Just got diagnosed - advice appreciated

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Mugenabe
Posts: 9
Joined: Sat May 30, 2020 6:38 am

Just got diagnosed - advice appreciated

Postby Mugenabe » Sat May 30, 2020 7:15 am

Hi everyone, I just learned about this forum and I have to say, reading stories from those who are successfully battling colon cancer has helped me get some confidence, thank you to all those who shared their positive stories. I was just diagnosed with colon cancer a couple weeks ago (40M). I just had the colectomy/resection last Thursday and waiting for the pathology results to be staged... This is the hardest thing I’ve had to bear in a mental and emotional sense. Some positive news is they did not see anything else during the initial CT scan, but I’m not sure if it was a full body scan. I can’t set up an appointment with an oncologist until I get the results (trying to set one up in Memorial Sloan Kettering). The waiting is very difficult. There’s been times where I feel like my life is over, I’ll never see my daughter grow up, and just really lost... reading all these stories of people with stage 3 and stage 4 surviving has given me hope!

If you guys don’t mind me asking, do you have any advice on what you did to help fight cancer? Did you just rely on treatments? Lifestyle changes? Diets? Supplemental medicine? Been trying to do research but there’s so much conflicting advice between the natural remedies and normal treatments... I know I have to give up or severely limit most things with processed sugars and processed meats, refined flours, lower red meats, etc but I also don’t think I can go full vegetarian. Eating different foods is one of the things I’ve enjoyed but will gladly sacrifice what I can to have the chance to see my daughter grow up... My wife (who has been very supportive) says I’m going a bit extreme with some of the things I’m thinking I have to do but I’m just trying to find ways to fight this thing inside me... I’m even torn now with needing to be in a low fiber diet after the surgery but a lot of the low fiber foods are what they say to avoid when you have cancer.. any advice is appreciated! It’s so hard not knowing exactly what to do and I feel so helpless...
5/13/20 colonoscopy, CT Scan - 5cm tumor found in sigmoid colon, no evidence in other organs, confirmed cancer
5/21/20 colectomy (partial resection) - waiting for staging
6/2/20 Pathology results 7/25 nodes positive T4aN2b
6/18/20 CAPOX 4 rounds CEA 2.5

DarknessEmbraced
Posts: 3463
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Just got diagnosed - advice appreciated

Postby DarknessEmbraced » Sat May 30, 2020 1:11 pm

I'm sorry for your diagnosis!*hugs* Waiting is hard! I had my colon resection on November 20th, 2014 and the pathology report wasn't back until January when I saw my surgeon. There is a doctor shortage here hence long wait times. I was lucky that I was diagnosed with stage 2a and didn't require chemo. I have been cancer free since surgery. I don't take any supplements. I have been pescatarian since the end of 2009. I eat fish and seafood but no meat. The list of foods I have to avoid since surgery is fairly long. I avoid them because they cause severe cramping and severe diarrhea. I keep a food diary to keep track of what I eat, my digestive symptoms and the medications I take for those symptoms. I hope your recovery goes well and that you won't have much longer to wait.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Mugenabe
Posts: 9
Joined: Sat May 30, 2020 6:38 am

Re: Just got diagnosed - advice appreciated

Postby Mugenabe » Sat May 30, 2020 1:47 pm

Oh wow, here I am stressing over 7-10 days, waiting months must have been nerve racking. I’m glad you have had a positive screenings so far. I am not the fittest but I think I was active enough (I practice Brazilian Jiu Jitsu a few days a week). I have to admit that I love having a bbqs and eating out, socially drinking etc so I know that has to change. My wife recommended to start a food diary, I should start it to be more aware of what I’m eating.
5/13/20 colonoscopy, CT Scan - 5cm tumor found in sigmoid colon, no evidence in other organs, confirmed cancer
5/21/20 colectomy (partial resection) - waiting for staging
6/2/20 Pathology results 7/25 nodes positive T4aN2b
6/18/20 CAPOX 4 rounds CEA 2.5

boxhill
Posts: 552
Joined: Fri Apr 06, 2018 11:40 am

Re: Just got diagnosed - advice appreciated

Postby boxhill » Sat May 30, 2020 4:43 pm

It usually doesn't take more than about 3-5 days for pathology results. I don't think they should make you wait so long. How long were you in the hospital?

