Mom diagnosed last week - so scared

[Cyn]

On the weekend of November 3, my mother started experiencing pain in her lower left side. She thought it was a muscle pull or a hernia. A week later (on the 11th), she developed a fever and my dad was able to convince her to go to the hospital. They diagnosed her with diverticulitis with a perforation and admitted her to the hospital for treatment with antibiotics in the hope that her body would heal the perforation. She ended up developing an abscess, and they put in a drain. Then another lump showed up (we were told it was likely a mass of blood or something) and she eventually developed cellulitis (because the abscess drain had moved or something and it was leaking). On the 17th (after the doctor discovered she'd developed cellulitis) she was operated on and a portion of her colon was removed. She was given a temporary colostomy and we were told that they "got all the bad stuff out." At that point everyone still thought it was just diverticulitis. A few days later (the following Tuesday, November 21) she was told that the portion of colon they had removed tested positive for cancer. Two out of 13 nodes affected. Doctor told us figures like T4N1 (which we later deduced to mean Stage 3, but we don't know which subclass of stage or subclass of the T number). Doctor said all the margins were "clear" except for one area where it was very, very, very tiny 1mm. He told us today during her post-op appointment that it had not gotten into the abdominal wall.

She hasn't met with an oncologist yet (we're still waiting for the call to set up an appointment), but we understand that probably what will happen next is a PET scan and possible chemo/radiation.

I've learned more about colon cancer in the past week or so than I ever cared to learn in my whole life. And the more I learn the more I grow equally terrified and optimistic (if that makes any sense).

I found your forum after reading this blog post: http://www.experienceproject.com/storie ... cer/112286

Not sure what I hope to find here, but I guess ... I just need a place to vent and learn without stressing out the rest of my family. Especially my Mom.

I'm just so petrified for her.

[Aqx99]

You are in the right place. Vent away. Ask any and all questions you have. This is a really good booklet to help you learn about the cancer and the treatment process.

https://www.nccn.org/patients/guideline ... index.html

[NHMike]

We've all been through this process or are going through it, either as patients, relatives or friends. It is very scary stuff but survival rates have improved greatly over the past ten years and new drugs and therapies are in the pipeline to make survival easier or possible where it wasn't before. You will go through a lot of different emotions and it takes a toll on your life (your life is on hold for some time) but you can work through the process. Please ask away on questions, whether general or specific.

[WriterGirl1969]

On the weekend of November 3, my mother started experiencing pain in her lower left side. She thought it was a muscle pull or a hernia. A week later (on the 11th), she developed a fever and my dad was able to convince her to go to the hospital. They diagnosed her with diverticulitis with a perforation and admitted her to the hospital for treatment with antibiotics in the hope that her body would heal the perforation. She ended up developing an abscess, and they put in a drain. Then another lump showed up (we were told it was likely a mass of blood or something) and she eventually developed cellulitis (because the abscess drain had moved or something and it was leaking). On the 17th (after the doctor discovered she'd developed cellulitis) she was operated on and a portion of her colon was removed. She was given a temporary colostomy and we were told that they "got all the bad stuff out." At that point everyone still thought it was just diverticulitis. A few days later (the following Tuesday, November 21) she was told that the portion of colon they had removed tested positive for cancer. Two out of 13 nodes affected. Doctor told us figures like T4N1 (which we later deduced to mean Stage 3, but we don't know which subclass of stage or subclass of the T number). Doctor said all the margins were "clear" except for one area where it was very, very, very tiny 1mm. He told us today during her post-op appointment that it had not gotten into the abdominal wall.

She hasn't met with an oncologist yet (we're still waiting for the call to set up an appointment), but we understand that probably what will happen next is a PET scan and possible chemo/radiation.

I've learned more about colon cancer in the past week or so than I ever cared to learn in my whole life. And the more I learn the more I grow equally terrified and optimistic (if that makes any sense).

I found your forum after reading this blog post: http://www.experienceproject.com/storie ... cer/112286

Not sure what I hope to find here, but I guess ... I just need a place to vent and learn without stressing out the rest of my family. Especially my Mom.

I'm just so petrified for her.

Cyn, I'm so very sorry that you had to find us, but very glad you did. This phrase has become almost a motto here. <:- )
Did the surgeon who operated give you a copy of the pathology results? If not, you can ask for this. This will help because it may have more information than what they gave you, and if not you can post and/or look up the information to find a more specific answer. Also, don't be afraid to ask the doctors to be clearer. Some patients don't *want* the specifics, so not all doctors will default to giving you everything. There are many posts about staging on this site that you can refer to, but here are some basics. T, N and M make up the "staging" result. T = how far into the colon wall. N = how many nodes (so your mom would be a 2 vs. 1 for this I would think based on your earlier notes), and the M = "mets" or anywhere the cancer has spread to. I was T3N1M0 at staging. By most charts that puts me at stage IIIb, although by some charts is stage IIIa.

Usually with rectal cancer, they do chemo / radiation first to shrink the tumor prior to surgery. Since your mom has already had surgery with clean margins, it's possible she will not need radiation. That might also depend on what they find in the CT or PET scan. Again, from what I've learned this is usually done prior to surgery, so the cart has come a bit before the horse in your mom's case. If they did get it all in surgery, they'll probably (remember, I'm no doctor, I'm just stating what I've been told) want to do what's called "mop up chemo," which basically means that they want to kill of any stray cancer cells that might still be floating around in there before they can land anywhere and cause problems in the future. Standard is about 6 months. There are lots of different options when it comes to treatment too, so I would strongly encourage you and your mom to look into them so that you can take the doctor's recommendation(s), but still make the decisions on what is best for your family. For example, for me, taking an oral pill was much less invasive than going in for infusions since I work full time and am the primary insurance carrier for my family. Others note that having a pump is much better than taking lots of pills. So do some reading. For me, learning more was a way to get some of my power back after the cancer and my diagnosis had stolen it all away. Once treatment gets rolling and things go back to a somewhat normal routine, it gets easier. It's this early stuff with all its waiting and unknown that is the hardest.

