Intro, and please give your feedback

[TinaFish]

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.

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)
Tumor grade:

G1: Well differentiated (low grade)
G2: Moderately differentiated (intermediate grade)
G3: Poorly differentiated (high grade)
G4: Undifferentiated (high grade)

TNM code: e,g, T3N0M0, etc
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
BMI
Lynch status(if known)
KRAS/BRAF status
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.

(Note: Items that are not highlighted in bold above can be added later on, as they become available.)

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?)

Hi, Jacques

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.

[Rock_Robster]

I understand about the details TinaFish - I’ve been on this forum for about 9 months now and only this week have I actually populated all the features of my primary tumour (still hurts to read sometimes!). I certainly wasn’t this positive at the beginning, which for me was by FAR the hardest part. It gets easier. Just keep banging on and maybe add a little bit at a time. I just keep reminding myself that the more complete a picture I can give my peers on this forum, the better quality the advice I get back will be (which has been invaluable).

[NHMike]

I think that everyone has been in the dark places as it may be the first time we've faced death or treatments that are quite difficult. But many of us are through treatment or have been in treatment for a while so we know the ropes. That still doesn't make them pleasant or take away the worry.

[Jacques]

...
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.
...

The chemo regimen you describe is called CAPEOX + Avastin (also known as XELOX + Avastin). Here are some references to the side effects that you might run into:

https://www.navigatingcare.com/chemotherapy_treatments/capox-bevacizumab-colorectal
.
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59222&p=473631#p473631
.
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48945&p=372481#p372481

[Jacques]

..."Ok, I'll talk to her on Wednesday when I go in for chemo." ...

Hi Tina -

Good luck on your talk with the oncologist. You could use this as an opportunity ask her for help in filling out the missing data items for your signature.

Here is a preliminary draft of your signature:

F 45,
DX: Rectal Cancer (RC)
Tumor Location: ??? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ???
TNM code: ???
Stage : Stage IV-B
Number of cancerous lymph nodes: ???
Mets: Numerous mets to liver, lungs
Baseline CEA value: ???
MSI status: MSS
KRAS/BRAF status: ???
Primary surgery type: To be determined later
Ostomy surgery (if any): To be determined later
Radiation therapy (if any): To be determined later
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

Here is the link for updating your sighature:

https://coloncancersupport.colonclub.com/ucp.php?i=ucp_profile&mode=signature

[TinaFish]

..."Ok, I'll talk to her on Wednesday when I go in for chemo." ...

Hi Tina -

Good luck on your talk with the oncologist. You could use this as an opportunity ask her for help in filling out the missing data items for your signature.

Here is a preliminary draft of your signature:

F 45,
DX: Rectal Cancer (RC)
Tumor Location: ??? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ???
TNM code: ???
Stage : Stage IV-B
Number of cancerous lymph nodes: ???
Mets: Numerous mets to liver, lungs
Baseline CEA value: ???
MSI status: MSS
KRAS/BRAF status: ???
Primary surgery type: To be determined later
Ostomy surgery (if any): To be determined later
Radiation therapy (if any): To be determined later
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

Here is the link for updating your sighature:

https://coloncancersupport.colonclub.com/ucp.php?i=ucp_profile&mode=signature

Jacques, you're amazing. Thank you. How do you know that my stage is IV-B? What does the B mean?

[NHMike]

American Joint Committee on Cancer
Colon and Rectum Cancer Staging

https://cancerstaging.org/references-tools/quickreferences/Documents/ColonMedium.pdf

[boxhill]

TinaFish, since this is still in the feedback thread...

You have expressed a lot of completely understandable anxiety and confusion here. It seems to me that your confusion, which is based on lack of basic information, is exacerbating your anxiety.

In addition, you have said you want to push for more advanced testing and access to more aggressive treatments. I would suggest to you that you will be able to do so far more effectively if you have more information. It is my experience that doctors give more information to people who demonstrate that they wish to be informed. Some doctors probably act more aggressively on behalf of patients who ask for it, or even push for it.

I would certainly agree that you should avoid looking at things like survival stats, which are generally bogus now because they are at least partially based on people who were treated when 5FU was the only thing available.

[Jacques]

TinaFish, since this is still in the feedback thread...

You have expressed a lot of completely understandable anxiety and confusion here. It seems to me that your confusion, which is based on lack of basic information, is exacerbating your anxiety.

