Newbie - Preparing for Battle

[BeansMama]

Hi Mike - wow, just out of surgery and online posting? You're good!
I hope that your surgery went well and that you're comfortable. I totally agree about relying on God. I'll say some prayers that your surgery results go well and healing is quick.

Hi Beans - thanks so much for your thoughts. I really am trying to balance my search for information so that it doesn't cross the line to obsessing. I get it that the scan may not have caught it, but that doesn't give me a lot of confidence in future scans. Just something for me to keep in mind, I guess.

Hi Andrea - thank you tons for your kind thoughts. I agree, the hardest part will probably be that I am a Mom and want to be a good Mom through everything. I know there will be times when I'll have to be selfish to be sure I'm taking care of myself, but don't want to waste 1 precious second. And you're so right, the word cancer just invades every single thought that you have after hearing it. Even making a wise-crack about someone on TV, I thought, "gee, should I really spend whatever time is left making wisecracks like that?" Ugh. On the upside, I'm being very honest with people around me, rather than what I would probably prefer to do which is not tell anyone. I realize this is too big for that mentality, and that I'll need all my resources. So hopefully I'm being honest with myself.

Weird fact, when I told my dad, he revealed to me that he'd had a colonoscopy a couple years ago, and they told him they thought he had cancer. He had surgery, and the surgeon told him they thought it was cancer, but results from the tissue samples said no cancer. I don't know what's more strange. That it happened, or that I never knew. I like to think something similar could happen for me, but I'm not counting on it.

I'd be glad to message you privately as soon as I can. Right now I'm still in my new member probation period, but I'm sure with all the posts I'll be changing over soon.

Again, so much thanks everyone. Feeling like a frightened rabbit takes on a new meaning when you find a sanctuary built just for frightened rabbits.
--Tracy

Tracy,

I totally understand searching for information and trying not to obsess about it. But the simple fact is you will obsess about it. Even now, when I know what I am facing I obsess about it.

I worry constantly about how my illness affects my daughter. I try to keep things as normal as possible but the sad fact is things have had to change. I have had so many complications she's used to seeing me in the hospital, she's had to become more of a helper at home, she does like being on "mom duty" because she feels like she is in charge of me though. It bothers me that she has had to grow up pretty fast in the last few months, but I try to think of it in a positive way. She's learning that we help family and others when they need it and that with determination we can do anything we put our minds to. She's seen me overcome a lot already, and I have promised her that I'm not going to die so I better try my hardest and then some to beat this.

Things don't always go as I have planned - and that planning nature of mine gets me in trouble with this disease. It's one of the reasons I research and obsess and try to find new or different treatments.

I wish I could tell you it goes away or gets easier, but at least for me it hasn't and I'm not sure it ever will.

Don't lose confidence in future scans, I have found PET scans are pretty dang accurate, and it all depends on who is reading the scan. Some doctors are better at it than others. I have had I think 7 or 8 CT scans since that first one (I have lost count!) - the others with better interpretations. I also think knowing what is there helps them interpret other areas of the scan.

[Chayo]

I too am mid-forties with a young child (boy, age 7). I am stage II and had significant pain inthe months leading up to my diagnosis and surgery, so I can tell you that pain can occur even at early stages. As others have noted, degree of penetration into the wall is what matters for staging, not overall size of the mass.

I am a researcher at heart, and to me, knowledge is power. I realize that not everything I read is accurate or current, so I don't obsess over single facts or statistics. So I read *everything* between the time of my diagnosis and meeting my oncologist. To me, it's all information-gathering, and I'd rather go in and be able to ask all my questions about what is and is not reliable info rather than just waiting helplessly.

Wishing you the best on your journey!

[kellywin]

Welcome Tracy. I don't have much to add but to say hi. I think this point is the hardest part. The not knowing. I know how your mind goes, thinking about every possibility, but honestly, there's really no way to know without the pathology and the scans. Try and not overthink, from what I've seen everyone's symptoms are different. Hopefully you'll have the results soon and you can feel a little comfort in knowing what you're dealing with and what the plan is.

Thinking positive thoughts for you.

...Kelly

[WriterGirl1969]

Tracy,

I totally understand searching for information and trying not to obsess about it. But the simple fact is you will obsess about it. Even now, when I know what I am facing I obsess about it.