So deep breaths, you've come to a safe place, and try to take it one day at a time. There are LOTS of survivors here, and they are making HUGE advancements in treatment all the time. We're here for you.

Hugs, smiles and prayers,
Tracy (aka WriterGirl - - as you can tell from my horrendously long post - - LOL)

[Cyn]

Thank you so much for all the responses; I really appreciate your taking the time to respond to my panic.

I looked over mom's lab report today and she is indeed listed as N1 (because 1-3 nodes were affected - in her case, it was 2 out of 13). But like the doctor told us initially, they hadn't gone in with the mindset that it was a cancer operation, but just a diverticulitis issue. So the node number might change once she sees the oncologist? I am guessing the presence of the tumor caused the diverticulitis issue? She's never had a problem with diverticulitis before.

Her more specific numbers on the report were T4a, N1b Her margins are described as "uninvolved by invasive carcinoma" but the distance of invasive carcinoma from the closest margin was only 1mm, which was really, really, really close. So that's worrisome. The surgeon told us that the cancer had not spread into the abdominal wall (or something like that). So that sounds like it was confined to the colon. However, I also see something like "Tumor penetrates to the surface of the visceral peritoneum," "Macroscopic Tumor Perforation - Present" which gives me concern. And yet, on another page in the report it says: "The mass does not appear to perforate the bowel wall." But then in that same area it says "The mass grossly appears to invade into the muscle wall with a small focus of possible invasion into the adjacent adipose tissue." (ETA - but that might just be talking about the diverticulitis; I have no idea). So all of that is confusing and seems almost contradictory. Her histologic type is adenocarcinoma (in the Sigmoid colon), and is identified as Low-grade (the surgeon had already told us it was slow-growing, so this confirmed that).

I had read some about a pill form of chemo but didn't know if that applied to colon cancer patients. Since all this happened, I learned a little about the different ways in which chemo (and/or radiation) can be administered and I have no clue about the pros/cons of each one. There is still so much to learn. She has an appointment with the oncologist next week. We are under the impression that no cancer treatment will start until she has more fully healed from the surgery she had less than two weeks ago (so ... probably around the beginning of the year?).

Since my initial post I've determined (based on the lab information) that her stage is probably 3b but of course that may change after talking to the oncologist.

*sigh* I just want this to all be over with and for her to be OK. I try to comfort myself by reading survival stories, which gives me hope. But still ....

[NHMike]

The nodes are determined by pathologists (maybe radiologists too) either examining tissue or looking at scans. I do not know that the two medical issues are related and I don't think that we can tell - you could ask your oncologist for an opinion.

The usual chemo for colorectal cancer is 5-FU in infused or oral form and sometimes additional drugs. For rectal cancer, the usual approach is chemo + radiation, then surgery, and then chemo. I have that and just finished surgery and will likely start chemo back up in a few weeks. The wait time for surgery to chemo will be about seven weeks for me, and, yes, this is healing time.

It sounds like you found one of the staging sites to determine 3B. I am 3B as well and there are lots of 3As, 3Bs and 3Cs around here along with everything else. I started this stuff on June 23, 2017 and I'm about two-thirds though the process. It can take a while to go though. It may be faster for your mother as surgery is a simpler option for colon cancer compared to rectal cancer.

[Cyn]

I understand chemo is a cycle thing, on and off? During which time is the immune system at its worst? Only during a cycle? We've decided that when/if she goes through chemo we'll all wear masks and gloves around her to avoid any possibility of spreading germs to her. How have you been able to handle the chemo, NHMike?

[NHMike]

I understand chemo is a cycle thing, on and off? During which time is the immune system at its worst? Only during a cycle? We've decided that when/if she goes through chemo we'll all wear masks and gloves around her to avoid any possibility of spreading germs to her. How have you been able to handle the chemo, NHMike?

There are two types - Neo-Adjuvant and Adjuvant. Neo-Adjuvant is chemo before surgery and I think that it's a lot more common with Rectal Cancer than Colon Cancer. For Rectal Cancer, it's typically 28 days with chemo five days a week (the pills - not sure how infusions work), and the weekends off. This is usually concurrent with radiation therapy.

Adjuvant chemo is after surgery. The oncologist recommendation for Xeloda pills is in a three-week cycle. Pills for two full weeks, then 1 week off. Oxaliplatin infusion first day of the cycle. He said minimum of four cycles, max of 8, sweet spot of 6. I wasn't paying close enough attention to the infused but the recommendation for infusion was 8-12 cycles.

When I went through the Neo-Adjuvant, I basically avoided crowded places. I worked mostly from home and did go out (without a mask) but that was during the summer when people aren't as sick as they would be heading into cold and flu season. I had very few issues with the chemo. The radiation was definitely tougher. That was Xeloda-only though. I've heard that it's tougher with Oxaliplatin but you only have it one day in the cycle and the effects should wear off after a day or so.

How have you been able to handle the chemo, NHMike?

Here's a video that I took the next to last day of chemo and radiation: https://www.youtube.com/watch?v=R_ipaq4 ... 0s&index=2 (I'm the guy in the white shirt)

How people do on chemo varies widely. I've heard some people get very tired on it, while some have neuropathy and other problems. It does depend on which chemo drugs you're taking.

[Cyn]

Thank you! I will check out that video and pass this information along to my mother.

[DarknessEmbraced]

I'm sorry you and your Mom are going through this and hope you get answers soon!*hugs*