In addition, you have said you want to push for more advanced testing and access to more aggressive treatments. I would suggest to you that you will be able to do so far more effectively if you have more information. It is my experience that doctors give more information to people who demonstrate that they wish to be informed. Some doctors probably act more aggressively on behalf of patients who ask for it, or even push for it.

I would certainly agree that you should avoid looking at things like survival stats, which are generally bogus now because they are at least partially based on people who were treated when 5FU was the only thing available.

Hi TinaFish -

In line with boxhill's suggestion above, I would like to suggest that you download the file below and have it available whenever you talk with your oncologist. The file contains the 2014 pathology standard for colorectal tumor mutation reporting. It contains the names of the 4 proteins associated with MSI / dMMR that boxhill referred to earlier, and it contains a very long list of other mutations, some of which may be relevant if you are trying to line up a more aggressive treatment for yourself.

The list may be relevant if and when your oncologist starts to talk about mutation burden and related high-risk factors. You could use this list to ask your oncologist which of the available genomic tests would be most relevant for determining a more aggressive treatment regimen for you. If she says she doesn't know anything about any of these tests, then that could be a red flag suggesting that you might want to look for a different oncologist who is more familiar with genomic testing of tumors.
.
Template for Reporting Results of Biomarker Testing of Specimens

https://documents.cap.org/protocols/cp-gilower-colonrectum-14biomarker-1201.pdf

[DBF]

Hi TinaFish-
I’m so sorry you have to deal with this as a single mom of young kids. I just wanted to offer my support and say I’m following your threads and sending warm wishes. I don’t post much, but I like to keep up with the news of the many long-term survivors here. You seem to be getting such great advice here regarding your current situation. I found out about so many important things here, and I really do think the advice I got here had an impact on my survival.

Donna

[TinaFish]

I'm so lucky to be on this forum. Thank you to everyone who has given me such great advice. Maybe one day I'll be able to pay it forward.

I have been having some really depressed moments lately because I'm so scared. I see all of these NED people on this site, and that gives me hope, but as I said in a previous post, I know that my perspective is skewed because people who aren't around anymore obviously aren't posting anything on this forum. I not only have my two beautiful children; I have my dogs whom I adore almost as much as my children, and I have online businesses that I wanted to pass on to my children one day. I don't know how those things would fare if I were gone. I have graduations and weddings to attend, grandchildren to hold in my arms, and maybe I can even fall in love in the future with a great man. I have so many things in my life that I want so badly to experience.

But most of all, what scares me and saddens me is what my children would go through emotionally if I didn't make it. I just lost my own mother in October, and while it was chilling and shocking and horrific, I made it through because I'm an adult and I have a strong mental constitution. Had I lost my mother as a child, however, it would have been the most indescribable nightmare I could have imagined. I don't know that I would ever have gotten over it. The pain would have been unreal. If my children had to go through that pain, omfg. And the other person who breaks my heart is my poor 82-year-old father. He just lost his wife of over 50 years, and now his daughter has cancer. If one of my children had cancer, I would wish it upon myself instead of them. I can't even imagine what my dad is going through. And I guess it's weird in a way how I'm coming to all of you, whom I don't even know, for moral support, but you're the only people who can relate to what I'm going through. You're the only people who will give me amazing, real advice based upon experiences and knowledge. Please give me hope and tell me that I really do have a real chance of surviving. I'm so scared.

[NHMike]

I'm so lucky to be on this forum. Thank you to everyone who has given me such great advice. Maybe one day I'll be able to pay it forward.

I have been having some really depressed moments lately because I'm so scared. I see all of these NED people on this site, and that gives me hope, but as I said in a previous post, I know that my perspective is skewed because people who aren't around anymore obviously aren't posting anything on this forum. I not only have my two beautiful children; I have my dogs whom I adore almost as much as my children, and I have online businesses that I wanted to pass on to my children one day. I don't know how those things would fare if I were gone. I have graduations and weddings to attend, grandchildren to hold in my arms, and maybe I can even fall in love in the future with a great man. I have so many things in my life that I want so badly to experience.

But most of all, what scares me and saddens me is what my children would go through emotionally if I didn't make it. I just lost my own mother in October, and while it was chilling and shocking and horrific, I made it through because I'm an adult and I have a strong mental constitution. Had I lost my mother as a child, however, it would have been the most indescribable nightmare I could have imagined. I don't know that I would ever have gotten over it. The pain would have been unreal. If my children had to go through that pain, omfg. And the other person who breaks my heart is my poor 82-year-old father. He just lost his wife of over 50 years, and now his daughter has cancer. If one of my children had cancer, I would wish it upon myself instead of them. I can't even imagine what my dad is going through. And I guess it's weird in a way how I'm coming to all of you, whom I don't even know, for moral support, but you're the only people who can relate to what I'm going through. You're the only people who will give me amazing, real advice based upon experiences and knowledge. Please give me hope and tell me that I really do have a real chance of surviving. I'm so scared.

