Red letter day today.
I have a surgeon appointment at 8 a.m. with the breast center that
diagnosed my cancer, and a surgeon appointment at 1 p.m. with my choice for a
second opinion. And the race is on . . .
who will win the insurance dollars for breast cancer treatment?
At 8 a.m., I present myself at the local breast center,
complete with my list of questions for the surgeon. As usual I am triaged by a
nurse who surprisingly asks me “Why are you here?” Funny, I thought maybe she might have read my
chart ahead of time, so she could know why I am there. I tell her that I have breast cancer, and we
go through the normal questions. I ask
if they have the results of the bone and CT scan. She says they do, and the doctor will get
them.
I disrobe, and wait
for the surgeon. She eventually comes
in, introduces herself, does an exam, and says the two scans are negative
except for some tiny nodules in the lungs which they do not believe are
cancer. I tell her that I had a chest
xray a couple of years ago which had showed some suspicious areas in my lungs,
so my PCP had ordered a CT scan which laid those suspicions to rest.
The surgeon had talked with the oncologist, and they want to
begin with chemotherapy rather than surgery.
I know that this is sometimes done, so I am not surprised; however, she
does not explain why this would be better. She doesn’t go into details about
the surgery or node involvement or when the surgery would take place.
I do tell her that I
am getting a second opinion this afternoon.
She asks where, and I tell her. It’s my understanding that she has ties
with the university based medical center I am going to. She does not mention
it. She never asks me if I have any questions, and before I can even say
anything about my questions, she is gone. I actually thought she was going to
return, but she did not. The nurse then makes a tentative appointment for a
port to be installed in about two weeks, so I can begin the chemo.
We are out of there by 8:45.
I felt like so much was left unsaid. Here I am trying to
make a decision concerning with whom I am about to trust my life. I needed more, and I did not get it. This
appointment did not get a very high grade.
My second opinion is at the highly rated university based
medical center. It’s about 20 miles
further away, albeit in some higher traffic than my local center. They offer a
free valet parking pass for the first visit, so we go early enough to find it,
and stop to eat lunch at their food court.
The medical center itself is a very big and busy place, but my
appointment is at one specialty building. When I go to the front desk with my
letter, they immediately have papers on me, and page someone to escort me to
the breast center. After the usual niceties of corroborating medical insurance,
I am called by a triage nurse who reads and copies off my medical info (I had
been given a questionnaire to fill out before coming) into the computer.
My
husband and I are escorted into an examining room, and after a very short time,
someone who identifies herself, but whose title I can’t remember, begins to go
over my diagnosis with me. She is quite
familiar with it. This is already a huge step up from the morning’s
appointment. She is very knowledgeable and friendly, asking not just about my
health, but also personal questions about who I am. I tell her that I have just
had a bone and CT scan and have copies of the results. She asks, “Who did that?” and I tell her the
center where I was diagnosed. She says, “We wouldn’t have done that, too much
radiation.”
She tells me the doctor will be in soon, and when she leaves, my
husband tells me he already thinks that “There’s nowhere like this place,
anywhere near this place, so this must be the place.” I agree with him, but try to keep an open
mind since I haven’t met the doctor yet.
We do wait a bit of time before the doctor comes in, but no
longer than I have waited for doctors before. When she comes in, after the
general courtesies, the first thing she asks me before the exam is “What is
your favorite play to direct?”(I had told the former young woman that I was a
retired theatre teacher.) I love this! I expected her to be familiar with my
chart, but she had already discussed with the nurse, resident, intern(?) some
of my personal information. What a great way to connect.
After the exam, she sits down with a piece of paper, and
begins to chart out all the possibilities for treatment with my particular
cancer. Although this is a second opinion appointment, she tells me she always
talks as if I am her patient. We discuss surgery for my breast, my lymph nodes,
types of chemotherapy, radiation – everything. She gives me the pros and cons
of surgery first, then chemo, rads, hormone and also chemo first, then surgery,
rads, hormone. She tells me that I’m a
little harder to deal with because I have more options that someone who is “triple
negative” or hormone receptor negative.
She does not push me in either direction.
At this point, I know this is my doctor, and I tell her that
I have made my decision to have my treatment with her.
I tell her that I can see both sides, but don’t feel that I
have the expertise to make the final decision, although I’m leaning toward
surgery first, since she explained that path might leave me open for less
lethal chemo drugs. The chemo first route might lessen the tumor size, even in
a small percentage of cancers, eliminate it, but stronger drugs would be
used. I know about the long term effects
of chemo, so it seems that the less lethal drugs would be better in the long
run.
