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Nearly 17 Years from Diagnosis; Doing Fine, Thank You!

On 14 March 1991 at 11:43am, I was told I had infiltrating, inflammatory, adenocarcinoma of the right breast. This is breast cancer. By definition, any woman with inflammatory breast cancer (IBC) and no distant metastatic disease is staged at Stage IIIb. The other pertinent measures of my particular cancer were estrogen-receptor positive/progesterone-receptor negative, high S-phase, overexpressed her-2-neu (3+), and diploid.

Because of the type of insurance I had chosen, my primary care physician at the UCLA Medical Center was only five minutes away from my office at UCLA. This proved to be important because it meant that I got referred into a tertiary care clinic ON THE DAY I WAS DIAGNOSED. Without doing anything extraordinary, I'd probably done the most important thing for successful treatment of IBC: Get connected with specialists as quickly as possible after you're diagnosed.

Within five days I had a confirming mammogram and an excisional biopsy. By the following Friday, my favorite surgeon had connected me to the woman who would become my favorite oncologist. In a three hour conference, she found out more about my health history than I knew existed. By the end of that conference, I had found an oncdoc I felt would do a good job advocating for me and was headed to participate in the first of several protocols that would govern my treatment.

The first challenge was to organize a BUNCH of tests and have them completed by the following Tuesday. Do it yourself became the rule since it takes a lot less time and once people get used to your asking questions, you'll get answers to any questions you ask MUCH more quickly. Ever since, I've continued to schedule all my tests myself.

The first set of tests included bloods (of course), a bone scan, a CAT scan, an EKG, and a chest x-ray.

Tuesday afternoon, I met again with my oncdoc and she went over the test results with me. She pronounced me fit to start chemotherapy on Wednesday, as soon as we finished all the permissions and paperwork.

One of those documents was a statement that I understood that chemotherapy might make me sterile. Given that I had been told that I was perimenopausal about seven years previously, I didn't think this was any big deal, but signed the paper anyway. This became a running gag in my future medical treatment because I have yet to have a clear understanding of how one person can be made sterile more than once!

It is induction chemotherapy, i.e., it is administered as you are "inducted" into the system, and is performed before any surgery beyond the biopsy takes place. I didn't know then that part of the reason for doing the initial chemo was to determine whether my disease was susceptible to chemotherapy and the docs needed something to measure so they could make this evaluation.

This was also the time when I asked what we'd do if this came back after the chemo and surgery. At that time my oncdoc said that we'd find the most powerful treatment at that future time and use it. This is what I now call "The Big Hammer Theory"; Find the biggest possible hammer and use it as quickly as possible.

That Friday, I also wrote the first of my Weakly Reports. I came up with the Weakly Report because, even during the first week when my diagnosis was still being definitively specified, I got email notes from my friends saying, "I don't want to bug you, but I want you to know I care and I want to know what's happening." The Weakly Report served two purposes: they knew they could expect it each week and once they got into my mailing list I didn't have to worry about who did or didn't get the information for any particular week. Minimizing the customized information and maximizing the information distribution will simplify your life.   The addtional advantage is that I wound up getting kind of random encouraging emails from nearly everybody I sent the report to over the eleven months I was in active treatment.  

I continued to work through the initial chemotherapy. With one exception, all of my chemos were on Friday afternoon. If I had any side effects, I would be over them by Monday. One of the things I learned at this point was that the medical folks wouldn't let me drive after my chemo so I needed to find somebody to drive me to and from the appointments. Since I was going to work in the morning, one friend gave me a ride to work. Then, another would show up at chemo, sit with me through the infusions, and then drive me home. When people volunteer to help, take them up on it. Or,, at least make sure you put their name on a list for future help.  

Friday before my surgery, I had my last pre-surgical meeting with my oncdoc. At this conference, she told me that I was a good candidate for a bone marrow transplant (it would be actual bone marrow at that point in time) and that we'd talk about it after I got through with the surgery.

As things turned out, being told I was a candidate for a transplant was probably the scariest thing that happened to me during the whole period of my active treatment. In 1991, such a transplant for something other than leukemia and lymphoma was not widely performed. I wound up having a long talk on a Sunday afternoon with my oncdoc because the whole notion of a transplant seemed to blow me out of the water and I knew I couldn't head for surgery in that state of mind.

