Thought surgery would take care of my T2 tumor...

[Jonanner]

Hello all, I've been lurking about the forum awhile and have decided to register as my cancer journey has turned out to be not as easy as I thought.

Back in mid-May I noticed blood in my stool (no other symptoms), and in early July I went to my GP. They immediately sent me to a gastroenterologist, who scheduled me for a colonoscopy within a week. The scope showed an anterior flat polyp >3cm in size, 10cm from the verge, and a biopsy was taken. Biopsy showed it was invasive adenocarcinoma, moderately differentiated. Gastroenterologist got me into see a colon and rectal surgeon the same day as he told me it was cancer; the surgeon did his own exams and figured it was 9cm in. Got scrips for a pelvic MRI w/ contrast, chest/abdomen/pelvic CT w/ & w/o contrast, blood tests, and an ultrasound from the surgeon himself. Had all of those within a few days. Tests indicated the tumor was a deep T2, with N0 and M0. After asking a friend that works for ASCO, I had a consult with another oncologist and colon surgeon who said what my surgeon wanted to do was the right thing, and that my surgeon is very good.

Surgery on 8/28 went well, they took out 20cm of my lower colon and I was out of the hospital Saturday. The pathology was not what we wanted to hear however; the tumor was a T3, and while none of the 23 nodes that were removed had cancer, there was tumor deposits on the fatty tissue surrounding one of the nodes (N1c). So Stage IIIb instead of Stage I, and I need radiation and chemo.

I had appointments with a radiologist and an oncologist (once more vetted by my friend at ASCO ) and they will follow the NCCN Clinical Practice Guidelines for rectal cancer. Radiation for 6 weeks M-F whilst taking chemo pills the same days (I forget the name of the drug), 4 weeks off, then Folfox every other week for 12 cycles.

I was really hoping to avoid a colostomy, what with the tumor being so low (ended up being 7cm from the verge), and I did come out of surgery with out even a temp one, but the oncologist told me that 30% of patients in my situation (radiation after surgery) end up with permanent incontinence and get a colostomy. I realize that in the long run that if I get a colostomy, I will learn to live with it, and be happy I'm not tied to the house and bathroom, but right now I'm being a bit grumpy and fixating on that 30%. Other than being around people that are going through the same general situation I am, I am hoping to get advice on getting though radiation and chemo with minimal changes/disruptions to the rest of me. Such as pure aloe on the red/burn marks from radiation? (That's just off the top of my head).

So that's where I am now!

[dianne052506]

Joanner,
I'm sorry you're having to deal with all this, but this forum is a good place for information that will help you along. I've never had radiation, but my best advice to you is to search posts from weissoccermom for advice on preventing damage from radiation.

The oral chemo drug used with the radiation is Xeloda. There is a co-pay assistance program that can help with the finances. http://www.xeloda.com/hcp/patient-support/co-pay/#
As soon as you have your Rx, you can find out more.
best wishes,
Dianne

[luvmymom]

This was similar to my mom's situation--her clinical staging was T2N0 rectal cancer, but her pathological staging turned out to be T3N1 (IIIB) so she ended up having radiation and chemo after surgery--4 rounds of FOLFOX, then 28 treatments of radiation + Xeloda, then 4 more rounds of FOLFOX. In our case, although our rad onc did not give us a specific percentage of people who end up with ostomies due to radiation, he told us that an ostomy from radiation damage would only become necessary in the absolute worst case scenario (it did not.)

As far as minimizing the side effects, there is a ton of good advice on this forum about how to cope with chemo and radiation! People's mileage seems to vary a lot as far as how they are affected by chemo and/or radiation. For my mom particularly, the radiation was the hardest part; this could be because she had the radiation after surgery and four rounds of FOLFOX, whereas Stage III folks who are correctly staged to begin with usually begin with the radiation when they are still fresh. Also the radiation visits are daily whereas chemo is only every two weeks. The radiation was less of a problem in the beginning; the effects really kicked in a few weeks in. Things that helped were a sitz bath, a bidet-like thing that allowed her to clean with water after using the toilet rather than wipe, Aquaphor ointment (available at the drugstore) and Proctofoam and other ointments prescribed by her doctor. With chemo, what helped a lot was making sure she was well hydrated before chemo sessions. I know people who have worked through the full course of treatment, but my mom had enough leave to take the whole time off. I accompanied her to surgery and the first few months of treatment--at which point I became pregnant and became very sick myself, and I ran low on leave from work so I had to stop going with her. She was able to drive herself to all the remaining chemo and radiation, so that gives you some idea that as uncomfortable as I am sure the treatment was she was not incapacitated by it.

My mom's treatment was not fun at all but she made it through and, at age 69, is now back at work. We are now awaiting the results of follow-up scans. As far as disruption to everyday life activities...well, we canceled my wedding, my work travel plans, etc. and she went on many months of leave from work. But once we got over the shock of it all, I managed to reschedule my wedding on a much smaller scale and get married during her treatment, and then I got pregnant with her first grandbaby and she was even able to attend some of my OB appointments...so life has gone on. I guess after a while we got into a routine of doctors' appointments, and all of us, including my mom, learned to deal and live around it. I hope the same happens for you and that you navigate the next few months as comfortably as possible, with as little disruption as possible to your life, and the most positive outcome.

Hugs.

[Jonanner]

Dianne and luvmymom, thanks for the replies and advice. I signed up for the co-pay program, and I also looked the drug up on GoodRX. Holy sticker shock, Batman!

[justin case]

My tumor after surgery was 2 to 3 cm from the verge. I had a temporary ostomy for 3 weeks, and I was reversed 3/2/2012. I'm doing just fine, or maybe better than before surgery.
Regards,
Michael

[justin case]

I worked through radiation and chemo, but it is tiring going for the appointment everyday. I found warm soaking bathes, gave me the most comfort(along with a Vicodin or 2)
Regards,
Michael

[PGLGreg]

I was in a similar situation -- rectal cancer with an immediate operation, then radiation and chemo later. Except I wound up at stage 2 not 3, and I was not given Folfox. (I wound up with no ostomy.)

But here's a difference that you might want to check about. You say your radiation will be given by a radiologist. Mine was given by a radiation oncologist, who is in charge of a pretty elaborate setup with a large staff at one of Honolulu's large hospitals. That's his specialty -- radiation oncology.

[Jonanner]

But here's a difference that you might want to check about. You say your radiation will be given by a radiologist. Mine was given by a radiation oncologist, who is in charge of a pretty elaborate setup with a large staff at one of Honolulu's large hospitals. That's his specialty -- radiation oncology.

My mistake, I looked up the "radiologist" I am using and he is actually a radiation oncologist. I'm new to all this and was unaware of the difference. Thanks!