I worry constantly about how my illness affects my daughter. I try to keep things as normal as possible but the sad fact is things have had to change. I have had so many complications she's used to seeing me in the hospital, she's had to become more of a helper at home, she does like being on "mom duty" because she feels like she is in charge of me though. It bothers me that she has had to grow up pretty fast in the last few months, but I try to think of it in a positive way. She's learning that we help family and others when they need it and that with determination we can do anything we put our minds to. She's seen me overcome a lot already, and I have promised her that I'm not going to die so I better try my hardest and then some to beat this.

Things don't always go as I have planned - and that planning nature of mine gets me in trouble with this disease. It's one of the reasons I research and obsess and try to find new or different treatments.

I wish I could tell you it goes away or gets easier, but at least for me it hasn't and I'm not sure it ever will.

Don't lose confidence in future scans, I have found PET scans are pretty dang accurate, and it all depends on who is reading the scan. Some doctors are better at it than others. I have had I think 7 or 8 CT scans since that first one (I have lost count!) - the others with better interpretations. I also think knowing what is there helps them interpret other areas of the scan.

Beans, thank you so much. That's a really helpful way to look at this. I worry about it being hard on my soon to be five-year-old son, but the truth is that I will have lots of opportunities to teach him about trusting God and having faith no matter what. I guess that's a pretty important thing to give him. That really lifts my heart.

I think you're right - the obsessing part just happens. It's like the idea of cancer is just as invasive as the cancer itself. Just having you all to hear from and talk to has really kept me stabilized. I've talked about a lot of this with Hubby too, who is of course going through his own set of fears and worries right now. I told him that he should joint the group to get some support from the care-giver POV. I really can't say thank you enough.

[WriterGirl1969]

I too am mid-forties with a young child (boy, age 7). I am stage II and had significant pain inthe months leading up to my diagnosis and surgery, so I can tell you that pain can occur even at early stages. As others have noted, degree of penetration into the wall is what matters for staging, not overall size of the mass.

I am a researcher at heart, and to me, knowledge is power. I realize that not everything I read is accurate or current, so I don't obsess over single facts or statistics. So I read *everything* between the time of my diagnosis and meeting my oncologist. To me, it's all information-gathering, and I'd rather go in and be able to ask all my questions about what is and is not reliable info rather than just waiting helplessly.

Wishing you the best on your journey!

Chayo, I have to say thank you thank you thank you. The pain has really had me spooked more than anything. As a writer, I have a very active imagination. Getting perspective is key. I have my appointment with my referred to Board Certified Colon-Rectal Surgeon on Wednesday, so I suppose I'll find out more info soon. Going into that armed with some of the advice and info from this site makes me feel so much more prepared and better able to process what will be happening. Thank you for sharing that with me - it really is so much appreciated. Trying to keep breathing deeply, in through the nose, out through the mouth. <: -)

[WriterGirl1969]

I have to agree on the abdominal pain. In my case I felt pressure in exact location of my large polyp. I told my mom few times that I feel that I have a golf ball in my stomach. Hard to believe that I was actually correct. I would never imagine...

I think the time until proper disgnoses is the worst. That's why I am having the surgery. I can't live with the fact that I can't be staged. I think you will feel better after surgery when you have a plan. My surgery is March 22.

From my research online we could win this fight even as stage 4. We will just keep pushing forward and never give up. When I think about it. You could be killed in a car accident tonight. It's just life... You and me have a chance to fight and win!!!

I gave up meat expect chicken once in a while. Tonight I had a steak... Ha, ha and red wine!!! I think once in a while to have red meat is ok. Just not daily...

I do feel that I am obsessed with finding info online. But slowly trying to stop. This weekend was the 1st I didn't spend searching and searching... I am trying to set up a plan for each day. My mom is a 15 year breast cancer survivor. She gives me a lot of power and support. She has promised to be with me every step of the way...

Thanks Andrea. Like you, I think I'm feeling the spot of my mass (not a polyp in my case) and where it's constricting my colon, although I suppose it could also be the diverticulitis. I just need to try not to overthink it. I love that you had steak and wine. LOL I took the opportunity after my "prep" to try to give up my Dr. Pepper habit. I'm caffeine clean since 3/2/16.

That's wonderful that you have a Mom who has been through it and can be such a support. I will add my prayers for you (and everyone I've met here) and hope that you and I can both be NED soon!

--Tracy (trying to pick up the lingo).

[Jacques]

... (trying to pick up the lingo).

Tracy -- If you are trying to pick up the lingo, you could start by reading a thread by our chief lingo-ist here. It might take you a while to learn all of these new terms, however...

