was
performed and cites published guidance for primary IBC that says in
part...
If the inflammatory cancer has not spread beyond the breast,
a mastectomy (removal of the entire breast) may be performed to
remove the tumor. However, because inflammatory breast cancer
involves lymphatic vessels of the skin, mastectomy can increase the
chances for the cancer to recur (since the skin is stitched together
after mastectomy). ..
As you know, I have secondary IBC, discovered two (2) years after you
performed surgery to remove the tumor in the breast. PET tests show
there is no tumor in the breast to remove. On March 24, 2005 you found
IBC had spread above the breast line toward the neck. Does Kaiser have
published guidance that supports standard mastectomy treatment in my
case? If there is no tumor to remove in the breast, and if previously
infected breast skin is not removed to reduce chance of relapse, what
is the purpose of mastectomy, given the prior spread of IBC disease
above the breast line?
..
How will the proposed surgery accomplish palliation and/or local
control better than chemotherapy, and sufficient to justify risks of
surgery complications cited by Doctor Smith on September 28?
..
Previous relapse in December 2004 spread inflammation from IBC disease,
and cancer blisters began popping out on the skin of the left breast.
How will mastectomy surgery of the left breast prevent or otherwise
palliate this problem, when skin with microscopic cancer cells are left
in place? Will this be treated with chemotherapy for palliation?
..
On September 28th, Doctor Smith proposed a step-by-step strategy to
begin with a "standard mastectomy," and after clear margins are
achieved, then review options for removing previously infected skin and
reconstruction with non-infected skin to reduce the risk of relapse
from remnants of microscopic cancer cells cited by Doctor Johnson. How
does this step-by-step strategy align with palliation objectives for
handling relapse?
..
Is standard mastectomy surgery in a case of secondary IBC expected to
prolong disease-free survival, such that chemotherapy can be paused.
If so, how long might this pause last, before chemotherapy must be
restarted? Are we talking weeks, months, hopefully a year or so? Or,
is it expected that chemotherapy will be required immediately following
surgery, as in the case of primary IBC?
..
What criteria will be used to determine the scope and degree of tissue
removal? If more tissue is removed will this increase palliative
benefits?
Is this surgery the most common one for this problem? Are
there other types of surgery?
What assessment has been made of performing a "very wide mastectomy"
discussed with the surgeon on September 23 for the purpose of reducing
the risk of relapse?
How many similar surgeries has the surgeon performed
where the patient is extremely high risk for surgical, postoperative
and anesthetic complications, while recovering from secondary IBC, and
diagnosed with pulmonary emboli, noted by Doctor Smith?
..
How many surgeries like this are done at this hospital on patients
with secondary IBC and diagnosed with pulmonary emboli?
What complications of mastectomy surgery are increased for a patient
with secondary IBC, noted in Doctor Smith's report? What solutions
are proposed to avoid these complications?
..
If previously IBC infected skin is not removed, and if there is no
tumor within the breast to remove, shown by PET tests, then what will
prevent IBC from relapsing in previously infected skin left in tact by
standard mastectomy?
..
If the left breast mass is removed through a standard mastectomy how
will loss of blood vessels that normally service the skin limit ability
of the patient to recover in the event of relapse? Does loss of blood
vessels to the remaining breast skin from mastectomy surgery risk
losing local control for a patient with secondary IBC, in the same way
Doctor Smith explained that prior surgery in the lower stomach area
during the late 1960s prevents harvesting this tissue for
reconstruction due to loss of blood vessels?
..
On November 4, 2004 I was notified by Doctor Kaufman, substituting for
Doctor Johnson, that I was diagnosed with
pulmonary emboli
based on a
CT scan test performed the day before on November 3, 2004, and that I
would therefore require treatments with anticoagulants (Coumadin) for
the rest of my life. Subsequent discussion over ensuing months with
Doctor Johnson confirmed this prescription. A few weeks ago, on
September 28, 2005, Doctor Smith cited pulmonary emboli requiring
Coumadin treatment as one of the factors in my patient profile
that makes me very high risk for
complications from undergoing mastectomy surgery. Last week,
on October 7th
Doctor Johnson related that Kaiser's standard practice for pulmonary
emboli is treatment for one (1) year, and that chemotherapy patients
are treated for life, as related previously by Doctor Kaufman. Also,
on the 7th Doctor Johnson ended my treatment for pulmonary emboli,
perhaps reflecting successful treatment with chemotherapy, as shown by
the PET scan test performed last week on October 5th, and presented
by the doctor on the 7th. Does this patient history eliminate
pulmonary emboli as a high risk for complications in mastectomy
surgery? If not, what are Kaiser's plans for addressing this risk
during and after surgery?
How long will it be before you're fully recovered?
How many days in the hospital for close observation of complications
cited by Doctor Smith?
..
On October 12th, you mentioned, while performing minor biopsy surgery,
that Kaiser plans a one (1) day hospital stay for my patient profile.
How does this address Doctor Smith's report of high risk post-operative
complications? Does Kaiser have experience showing that one (1) is
sufficient for evaluation of mastectomy post-op complications on a
patient with secondary IBC and pulmonary emboli? Would this be the
same if Kaiser performed a very wide mastectomy to remove previously
infected breast skin? What signals will the medical team be checking
to establish that one (1) day is sufficient evaluation for releasing
the patient to go home?
..
How can you best prepare for the surgery and the recovery
period?
What should I expect for recovery complications as a secondary IBC
patient, that are different from other patients who have mastectomy
surgery? How will Kaiser handle these uncommon risks?
.. What is the treatment plan going forward after surgery, and how
will this plan be different if surgery is not performed? Is there a
workup showing alternate strategies?
..
I would like to get a draft of your report on the above issues
by Thursday, so there
is time for review and finalization. You can submit draft language via email
to expedite the process
After we agree on the
language, I will then attach your signed
report to the consent form I sign for the mastectomy operation
on Friday, October 21. A copy of this letter to Doctor Johnson facilitates
collaboration on Time Out review.
.. Thanks again for your excellent work in my case, and please extend to
Doctor Smith my deep appreciation for her clear and informative presentation on
September 28th.