So sorry that you had to join, but welcome.
Foreveryoung wrote:My GI doctor told me to get a CT scan of my pelvis area. Then my oncologist had me get a CT scan of my chest area in addition to an MRI of the pelvis. All with and without contrast. I am on a high deductible insurance plan, and those three tests cost me over $1000 in out of pocket deductible and my surgeon didn't even rely on them! Can anyone shed light on what tests are most cost efficient so I don't perform so many tests while undergoing chemo/radiation and before surgery?
The CTs are vital to check and see if it's spread to any nearby organs (lungs & liver). I also had an MRI to check and see how far the tumor had grown into the rectum wall. There will be more CT scans to come during this marathon, one possibly when they get you set up for radiation and possibly one a few weeks after radiation before surgery.
Foreveryoung wrote:I'm meeting with the radiation and medical oncologist next week to discuss treatment.
Does anyone share what radiation therapy or chemo will be like? Will I be able to work? Do I need to take time away from work? How will I feel? How to best cope with the after effects?
You'll find that peoples experiences and opinions are all different. But here is mine.
You'll probably be on Xeloda (oral/pill chemo) with radiation (maybe 5FU instead of Xeloda, personally I'd go with Xeloda). The Xeloda pills were really a non-issue for me, no real side effects. The radiation is the gift that keeps on giving. I was able to work full time, and didn't miss a single day of work during that time. Parts of radiation are the shits, literally. Biggest problems for me were urgency and toward the end it feels like razor blades are coming out. Fatigue is an issue as well.
Foreveryoung wrote:I'm scared that I won't be able to have children after the surgery.
I hate to mention this, but It's very very possible (likely) that radiation will put you into menopause. There were a couple of people on here a couple years ago that did a different type of radiation, a 5 day course, so that may be an option, idk, but typically it's 5.5 weeks/5 days a week. If you want to have children after this, you definitely need to speak with the Radiation Oncologist during your first appointment.
Since they're saying stage III, it's likely you'll have chemo after surgery, which would be either Xeloda or 5FU plus a heavier chemo Oxaliplatin = Xelox or Folfox. This chemo can be a lot harder, it did kick my ass. But I still worked full time throughout, I ended up taking a few days off right after each infusion. With the Xelox, it's a 3 week cycle, and I think if you want to continue to work, this is easier than the Folfox which is usually infusion every other week. The 3 week cycle gives you more time in between infusions and more time that you feel better (my personal opinion).
There's a lot of information to take in right now. I think you'll feel better once you get your plan down and know what's coming.