Double Masectomy Unnecessary! - page 4
Did any of you happen to see "The Today Show" this morning? They did an interview with a woman, and of course her lawyer, who had a double masectomy because she was told she had breast cancer. Then... Read More
Jan 21, '03Originally posted by OBNURSEHEATHER
There isn't a magic dollar amount Susy, but I'd expect a little more compassion and sympathy than "shut up and be happy you don't have cancer." I understand where you're coming from with your friend and FIL, but you need to look at it from the other side.
My mom is also a breast cancer survivor and I think the timing of this subject is just....well....bad. (as you know).
Jan 21, '03I can't even imagine what his poor woman is going through, what a horrible and traumatic thing to happen!
and Yes.. she should be happy she doesn't have cancer... but to undergo a double mascectomy for nil! and the decision she and her family had to make because of this incorrect diagnosis...such emotional anguish for this family to endure
and to have both her breast missing unnecassarily! that is difficult enought to live with when you know it was the right thing to do in order to save your life... now what!
I was also reading that hospital pathlogist was not terminated! I"m sorrrrry but I think that person should have been FIRED!
Jan 21, '03"I'm sorry but It doesn't look good". Tears start streaming down your face as you lay in post-op still fuzzy from the anesthesia. A couple of arm squeezes from the post-op nurse. My husband helps me get dressed and we prepare to leave and the nurse who admitted me to same day surgery wants to know why I am crying. So we tell them. The Dr just took the biopsy and he said that it doesn't look good. Now we have to wait. Now you start to learn a little more about cancer. As you read you are sickened, you feel surreal. You continue to wait for results. Many hushed phone calls. Kids are around so I tell people not to call much because I don't want the kids freakin out. Husband supporting me best he can, but, I can tell he is afraid. Dr finally calls with the results from the biopsy, luckily my husband answers the phone. I just knew it was the Dr. calling. I watch my husband talk and I can tell from his body language that the biopsy positive. The Dr wants to see us. Okay, here is where the really scary part comes in. We go to the surgeon and he is stuck in surgery, he calls the office and asks us if we would rather reschedule intead of wait. We say no way we're rescheduling. I don't know what to do with myself, we walk around. I think we ended up waiting around 4 hours. Finally, the Dr. arrives. Well, let me tell you I was never so afraid to see someone like I was of seeing him. Terrified, I was stoned on pure adrenalin and fear. He starts to tell you that yes you do have cancer and you have stage II invasive breast cancer. Everything is surreal, I can't even remember some of what he was saying, thank God my husband was there. Then we start discussing options. And you can't believe that you are actually thinking of certain things like having a modified radical mastectomy or a bilateral mastectomy. I choose the bilateral because of my age (36). Okay, fear is now everything. Fear for yourself, your husband and your beautiful children. What is gonna happen to my kids? How are they going to deal with not having a mother around. I think I would have let the dr take my breasts off right then and there. All of a sudden I was terrified of my body. And this people, is a really really scary feeling. Myriad of dr's appoints to be made. Having to deal with all the ignorant I don't give a sh*t attitudes of dr's offices. There were of course many competent and helpful nurses and such but let me tell ya, there is a whole lot of uncompassionate and incompetent people out there. Okay, so now it's time to see the ONCOLOGIST. OMG, I can tell you that right now I'm actually nauseous thinking about my onc. Okay, this was a real treat. You discuss options like chemotherapy although I have to say the oncologist did ease into things with me I think. You go to your kids softball game and almost pass out in the restroom. Okay, now to the big surgery. Ever been run over by a truck? I wait in preop with about twenty other people(this was really weird) and they kept asking me exactly what they were going to do. They made me say "I am having both my breast removed in surgery". I wake up after 7-8 hours of surgery I had recontruction at the same time totally sick from anesthesia. My poor hubby was exhausted. People came to see me although I widh they wouldn't have. So now its about 9pm on the night of my surgery and hubby says he has just got to go home and get some rest and I would imagine to collect