IBC Support
About IBC
Newly Diagnosed?
Mailing List
Patient Stories
Treatment Info

Susan's Story

Sometimes I think I must have been born under a most interesting star -- one that insures that I never do anything by halves!

In May 1995, I was diagnosed with two Stage III primary cancers -- breast (probably inflammatory) and ovarian. I went to my gynecologist for a lump in my right breast which, after coming and going and coming and going, stayed -- and she found it ominous to the touch and examination, and probed around in my groin, just being thorough -- and by mid-afternoon, two mammograms and a vaginal ultrasound later, it seemed a reasonable bet that I was in big, big trouble.

Thus began the rounds -- fine-needle biopsies (no cancer found!); stereotactic biopsy; full hysterectomy, etc. and debulking. Just to make the fun complete, a benign adenoma was removed from my other breast! I recovered fast from the initial surgery and then began the rounds of docs to discuss options for chemo, more surgery, etc. I did second and third opinions at Georgetown and Johns Hopkins -- and at Hopkins a brilliant doc, Dr. Deborah Armstrong, thought my weird case might capture the fancy of her colleagues at the National Cancer Institute, where a Phase I high dose chemo program was showing some great results for ovarian cancer and promised to be perhaps helpful for breast cancer. By the time I got to NCI for evaluation and discussion (bone scans, MUGA, hearing test, more CATs, etc.), the breast tumor was getting bigger by the minute, it seemed, and pinking up nicely, with that charming touch of peau d'orange we've all come to know so well.

I was accepted into the clinical trial promptly -- my favorite doctor quote was, "Except for those two cancers and some gallstones (asymptomatic), you're as healthy as a horse." I came in on a "compassionate' basis, since normally multiple primary cancers would rule a person out of a trial. In short, they took me because they thought it might do some good.

In the meantime, I was in the process of losing my job -- which was, ironically, that of executive director of the National Women's Hall of Fame. They decided that since I was the "lead dog" staffer and easily the most expensive one, that when I ran out of leave, I'd have to move on. No laws prevented them from doing this because the staff was smaller than 50. Bummer, to say the least! Just what a girl needs -- no job and two cancers. But -- angels are everywhere when you least expect them. I obtained another book contract and successfully finished a book during my treatment, and also did a lot of consulting work. In the year of my treatment for two cancers, I earned more money than I ever had in my life!

The chemo was very high dose Taxol, cisplatin and cytoxan, administered after extensive premeds and hydration, etc. over 24 hours, in the hospital (in my case, the NIH Clinical Center). The stuff is so allegedly toxic that the first two rounds are administered in the intensive care unit, so patients can be on cardiac monitors, etc. and where there are people ready to pounce in the event of allergic reactions. I had one of those on Round Two -- lots of people react to Taxol, I've learned -- so they did a graduated-dose build up from there on through six more cycles, which worked fine but added a day to my hospital stay. Apparently this combo worked very quickly for both cancers (I didn't have much left of the ovarian after surgery in any event) -- and the breast started to drop down and de-pink after two cycles. It continued and continued to dwindle (the tumor, not the boob!) and finally, after a total of 8 cycles, nothing showed to the touch or even on a mammogram. I'd also had what's called "second look" surgery for the ovarian -- a laparotomy to see if there is any residual cancer after six cycles of the chemo -- and the results were -- no cancer! NCI then prescribes at least two more cycles -- which I agreed to -- and then we stopped chemo in February 1996.

In March, I had a simple mastectomy; no lymph nodes had ever been felt to be involved to manual exam, and the very conservative surgeon who did the mastectomy examined "a zillion" of them and found no involvement. But I was glad I'd continued the course and had the mastectomy -- there were several scattered cells still lurking in the breast! Then I did the usual six weeks of radiation. And I'm in remission -- knock wood, praise heaven, cross your fingers! -- and want to stay that way!!

Genetically, I'm apparently not at risk for breast cancer or ovarian (no BRAC 1-2 ) -- and there is no history of cancer in my family for at least 3 generations back on one side and four on the other. I grew up on Long Island, NY, near the "cancer belt" -- and somehow think that perhaps I had more than my share of DDT and other pesticides. I can remember clouds of spray every summer. Hmmm. Perhaps the more likely culprit in my case is that I have the classic combo of extremely strong bones and very high estrogen, which just recently has been identified as a cancer marker. I was allergic to dairy products as a child and my parents, on doc's orders, stuffed me with all sorts of other calcium and protein-giving foods...producing bones that can be used as baseball bats and, apparently, very high estrogen...and two cancers? Hard to tell.

My life is full, and good. I am 53 -- happily married to a terrific and loving husband, and stepmother to three, now grown, sons. I'm about to become a grandmother! I am an association executive, having been the CEO of several, and I've written several histories involving education. At present I'm working on a book for cancer patients -- the one I couldn't find when I went yowling off in search of help when diagnosed -- called "Taking Charge of Cancer: Ideas, Advice and Insights from Top Medical Professionals and Their Families." I've interviewed myself blue in the face at the great teaching hospitals and NCI, etc. and am about to start writing. Unfortunately my need to work for a living means I can only write part-time (I run the Coalition for America's Children, a 350-organization alliance of children's advocacy organizations, the rest of the time!). I'm working with NIH as part of the patient advisory team for the new clinical center they are building, and I am active in the Washington and Alexandria women's community. I am also involved in ovarian cancer lobbying etc. for research funds. As you can probably tell, I'm busy -- and I love it. Sorry this is so long -- but don't I get "extra credit" for having to talk about two cancers??!

My wish for all who read this is courage -- and good health!


This web site is owned and operated by Pete Bevin. Please read the site disclaimer.