My story

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henny-crc
Posts: 11
Joined: Mon Sep 14, 2020 6:09 pm

My story

Postby henny-crc » Fri Sep 18, 2020 6:30 am

Greeting to all forum members. Ive been reading this forum daily for a week now, and decided to share my cancer story today.
Im 23yo diagnosed with colon cancer two months ago.
Excuse me in advance for my broken english, because im actuallly froom Russia, just couldnt find any useful colon cancer forum in my language. I can actually read and understand even the most complex scientific research in english, but my writing and grammar sucks.
My timeline:
March:stool problems, mucus and occasional blood
May:Colonoscopy, suspicious polyp, biopsy:non cancerous.
June:Polyp excision, pathology after 2 weeks, tumor in situ, well diff adenocarcinoma, no signs of cancer in abd wall. Huge shock, cancer in 23.
But my local onc told me that there was no risk factors, im cancer free now and just need to attend check ups once in a half year
July:Drive to a bigger city, consultation with an experienced colorectal oncology MD, he insisted on doing a prophylactic LAR surgery on the excision spot
Surgery in a week: all good, fast recovery
I was very positive and happy that i caught cancer this early and left it no chances with excision, thinking about this as timely a sign to change my life habits, that i dodged the bullet.
Two weeks later: pathology report. 5 nodes positive out of 14, stage 3, t1n2a, mucinous ac. World fell apart around me. Was close to a suicide attempt this day.
Didnt think about a possibilty of dying soon ever before, and now it was present. Crushed, depressed, crying for days.
Next week: ultrasound, mri, chest ct. It was an unbelievably scary day. Nobody didnt even thought about possible mets before, and it was a real threat now. I was not ready for a news like this. All clear, thank god.
August:Signed up for chemo, xelox scheme, almost no side effects after first 2 days.
Did my research on google, it actually got my hopes up.
I was actually stage 3A at least, statistically 75 to 90% surviving without relapses. I started living my life close to usual, eating well, meeting with friends etc.
Few days ago: pathology re-review came in from my local hospital. They told me that original report missed a lot of info, it was just node number and cancer type, and asked to re-reviewed.
I googled things from their review, and, oh god, they found everything wrong that they could have possibly found in it. Extracapsular invasion, two tumor nodules with perineural invasion and suspected venous invasion, and even a fucking signet ring component in my mucinous carcinoma. Everything just screams bad prognosis.
This review just finished me psychologically. My 90% chances turned out to be a self induced lie. How can it be so bad? Am i really gonna die from cancer now?
Cant restore after it to this day.
Spending days from dusk till dawn just googling cancer research, reading cancer forums and crying. Feeling myself completely dead inside.
So, what should i really do from this point of time?
How can i try to restore psychologically from all this bad news?
How to live with knowledge that it is highly unlikely that i would see my thirties?
How do i attend my scans?
The whole thing feels like a nightmare rollercoaster now, with highly unlikely negative outcomes coming one after another.
Dx 06/20
23 yo
Stage 3A
T1N2a

User avatar
beach sunrise
Posts: 356
Joined: Thu Mar 05, 2020 7:14 pm

Re: My story

Postby beach sunrise » Fri Sep 18, 2020 3:49 pm

Hi, you are so so young!!! That is a triple plus for you in beating this!!!
Research all you can find to find doctors to help you with curative approaches and don't take NO for an answer. Keep advocating for yourself!
I didn't find this sight until after neoadjuvant and surgery. I missed many opportunities because I was not as informed as I should have been. Cancer is scary and I just followed along trusting until onc said one day "It would be better if we could put cancer patients in a coma to treat them." Just Wow!!! Opened my eyes that I better do some homework and find better support. It takes a minute but you will get there!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug. Adding Everolimus soon.
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Nordy1
Posts: 44
Joined: Tue Oct 02, 2018 11:45 pm

Re: My story

Postby Nordy1 » Fri Sep 18, 2020 11:40 pm

Hello Henny

I’m so sorry you are going through this - it sucks and you are far to young. There are some wonderful people on this forum that are very good at sharing information and support and you do need support.

When going through chemo I would try to sit by a new person each infusion and ask their story and there is some truly remarkable stories. Stage 4 with little chance but they were still with us 10 years later. Google is wonderful and terrible At the same time. Just remember each study is several years old and treatments are evolving every year.

Take some time to read through the forum here and you will find comfort.