Ordinarily, had I been diagnosed here, my case would have
been brought up before the “team” at their weekly meeting, and she would
already have had the oncologist’s opinion. However, since I was there on her
first day back from a trip to South America, the team meeting would not be
until the next week. She suggests that she bring it up with the medical
oncologist on the team and get their input.
She gives me her email address, so I can contact her with any concerns.
The rest of the nursing team gets right on requesting my
records from my previous CT scan so the lung nodules can be completely ruled
out.
Wow, what a difference from the morning. I’m sure they are perfectly competent at the
first place, but the amount of confidence I feel right now is
overwhelming. I am the least stressed
right now since this whole dance began.
The next morning, I hear from my new surgeon that she has discussed
my case with the oncologist, and she strongly feels surgery first is the best
option. I’m told to get in touch with my
surgeon’s temporary secretary and schedule the date for “a left complete axillary node dissection with axillary reverse mapping
and left breast wire-localized partial mastectomy.”
What this means is (1) I have at least one lymph node that
is positive for cancer, so many, but not necessarily all of them are going to
have to come out-some drain from the breast, some from the arm, but we don’t
know which is which (2) when all the lymph nodes come out, there is a possibility
of lymphedema which can cause the entire arm to swell. This is incurable because once lymph nodes
are gone, they’re gone. (3) by injecting a blue dye into my arm, they can map
which lymph nodes drain from my arm and not remove those; thereby, increasing
the possibility that I won’t get lymphedema and (4) since the cancer cannot be
felt, a needle (or wire) localization with numbing medication will be done by a
radiologist prior to the surgery to help guide the surgeon directly to the
cancer. Occasionally several wires may need to be placed to “bracket” an entire
area of concern for excision. Ain’t Science grand?
I contact the “temporary” secretary to discuss scheduling
and discovered the weak link in the process. We do eventually come up with a
date, but it’s a tortuous process rife with inaccuracies. Hopefully, the
regular secretary is only out for a short while.
For example, Temp said it was an outpatient surgery, while I
had read that if the axillary node was dissected, that equated to an overnight.
I let that one slide, and asked Temp if the surgeon would also install my “port”
(for chemo) at the same time of the surgery.
She said she’d check, and asked somebody else who told Temp they didn’t
think I was going to need chemo. I told Temp that possibility had never been
open to discussion (the original place was going to start with chemo!) but let
that slide as well.
Since I have my surgeon’s email, I put those questions to
her, and got a prompt response. I will be staying overnight, and I will have to
have chemo (Dang!) I won’t actually meet with my oncologist until after surgery,
so did not ask about the port.
I did find out that chemo usually starts 5-6 weeks after
surgery, so our 47th Anniversary trip to Las Vegas is safe! I will
be healed from the surgery, and not yet on chemo. Let the bacchanalia begin! At
least on Dec. 7-10th!
So here I am – twelve days out from changing my body as I
know it. The only appointment that I
will have to make is with the pre-op anesthesia clinic. I’m going to try to catch
up on all the household things that I have been putting off. I am going to eat healthily
– more about that in a later blog. I will do more reading, and make more check
lists to prepare myself for after surgery, chemo and radiation.
I am going to enjoy myself.
Suzanne, what a strong person you are! I feel so proud to know you. I suspect you already know the seriousness of lymphedema, from what you said, but I had never even heard of it until my dearest friend had Fallopian tube cancer, had surgery, got lymphedema in both legs, and the fluid overwhelmed her heart. It simply couldn't process it fast enough. She went in for open-heart surgery to fix a valve, and while she survived both surgeries, she got an infection and died. The lymphedema was so painful to her, as I could imagine, that she asked her husband to let her die. I think the pain clouded her judgment, too, because her cardiologist talked her out of minimally-invasive surgery and into open heart, because he wasn't trained for the former. Too much information, I'm sure, and I'm sorry, but continue to fight for everything that would prevent lymphedema. Blessings to you and Jeff! Wendy
ReplyDeleteSo sorry to hear about your friend. Lymphedema is nothing to fool around with, so I'm very glad my surgeon is on the cutting edge of what to do to prevent it. They even have a lymphedema specialist at U of C.
DeleteSuzanne, I'm just now hearing about this via Amy's face book account. So sorry to hear about your situation, but I have some news! In 2004, I was diagnosed with EXACTLY the same cancer type and one involved lymph node. After surgery to removed the lump and node, chemo and radiation, I was declared cancer free. I pray for the same results for you, Little Sister! *hugs* ... Sharron
ReplyDeleteNo longer have a phone number for you. Sent you an email on your hotmail account. Call me!
ReplyDelete