On Tuesday, 18 June, my friend, Kitty, took me to the first of my four inpatient visits to the 9th floor of the UCLA Medical Center. On this trip, I had a right modified radical mastectomy.

I was out of surgery and into my room by about 2pm. I started doing wallwalkers that evening. Saturday, I was released from the hospital to home. The Reach to Recovery volunteer showed up at my house the day I got home, right on the heels of my Mom, who came down from near Seattle stay with me (and drive since I couldn't shift gears) for three weeks. Shortly after my Mom arrived, she told me that my sister, Dawn, had been diagnosed with breast cancer about two weeks after I had and that she had been staged at Stage II.

About two weeks after I got home, I returned to the medical center to have my staples and drains removed. I also talked to my oncdoc about the transplant and what needed to be done. Because UCLA wasn't doing transplants for solid tumors at that time, she referred me to the City of Hope National Medical Center where I ultimately connected with a BUNCH of oncdocs. As it turns out, each patient at the City of Hope has a doctor, but all of the doctors on the team for a particular area meet very frequently to review all the cases in their area. In my situation, the team had responsibility for an area called Bone Marrow Oncology (aka BMO), where patients who will be receiving a transplant following high dose chemotherapy for some type of solid tumor are located.

Shortly after my initial meeting with my CoH oncdoc, I received notification that I was medically qualified for the transplant procedure. While waiting for the insurance company's (negative) decision to pay for the transplant, I asked whether I could do my radiation while I was waiting. Because my cancer was on the right side, everybody agreed that I could.

After two days of excruciatingly boring setups for the radiation, from the end of September until the middle of November, I caught my rays each morning at the UCLA Department of Radiation Oncology. The best part about this was that, while I started out having to come at about 11am, within seven treatments, I had "graduated" to the first time slot in the morning which meant that I never had to wait for some other patient to finish treatment!  I learned one very important thing during this time: You can control your treatment environment.

Once I was finished with my rays, I reconnected to the oncdoc at CoH start on staging tests for the high-dose chemo and transplant which would begin as soon as the irradiated area had healed, about a month after I finished radiation.

At the point where the staging was complete, the oncdoc told me that the transplant process had changed from bone marrow to stem cells. He also told me how the process of extracting stem cells worked and that I'd need to get a shot every day to encourage those cells to grow. The shot turned out to be part of the clinical trial for filgrastim (aka Amgen's Neupogen®. I ultimately had 30 bags of cells to be reinfused, a MUCH larger volume of material than most people get nowadays because the process of extracting stem cells has been WAY improved!

On 7 January 1992, I became an inpatient in the BMO (Bone Marrow Oncology) unit of the City of Hope. The amount of paperwork to be done was simply amazing, including one document that said I understood that having high-dose chemotherapy probably would make me sterile. I said that I'd signed a similar document when I started my chemo at UCLA and I didn't see why signing a second one was necessary. It turns out this is yet another piece of the paperwork trail that must be travelled whether there's any logic to it or not!

My high-dose chemotherapy regimen was 96 hours of Adriamycin, one day off, three separate days of VP-16, one day off, 24 hours of Cytoxan, one day off, and then REINFUSION over two days. I was in a "regular" room for the first two weeks, meaning that I could go out and walk around the campus and that visitors only needed to wash their hands thoroughly before coming in. On the day that I started reinfusion, my white counts had gone to zero and I moved to isolation. In isolation at that time, any visitors needed to scrub up, wear a gown, gloves, mask, and hat. Now, only scrubbing and a mask are required for patients in isolation.

Newbies always ask about the side effects of high-dose. The main ones that bugged me were were diarrhea and vomiting. In spite of loads of ativan and Zofran, I still had these, though probably in reduced severity. Also, I had fairly severe mucositis, including losing the entire lining of my esophagus.  Today those side effects are way reduced for most patients.  One of my friends recently received HDC/SCR and had mild nausea but no vomiting during her entire treatment.

