Double Masectomy Unnecessary!

RN2B2005 · Jan 21, 2003

My mother and grandmother both had pre-menopausal BRCA, and in my mother's case I insisted that the biopsy be sent to two separate labs to confirm the dx. It cost a little money but it put the fears I had to rest--my mother has lumpy, fibrocystic breasts AND neurofibromatosis, so she has benign tumours EVERYWHERE.

I agree that being told you don't have CA is not "traumatic", but going through the surgery and emotional strain of being diagnosed as a cancer patient certainly does qualify as stressful.

There was a similar case here at the University of Washington about a year ago, I think the woman was misdiagnosed with some aggressive form of uterine CA. She ended up with a complete hysterectomy and chemo and radiation before being told that the original test was wrong--not mislabelled, just a false positive that nobody ever double-checked. She sued the test manufacturer, her physicians, and the hospital. She was treated for something like 2 years before someone repeated the original test and came up with a different result. She was young, in her twenties, and it was front-page news. If I can find a link I'll post it.

I'm generally for capping lawsuits and tort reform, but I think there should be allowances for especially onerous cases like these, where not one but a whole chain of mistakes are made by multiple professionals over a period of time. :eek:

Silicone · Jan 22, 2003

Mona, thank you for having the courage to share your experience. I will never forget what you've written.

Samantha

researchrabbit · Jan 22, 2003

((((((((((mona)))))))))))

Thank you for sharing....

HRHNurse Carol · Feb 3, 2003

I think I can't understand how this happened- when I was diagnosed at age 33 we did a needle biopsy for a lump that we thought was an absess because it was painful. Oops, no pus was found but dang I was still suprised when it came back with cancer cells. In total shock. We then got a surgical biopsy under local because we needed to R/O inflammatory cancer before deciding treatment. I saw the cells. My Dr. saw the cells. She went to the lab to check under the scope herself (dang I wish she hadn't retired this year). My first thought was get rid of those suckers, they are trying to kill me!! My Dr. diplomatically talked me into a lumpectomy. I had a 2.5 cm tumor removed that was estrogen negative. I had 16 lymph nodes removed, one being positive. I decided I wanted chemo and radiation at the same time and I wanted Adriamycin. So we went for that. Oops, the chemo guy didn't see it as a problem and the radiation guy didnt' realize I was getting adri. Oops- Adri multiplies the effect of radiation. I now have aright breast thats waaaaay smaller than the left and horribly disfigured. Oops. Flash forward to almost five years later., 1999. A suspicious chest xray. Go for a CT. Well, looks like the cancer has returned. Have a swollen lymph gland next to the pulmonary artery, and a mass in left lung. My primary is sure. The radiation guy is sure, although he thinks that it might be primary lung cancer. My original breast surg. is sure. I was too pissed at the chemo guy's office manager (another story) to go back to him so I go to Uof C which is one of the nations best cancer centers. Yep they are sure there too- seen by two docs that are sure. So get scheduled for bone marrow transplant and Herceptin after that. However, insurance wants a tissue sample. So, I go in for a lung biopsy under guided CT. Didn't know I needed to have someone drive me home, oops. They did it anyway. After being stabbed repeatedly in the chest with a needle they finally got a sample. I know when they did because I developed a pneumo and I felt that down to my toes. Mind you this is under local. Afterwards they said wow you were really a good pt, usually we have to give sedation. Made up my mind to never be a good pt. again. Finally crawled home and recovered. Oops- tissue sample wasn't enough. So they decide to do a bronchoscopy and possible thoracotomy for a tissue sample. Oh, yes, the chest surgeon they referred me to also thought it was definately Ca just not sure if mets or primary. Thats a total of 6 docs (attendings) who are sure I have ca. Anyway, get scheduled for surg. In meantime I wonder if I want to go through with all this, knowing the prognosis wouldn't be good. Consider suicide. Finally decide that I have to outlive my mom at all costs. Go for surgery. They can't do a bronch and get the sample without doing major lung damage so I end up with a thoracotomy through my left back. Wake up with chest tubes and really hurting, vomiting cause allergic to MSO4 but we didn't know that yet. Get told, hey you don't have cancer. Well, what was it then?? They don't know. It was something but they have no idea what. At first relieved. Still am. Funny thing was, the UofC docs got rid of me so fast...the breast people never even saw me again. Now that makes me angry. Mistakes happen. I make mistakes. But there is a way to handle that!! For good PR if nothing else. My original team of docs were great to me. I do not blame them I know that they were going on their true beliefs. All the docs were. But dang it the other docs shouldn't have brushed me aside like that!!! No I haven't sued anyone at any time. I am the type that likes to move on down the road and if you get involved in a lawsuit you can't do that. But I can understand this woman totally. As far as body image- remember, I found out my body was trying to kill me. I hated the way my breast looked. I hated my breast for turning on me. I gained 100# pounds. I quit dating cause I couldn't stand for someone to see my disfigured breast. I didn't date for 9 years. Then I don't know, maybe it was turning 40 and then 9/11, I decided enough. I looked at my body for really the first time...this is my breast. These are my scars. I finally accepted my body as also being a victim, not the perpetrator. But- it took me those many years to forgive and accept. I have been happy to find out that scars don't really turn a guy off- not the kind of man I'm willing to go out with anyway. I will be turning 42 this month and I know now that I will never be a mom. Instead of looking for someone to settle down with and turn my body into an nurturing instrument I was rejecting and hating it. That is my own damn fault. If I hadn't been so, as I thought, disfigured??? I dunno. For me, I have to accept what life deals me, mistakes and all. I handle things my way. This woman has to handle this the way that is best for her. My heart is with her and the other woman. And I can support any and all measures she takes to deal with this in her life, whether it is my way of doing things or not.

Sleepyeyes · Feb 3, 2003

((((mona)))) and ((((carol)))))

thanks for sharing your stories. I, too, feel that this woman's body image and sexuality have been irrevocably altered, and $250,000 just won't be enough to compensate for this mistake.

bad enough to have a reason to have a mastectomy; to discover that it was an unnecessary surgery, is awful.

To those of you who believe that since the woman was finally diagnosed without cancer:

your attitude reminds me of rape cases of years ago, when the victims were often told, "well, you were raped, but at least you weren't hurt."

And re: her "composure:" (shock?)

If that happened to me and I had to talk publicly about it, they'd have to give me a whole lotta Valium....