himself. So there I am all alone. NEVER in my life was I so scared. I tried to get up and all the blood from my drains and wounds burned like he**. I kept thinking I gotta pee. I was somewhat obsessed with the thought of peeing, that was wierd. Didn't matter, I couldn't get up, I. finally called the nurse who took forever to come in to help me but she couldn't help me up. I'll have to say I drew the short straw on the nursing staff throughout this whole thing at the hospital but I know they are busy I know that the state of healthcare suc**. I had one of those movement beds that malfuntioned all night long. There was no way I was staying in that hospital another day. Nope, one night was enough for me. I wanted to be home with my family. Tried like he** til I got out of bed and finally peed. Told the Doc I wanna go home. Well let me describe what I looked like. I had three drains put in and I would have to empty each drain. I was wrapped up like a mummy and boy did I hurt. I was starting to panic in the hospital beacause I didn't think I was going to be able to get in the car. What a mess. Finally home and start the recovery. Man, I think back on that and I don't know how I got through it. I couldn't get up by myself. If you think about it you use your arm and chest muscles for just about everything. Hubby slept on the floor so he wouldn't move the bed. I had to wake him to go to the bathroom. Didn't eat much but I remember getting one of those pepridge farm cookies in a gift basket and I swear it was the best cookie I ever had. Finally recovered after about a week. Now we have to go to docs to find out if the cancer has spread to the nodes. Yes it has, just one and microscopic at that. Well that was a relief. Okay, now it's time to remove your drains. Holy sh*t did that hurt. OMG, It really hurt. Finally can see my chest. I can't beleive all this has happened. I think it was good to have the reconstructive surgery because at least I had something to look at. No nipples though, their history. No feeling in my breast either so anybody who doesn't think that breasts are important are sadly mistaken. I miss having feeling there. There is no connection between my breast and sexual urge now. That is a darn shame. Then comes the really fun ride, chemotherapy. I won't go into that.
I just want to make sure that you realize what a traumatic event this is. Yes, i am very grateful to be alive and well and yes I wish someone would tell me there has been a big mistake. But you know once your body is altered it can't be put back together. No matter how great your implants are , your still not gonna feel anything there.
It just seems to me that some people think having your breast removed is not such a big deal. Well, it is a huge deal and the people involved in this fiasco oughta pay dearly for it.
Sorry this is so long but I had to get it off my chest (lol)
mona bLast edit by mona b RN on Jan 21, '03
Jan 21, '03What a wonderful post mona, thank you so much for sharing this with us. I don't think I took one single breath while I read that.
Jan 21, '03I was up set about the fact that the media was blaming the doctor. it was the labs fault. This could happen to anyone. It's unacceptable. I just have to wonder how many people really are very sick and thier labs come back normal.
Jan 21, '03OMG MONa... I'm crying and I can't stop! Thank you for sharing your story with us! I can't even imagine... I can't!
Jan 21, '03Mona I am so thankful that you posted your experience.... And even more greatful that your here with us. Words can not express how glad am I am that you shared that with us... It gives more insight on what it was like and how horrible it was , and could be. Im a surgical nurse and now Im glad I speak to each and every patient before and after the procedure and to their famlies.I try to make sure that some fear is atleast comforted because there is no way I could even touch the surface of the fear and anxiety. Once again Im so thankful you shared your story.
Jan 21, '03Thank you for sharing Mona...I hope this poor woman has someone kind enough to share with her & help her cope. I too am glad you're here with us today.
...and I can't even begin to imagine if you'd went through all of what you did, to be told it was a mistake. I'm not even sure there could be compensation for that.
Jan 21, '03Thank you all for your kind words and thoughts. I just thought that a little firsthand insight would bring around the human aspect of this whole mess.
Jan 21, '03My 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.
Jan 21, '03Mona, thank you for having the courage to share your experience. I will never forget what you've written.
Feb 2, '03I 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.