• RegMarMar's Avatar

    RegMarMar posted an update

    I was diagnosed in September 2009 on my 25th wedding anniversary with invasive ductal in sito. I had a fast growing tumor that was 2cm when I noticed it and went for a bipopsy. Six weeks later we were still waiting for all the tests to be done and all the results although the breast surgeon already had referred me to an oncologist saying I'd have to have chemo first because it was too big to operate on. It was 3 cm by then. I kept telling them it was growing by leaps and bounds...they kept telling me no it wasn't, I probably just had a hematoma from the biopsy...it was necessary to get all these tests and they understood my anxiety about getting started but I should understand these are slow growing tumors. Oncologist sent me for a PET scan as part of her tests. It showed three spots on my spine. Now I was stage IV and I hadn't even started treatment yet. I went to Sloan Kettering for a second opinion. They wanted a spinal biopsy and told me as a stage IV, they would only treat me paliatively. No chemo, no surgery, just Femara. I was 50 years old and otherwise completely healthy. I left there without having the spinal biopsy. My oncologist at home said she would treat me with Adrymiacin and Cytoxin. I had a complete response but wanted to have a mastectomy at that point. I was told no, there was no cancer in my breast and you can't operate on cancer that's not there. I felt uncomfortable with this and was very upset but didn't want to be one of those people who second guesses everything. I followed up by taking Femara and Zometa. Within 6 months I felt a lump right in the same spot. a PET scan showed 3 small tumors in my breast but nothing anywhere else, not even my spine. The breast surgeon agreed to a mastectomy then and I had a radical in September 2010. He said it went very well, I had clear margins, and only one lymph node involved although he took them all. I wanted to do chemo then to follow up, maybe Taxol since i hadn't used that yet. Oncologist said no, "we need to save that for when you really need it." She had thought the mastectomy was a pointless idea although she didn't actually say that. So I didn't have chemo following surgery. I began monthly shots of Faslodex and bimontly shots of Xgeva. Result: 1 yr later in September of 2011, I had tumors on my operation as well as a spot on my liver. Oncologist pretty much said I told you so and I went on Taxol in October. I tolerated it well and as of January 2012 PET showed NED. We continued the Taxol through last week anyway though because oncologist says we may as well since I'm tolerating it well. Last visit I asked her what's next....she didn't have a heck of a lot to say. I think she is thinking I should just keep doing Taxol until it doesn't work anymore. I asked about Tamoxifen and she said we could try it but since the aromatase inhibitors did not work for long, chances of the Tamoxifen working are slim. I get the distinct impression she just thinks I'm a goner and I'm in denial about it, which is not true. Or maybe she just has too many people who are really sick right now and thankfully I'm not one of them yet, so she's just maintaining the status quo with me until my condition worsens again. I'm not sure WHAT she's thinking for sure because I can't figure her out. All I know is that I had a fast-growing tumor that they took their time about, they gave me chemo with no surgery and then surgery with no chemo or radiation. They make me feel stupid for trying to be proactive and thorough in my treatment and for always asking if there's anything else I could be doing. It's not just this doctor or this group because SLOAN KETTERING was even worse! They were barely even going to treat me!! NOBODY has, to this day, said a word to me about nutrition and when I asked about the soy controversy, I was told to see a nutritionist on my own if I wanted to. Aside from a little neuropathy in my feet, I feel fine, I have a very active life, but I feel like I don't have a doctor that's thinking about me personally or who spends any time at all figuring out how to keep me alive as long as possible! And I don't know if it's unreasonable to expect to find one. I feel like I have a doctor who's expecting me to die sooner rather than later and that its only a matter of time until my cancer becomes unmanagable. That may be true but I feel like it's become a self-fulfilling prophecy from the start, the moment I was labeled Stage IV and it was "understood" that there was no point in treating me aggressively. I see all these commercials on TV with everyone running and walking and wearing pink....what's that all about?? I don't feel like any of it has done me any good. I went for my annual exams, I did self-exams, I went for mammograms when I was supposed to. None of it did me any good. I feel very let down by the medical community. So I'm just supposed to accept that the first serious health problem in my life is untreatable terminal cancer? I'm just screwed and that's that? Well, that sucks.
    By the way, I'm ER/PR positive. HER2 negative. I don't mean to sound so negative and angry. But I am today.