March 28, 2005
Inflammatory Breast Cancer - A Husband's Tale
I couldn't agree more with the article about inflammatory breast cancer. I think we need to do more to educate the public and (more so) the medical professionals. And like the lady that wrote the article. I learned the hard way.
Let me tell you a nightmare of story you will not believe. I know most inflammatory breast cancer don't have a tumor. In my wife's case it did.
On March 15, 2001 we had went to bed. I put my arm around her and told her to turn over and kiss me good night. As I did I pulled her towards me. I said honey, was that a cyst or tumor I felt or your breast. She said she thought she had felt one yesterday when taking a shower but wasn't sure. After checking it closer I knew it was. It was so small it was very hard to find. It didn't seem to bother her but it scared me from the beginning. It wasn't any bigger then the end of a pencil eraser but it seemed like it had roots. She had tumors all over her and they didn't scare me either but this one did.
I got up to do a little research to try to prove to myself it was nothing. The more I read the more I realized I was not going to get the answer I was hoping for. Everything pointed to cancer.
Even though I could from one day to the next it had spread more then the day before she had to show the first doctor she went to where it was because he couldn't find it. They did a mammogram and an ultra-sound on (April 5, 2001). They did a biopsy on (April 9, 2001). By then the skin on her breast had thickened half-way up the outside of her breast.
I had read just a small amount about inflammatory breast cancer. She did have most of the symptoms. It was spreading at speed that was hard to believe. The skin felt like an orange peeling. She had complained of her breast itching before we even found the tumor. The one thing she didn't have was any kind of redness or anything that looked like a rash. I did think you had to have that. So I asked the doctor could it be inflammatory. He said no, that if it was inflammatory she wouldn't have the tumor. When I got a copy of pathologist report it had nothing on it about being inflammatory. Her bloom Bloom-Richardson score ( which is a test to see how fast cancer was spreading) was a 9, which is the worst it could be. I just figured that was why it spread so fast.
They did a mastectomy on ( April 19, 2001). By then it had done spread up and connected to a benign tumor right at her nipple. It was in 26 of 29 axillary lymph nodes and 6 of 8 upper lymph nodes ( total 32 of 37 Lymph Nodes). To this day I haven't heard of anything close to that many lymph nodes being positive or being removed.
I knew when they did the scans and x-rays it had to be spread all through her body.
When we meet with the medical oncologist on (May 9, 2001) for consultation, he said the radiologist said it wasn't spread anywhere in her body that he could find. I didn't know how but I was a very happy person. She started her chemo on (May 23, 2001) and finished it on (Oct 17, 2001).
We first met the radiation oncologist with all the x-rays and and mammograms on ( Oct 22, 2001). She started radiation treatments on (Oct. 31, 2001) and finished them on (Dec. 18, 2001). She was also suppose to have an appointment with the medical oncologist that day.
Sometime right before she finished her radiation treatments I got out the written reports of her x-rays and mammograms to look over them. I was about to fall off my chair when I seen the one had wrote on it (uterus appears normal). The reason is she never had a uterus. She had a hysterectomy 20 years earlier. How in the world can a radiologist find cancer when he is seeing body parts that don't exist?
I told her when she went in to see (medical oncologist) to take the x-rays with her. I thought there might be something there that shouldn't be, (like cancer). Do you think he was concerned. No, he never offered to look at them or get them reread. He said she needed to look up the surgeon that operated on her 20 years ago and ask him what he did take out. That made my blood boil. I didn't think it was funny then and I still don't think it is funny. I tried to get her to change doctors that day but she refused. She said all she had to do now was go in for check ups and there was no need to change doctors. The x-rays got reread when I took them to the surgeon 4 months later and told him I wanted an answer.
She was told she was cancer free and returned to work on (Jan 22, 2002). I knew this was her best shot. If it returned I knew she wouldn't have much of a chance. I read any and everything I could about cancer hoping they would come up with something new.
She went to the radiation oncologist on ( March 22, 2002) for a check up and everything seemed fine.
She went to the medical oncologist on (April 18, 2002) for another check up and everything still seemed fine.
She went to see her surgeon on (April 19,2002) for a check up and to get a mammogram. This is the day I took x-rays back in and got them reread. The radiologist said there was no uterus. Mammogram came back negative. She even talked to her surgeon about where to go to get reconstructive surgery. I talked her out of that. I thought it was way to early and right now we just needed to be concerned with the cancer if it came back.
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