And speaking of good news here's the details from today with a little bit of older, other opinions mixed in. However, before I begin, remember this cancer is not straightforward. I'm not sure any cancer is really straight forward, I mean they all suck but having two different types of primary cancers in an organ as small as an appendix and having one of those being very rare and difficult to treat has been quite a whirlwind. I am just starting to feel confident in my understanding of these two different diseases.
Today started off early with an MRI of my abdomen and pelvis, with and without contrast. The MRI itself wasn't bad, it was the feeling of contrast rushing into my veins that made me uncomfortable. Anyway we had about an hour to run and grab breakfast and then we had our appointment with Holly and Dr. Loggie. We spoke with Holly for a while, going over basic health information and also about what had happened from the beginning up until now. She seemed very optimist with my case. Dr. Loggie came in next. Most of the conversation was VERY high science but here are the highlights:
-I do not have PMP. (this has caused a great deal of confusion for us. These tumors rupture the appendix seeding the abdomen with cancer cells which grow and change and cause very bad things... also know as PMP) I have a chance of developing PMP but I currently do not have it.
- This means I am cancer free. My scans are perfectly healthy, my blood work is normal, I feel great and there is literally no signs of cancer. I'm not sure if that means I'm in remission or what the correct term is but I'm going to go with cancer free.
- This bullet point is very difficult to explain but I'm going to do my best. With mucinous neoplasms there is a very wide spectrum of pathology ranging from very low grade to super scary high grade. I am on the lowest side of the spectrum and it seems it was caught early due to the carcinoid. NOTE: the pathology and cells can mutate and change at any given time. This is unlikely to happen in my case but not out of the question. The way Dr. Loggie explained it to me is that patients in my exact situation have a 25% chance of reoccurrence, aka the cancer reoccurring and invasive treatment being necessary. He had scientific information to back up this information. This means that 75% of patients with a low grade mucinous neoplasm with rupture but with acellular mucin and no cancer cells being found in the pathology of the mucin taken from the abdomen may never have a reoccurrence. He also agreed with Dr. Bartlett and Dr. Sardi that if I am monitored closely with scans and bloodwork that it is highly unlikely that if this should return it would be found at an inoperable state.
- He did an exam and found nothing alarming or abnormal which is reassuring because there is an area in my scar that has knotted up and he put my mind at ease that it is just part of the scar healing.
-Future testing- I will have MRI in 6 months. I need to choose who I want to follow me. If it is Dr. Loggie I will have to fly to Nebraska for all future testing. He works directly with a specially trained radiologist when reading the scans and I get the results immediately. I can also get the MRI in Tampa and send them to Dr Bartlett or I can continue to get CAT scans and send those to Dr. Sardi or Dr. Sugarbaker. But CAT scans have a lot of radiation and I am only 32 so ideally I would like to stick with MRIs. I will need a scan every 6 months for a while and eventually we will move to once a year An exploratory LAP is a strong possibility sometime between 12 and 18 months from diagnosis. The thought behind this is that if a cancerous cells escaped some kind of growth would be visible at that time. This is a bit more invasive that a traditional LAP surgery but not nearly as bad as what I had done in December. He was impressed with how long my incision is.
-Carcinoid.... oh ya, that thing. This situation is in my mind but not nearly as much as the mucinous tumor. Don't get me wrong, I know the carcinoid could come back but I feel confident in my Dr.'s in Tampa and what my surgeon in Tampa said about it not coming back. However, Both Dr. Loggie and Dr. Sardi mentioned that a carcinoid cell could have leaked out too meaning the carcinoid could reoccur inside of my peritoneal cavity. This only adds to the need of close monitoring.
What I take from all of this. I clearly could still have a lot to worry about. There is a 25% chance I could have a reoccurrence and I am dealing with two different types of cancer not coming back. BUT, couldn't we all live with worry about disease and other things that could cause us harm. I wouldn't advise anyone to worry about getting cancer or diabetes, having a heart attack or getting struck by lightning. These are things that we have limited control over. Yes I am at an increased risk of having cancer again but to spend my life worrying about that is just exhausting. It will take a lot of work and I'm sure I'll have moments of anxiety but I choose to live a full life. I choose to live a healthy life. Our health isn't as simple as an annual physical and a jog every once in a while. Our body and mind need total and complete health. This means what we put in our body, on our body, in our thoughts and also exercise, family and friends.
Thank you again for the prayers and support. I am a lucky duck.
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