Awhile ago I had a weird dream. I had this itch and a sharp pain coming from the left side of my groin. I don't remember any other details, except that these sensations turned out to be originating from a huge bloody spider bite on the area.
Waking up a little frazzled, out of curiosity or instinct I put my hand on the area to feel the imaginary bite. Instead I found an enlarged lymph node. I was a little taken back, especially after I felt several more nodes along the inguinal chain. What the hell? Why had I not noticed these before? There were none I could feel on the right side, but there had been metastases in those nodes and some had been removed. Did this mean that my cancer is back and this time spread to the left lymph nodes? Shit! Now what?!?
All these thoughts swirled around in my head, but I kept focusing on one thing- that eerie dream. Was this just a coincidence, or was that dream a sign to lead me to discover these lumps? Fate may have guided my diagnosis before- I believe that I was meant to go to nursing school to be conveniently surrounded by medical professionals, AND to be studying women's reproductive health at the time of my diagnosis. Without that knowledge and community support, I don't know if I would have recognized cancer's red flags, nor investigated the cause of my symptoms. I'm also pretty sure that I would have put off going to the doctor for a long time.
Luckily, I had that appointment with my new oncologist within the next few days. I didn't mention the dream, but I quickly pointed out the nodes during my visit. The doc told me his hesitations about routine PET scans, but agreed that an exception should be made to check out these lumps. I didn't want my family to worry, so I waited for the results of the scan before I wrote in this blog or told anyone about the dream or my concerns about recurrence.
Thankfully, my PET scan was normal, and the lymph nodes were unremarkable. Yay! No more cancer. In fact, I am officially in remission. It's been 3 years since my last recurrence. Doc says to come back in 4 months for a check up. This may have been my last PET scan for awhile. Thank god, a day without carbs is hell!
November 6, 2013
October 11, 2013
My New Onc Doc
Yesterday I had my first visit with my new doctor. He was a likeable enough, but I didn't like a few things he told me. He said that Dr. Rivkin did things a little bit different- something which was evident from the first time I met him. First of all, he doesn't order routine PET scans. He quoted research that found that they didn't improve survival in the long run. That could be true, but I do think that the results can determine that treatment plan. If a scan located an isolated tumor within my uterus, wouldn't the better treatment be surgery to remove the tumor, rather than start a new round of generalized chemotherapy? Why cause unnecessary damage to the rest of my body? I also think that it's important to have peace of mind knowing that I had a clean scan. In any case, he ordered one...this time.
When I mentioned the PET, he also asked how I paid for the last ones. I told him that my insurance paid initially, and charity care covered the rest. By questioning my finances, does this mean that he will possibly withhold expensive treatments in the future? On my very first visit, Dr. Rivkin told me that money would never be a reason to forgo needed treatments. I definitely need to advocate for myself if this becomes an issue.
Finally, he questioned Dr. Rivkin's use of Avastin. He said that using that drug isn't normally done. I told him that other chemo regimen didn't work, and that I switched doctors because I didn't want to restart a cycle with a similar drug. At the first appointment Dr. Rivkin was pushing for me to start Avastin. This doctor didn't seem convinced, which is a bit concerning. Avastin is a legitimate treatment option for ovarian cancer- it just isn't indicated or recommended by the FDA for my type of cancer. It seems like this doctor's decision-making is only based on statistics and FDA standards of care. The recommended treatments work in theory, but not all cases are the same. My cancer has behaved differently in every way, and so the treatment standards no longer apply. With a recurrence it's time to bring out the big guns, regardless of whether they are cost effective or result in only a small reduction in mortality. I want someone who will fight for me and find me the most promising treatments out there. If he won't then I'm going to find someone who will.
I left my appointment clearly missing Dr. Rivkin. I believe that it was his patience and dedication towards my case that perhaps saved my life. I hope he's enjoying his retirement, because he sure earned it :)
When I mentioned the PET, he also asked how I paid for the last ones. I told him that my insurance paid initially, and charity care covered the rest. By questioning my finances, does this mean that he will possibly withhold expensive treatments in the future? On my very first visit, Dr. Rivkin told me that money would never be a reason to forgo needed treatments. I definitely need to advocate for myself if this becomes an issue.
Finally, he questioned Dr. Rivkin's use of Avastin. He said that using that drug isn't normally done. I told him that other chemo regimen didn't work, and that I switched doctors because I didn't want to restart a cycle with a similar drug. At the first appointment Dr. Rivkin was pushing for me to start Avastin. This doctor didn't seem convinced, which is a bit concerning. Avastin is a legitimate treatment option for ovarian cancer- it just isn't indicated or recommended by the FDA for my type of cancer. It seems like this doctor's decision-making is only based on statistics and FDA standards of care. The recommended treatments work in theory, but not all cases are the same. My cancer has behaved differently in every way, and so the treatment standards no longer apply. With a recurrence it's time to bring out the big guns, regardless of whether they are cost effective or result in only a small reduction in mortality. I want someone who will fight for me and find me the most promising treatments out there. If he won't then I'm going to find someone who will.
I left my appointment clearly missing Dr. Rivkin. I believe that it was his patience and dedication towards my case that perhaps saved my life. I hope he's enjoying his retirement, because he sure earned it :)
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