#4 October 22-24

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 47^th 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. 7-10^th!

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.