" I know I have to give up or severely limit most things with processed sugars and processed meats, refined flours, lower red meats, " Well, some of that is actually a matter of opinion. For a while, anyway, you will need to eat a low residue diet, which means eating the things you supposedly aren't suppose to eat. I found that for quite a long time when I ate salad, beans, and other high-fiber things it went straight through me in an hour or less. And in identifiable form. :shock: When on chemo, I was actually advised by my NP to eat rare steak in the second week to improve my anemia. (And it worked.)

In general, it is a good idea for everyone to avoid consuming processed foods of all types. But you'll have to see what works for you, especially if you do chemo.

One of the hardest things about cancer, especially at the beginning, is dealing with uncertainty. When you get your pathology results and start putting together a plan, whether that be for further treatment or for surveillance, you will feel better. It is a huge blow to deal with at first. Best to you.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

Mugenabe
Posts: 9
Joined: Sat May 30, 2020 6:38 am

Re: Just got diagnosed - advice appreciated

Postby Mugenabe » Sat May 30, 2020 6:18 pm

boxhill wrote:Well, some of that is actually a matter of opinion. For a while, anyway, you will need to eat a low residue diet, which means eating the things you supposedly aren't suppose to eat. I found that for quite a long time when I ate salad, beans, and other high-fiber things it went straight through me in an hour or less. And in identifiable form. :shock:



I’ve been reading more of people’s stories in the forum and the more I do, the more I realize there is no magic bullet. Honestly, I was blaming myself and my diet for getting this. I don’t think it was terrible but I thought if I just ate less steaks, less wine, less desserts, stop eating processed foods (I loved eating spam :lol:), I can make this thing go away... but then I read about people who already had healthy diets and pretty healthy individuals and they still get it. I guess it was pretty silly of me to think it would be that easy. I know it won’t hurt to do all those things but it’s definitely not a cure...
5/13/20 colonoscopy, CT Scan - 5cm tumor found in sigmoid colon, no evidence in other organs, confirmed cancer
5/21/20 colectomy (partial resection) - waiting for staging
6/2/20 Pathology results 7/25 nodes positive T4aN2b
6/18/20 CAPOX 4 rounds CEA 2.5

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beach sunrise
Posts: 109
Joined: Thu Mar 05, 2020 7:14 pm

Re: Just got diagnosed - advice appreciated

Postby beach sunrise » Sat May 30, 2020 9:10 pm

Hi, since you are in limbo right now not knowing the stage and haven't met with an oncologist yet here's my suggestion: Expand bloodwork panels if/before you start chemo. You can research rp1954 and maia for valuable info about this important step for self advocating. Bring it up to the oncologist and if he elbows you, go out on your own to get them and learn how to read trends.
I wish you the best possible outcome there is!!! Good luck. Keep us posted please!
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surg 1-21-20 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj modFOLFOX6, cea 7
8 rounds 6-10/CEA 11.4, 4 more no oxa
6-17-20 CEA 11.1 AFP 11.2 CA125 25.7 CA19-9 9
MHL1+
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing Nagourney CI "Test failed, neo-adj chemorad did its job. Not enough cancer cells to test."

michelle c
Posts: 1898
Joined: Wed Dec 02, 2009 3:58 am

Re: Just got diagnosed - advice appreciated

Postby michelle c » Sat May 30, 2020 11:02 pm

Hi there,

I was you in 2009 and I’m still here! I have not given up red meat, I love it and it is very nutritious. I don’t believe it causes cancer but that’s my opinion. Probably best to limit refined sugar and refined grains, vegetable oils (not olive oil) and trans fats if you want to change your diet and if you consume a lot of it. Exercise is recommended too. I know it’s hard but try not to stress too much and stay away from Dr Google, it only heightened my anxiety. Best wishes to you
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

Mugenabe
Posts: 9
Joined: Sat May 30, 2020 6:38 am

Re: Just got diagnosed - advice appreciated

Postby Mugenabe » Sun May 31, 2020 4:22 pm

michelle c wrote:Hi there,

I was you in 2009 and I’m still here! I have not given up red meat, I love it and it is very nutritious. I don’t believe it causes cancer but that’s my opinion. Probably best to limit refined sugar and refined grains, vegetable oils (not olive oil) and trans fats if you want to change your diet and if you consume a lot of it. Exercise is recommended too. I know it’s hard but try not to stress too much and stay away from Dr Google, it only heightened my anxiety. Best wishes to you


