PASC, Dx 1/19/09, New York
I am currently a survivor of Angiosarcoma of the blood vessels found in the breast. What is Angiosarcoma. Angiosarcoma is a rare and clinically highly variable cancer of blood vessels (a form of sarcoma). Angiosarcoma – cancerous tumors originating from blood vessels. In my case it was found in the breast.
First they told me it was nothing and no way was it cancer because cancer does not grow that fast…(bs) however because I didn’t have a history I didn’t freak out, well not at first. by June, when the lump was as big as my thumb folded, I got worried and took the steps to be seen by a breast surgeon. I was told because after all the test that were done (only the mammogram and ultrasound) I didn’t have a diagnosis so I would have to pay out of pocket $3,000.00 for a consultation. Mind you I have insurance and they would not pay for it. So…..I became frustrated, then I thought you know what maybe its nothing. Why am I tripping? Yeah, I know more (bs). November comes around and I am seeing my GYN doc..I show him the lump and he screamed at me for “waiting so long”. When I told him I attempted to use his doctors in June…and they turned me away because I did not have a diagnosis…he said call them right now they will not deny you..And you know what they didn’t. They, well the receptionist, said in a low voice..”have your GYN or your primary care physician write the referral for a MRI and we will see you. My brain was racing with all types of curse words and what not. I wanted to say to the same woman who said that because I didn’t have a diagnosis I couldn’t be seen without paying…NOW WHY DIDN’T YOU TELL ME THAT 6 MONTHS AGO WHEN I CALLED 8ITCH! (YEAH, YOU KNOW what that word is supposed to be.) Instead of using my GYN doc, I called the doctor that did not take the next step to make sure all was done in the first place, my Primary Doctor. When I got there, cause I didn’t call for an appointment, I walked in to the office and demanded to see my primary (primary was not there so I saw the doctor on call). The doctor on call saw me and gave me a referral for the breast surgeon, MRI Pre-op blood work, and asked if I needed anything else. He did this because he saw the lump and his eyes almost popped out of his head although he tried to maintain his cool, I read faces all day. So, he couldn’t hide it from me. He asked me if I wanted to switch doctors and I said yes and took him on as my doctor.
I go an have the MRI done and out of curiosity I asked to see it and I asked for a copy. Well I saw it and the lump itself lit up like a Christmas tree as well as 2 other lumps they were like golf balls. The other breast, the right one just looked like a tree with white lights….so many lumps……., but I said nothing. I took my copy home and attempted to revisit it again on my computer, like I knew what I was looking at.
So they give me a referral for this Dr. Fiath Menkin..I call her the Beast from Hell. I had one session with her and never came back. I went in her office for an exam of the breast because that is the first referral I got from the primary doctor. I was nervous as hell and she was professional up untill she said let me examine the breast and she began to feel and press, next thing I knew she was stabbing this needle no jamming this needle in the lump to “biopsy” it. I was in such a shock and in such pain that she had done that because I asked before I came for the appointment will I need a biopsy and I was told no. Imagine what I felt like doing to her. Yes she is the Beast from Hell….. I asked her what was she doing and she said its easier this way because its less if the patient gets stuck 2 times in stead of once, but it was all over by then. It was not something I agreed to. I had to have a mammogram the same day at the other surgeons office. I let them know about the beast from hell and ended up with a new breast surgeon.
Finally I see the breast surgeon and he asked to see the lump that was now the size of my elbow folded…yes, fold your elbow and look at it…If I lifted my nipple that lump stuck out to say hello. It did not hurt however due to a prior surgery for a heart condition which took away feeling in my nipple, I all of a sudden..since the lump stated growing..had feeling in my nipple. It felt good for the moment.. but that was short lived. He had me take more mammograms and ultrasounds because the MRI lit up like a Christmas tree, they were not seeing the same thing on the mammogram or the ultrasound. When that didn’t work he decided he would do the surgery.