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=11940&p=89776#p89776

[WriterGirl1969]

Thanks Jacques.
I had seen the tech terms, but not these.
I fit into the stimagination really well. Especially today. I got new blood results from GP and in addition to steadily dropping iron counts, I now have elevated liver function. I had this 3 years ago when I had colitis related to CMV, but now that I know about the mass and potential CRC diagnosis, I am worried this indicates liver met. And maybe the elevated function from 3 years ago was more than they realized. I'm totally over-thinking everything today, as I have my first meeting with surgeon tomorrow afternoon. On the good side, she is board certified. I'm just feeling scared silly today.
--Tracy

[WriterGirl1969]

Unfortunately got the confirmed diagnosis today. Requested copy of path report for details. CT scan next Wed, flex scope by surgeon next Thurs. Then hopefully a plan of action. Fighter stance. Sword up.

[DarknessEmbraced]

Good luck with your ct scan and sigmoidoscopy!*hugs* We are here for you!

[WriterGirl1969]

Thanks - I just got my surgery date also. 3/31. Onward, and upward!

[WriterGirl1969]

Oh, and first meet with Oncology tomorrow too. Not sure what we're doing other than discussing potentials, since we don't even have the CT scan yet, but I'm going to use it as an opportunity to "interview" this Dr. If anyone has thoughts or points I should not for an initial oncology meeting, I'm open to all info.

[Jacques]

Oh, and first meet with Oncology tomorrow too. Not sure what we're doing other than discussing potentials, since we don't even have the CT scan yet, but I'm going to use it as an opportunity to "interview" this Dr. If anyone has thoughts or points I should note for an initial oncology meeting, I'm open to all info.

Several points:

• When they decide to start selecting a chemotherapy regimen for you, they will probaby be consulting the current "standard of care" for Colon Cancer, which is presented here:
  
  NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) Colon Cancer, Version 2.2015
  https://www.tri-kobe.org/nccn/guideline/colorectal/english/colon.pdf
  
  You can go through this document yourself to try to see where your case might fit in the general scheme of things. There will be several first-line options for you, but you won't know which section applies to you until you get your CT-scan/MRI results.
  .
• If your oncologist ever mentions oxaliplatin, then try to see what kinds of options there are for oxaliplatin desensitization, or dose-reduced oxaliplatin administration.
  .
• Before your meeting with the oncologist you can check to see if your oncologist is a Board Certified Medical Oncologist. Also, you can check to see if there are any on-line ratings given by past patients on http://www.healthgrades.com . The links for doing this are given in the post below (use "Colon Cancer"as the diagnosis and "Medical Oncology" as the specialty):
  
  http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52349#p410280
  .
• If you want suggestions for questions to ask, you can have a look at some of these websites:
  
  A checklist of questions to ask your doctor or nurse
  http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/chemotherapy/understandingchemotherapyaguideforpatientsandfamilies/understanding-chemotherapy-questions-to-ask
  
  Chemotherapy and You -- Questions To Ask about Chemotherapy (pp.10-11)
  http://www.cancer.gov/cancertopics/coping/chemotherapy-and-you.pdf
  
  Questions for Your Doctor
  http://chemoth.com/questionsdoctor
  
  Questions To Ask Your Oncologist About Your Treatment
  http://www.aicr.org/assets/docs/pdf/cancerresource/questions-for-oncologist.pdf
  
  Making the Most of Your First Appointment with Your Oncologist
  https://www.mskcc.org/blog/making-most-your-first-appointment-your-oncologist
  
  Ask the right questions: Get the most out of your oncology appointments
  https://www.mdanderson.org/publications/cancerwise/2012/03/ask-the-right-questions-get-the-most-out-of-your-oncology-appoin.html
  
  7 Key Questions to Ask Your Oncologist
  https://health.clevelandclinic.org/2014/07/seven-key-questions-to-ask-your-oncologist/
  
  20 Questions for Your Oncologist
  http://www.chrisbeatcancer.com/20-questions-for-your-oncologist
  
  .

[WriterGirl1969]

Thanks Jacques. This was great information.
I had a really good meet with the oncologist today. Because I already have a pretty severe peripheral neuropathy in both feet, he said right off he'd want to try to stay away from anything with oxa in it. He was very interactive and informative, and impressed with all the knowledge I've gotten out of this group.
It's shaping up to be a great team. It's really helped me to feel a bit more confident in what I'm facing.
Along with all the very kind and helpful folks here.

Thanks everyone!!!
Tracy

[DarknessEmbraced]

Glad that your oncologist appointment went well and that you have a surgery date!*hugs*