Thanks Michelle. Yeah, I think the last few days I’ve calmed down a bit in thinking I have to basically turn vegan if I want to live. Dr google was starting to stress me out. It wasn’t until I started reading people’s stories on this form that I started having hope that there is a fighting chance, regardless of what stage they say I’m in.
5/13/20 colonoscopy, CT Scan - 5cm tumor found in sigmoid colon, no evidence in other organs, confirmed cancer
5/21/20 colectomy (partial resection) - waiting for staging
6/2/20 Pathology results 7/25 nodes positive T4aN2b
6/18/20 CAPOX 4 rounds CEA 2.5

boxhill
Posts: 552
Joined: Fri Apr 06, 2018 11:40 am

Re: Just got diagnosed - advice appreciated

Postby boxhill » Mon Jun 01, 2020 11:04 am

When do you have an appointment with your surgeon or whomever is going to go over your pathology report with you?

If you don't have an appointment booked already, CALL THEM and ask about your pathology results! And BTW, make sure you get a COPY of the pathology report. You will probably want to refer to it in the future. If it doesn't refer to the basic tumor testing: KRAS/BRAF/dMMR/MSSor MSI, ASK for it.

Personally, it never occurred to me to ask things like "what is my prognosis" or "how long do I have to live." And while I firmly believe in researching, I do't think those are the kind of things you should look for. I don't think they can honestly tell you, because everyone is very individual, treatment is changing, and they simply don't know. Putting together a plan for the next steps with your doctors, being prepared to discuss the pros and cons of those steps and the alternatives intelligently, and continuing to be an informed advocate for yourself is what I personally have found constructive.

There is no doubt that you can't do much until you have your staging and pathology results, although you could familiarize yourself a bit with the TNM system.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

Mugenabe
Posts: 9
Joined: Sat May 30, 2020 6:38 am

Re: Just got diagnosed - advice appreciated

Postby Mugenabe » Mon Jun 01, 2020 11:18 am

I had a meeting w/ my surgeon on Friday. He was hoping the results we be available by then but unfortunately they were not. Dr said it should be available in the next couple days and he will call me once he has them. Good news at least is the physical recovery is going well. Staples were removed and I haven't needed pain meds (alternating ibuprofen and acetaminophen) for a few days. Thanks for the tips boxhill on the next steps. There is definitely a lot to learn already without having to worry about what I don't know yet. I use to think all cancer was the same, chemo was just one type of medicine, and I believed those statistics w/ survival rates. I've learned a lot the past few weeks, and also learned you can really go deep into rabbit holes. Trying to filter out what's really useful is tough, but as I mentioned, this forum has helped a lot w/ that.
5/13/20 colonoscopy, CT Scan - 5cm tumor found in sigmoid colon, no evidence in other organs, confirmed cancer
5/21/20 colectomy (partial resection) - waiting for staging
6/2/20 Pathology results 7/25 nodes positive T4aN2b
6/18/20 CAPOX 4 rounds CEA 2.5

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horizon
Posts: 1539
Joined: Tue Apr 12, 2011 10:10 pm

Re: Just got diagnosed - advice appreciated

Postby horizon » Mon Jun 01, 2020 12:08 pm

Mugenabe wrote:Thanks Michelle. Yeah, I think the last few days I’ve calmed down a bit in thinking I have to basically turn vegan if I want to live. Dr google was starting to stress me out. It wasn’t until I started reading people’s stories on this form that I started having hope that there is a fighting chance, regardless of what stage they say I’m in.


It's so so hard at the part of the journey where you're at. Dr. Google caused me so much anguish. You've just got to hang in there. The low fiber diet you're on for a short time is a drop in the bucket for your eating for the rest of your life. I didn't do anything drastic. I was already a healthy weight and rarely ate red meat. I just try to be sensible with my diet. Everything in moderation.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