The day comes Jan 16 and he removes the said Lump. He said it should only take 20 mins on the table surgery wise. I was on the table for 1 hour…I know because I asked… I knew then that something was not right. When I was in the recovery room he came to talk to me but said he would call me after the tests came back.
Wednesday he called me and asked if I wanted to come into the office and talk and I said no, he could talk to me on the phone. That’s when he said it was cancer and it was malignant. I heard charlie browns teacher talking the rest of the conversation…I sat on my bed and the wall started coming towards me…I knew I was going into shock so I said to him can you hold on a second. I took a deep breath and regained my self and said when can I come in to further discuss my options….I called my Lupus doctor right away and told him the results… He called me back several times over the next 20 minutes with steps to take and what to do. He gave me the connection to Sloan and the doctor, a personal friend of his. I asked if this was Lupus related and he said I’m sorry, its not. I did the research and went in and told that surgeon to cut the breast off. He referred me to a plastic surgeon, but after our discussion she said I would not be a good candidate for the flap because I didn’t have enough to flap and I couldn’t to implants because of the risk of the caner retruining and they not being able to see it. So NO reconstruction. I was sick to my stomach and wanted to throw up, but held my self so I wouldn’t. I didn’t cry…I wonder why….
On Feb 20th I had the bilattearl surgery, On Feb 7th I met Dr. Maki he knew about the pending surgery and asked that I have the samples sent to him after. I saw him again in April and we discussed radiation and chemo. He sent me to the radiologist to discuss radiation and she said because of my lupus I would not be a good candidate for radiation. I was thinking no way can I have radiation I would fry like a french fry because of the lupus so I’m glad she said no. Oh I had done my research before our date on Lupus and radiation. Not a great combination. She agreed that I would fry like a french fry so it was decided that I would do chemo only.
On April 10 I was scheduled for my first Chemo..I did not a port, nor was I prepared for the chemo. See they are supposed to do a EKG if they are giving you Doxi…(I did the research) because it causes cardiac arrest… Well they hadn’t. I mentioned this to the oncologist and he said I’m sorry I thought all of that was taken care of already, we will postpone it till next week in the mean time go up stairs and have the EKG done. I did that and went home without Chemo.
The following week I went in to do the chemo. That was a NIGHTMARE. I almost died from the Taxol… Yes right there in the chair. See I did my homework on the chemo and found out that Taxol is plant based so I was good mentally with that one but physically my body was not. The Doxi I knew I needed a clean bill of health for this man made chemo. Well woa and behold I was deathly allergic to the “plant based” chemo. Soooo sucks for me…. I vowed on that day to never go to chemo alone. I had someone with me every session after that. They didn’t put the port in till April 25th. My chemo regimine was 1 time a week for 3 weeks and the 4th week I would be off for 8 months. I did it for one month on just the Doxi. They had to add another chemo to kill this cancer cells so they added….get this…”the cousin to Taxol” called paxitaxol…. well it didn’t kill me, just did the normal stuff like no hair…
I kept my oncologist up to date on my changes and if need be they adjusted the chemo. Keep in mind I have lupus which has been fairly quiet for most of my life and we needed to pay attention to that so I didn’t have a flare up. The flare up could go either way and I rather it be the NAY WAY….. I was done with chemo in 5 months because the scans came back clear. So far they are still clear. I had a flare up of the Lupus, but I am handling that well with roids and Lupus medication.
I did not have breast cancer prior and I never received radiation. They say the cause of this cancer is over exposure to radiation or vinyl chloride. I don’t meet either of the criteria. I have had bilateral mastectomies because I choose to survive. that was the only option. I also have LUPUS SLE & DLE. Understanding lupus, a complicated disease, because the body attacks itself (it’s retarded) is a job. just like the Angiosarcoma, u don’t know what it will attack next or start breaking down. I created this page for you and I. Sometimes I felt like I was the only one in the world with this. But I know now that I am not… I am however a fighter. I fight to survive.
When you do your research you will find many different Angiosarcomas and many discouraging diagnosis. Don’t give up. I didn’t.