About a week later she told me she had a stiff neck for 2 or 3 days
. I ask her where. It was on the same side she had the breast cancer. I told her we had to get her to the doctor. I knew from seeing how fast the cancer spread before we couldn't waste a second. She said I just worried to much. That she didn't need to go to the doctor because she was just their a few days ago
I finally got her to go on (May 6, 2002). Now, besides having a stiff neck she was starting to get some pain in her arm. The oncologist give me the impression I must be crazy to think cancer would come back 6 months after chemo and 4 months after radiation right in the area where they had given the radiation. He said he could feel something in her neck but he didn't think it was lymph nodes. He said he thought she had pulled a muscle and had her wearing a neck brace. I thought this was crazy to begin with. Again I tried to get her to go see the radiation oncologist and again she refused. She said the medical oncologist had assured her if he didn't do any more then take her temperature he would tell the radiation oncologist about it and he did say that, but by now I didn't have to much faith in anything he said.
The stiff neck wouldn't go away and the pain in her arm keep getting worse. She went back to the doctor (May 23, 2002) and told him the neck brace wasn't helping anything. Again he felt around on her neck and said he still didn't think it had anything to do with cancer but to just be sure he would set it up for her neck to be scanned. That was done on (May 29, 2002). She called his office a few days later to get the report. They said no cancer showed up. She had a simple goiter and needed to go see her surgeon.
We went and saw her surgeon on (June 5,2002). He asked her what was going on. She said she was kind of worried about the cancer but they said ( the x-rays) said all she had was a simple goiter. He said he didn't need an x-ray to see she had a goiter but the goiter was on the left side and not the right. The radiologist that had wrote this written report (I guess) doesn't know his right from his left. By the way this is the same one that reread the x-rays and said she did not have a uterus. So was there something their that shouldn't have been. I have no ideal.
The surgeon felt on her neck and could tell her lymph nodes were swollen. He to said he didn't think it was cancer too. He sent her in to get a chest x-ray and a bone scan.
We came back in to see him on (June 17,2002). He asked her if she would like to have some good news. That the bone scan and chest x-ray were negative. He told me he was now 96% sure it wasn't caner but the only way to know for sure was do a biopsy. Hey, that is what I had been trying to get done for 7 weeks now.
They did the biopsy on lymph nodes on (June 20, 2002). When I talked to him after the biopsy he said it was hard to get out. Before he had told me it would just take about 15 minutes. It probably took a couple hours. I said it is cancer isn't it. He said we will have to wait on pathologist report to be sure but I knew it was and now he knew it was too.
We went back in on (June 26, 2002) and he verified what I already knew. I said with her bloom Bloom-Richardson score a 9 she has got the fastest growing breast cancer she could have, doesn't she. He first said yes, then he said no, that inflammatory was the fasting growing and hers wasn't inflammatory.
Just a few days later her whole chest wall turned red. I again starting thinking about it being inflammatory but since the surgeon had said it wasn't and the pathology report had nothing about it I just figured I was wrong.
We had set up an appointment with a different medical oncologist for (July 2, 2002). He took one look at her red chest wall and said, oh my, this is recurring inflammatory breast cancer. This means she should have got chemo before mastectomy and she didn't.
They set her up to get weekly chemo. He said we might talk to the radiation oncologist and see if he could give her any more radiation.
When we went in to see him (on July 3, 2002) my wife asked him if the first medical oncologist that she went to had been keeping him informed of what was going on. He said the last report he got from him was that she had a mammogram on (April 19,2002) and everything looked good.
Remember he assured her he would tell the other doctor if he didn't do anything but take her temperature.
The oncologist told me you didn't usually do radiation in the same place twice but we were going to have to try something because she was quickly losing the use of her harm. He also couldn't understand how cancer could show up in the very place they had finished doing radiation on just 4 months ago.
They set her up to do one half of a treatment in the morning and one half in the evening, first to her neck and then to her chest wall. It seemed to work well.
He sent her to get some more x-rays in her spine. This time they found cancer in 2 different places in her spine. Why they can find it in you spine and couldn't find it right up the side of her neck when she had swollen lymph nodes is something I will never understand.
Well they were finding body parts that weren't there and didn't know their right from their left so I guess I shouldn't have expected much more.
In spite of getting weekly chemo and and daily radiation our family and friends spent thanksgiving day of 2002 gasping for her last breath. She died at about 2: 30 am on the morning of (November 29, 2002).
After she passed away I got in contact with the pathologist and ask her why they couldn't determine it was inflammatory when they did biopsy. She said they would have to have sent a sample of skin and all they sent was the tumor. I later talked to a different surgeon and he told me they should have been able to with what they had. Who is lying. I have no ideal.
I then told her when they done the mastectomy she had the whole breast to look at. Did they determine it then. She said, "No". She didn't have an answer why. She asked me how I knew it was inflammatory. I told her when the cancer came back I took her to a different oncologist. He took one look at her red chest wall and told me it was inflammatory. I told her I had the papers here to prove it if she wanted to see them.
I could tell you a lot more about this nightmare but I think you get the ideal. It has now been over 2 years since she passed away and it still hurts every day.
We need to better educate the public and even more so the medical field about this rare but deadly breast cancer. I don't know how though. Most people I try and talk to just don't want to hear it. I think everyone has the opinion if I don't talk about cancer it will never happen to me. I must admit before my wife got breast cancer I was about the same way. But they are wrong. Someday they might be dead wrong. I have started trying to write a book about my wife's 20 month ordeal with breast cancer but to be honest I don't know if anyone would read it. I do think when they are putting out these little books in doctors office they could put inflammatory breast cancer in them. One other rare form of breast cancer no one knows about and needs to is Pagets cancer that starts in the nipple.
I would say if you ask 100 people about either one of them you would be lucky to find one person who did.
Thanks, Roger Gardner
选择“Disable on www.wenxuecity.com”
选择“don't run on pages on this domain”