Since I went through the process, I've personally talked to more than 1500 women who have done the same thing. I've noticed two other side effects that didn't affect me. The first is that patients sometimes develop a skin rash which usually clears up pretty well. The second one seems to be primarily in patients who receive high-dose cisplatin (or one of the other platinum drugs); they may lose some of their hearing. The degree of loss seems to vary and the degree to which they recover their hearing also seems to vary.

One of the things that seems to happen to everybody in high-dose is that we wind up suffering from chemobrain, for lack of a better term. It is characterized by disorientation and by really awful short-term memory. It seems to be partly the result of the various medications given to minimize the various side-effects and partly other things.  And, as my oncdoc frequently reminds me, "You did get older while you were being treated!"  Some research work has recently been done by neurologists in cooperation with oncologists.  They have found that "chemobrain" is real and now are working to find ways to minimize its effects.

One other thing that occurs to me about the time in the hospital is the matter of Phase I and Phase II diets. Phase I is basically the high-dose chemotherapy period. Phase II is the post reinfusion period. Between Phase I and Phase II most people have a period when they don't eat anything. However, during that period, patients still receive nutrition using what I call baggie food. Officially, this is known as parenteral nutrition.

Because of the bacteria limits and apparently short list of acceptable foods, except for the first day when I had chili, I ate mainly bland food like macaroni or rotelli with margarine on them, vegetables, and bread during the Phase I part of my stay. But, just as I started eating again during Phase II, I had a conversation with one of the dieticians' staff members. It turns out that the dieticians could make arrangements for just about anything within the limits of the Phase diets. As a result, the first weekend after I started eating again, I had a double order of French toast made with Eggbeaters, skim milk, and Nutrasweet, spread with margarine, and covered with sugar-free maple syrup. It was excellent: The menu list is not definitive!

On 4 February 1992, at 11:35am, ten months and twenty days after being diagnosed, I walked out of the City of Hope (with my computer) and my last active invasive treatment for breast cancer. At 1:23pm on Tuesday, 4 February 1992, I started the rest of my life.

On 5 February, I started taking tamoxifen.  In May, 2000, my oncdoc had me switch to taking Femara.

One of the things the staff made very clear before I was discharged was that I was not to try driving for a week or two until my physical strength was improved, approximately until the date of my discharge appointment at the City of Hope.

Before I'd gone into the hospital, I had stocked up my freezer with my favorite frozen foods, figuring that I probably wouldn't feel much like eating or cooking right after I got home. Given how particular the medical staff had been about my not gaining or losing weight while I was in the hospital, I was surprised to find that I was neither incredibly hungry nor incredibly full when I got home. I'd been dreaming about peanut butter and jelly sandwiches in the hospital so the first lunch at home was PBnJ with a giant glass of skim milk.

As part of the treatment to prepare patients for their very low (or non-existent) white count, City of Hope puts patients on non-absorbing antibiotics. These have the effect of killing the "good" bacteria in your digestive system. A by-product of this is that, even after you start eating again, you may still not have a completely functional digestive system. It turns out that one way to speed up this recovery (and a good hint for any patients having abdominal surgery as well) is to eat yogurt with active culture for a day or two. It helps reduce the incidence of diarrhea (in my case, two cups of yogurt actually solved the problem).

On my last afternoon in the hospital, it became very clear that my endurance for things like walking and other activities requiring me to be in a more or less vertical position was very low. After thinking about this for a while and realizing that I am not good at meeting big goals (I do better with incremental goals), I decided that how I would get my physical strength back would be to walk to the far end of my street by the end of my first month at home. Normally, I can walk this distance in about 30 minutes and, normally, I walk it twice a day for a total of about three miles.

Because my house number ended with zero, I decided that I would walk on the street every day, going ten more house numbers each day, until I was able to walk to the end of the street. I wasn't concerned with the length of time it would take, just that I would be able to walk to the end of the street in a month. On the first day I walked to the far end of the street, it took me two hours to walk there and back just once. Gradually building up to your normal activities is probably the best plan.

The day after I came home, a flyer appeared in the mail advertising a breast cancer support group which was getting started at UCLA. My first big outing two weeks after I came home was to attend the support group's second meeting. Before I attended that meeting, I wouldn't have thought of myself as being a "group" person. But, I found two things that a support group provides: information and other people in the same boat as me.

