blueorchid's Journey with Colorectal (Colon) Cancer

After surgery, we were told that the cancer had broken through her bowel wall, infected her omentum, and there was a nodule on the inside of her belly button that he took. He also took 13 lymph nodes. He said that the liver looked good, and he could not see any mets. CT didn't show any mets to her liver, ovaries, etc.

First pathologist felt that the large tumor in her colon was not primary! She said the cells were not acting as primary cells usually do, and she was puzzled by the findings, so she sent it off to another pathologist for further testing.

She had a ct done, and, although the dr just had a quick look and will have to look more closely, he did not see any mets to her lungs.

Second pathology report came back the same as the first: we don't know what this is, its not acting like a primary, I will send it away for ANOTHER option. Surgeon says he doesn't even know where they sent it to, he thinks it got sent out of the country for further evaluation. All they know at this point is they feel it is extremely rare. As if cancer wasn't bad enough, but hey, we don't know what type of cancer it is, its really rare is all they can tell us. OH YEAH, and your pancreatic tumor marker is through the roof, but the CT shows no findings of pancreatic tumors. Have a nice day. humph.

Last week, the surgeon told mom that her pancreatic tumor count as very high (but he didn't want to tell her numbers because he "didn't want to scare her"......??!!! Too late!) Today I got a phone call at work and it was mom saying "this is not text worthy, this is definitely phone call worthy.... They got my new blood test results.... the first pancreatic tumor marker count was 6000. The new one is 64!!!! And the colon tumor marker count is slightly higher than normal, but he said its not bad!" The surgeon called her directly, which is not normal for our system. She said he asked her how her weekend was, and how she was, so she was kinda waiting for bad news! She was sooooo excited! I was very excited too!! BUT there was part of me who immediately thought which one is the mistake!!?? But then I thought no, we have to take every bit of good news, every victory as it comes. If things turn out differently, we'll deal with it then. But I don't want to spend days, weeks, etc wondering about it. So I will take things as they are. And this is a big celebration for us :)

Well, to sum it up, She said mom has stage IV colon cancer. Pathology report came back, and the reason it was sent out so many times is not that it was rare, but that the tumor was so big on the outside of the colon, it confused them and some thought that it must have come from somewhere else and metastasized there. Turns out that the primary was in the colon and it broke through the colon and infected the omentum. She said that mom needs another CT abdomen and pelvis (which we knew, but mom's family doc messed up....) and if there is ANY little spec anywhere, she gives her two years, and chemo would be given as a palliative measure. IF there is nothing at all on the scan, then chemo would be given to cure, and there would be a 30% chance that it would never come back. I don't get this. There are no mets to the liver, lungs, ovaries, uterus, pancreas, spleen, etc, according to the first two CT's and the surgery report, so if there was a little left over in the omentum or something like that, why would that mean 2 years (which I realize is an average....)? It doesn't make sense to me why she would be given the same prognosis as someone with mets to the liver, lungs, or other major organs?

I'm trying to remember back when this all happened.... She did 6 months of chemo I believe, and it ended in Nov of 2012. She had severe neuropathy, extreme sensitivity to cold in her hands and feet. I remember her saying that liquid in a cup at room temp would feel very cold to her. She had to wear gloves to get anything out of the fridge. She did not lose her hair, but it thinned out and broke off quite a bit, but not enough that someone from the general public would notice. She would feel like she was walking on balls bc her feet were so cold and pins and needles. She threw up a lot in the first week of chemo, but felt not too bad in the second. Just really tired. She hid the first week from us. We were not allowed to see her that way. She was quite weak, and told me one time she had to get her husband to help her get off of the floor bc she didn't have the strength in her legs.

She finished her treatment and we went away for a much needed trip. She didn't have much strength, but we had a great time. She told me later that that weekend changed her mind and she was going to keep fighting.

Hipec is literally nick named the mother of all surgeries. It is quite risky, and not performed often. But mom was a good candidate bc her cancer was all in her abdomen. What they do is they open up the abdominal cavity, manually inspect the internal organs, remove anything that looks like it might be cancerous, then insert tubes into the abdominal wall and circulate heated chemotherapy through a perfusion machine and "bath" the organs in the heated chemo before removing the chemo. Risk of infection was 50% and some people die. We all talked about it alot, I did a ton of research and talked to some drs ( although most had never heard of the procedure, so I ended up teaching them in a way....) After much thought, she decided to go through with it.

She had Hipec surgery on jan 23 2013. The surgeon was happy with the results, saying she came through it well. He did another resection of the bowel bc it looked like there may be some seeding from the previous surgery, gave her a total hysterectomy bc it looked like a few small spots on her ovary might be cancerous, more of her omentum and peritoneum, her galbladder (bc it was, quote, in the way lol) She was doing great when they took her out of surgery. Much better than the first. The first resection, she was in sooo much pain. She'd wake up enough to say Pain. And mom is not like that at all. She has a very high tolerance to pain. But this time it looked like her pain was being managed well. Everything was going good until she got a little too sleepy.... and then she stopped responding to people.... she couldn't stay awake, couldn't move well, wouldn't follow directions... they rushed her to MRI thinking she had a stroke. Long story short, they managed her pain just a little too well..... mom and I are very sensitive to meds, and even though we told them that, they had never seen someone so sensitive. Turns out she was too doped up to do anything.... they cut her down and she came back around. She left the hospital on nothing more than children's advil...... lol Recovery was long. She was very weak and had to result to using a wheelchair for long walks or a walker for shorter walks, or my step dad's arm. She never fully regained her strength in her legs. She did get stronger, and relied on the walker less, but never as strong as before. But she is one strong lady. She went to physio a few times and did what they asked her to do and was using the walker less and less. The dr told her recovery from the surgery would take at least a year.