Take care
Nordy1
jan 2018 emergency room via ambulance rectal bleeding event
dx Feb 2018 sigmoid adenocarcinoma 2.5 cm, 3 small extranodal foci resected march 2018
stage 3A T1 n1c
multiple indeterminent nodes in liver, lungs and kidney
11 rounds folfox with oxyplatin stopped with full nephropathy of hands and feet
currently waiting next scan in Feb. 2019

User avatar
Green Tea
Posts: 292
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: My story

Postby Green Tea » Sat Dec 19, 2020 3:09 pm

henny-crc wrote:Greeting to all forum members. I've been reading this forum daily for a week now, and decided to share my cancer story today.
I'm 23yo diagnosed with colon cancer two months ago.

Excuse me in advance for my broken English, because I'm actually from Russia, just couldn't find any useful colon cancer forum in my language. I can actually read and understand even the most complex scientific research in English, but my writing and grammar sucks. coming one after another.

Hello Henny -
I just now noticed that you are from Russia. I was wondering if you have looked into any of the Russian-language on-line patient leaflets that Memorial Sloan Kettering Cancer Center (MSKCC) offers? If so, what do you think of the quality of their Russian translation, and do you think that these leaflets would be a good resource for people like you? For example:

About your Low Anterior Resection Surgery
https://www.mskcc.org/ru/cancer-care/patient-education/about-your-low-anterior-resection-surgery

User avatar
beach sunrise
Posts: 356
Joined: Thu Mar 05, 2020 7:14 pm

Re: My story

Postby beach sunrise » Sun Dec 20, 2020 12:45 pm

Henny, I sent you a PM about supplement list. And for starters you could go to LEF.org to see the cancer protocol adjuncts they recommend. Its a very good start.
Merry Christmas to you and family!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug. Adding Everolimus soon.
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

henny-crc
Posts: 11
Joined: Mon Sep 14, 2020 6:09 pm

Re: My story

Postby henny-crc » Sun Dec 20, 2020 5:48 pm

beach sunrise wrote:Henny, I sent you a PM about supplement list. And for starters you could go to LEF.org to see the cancer protocol adjuncts they recommend. Its a very good start.
Merry Christmas to you and family!

Thank you. Merry christmas to you too.
Dx 06/20
23 yo
Stage 3A
T1N2a

Rock_Robster
Posts: 529
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: My story

Postby Rock_Robster » Sun Dec 20, 2020 7:22 pm

Hi Henny, it’s a late response but better than never I guess.

One phrase from research I hung onto: “the presence of poor prognostic factors does not preclude a favourable outcome”. The point is these are all just statistical indicators, NOT predictors.

I was initially staged as stage IVa, with an NRAS mutation, EMVI+, LVI+ and a T3b tumour. Obviously none of these things are good. However the most important part by far - I was able to have surgery. I’ve been lucky enough to be NED for a year now, without any further treatment. In spite of the features you remain stage 3 which is a *massive* difference in outcomes compared to the later alternatives. I know it’s hard but sometimes we need to remember to focus on what *isn’t* going wrong (which as my oncologist reminds me, is actually a lot), and focus on the positive aspects (relatively speaking!) of our diagnosis. Also, making sure we put our energy into the things we can control at any given time.

Merry Christmas and good luck!
Rob
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1, Dec-20: 2.3
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (CT/PET/MRI) - latest Dec 2020
07/20 Clear scope

Lee
Posts: 6200
Joined: Sun Apr 16, 2006 4:09 pm

Re: My story

Postby Lee » Sun Dec 20, 2020 10:08 pm

I am going to give my 2 cents.

One thing I've learned through the years, people who are actively involved in there treatment/plan tend to have better outcomes than those who choose to do nothing. It's like you have a higher % of beating this cancer.

And many of the death stats on colon cancer, many of those people were old, while they had colon cancer, in many cases, it was some other natural causes that they died from, heart attack, etc. Not colon cancer.

Know in your heart, you can beat this.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

utahgal7
Posts: 40
Joined: Fri Sep 11, 2020 12:04 pm

Re: My story

Postby utahgal7 » Mon Dec 21, 2020 11:33 am

Henny,

Welcome! I am sorry that you find yourself amongst the rest of us with a cancer diagnosis. I agree with the previous posts. Try not to think about the worst possible outcomes. I know it's hard, but please try! :) Also, don't look at all of the statistics on google, it is too depressing. Distraction is key, my friend. Try to find activities that you enjoy and GO DO THEM! It may take your mind off your worries. Also, try to get daily exercise (if possible), and try to get at least 8 hrs. of sleep each night.

Here's a tip that my husband is always telling me. "Don't think the worst until you have been told the worst by a medical professional." Sometimes our minds play tricks on us and we assume the worst. Usually things turn out better that what we originally feared.

Good luck to you & Happy Holidays,

Paige
02/20 Rectal Cancer dx - 2 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9
04/20 ST Radiation
04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver;
10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait)


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