On 5 March 1992, I presented two lectures at a professional meeting. They were not up to my usual presentation standards, but they were delivered, the content was covered, and I genuinely felt like I was really on the road to recovery. One of the lectures was called A Patient's Eye View of Medical Image Processing and got a round of applause from the audience, many of whom had been recipients of my Weakly Report for the preceding year!

About two months after I escaped from BMO, I had a meeting with my surgeon and discussed the options about reconstruction and prophylactic mastectomy and the reasons why I was considering them. He said that the decision was mine to make but that he believed I had a good case for the prophylactic mastectomy. About three weeks later, I decided to go for it and made arrangements for admission to the hospital one year after my original surgery, the second of my annual inspections of the ninth floor of the UCLA Medical Center. I decided against reconstruction on either side because nobody could demonstrate to me that a reconstruction wouldn't obsure a potential recurrence or a new tumor.  But, additionally, reconstruction options were not great at that point.  They are now MUCH better!

One of the issues I've confronted from Day 1 is the matter of diet because I was diagnosed with hypertension (high blood pressure), hyperglycemia (diabetes), and hypercholesterolemia (high blood cholesterol levels) during the staging tests for my breast cancer diagnosis. The practice where my primary care physician is located has a dietician who helps newly diagnosed diabetics understand how to organize their diets. When she learned that I also had blood pressure and cholesterol to worry about and I asked what I needed to change because of those conditions, she went through all three sets of diets with me. In addition to being extremely similar, all three were quite similar to the dietary changes recommended for patients being treated for breast cancer. In summary, they are:

  • 100 grams of protein per meal (this is a piece of chicken or fish about the size of the palm of my hand -- approximately 3.5 inches square -- and is also about the size of one-quarter of a regular dinner plate)
  • complex carbohydrates (this is enough rice or potato to cover another quarter of the dinner plate)
  • vegetables (sufficient to cover the remaining half of the dinner plate)
  • fresh fruit or canned/frozen unsweetened fruit (for diabetics, to be eaten with with something containing fat and protein in order to metabolize properly)
  • skim milk, sugar-free sodas, and water (skip the fruit juices)
What these suggestions really amount to is eating a normal, healthy diet without added sugar, salt, and fat and with limited caffeine.  Considerably after I came up with this combination on the advice of all the docs and dieticians, the American Heart Association's journal, Circulation, published a set of preventative nutrition guidelines that are supported by the AHA, the American Cancer Society, American Academy of Pediatrics, NIH, and the American Society for Clinical Nutrition.  And, newer approaches to this same issue are being published now.

Several of my friends have investigated soy preparations and herbal medicines as a way to insure their continued survival. I decided that those alternatives were not reasonable for me on several counts: because I travel quite a bit and because I don't have the patience to do something that's not a clear benefit. So, I decided to limit my dietary changes to those recommended by the dietician. As it happens, these changes are not too difficult to implement although chefs in very nice restaurants become extremely irriated by a request for plain poached salmon, steamed rice or potatoes, steamed vegetables, and plain fruit for dessert. ;-) A real happystance is that more and more restaurants actually have these kinds of items on their printed menu.

But, I also believe life is too short to live without an occasional cheeseburger and fries, without chocolate, and without ice cream. A dietician named Carolyn Katzen told me about the 80-20 rule. So, now, I make certain I behave, dietarily speaking, 80 percent of the time. I also have a cheeseburger (tomato, ketchup, mustard, and heavy onion) each month with fries. I also discovered no-sugar-added ice cream. Triple Chocolate and Cherries Jubilee are great!  As things turn out, most days, I'm behaving about 9 days out of 10.

In summary, this is how things happened to me and what I did to cope with some of the nastier issues. But, what worked for me may not work for you. Do whatever works for you.

A two-part, much longer version of this piece together with The Rules According to Virginia and my timelines can be found on the web site for You Are Not Alone, the high-dose chemotherapy support group that I head. The longer version includes a number of my thoughts about post-treatment issues as well, which you'll probably not be interested in for a year or two.

If you have questions about anything I've said here, please send me email at the address below.

Copyright 2007 Virginia R. Hetrick
Most recent update: 27 November 2007 05:41:27
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