Jacques wrote:Hi Tina -
As someone mentioned earlier, it would help if you could upgrade your signature so that it includes details of all of the currently available items that define your risk profile. Right now your signature is very basic and does not give a complete picture of what is currently known about your diagnosis and your treatment plan.
Some items that should be in your signature right now are highlighted in bold below. Items that are missing or incomplete are indicated in red.
(Note: Items that are not highlighted in bold above can be added later on, as they become available.)
Age & Sex
DX: Rectal Cancer (RC) or Colon Cancer (CC)
Tumor Location: If RC, then upper, middle or lower rectum, and distance from anal verge. If CC, then ascending colon, hepatic flexure, transverse colon, splenic flexure, descending colon, sigmoid colon, or recto-sigmoid junction, etc.
Tumor type: Adenocarcinoma; villous adenoma; signet ring-cell carcinoma, etc.
Tumor size: (in mm or cm)
G1: Well differentiated (low grade)TNM code: e,g, T3N0M0, etc
G2: Moderately differentiated (intermediate grade)
G3: Poorly differentiated (high grade)
G4: Undifferentiated (high grade)
Stage : Stage I, Stage II, Stage III or Stage IV (with subscript, if applicable)
Number of cancerous lymph nodes:
Mets: Location and number of metastases, (e.g., number of mets to liver, mets to lungs, etc)
Baseline CEA value:
Lymphovascular invasion (LVI) (if known): present vs. absent
Perineural invasion (PNI) (if known): present vs. absent
Surgical margins: clear or involved
MSI status e.g., MSS
Lynch status(if known)
Primary surgery type:
LAR, ULAR, TME, APR, Laparascopic vs. open resection, polypectomy, proctosigmoidectory, colectomy, hemi-colectomy, sigmoid-colectomy, etc...Ostomy surgery: Ileostomy, or colostomy, or no ileo surgery
Radiation therapy (if any): Chemo/rad
Chemotherapy : e.g., XELOX, CAPEOX, FOLFOX, etc.
Also: when you see your oncologist this week, could you ask her:
1. Who made the determination that your liver mets are not resectable? (Write down the name so that you can look up their qualifications later on when you get home.)
2. What reasons were given for the "not resectable" decision?
3. What is the official name of the chemo regimen that you are on right now? How many weeks in each cycle?
4. When are you going to have a scan to determine the effect of the pre-surgery chemo?
5. When will you know what the next step is (more chemo? some chemo/radiation? surgery?)
To be totally honest with you, a lot of that "red" info is not information that I know, and a lot of it is information that I'm too scared to know. My mind already goes to very dark places sometimes. I don't want it to go to even darker places. I'm trying to stay positive. I'm sorry if that sounds lame. I just can't handle much right now.
1) I don't know who made the "unresectable" determination.
2) The oncologist said that I have numerous metasteses on both sides of my liver.
3) official name for my chemo regimen... I don't know. All I know is that every three weeks, I go in for intravenous oxaliplatin, Avastin, and calcium/magnesium. I also take capecitabine orally, 1500 mg twice a day for 14 days, and then I get a week off.
4) I'm having my 3rd chemo treatment this Wednesday, and then I am having a scan in about a week from now.
5) the oncologist said we're doing six rounds of chemo (unless, of course, there are some miraculous findings in the scan that I'll have in a week), and then we'll assess whether surgery is an option, whether we'll do radiation, etc.
Thank you so much for all your help. I wish I could be in a better headspace with all of this. A lot of people here seem to be doing so well mentally. Maybe I'll get there too. Maybe I just need more time.