Sorry for the delay in letting everyone know what we found out in Tucson. We had to stay overnight for testing. I'm also including a lot of medical information because I know some of you who read my blog have dealt with cancer yourselves.
Ok, everyone. If you're not sitting down yet, sit down now before reading on. Tucson went wonderfully! Both of the doctors we saw said they were completely sure I do NOT have inflammatory breast cancer! I do have locally advanced breast cancer which just means that the cancer from the breast has spread to the local lymph nodes. You can't even imagine the shock Pam, Joe, and I felt as we sat listening to the doctors!
The first doctor we met with was the surgical oncologist, Dr. Lang. She is the one my sister found out about on the Internet. She did a year fellowship at the Inflammatory Breast Cancer Center at M.D. Anderson in Houston. This center deals with IBC patients from all over the United States and the world. They've been open since 2006 and have seen over 200 IBC patients. She saw a lot of IBC during her time there and she says that is definitely not what I have. When we saw Dr. Livingston, the medical oncologist in the afternoon, he said he definitely agreed.
So, how did the Mayo clinic give me the wrong diagnosis? That was a big question that came right away into our minds. They said my tumor is large, encompassing a lot of the breast,so especially before I had any chemo, the margins may have been hard for them to feel. Also, because it is large, it blocks circulation throughout the lymph system creating the swelling and breast enlargement that are typical of IBC. They also said because IBC is so rare, that doctors just don't see it very often and aren't familiar with it.
Ok, here's more good news. The five year survival rate for locally advanced cancer is as high as 75%!!! That's about double the 30 to 40% survival rate for IBC!!!
I should be singing and dancing around, but I think I'm still in shock. And, exhausted from two days of seeing doctors, being poked with needles, and having tests done.
Dr. Lang is amazing! She is in her young thirties. She is passionate about treating patients with IBC and advanced breast cancer. She spent over two hours with us the first day, doing her exam, explaining everything, and patiently answering all of our questions. She then came in at the end of our appointment with Dr. Livingston for about twenty to thirty more minutes, so they could talk with us together about what they'd talked about and my treatment plan. Then, today, she came back to the cancer center from the hospital between two surgeries so she could do a needle core biopsy. This is the same kind of biopsy I had done at the Mayo Clinic, but she and Dr. Livingston wanted to do another just to double check the results. The pathologist tests the cancer cells for things like estrogen and progesterone hormone responsiveness and a test called Her2. My initial biopsy said I was negative for all three of these. If I were positive, there are hormone therapies and a drug called Herceptin that would be used in my treatment. Being, triple negative means they can only treat me with chemotherapy. So, they just wanted to be absolutely positive before deciding what chemo drugs they will use.
Dr. Livingston, the medical oncologist, talked to us about what chemotherapy he has in mind assuming for now that my results will be the same. They are two cutting edge drugs called Abraxane and Avastin. The Abraxane is in the same family of drugs as the Taxotere Dr. Polowy added to my regimen four weeks ago, but the Taxotere is attached to some kind of solvent to get it into your tissues and has side effects related to that. One being that they have to give you steroids, which have their own set of side effects, to prevent allergic reactions. The Abraxane is attached to a protein called albumin and so has less side effects and you don't have to have steroids with it. The Avastin is a drug that I think has only recently been approved for Her2 negative breast cancer patients and does something with blood vessel growth. I still have to research these more. I would get both of these once a week. What's a bit amazing to me is I had asked Dr. Polowy about once a week Taxotere because I had read about a study done that showed it was more effective than every two to three weeks and he said no, that was only for patients who had metastasis. I had also asked his nurse, he had left the room already, about Abraxane, and she said no they only used that as a second line drug. Dr. Lang told us Dr. Livingston is well known all over the United States and I felt so confident in what he was saying. He is an older gentleman who has been a medical oncologist for almost fifty years and he is still working on research and being at the forefront of breast cancer treatment. He was very kind and really seemed interested in me and what my thoughts and feelings were.
Today, I had a CT scan with contrast to again rule out metastasis and again, it was negative! It didn't even show any axillary or other lymph nodes. This doesn't mean the cancer isn't in the lymph nodes and both Dr. Lang and Dr. Livingston think it probably is, but at least it's not so overwhelming that it's showing up on the scans I've had done. We'll only definitely know once they've removed the lymph nodes during surgery and we get a pathology report. Hopefully by that time, even if there was cancer in them, it would have been eradicated by the chemotherapy.
Both doctors said we have a good chance of curing this. Dr. Lang said we have a big fight ahead of us, but the outlook is much more positive than if I did have IBC and Dr. Livingston said he is optimistic.
I go back next Friday for an ultrasound of my axilla (underarm). So far, nothing has show up on any of the tests they've done. The doctors think it has something to do with my lymph system and with the tumor and swelling putting pressure on the blood vessels. If they see lymph nodes when they do the scan, they will do a fine needle aspiration. I didn't ask, but I think this would enable them to do pathology for cancer cells. I will be getting a port put in which is a kind of permanent intravenous line so I don't have to keep getting stuck with needles all the time. And, I should be ready to start my new chemo regimen by the end of the month.
So, the three of us are exhausted! Between the emotions of moving Joey up to NAU, waiting to go to Tucson, going and hearing all the unbelievable news, and having all the testing done, it's been a long week. But, we are all so excited and feel that everyone's thoughts and prayers have helped lead us to the doctors that are going to be able to help us beat this. The doctors said if I respond well to the chemo and they can do the mastectomy and get what they call clean margins, I will be cured! The new key words we live for now are complete pathological response; a fancy way of saying cured. This is so much better than no evidence of disease which means we think we got it all for now, but it will probably show up again somewhere else in the future!
Sorry for going on and on. Our minds and emotions are just whirling!
Love you all tons!
Till next time,