Recuperating As Expected


As Ann continues her recuperation from surgery on 1/17/03 we are preparing for the next step in her treatment, namely, chemotherapy. This email outlines both her recovery progress as well as our current research on coming treatments.

Surgical Recovery and Pain Management

Ann came home on Sunday (1/19/03) afternoon in a lot of pain. Obviously, her surgical wounds--the cuts made on her breast and under her arm for the lumpectomy and axillary lymph node dissection, respectively--were a major source of pain. However, the removal of the lymph nodes under her arm also involved the removal/irritation of a nerve and perhaps surprisingly this nerve caused her the greatest pain. She was also very bothered by the "drain" that came out below her armpit. The drain consists of a clear, soft, plastic tube connected to a bulb into which fluid drained. Once or twice a day, we removed the bulb, measured the volume of fluid, and discarded it.

Her pain medicine is a narcotic pain reliever called Norco which is simply a different formulation of the same ingredients (hydrocodone and acetaminophen) found in the more popular pain reliever Vicodin.

  http://health.yahoo.com/health/drugs/cx1480i/_0.html
  http://health.yahoo.com/health/drugs/vic1480/_0.html
  http://www.gettingwell.com/drug_info/rxdrugprofiles/drugs/VIC1480.shtml


She spent Sunday night in a recliner; lying down was too painful to think about. Monday she was feeling good enough to have her first sponge bath and she started doing her post-operative stretching exercises; spent the night propped up in a real bed. Tuesday night she was able to sleep lying flat in bed. By Wednesday the volume of fluid was low enough to have her drain removed; getting out of the house was a welcome, though brief, adventure. On Thursday she had enough energy for her first visitor (who wasn't a family member or clinician). By Friday (1/24/03) she was feeling good enough to take a shower on her own. Later that day she was examined to ensure that fluid was not accumulating on her side and none was found.

Ann continues to improve on a daily basis. She has enough energy to spend several hours up and about doing household chores as strenuous as laundry. But, she is still on her pain medication and she is very guarded in the use of her left arm. We've tried reducing her dosage but she finds this makes her exercises too painful. So, we bump her dosage back up to where she started when she came home.

Exercising her arm is important to make sure that she regains full use of the arm. If she doesn't regain her full range of motion in the next week she risks permanent loss. Every day she is able to raise her arm a little higher but still can't get it up straight all the way.

On Monday (1/27/03) we had a follow-up consultation with Ann's surgeon, Dr. David P. Winchester. He expressed satisfaction with all aspects of her recovery but was concerned with the limits of her arm's range of motion. His staff will monitor her continued progress and will send her to physical therapy if necessary.


Prognosis and Treatment Plan

During our consultation with Dr. Winchester on Monday (1/27/03) we asked for an update on her prognosis. As you recall, during our first consultation he indicated that her diagnosis as pure ductal carcinoma in situ (DCIS) gave her a 20-year survival rate of 98% with a treatment plan of just surgery and radiation. Since then, however, her prognosis changed unfavorably as a result of finding micro-metastatic disease in her two sentinel lymph nodes. The characterization of her cancer has changed from "in situ" (confined to inside the mammary ducts) to "invasive" (outside the ducts and therefore able to spread); the most bothersome classification is that she is now "node positive." Now her 5-year survival rate is 80%. Moreover, chemotherapy is required in addition to radiation. We continue to expect the chemotherapy to consist of four treatments every three weeks beginning a few weeks from now. A few weeks after chemotherapy is completed Ann will begin six weeks of daily radiation therapy.

We are very disheartened by these changes. We find some solace in the fact that only 2 out of the 20 lymph nodes that were removed show any sign of cancer and, perhaps more important, that the amount of cancer in these 2 nodes is very small (hence the term "micro-metastatic").

Dr. Winchester advises optimism and we are trying to follow the doctor's order.

We have chosen the medical oncologist who will handle the chemotherapy portion of Ann's treatment. He is Dr. Douglas Merkel, an assistant professor at Northwestern University's medical school and part of Evanston Northwestern Healthcare (ENH) group.

  http://www.medicine.northwestern.edu/divisions/hematology_oncology/faculty/demerkel.htm

We have our first consultation with Dr. Merkel scheduled for tomorrow, Thursday (1/30/03). We will let you know what he advises after we have time to understand it ourselves, probably not before Friday.

We have also chosen a medical oncologist for a second opinion. He is Dr. William Gradishar, an associate professor at Northwestern's medical school who practices at Northwestern Memorial Hospital (NMH). As you recall, it was NMH where we went for Ann's pre-operative second opinion.

  http://www.medicine.northwestern.edu/divisions/hematology_oncology/faculty/wjgradishar.htm

Our consultation with Dr. Gradishar is scheduled for Monday, 2/10/03.


Pathology Updates

We have an addendum to the ENH pathology report regarding the tissue removed during Ann's surgery. Specifically, we now know that Ann's tumor is both estrogen- and progesterone-receptor positive. We expect that this means that the oncologist will recommend extended treatment with tamoxifen. The tumor was negative for HER-2/neu which is a favorable outcome as we understand. Obviously, we will know more about how to interpret these findings after consulting with an oncologist.

We have requested NMH to provide a second opinion on these pathology results.


Networking with Breast Cancer Survivors

Ann has been reaching out to breast cancer survivors for their input on oncologists and chemotherapy regimes. She's found that even women with the same diagnosis pursue very different treatments. Some of the stories are funny and others are poignant; all reflect the attitude and fortitude of the individual woman. Breast cancer is a deeply personal experience and treatment choices reflect the patient's personal values and fears.


Your Support Continues

Once again, we want to thank you for your support. Ann loves the cards, emails, flowers, phone calls...you name it, she appreciates the support that all of you express. We are both learning to accept the help that you offer and are very thankful to have you there for us.

Love,

Ann and Nello





Posted: Wed - January 29, 2003 at 12:00 AM        

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