Brand new, and lost

[recruiter]

I am brand new to this rectal cancer thing, so bear with me. I don't have a lot of definitive diagnosis after three weeks, and the glacial pace of this process is wearing me out.

What I do know is this: 55 y/o/a male. Large rectal adenocarcinoma, very low, right above the anus. Pain, difficulty sitting at times. Really only comfortable lying in bed. Getting started with radiation and chemo next week. Finally. Surgery in 12 weeks or so.

The surgeon did a CT scan and I was encouraged - no signs of spread to distant major organs or nodes. CEA came back 2.1, but I realize that's an iffy number. They were pretty upbeat, and I was pretty surprised. Given the size of the tumor, I was expecting the worst.

Visited with my oncologist yesterday - best in our city, on the staff at MDA in Houston. He is skeptical of the CT scan results, and he's going to do his own testing - CT of the lungs, PET.

About the only thing he's optimistic about is the tumor itself - he says he can "all but eliminate it" and it will respond quickly to the chemo and radiation.

I don't know what to think. Had a good weekend, slept good, after the CT scan results from the surgeon, and spent last night wide awake wondering if I'm finished.

[rp1954]

You can find useful information and actions if you read the Life Extension articles previously listed, and separately, improve your initial bloodwork.

We've done better by doing more investigation and baseline measurements, most of all, expanded bloodwork before major treatments (surgery, chemo, radiation), and cimetidine before/after surgery. We started many of the supplement dosages recommended by Life Extension and cimetidine right after diagnosis itself, thankfully.

[BrownBagger]

Sounds encouraging to me. You won't know about lymph node involvement until after your surgery, when they remove a bunch to study. If there are any cancer cells detected then, you'll be staged as a 3. If not, then you'll be Stage 2.

I like that your oncologist is going to do more thorough testing. It's scary, but if there's any spread to other organs, best to start treating it early.

Finally, even if you do turn out to be Stage 4, all is not lost. I'm at 7 years as a Stage 4, still in treatment and still going strong.

Good luck. Sounds like you're in good hands.

[jhocno197]

Size of the tumor is a lot less important than how much it has spread.

Wishing you well!

[JudeD59]

I had a large ulcerated tumor in the rectum and I turned out to be Stage II. They may want to send you for an endoscope (rectal ultrasound) before they start radiation/chemo. That's what they did with me and that's how they checked my lymph nodes and determined that there wasn't any spread. That's also how they determined how far through the rectum wall the tumor had grown and that helped with the staging. The radiation/chemo shrinks the tumor so there is less of an area that needs to be cut out during surgery. I had a lot of tailbone pain with mine (some people do, some people don't) and I also found it very difficult to sit. I bought a memory foam cushion which made it a lot easier when I had to sit, like in the car. As radiation/chemo shrunk the tumor, the pain decreased significantly. My surgeon also gave me pain medication to take when I needed it.

Good luck and try to take this first part one day at a time so you don't get overwhelmed.

Judy

[Deb m]

recuiter,

My husband is also a patient at MDA. He was diagnosed on 2/11 with colon cancer. We have been traveling back and forth from Kansas for everything. It's very good for you that you live near there. You are in great hands. Just try and take one day at a time. For us, we felt better once we started with the surgery and treatments. I was glade to finally start killing all that bad stuff in him. I think part of the hardest part is waiting.

Wishing you the best,

deb m

[Steph20021]

Wishing you the. Set of luck with the upcoming lung ct and let scan. I know the waiting part is brutal. So far so good for you though, no signs of spread yet is encouraging!

[lauragb]

The sooner you can get through the testing, the better you'll feel. It's difficult when things are up in the air. Was there anything of particular concern to your oncologist?

Like you, I had a large, low rectal tumor. At MDA, they should have good protocols in place to help you deal with the side effects. Just make sure you ask in advance so you can be proactive with diet and skin care. When the radiation has to be targeted low, it can cause burning around the anus. All that said, the discomfort you feel from the tumor itself may be alleviated quickly from the treatments.

