I had rectal bleeding around June 26 and went into the hospital because it was a scary amount of blood. Had a CT scan done and they determined that it was a mass and did a colonoscopy, got a biopsy, sent it out and it's cancer. I've learned about the expected treatments (28 days of 5 FU + Radiation which will be done locally), six weeks of rest, surgery (Brighams and Womens in Boston), rest, then Chemo and had an MRI which shows stage 3A. I've had consults with the local oncologist, local radiologist, Dana Farber oncologist, Dana Farber radiologist and B&W Surgeon. So I'm more or less prepared to start. The tough part has been the waiting as it takes time to schedule services.
The hospitals in Boston are relatively difficult to get started with - it is hard to get hold of someone to get back to you and it's hard to call as you leave a message and someone calls you back and you go around again if you're not near your phone when they call. Once you become a known patient, the process is easier.
I have had the tumor prolapse from time to time and there's often a lot of blood when this happens. This morning, though, it prolapsed and wouldn't go back in and was bleeding a lot. I've indicated to my providers that the size of the mass is becoming a problem. I was considering going into the emergency room this morning for all of the blood loss but I managed to manually push the tumor back in. I have an appointment with the oncologist at lunchtime and will discuss this. I did ask the surgeon about cutting out part of the tumor to make life easier but she indicated that they generally don't do this as it will grow right back. I understood this - I was just trying to get some relief and avoid something like this happening again.
I've also been eating less because of worry about the size of the tumor and have had trouble sleeping because of the emotional aspects of cancer.
I've read that the tumor shrinks quite a bit when exposed to radiation and I'm quite looking forward to that though the effects of chemo and radiation are scary. I've read that many do fine with it and continue working through it (which I plan to do but we'll see). I've also read that chemo can spread cancer in a recent article - it doesn't spread it itself but the mechanism may make it more likely to spread. I hope that this isn't the case for me.
A bit of background on me: 58 years male, I was heavy in my 40s at 245 pounds but am down to about 180 now and got as low as 170 a few years ago. I like to run (ran 1,500+ miles a few years ago), lift, do yoga, stretching and a few other things. I have had a very stressful life - our son had a major illness a decade ago and it took a lot out of me. I have a very stressful job and food was a stress-reliever. If I didn't have cancer, most would consider me quite healthy. But my oncologist told me that the major risk factor for colorectal cancer is turning 50. Yes, I should have had colonoscopies at 50 and I would likely not be going through this but I previously hadn't used hospital services for forty years.
The surgeon explained potential loss of function - it might be a permanent bag or not. The cancer is in one of the muscles on the side - if it's too far in, then permanent bag, otherwise maybe not. She wants an MRI after the chemo/radiation. She can then tell if there isn't enough room to avoid the bag from the MRI. But, she might also make that determination once she gets in. So I will wake up with one or the other. At this point, I'm more or less in acceptance mode as it feels like just surviving would be some success.
My wife and kids aren't ready to see me go though I'm working on preparing things so that they are relatively comfortable if I'm not still around. Everyone tells me that I'll get through this and I've had offers of support from friends and family that I didn't expect. I've seen the technological progress on the war on cancer and intellectually understand that surviving five or ten years could bring cures or vaccines to various kinds of cancer. I'd love it if there were targeted treatments for colorectal cancer but these seem to be developed for other kinds of cancer that are difficult to treat like Lung Cancer.
I'm planning on getting a genomic analysis of the tumor at Mass General Hospital. A pathologist recommend a Micro Satellite Instability test and they'd be able to do a full analysis to see if there are any targeted treatments that would be more effective than the standard regimen. I'm not particularly hopeful that there is and I don't know if my insurance would cover it anyways. Some of these targeted drugs are quite expensive compared to 5FU. I'm curious if anyone else here has had the genomic testing done. The tumor biopsy is at a local hospital and I have to figure out how to get it to Mass General.
One of the frustrating things that my oncologist keeps saying is that it will take a week to get the Xeloda because it has to come by mail order. I assume that the insurance company requires this to get better prices but I see that I can get 84x500mg at Costco for about $1,000 with a coupon and no insurance. I suspect that I could cover the difference or just pay retail for a week of pills and they can mail-order the rest. I plan to ask the oncologist about doing this at my appointment today. I am also eager to get the Radiology prep work done. They put two small tattoos on you to set alignment points for the radiation machine.