Cancer is very scary stuff. One of my coworker's wife has stage 4 liver cancer and she's starting an experimental treatment this month. They went on a vacation trip because her doctors indicated that she should enjoy stuff now because her future was quite uncertain. Another coworker's lung cancer has spread to his spine after being under control for two years. He has lost some function to his lower body and he's out on disability.

I think that we've all thought about and taken action to provide the best that we can for our loved ones in case we are gone. This happens suddenly for some people so at least we have some amount of time to prepare them for it in case it happens. And sometimes you have to comfort your loved ones because of the grief and worry that they feel because you have cancer.

I went over my thread last night and I noticed the names that are no longer here. So yes; some of us don't make it. That's really sobering. The threads or links to those who are gone are pinned near the top. That can happen to us too but all we can do is fight to the best of our ability and that's what I see people doing here.

It's definitely easier to go through if you have people to talk to about it. I think that in-person may be better than online but online is really convenient. I was sitting at the Dana Farber Lab Waiting Room and they had a monitor that displayed the support group meetings for the various kinds of cancer and I know that there is a local cancer support group in my area. Those might be options for you if you need support in person. I do talk try to talk to people with cancer or spouses with cancer at the office.

[Jacques]

... I am having a scan in about a week from now...

By now you should have had your scan. What were the results of your scan? Also, when is your next review by Care
Oncology scheduled? Have you contacted them about your side-effects, and do they plan to make any changes to your COC protocol prescription? Have you sent them your recent bloodwork and recent scan results?

[TinaFish]

... I am having a scan in about a week from now...

By now you should have had your scan. What were the results of your scan? Also, when is your next review by Care
Oncology scheduled? Have you contacted them about your side-effects, and do they plan to make any changes to your COC protocol prescription? Have you sent them your recent bloodwork and recent scan results?

It's like the stupid leading the stupid ... when I went in for chemo on August 7, the nurse handed me a calendar that said that my scan was on the 13th. Well, it wasn't until the weekend that I realized that no specific time had been given for my scan. On Monday the 12th, I called my oncologist's office and inquired. The receptionist said, "Oh, you need to call the office where the scans are done." I hadn't been given that information either - the office's address or phone number. She gave it to me. I called and was literally waiting on hold for 20 minutes for a human being to just answer my call. I got really angry, called the oncologist's office back, and told them that someone really screwed up and I should not have to wait on hold for 20 minutes to find out when my appointment is!

The receptionist said she would call the scan office on my behalf, and then call me back. I heard from her about an hour later... she said she had been on hold for 45 minutes and finally someone answered the phone. The person informed her that no appointment had been made for me. WTF?? The receptionist also told me that I would need to call that office myself to schedule the scan. Whatever, but since I seem to be the only person in this chaos who has an IQ over 80, I should probably handle my own business.

Assuming I was going to be on hold for a torturous amount of time, I procrastinated and finally called them today. Surprisingly, they answered the phone right away. The receptionist was so rude. She kept stating that she needed my "provider" in order to schedule my scan. I told her that I don't know wtf a "provider" is, but maybe I could figure it out if she could tell me her definition of it. I don't think she knows the definition of the word "definition," because I was just going around in circles with her. Finally, we figured it out and she scheduled me for a scan on the 26th. And this time, I have a specific time and address too.

I'm supposed to have a Skype meeting with the Care Oncology doctor every three months (our next meeting is at least two months from now), but you're right, I do need to address my side effects with them. They make their own requests to obtain my medical records from my oncologist's office, so that's convenient for me. I do have 24-hour access to the Care Oncology nurses, and I will contact them, but I just attributed all of my side effects to the chemo, the reason for that being that during the days when I felt the worst, I didn't take any Care Oncology meds at all. I didnt want to aggravate my stomach. I didn't take any meds at all except for whatever I thought might help my stomach.

[TinaFish]

Can I ask you guys about CEA? How much weight does it carry? With mine being 22 last month and 11 now, I'm very confused because I've seen some signatures on this forum with CEAs in the triple digits. The fact that mine is low... I know that's a good thing, but what is the relevance?