Mugenabe
Posts: 9
Joined: Sat May 30, 2020 6:38 am

Re: Just got diagnosed - advice appreciated

Postby Mugenabe » Tue Jun 02, 2020 3:52 pm

Well, my doctor called me today and gave me the pathology results... 7 out of 25 were found positive... I'm having them send me the report as well.
Anyway, not the news I was hoping for :| but I guess now I know and now I can move forward with the next steps. I'm trying to setup an appointment now with an oncologist. Memorial Sloan Kettering has been highly recommended by my friends/colleagues. Anyone have a particular Dr recommended? I heard Dr Leanard Saltz was good. Any other recommendations for hospitals or is MSK the place to go to? Thanks for any advice in advance!
5/13/20 colonoscopy, CT Scan - 5cm tumor found in sigmoid colon, no evidence in other organs, confirmed cancer
5/21/20 colectomy (partial resection) - waiting for staging
6/2/20 Pathology results 7/25 nodes positive T4aN2b
6/18/20 CAPOX 4 rounds CEA 2.5

User avatar
beach sunrise
Posts: 109
Joined: Thu Mar 05, 2020 7:14 pm

Re: Just got diagnosed - advice appreciated

Postby beach sunrise » Tue Jun 02, 2020 5:04 pm

Hi, now you know and can moving on it with a plan. I am also stage III. Research everything you can that relates to your stage/cancer and write questions down to go over with onc and surgeon. Yes, get in with an accredited cancer center. I went with a local onc and now getting second opinion at a recognized cancer center to make sure I am on right track or maybe need a different protocol.
Good luck to you! I will follow you, so update when you can.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surg 1-21-20 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj modFOLFOX6, cea 7
8 rounds 6-10/CEA 11.4, 4 more no oxa
6-17-20 CEA 11.1 AFP 11.2 CA125 25.7 CA19-9 9
MHL1+
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing Nagourney CI "Test failed, neo-adj chemorad did its job. Not enough cancer cells to test."

kiwiinoz
Posts: 1150
Joined: Thu Jan 03, 2013 11:44 pm

Re: Just got diagnosed - advice appreciated

Postby kiwiinoz » Tue Jun 02, 2020 6:23 pm

I think you make your decisions based on your mental state and your personality. I love to be in control of my life (hard in the COVID-19 world) and with cancer that, for me was not possible. I found that I could control my diet and my exercise. I felt at the very least I could give myself a better health outcome, irrespective of cancer via my diet, and that I could give myself a better health outcome with cancer via exercise. Exercise was, and still remains, a big part of my emotional state. I have a crap day, I exercise to feel better, I have a great day so I exercise etc (I actually exercise very early in the morning but I am sure you get the point).
I have seen those that look after their diets have bad outcomes and I have seen those that continue to eat highly processed foods and carbs have great outcomes so I am not saying that there is any magic bullet, just simply that if something helps you mentally and emotionally, and it may help your health at the same time then go for it.
You are just at the start, you've had a CT Scan, good results, you have the pathology report next to assess what the surgeon found in surgery and then you get to meet an oncologist to see what the next step is. You control absolutely none of that so it is natural to freak out man.
Just relax as much as you can, don't over think it and then take each step at a time.
Let us know what your pathology report says. When do you think you can get it?
Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

Mugenabe
Posts: 9
Joined: Sat May 30, 2020 6:38 am

Re: Just got diagnosed - advice appreciated

Postby Mugenabe » Tue Jun 02, 2020 10:45 pm

Thanks Kiwi, that is great advice. Every step of this journey has been an emotional roller coaster... and I’m sure this ride has just begun. I was so fixated in trying to find that magic bullet, which I’m sure a lot of people here went through... but I love your outlook on the diet/exercise thing. Regardless of the outcome, I do want to stay healthy and even be healthier pre-diagnosis!

With the pathology results, I was actually able to obtain them on the hospital’s online portal. I’m not really able to make sense on a lot of the findings, but as I mentioned they did talk about 7 of the 25 nodes being positive. The official staging is p4aN2b, this I was able to find out what it means. The type is Adenocarcinoma and the grade is moderately differentiated,G2, not sure what this means.

Edit: I found this site to explain some of the things
https://amp.cancer.org/treatment/unders ... colon.html

I guess I’ll read through it to understand more what they found.
5/13/20 colonoscopy, CT Scan - 5cm tumor found in sigmoid colon, no evidence in other organs, confirmed cancer
5/21/20 colectomy (partial resection) - waiting for staging
6/2/20 Pathology results 7/25 nodes positive T4aN2b
6/18/20 CAPOX 4 rounds CEA 2.5


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