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New to this website with IBC
Hi everyone: I'm new to this site and wanted to share my story.
I am a two time breast cancer survivor. I was first diagnosed with Lobular In-site-tu carcinoma in March of 2001. The lump was less than 2 cm which I found myself after God had spoke to me at 8'oclock on a Monday morning to check myself right then and there. I had a lumpectomy, results came back that it was cancer. I went back in to surgery and had a partial mastectomy to make sure we had clear boarders. I had a port put in and did six months of CMF (chemo) and seven weeks of radiation. One year later I had a saline implant put in the breast for cosmetic reasons. Everything was great for four years.
This last Dec/05 I noticed within 2 to 5 days that my breast with the implant had started to change. My nipple inverted, I felt pulling and burning around the nipple area, My breast went hard as a rock and grew twice it's size.There was also a red rash appearance on the skin. My first thoughts were that the implant had calcified so I made an appointment with my Plastic Surgeon who specializes in reconstruction of Breast Cancer patients. (Keep in mind that I just had a mamagram in November/05, one month before my breast started to change).I made an appt that week and saw my Plastic Surgeons right hand Nurse Practioner and she palpated and stated that she felt that it was the implant that has hardened. My Doctor was in Seattle so she called him on the phone to discuss my situation. I asked her to ask him if I needed an MRI or an ultrasound. She said she was diffentently going to ask him those questions. He stated that he did not feel that it was necessary and that he wanted to see me. The next available appt was not until Jan 11/06. The nurse reassured me that it was not life threatening. Ha!
I met with him Jan 11th and he told me that he will take me into surgery and will remove the implant and replace it with a new one. Meanwhile, this growth is growing up my chest. I went into surgery to remove the implant Jan 29/06 and as soon as I woke up in recovery he was there telling me that it was not my implant that it was fine but that he replaced it anyway and that he wanted to see me in two weeks post-op. He also mentioned that he took a biopsy while he was in there and it came back negative for cancer. I say, "Praise God". At the two week post-op appointment, I asked him if it is not the implant that was causing this situation to occur than what is it? He again told me that it has to be my tissue calcifing, that I needed to go home and heal and he would see me in six months.
I was home for one week and I knew something was very wrong. I made an appt with my oncologist whom I have been seeing for regular check-ups for the last 5 years. He took one look at my breast and ordered an MRI and ultrasound with core biopsy.At this point after being mis-diagnosed the tumor was growing up my chest almost to my collar bone. The results came back, "Infiltrating ductal carcinoma". The tumor was 19.5 cm. It was like I just received a death sentence. I have never heard of any one having such a hugh tumor and it not metastisising to the rest of the body. I then was sent to have a PET scan done.
Since my husband is a Data Base Architech, he did his own research and found the website for IBC. My symptoms were that of IBC. My husband immediately put a call into the oncologist and he called back within an hour and stated that he was waiting for the PET Scan results to come back to see if the cancer had spread but that he also felt that it was IBC.
Within two weeks, I had a port surgically implanted and I started chemo CAT) right away. Apparently, from what I was told is that they do not give all three chemo's now a days at one time, but because my tumor was so big that they are aggressively treated it with full strength. The PET Scan came back
with results that the cancer had not spread to anywhere else in my body, that it was encapsulated within the tumor. I endured 5 1/2 months of chemo and we shrunk the tumor from 19.5cm to 6.5cm. I then went in and had my mastectomy and removal of 4 lymphs nodes on Aug 29th/06. Pathology report came back that the nodes were clear of cancer and the tumor had clear boarders. (It's a miracle).
It has been 8 weeks since my mastectomy and I am now just starting to get back to normal. My next decision is: Before I decide to do anymore treatment I am asking for another PET Scan to make sure all the cancer is gone.
My oncologist suggests that I go on Herceptin and taxatere (I may have spelt it wrong) for six months and then just do Herceptin for the next six months by itself.
I ran into a friend that I have not seen for five years. At 35 years old she had a mastectomy and one year later it came back and she had the other breast removed. She was put on Herceptin for one year and had previously been on Adramyicin. Which is the chemo drug along with Herceptin can damage your heart and lungs. She is 40 years old and has a pace maker and is on the waiting list for a donor heart. I'm not thinking it was a mistake that we saw each other this weekend.
I feel if the cancer is completely gone and herceptin attaches itself to cancer cells and either puts them into remission or shrinks them, if I don't have any cancer for it to attachs itself to then why wouldn't I continue to monitor my wellness and if it does come back then I have options. I'm not wanting to put myself through a year of chemo because my oncologist feels it could come back. Sure it can... It did and I did everything I was suppose to do.
Does anyone have any experience with what I am having to go through and make wise decisions. I'd appreciate any feed back.. Thanks a bunch.
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