I am also trying to scope out costs for the oncologist to manage the chemo (I assume that I go there once a week) and also the radiation center (daily). My maximum out-of-pocket is $2,000 and I'm at $1,400 right now. I don't know whether or not maximum out-of-pocket includes the oncology and radiology visits. I would assume that both have $35 copays and 28 radiology visits at $35 each would work out to about $1,000 which I could manage. Maybe another couple of hundred for the oncology visits. I suppose that I shouldn't be thinking so much about the costs right now but I like to have a rough idea on expenses going forward six months. I imagine that people are all over the place on insurance coverage and costs for services.
I did visit Dana Farber Cancer Institute in Boston and the things that struck me were the size of the place and the amount of volume that they do. It explains why they are initially difficult to get in touch with. When I went there for the consults, I went into the GI area and they redirected me to intake. They had a lot of people there to do your intake paperwork and explanations. Then back to GI for my appointment. There were probably 30 people in the waiting room for GI. I was there quite early and they called me in the first time and that was to take temperature, weight, height, blood pressure, heartrate and O2. Then I was released and went back to the waiting room. Then I was called and a grad student asked me some questions and then requested consent to being part of research studies. I said sure and she said that they might want to get blood samples when I'm there in the future.
Then back to the waiting room, get called in and I think that it was an intern that asked me a bunch of questions. He left the room for a while to talk to the doctor and then he and the doctor came back to talk to me. This was the standard approach for my consults at Dana Farber Cancer Institute and Brigham and Womens Hospital. BTW, if you do consider DFCI for your hospital, you should know that they do the outpatient stuff and that they use Brigham and Womens for in-patient stuff. So you often see the names together in rankings. I was originally going to do everything locally here but friends and relatives suggested I get second opinions from the Boston hospitals with Dana Farber, Mass General Hospital and Brigham and Womens as the top places. I would say that the doctors in Boston were more knowledgeable about various things than the local doctors as they see far more of their particular specialties. They indicated that chemo/radiation would be fine done locally. It would be rather impractical to go into Boston every day for radiation is it would cost me three or more hours in traffic daily.
I'm the kind of person that likes to track things. I've tracked calories for about ten years and I've kept a health diary. I also started a cancer diary when I was diagnosed and this thing is helpful. It has all of my contact information making it easy to pass them on to care providers and for me to call people and it allows me to answer questions easily that care providers ask. I've also taken some pictures that are sometimes illustrative. The one that I've shown the most is a toilet full of blood from the initial event that prompted my visit to the Emergency Room.
I told my manager when I found out so that she knows my condition and she's been very supportive. Another co-worker had cancer last year and it was a type of cancer where he had to take short-term disability. He tipped over from short-term to long-term and lost his benefits and had to sign up for COBRA at a time when it was difficult for him to figure all of this stuff out. He did come back shortly thereafter but was nice enough to tell us about this potential situation for disability in general. So I'm basically going to try to work through the treatments as best as I can or use up sick time, and vacation time ahead of short-term disability. I suspect that I won't be able to work through the surgery recovery but that's supposed to be only 4-5 days. I might be able to work through the longer recovery (6 weeks), as long as I can sit up in front of a computer and not be in a ton of pain.
The radiologist told me about a cancer support group at our local YMCA though I lost the literature on it.
So that's a fair amount about my situation and you can probably tell that I like to write.
I guess my questions for those with experience are:
- How do you deal with the mass getting bigger while waiting to start treatment?
- Have others had a prolapse of the mass?
- How bad can the financial stuff be with copays, deductibles, out-of-pocket maximums? I think that either the local oncologist or radiologist said something about people getting treatment until they ran out of money for it (sounds horrible to think about)
- Do folks here use local support groups? I was considering trying to find our local group and attending a session.
Please feel free to ask me questions and offer advice as I'm sure that I still have a lot to learn and I'd rather learn stuff these days from others instead of learning the hard way.