Sorry you are having to go through this. There is a wealth of info on this site. You can always ask questions or check the archives.

Laura

[juliej]

Bill, I think the slowness of the whole diagnostic process is hard to handle - the tests, waiting for the results, the seemingly endless appointments with an oncologist, radiologist, surgeon, etc. It can wear a person out! However, in your case, everything seems to be on track so far. I agree with BrownBagger that it's good your oncologist is going the extra mile and looking for any lung, liver, etc. involvement. If the news is good, you'll feel doubly reassured. If the news is bad, you'll feel better knowing what you're dealing with. As others have said, size of tumor is much less important than metastatic disease. CEA is not a good indicator for some people and you may be one of them. I'd make sure your oncologist orders tests for KRAS, BRAF, and MSI because all of those things can affect your treatment options.

So, hang in there! This is hard, very hard, but doable. You'll feel much better when you start radiation and the tumor starts shrinking and you can sit without pain. Try going for walks to deal with the anxiety or ask your oncologist for a prescription for Ativan if you feel too wound up. Ativan helps with chemo-induced nausea too.

Juliej

[Sams wife]

I was gonna say Ativan.
But the pain pills didn't help hubby to much. Gabapintin finally helped him more than anything. But you have to wean off of them too so be careful. Good luck!

[recruiter]

Got a little bit more explanation on the initial CT scan from the radiologist today, and it's still scary.

The abdominal and pelvic scan caught the base of my lungs, and revealed "suspicious" nodes." Not necessarily cancer, but radiologist supports the Monday PET. I am not a smoker, but my parents were, and I have a long history of respiratory problems, including pneumonia.

And there's a spot on my left hipbone as well - same thing. Might not be a big deal, but needs investigation.

So, the uncertainty deepens ...

[Kick'nAssCancer'sAss]

Hmmm just curious as to why your surgeon never did a scan on your lungs in the first place. A chest, abdomen and pelvic scan is standard in rectal cancer. You are already going to get enough radiation you sure don't want any extra scans thrown in also. Good thing your onc is on top of it.

[juliej]

Got a little bit more explanation on the initial CT scan from the radiologist today, and it's still scary.

The abdominal and pelvic scan caught the base of my lungs, and revealed "suspicious" nodes." Not necessarily cancer, but radiologist supports the Monday PET. I am not a smoker, but my parents were, and I have a long history of respiratory problems, including pneumonia.

And there's a spot on my left hipbone as well - same thing. Might not be a big deal, but needs investigation.

So, the uncertainty deepens ...

Sounds like the jury is still out until you have more extensive tests. Lungs are full of all kinds of "junk" so interpreting those "suspicious nodes" is really important. Second-hand smoke and pneumonia are just some of the things that can cause benign lung nodules. I had a benign granuloma which was initially diagnosed as a CRC met so I personally know how hard it is to tell what's in there. Same thing with the spot on your left hipbone. The radiologist's job is to find possible mets and the oncologist's job is to interpret the radiologist's findings. You'll know more when you have the full CT and PET scans. Until then, try not to worry (as much as you can).

Juliej

[recruiter]

I'm going to blog about this journey at https://cancer413.wordpress.com

Check it out if you have the time.

[BrownBagger]

I think the uncertainty is the hardest part. I know from experience that even if the news is bad, at least you know what you're up against. Not knowing what might be lurking out there is worse, because your imagination can be a lot scarier than reality.

And yes, there's a lot of junk in our lungs. I know that piece of granola lodged in her lung caused Juliej a lot of what turned out to be unnecessary pain and suffering and worry. But, you gotta check this stuff out.

As I suggested earlier, metastatic disease is a lot easier to treat and control if it's caught early, and hopefully contained, to the extent that cancer can be contained. So yes, the uncertainty is difficult but in the long run, it's better for you than the bliss of ignorance.