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Early Age Onset Stage IV CRC

FarmLife4
Posts: 9
Joined: Dec 2020

Hi,

I am new to this group, looking for those who are considered to be the young, early onset group to share experiences and support.  My story is, I just turned 44 in Nov. and found out in Oct. that I have colon cancer with advanced mets. to the liver.  There are tumors in both lobes and every segment of my liver.  I had no GI symptoms but had about 6-8 weeks where my appetite decreased, was nauseated when I ate fatty foods and had discomfort in my upper abdomen, I thought I had a gallbladder issue, turns out it is CRC.  I had a physical with my Internal Med. Dr. in March and Gyn. in June all bloodwork and exams were completely normal.  I thought I was healthy, I workout, eat well, not overweight so I was completely caught off guard.  Ironically, and the Dr's don't believe it is related but my Mom was diagnosed with Breast Cancer at the same age as me and passed at 52.  I am not a surgical candidate at this point because I have far too much liver involvement.  I have gone thru 4 chemo. sessions of Folfox with Avastin and after last treatment I really started to experience the fatigue and just not feeling normal.  I have experienced neuropathy from the first treatment particularly in my hands amd my mouth/throat has this strange numb feeling which is extremely aggravating.  Anyway, I am trying to stay very positive because someone has to be a part of the small statistic that lives to five years or longer.  Looking to share experiences and encouragement with others.

Trubrit's picture
Trubrit
Posts: 5336
Joined: Jan 2013

 Anyway, I am trying to stay very positive because someone has to be a part of the small statistic that lives to five years or longer. 

This is exactly how I decided to look at things, when I got over the shock of diagnosis.   There is no reason why you can't be in that group of statistics - not that we like to pay much attention to statistics, but it is fun when you are on the top side of things. 

We have many forum members in their 40's, who will pop in and out of the forum, and reply, who can help you better than I can, as my situation was a little different. 

I did want to welcome you, though, and let you know that your postive outlook will help, as you make your way through this journey. 

Be sure to keep your Oncologist informed about your neuropathy, as you do not want it to get out of hand.  I did, and now I sit here, seven years from treatment, with neuropathy issues in hands, feet and calves.  Best to nip it in the bud, before it gets too bad. 

Be sure to drink warm liquids and eat room temp or warm foods. That should help the mouth and throat problem.  You will be happy to know that, that part goes away, sometime even before treatment has finished. 

Stick with us, and we'll stick with you.  It is a tough journey, but you are amongst fellow travellers, here on the forum.

Tru

FarmLife4
Posts: 9
Joined: Dec 2020

Thank you so much for responding and the support.  I will keep my Dr. informed of the neuropathy.  They don't seemed concerned as much about the neuropathy as long as I am not experiencing dexterity issues, but the long term impact is concerning.  I live off of Figi water at room temperature which is super soft and smooth and hot tea.  Hearing from other survivors provides the much needed Hope!

Real Tar Heel
Posts: 140
Joined: Nov 2019

Hi, sorry to have you join us on a down note, but we will try to be helpful.

I was not diagnosed when I first started experiencing problems because I had not turned 50. too young for colon cancer! Don't need a colonoscopy. I might possibly have avoided a lot of drama and pain if they'd listened to me, but that's neither here nor there now.

You can check my about page for the details but I am like many, IV and had some liver mets. I've had three surgeries (partial colectomy, liver ablation and partial resection). I had several months of FOLFOX. FOLFOX was the worst. At first I treated it like it was nothing and then within a couple of months all manner of bad things started to affect me. It has been 9 months since the last dose of 5-FU (got off Oxy early). My neuropathy in the hands went away within a few months, but I am still a little numb between the toes.

Given that my next visit to the scary old scanner is in January, I will hit the two year mark at that point. I'm hoping that the last resection did the trick but it's all a roll of the dice innit.

I didn't know when I was diagnosed but my father's side of the family has a significant history of cancer, colon cancer specifically. His oldest sister had the most similar diagnosis, CRC spread to liver. She's still alive after 9 years, one more and it will be deemed a cure. Some people are out there making it. I think perhaps we can hang on until they discover a cure. New things are happening on the immunotherapy front faster than ever.

Again, welcome.

FarmLife4
Posts: 9
Joined: Dec 2020

Thank you for the welcome and survivor stories...great to hear.  I'm assuming you live in NC given your forum name.  I live in NC as well but sorry we are NC State fans!  I'll check out your page.  Thanks 🙂

Real Tar Heel
Posts: 140
Joined: Nov 2019

Only lucky enough to attend school there, never lived there. I won't make any farmer jokes on here, okay?Laughing

FarmLife4
Posts: 9
Joined: Dec 2020

Ha ha. I don't know if I would call that lucky, jk. Hey, if you like to eat you better thank a farmer. Wink

Annabelle41415's picture
Annabelle41415
Posts: 6652
Joined: Feb 2009

Welcome to the group and sorry that you had to join us.  Watch the neuropathy as it is cummulative and sometimes it can have long terms effects.  If it continues to bother you, make sure you stress to your doctor that it is becoming a problem.  My diagnosis was at 50 so although not young, not real old either.  You have joined a great group and there are many on here with much knowledge.  Please come back here for support whenever you need to.  Wishing you the best.

Kim

beaumontdave's picture
beaumontdave
Posts: 1101
Joined: Aug 2013

Welcome to the forum, my stories on it's page, but I was 49 when it went down, no symptoms, save little traces of blood in my stools, 2 months before diagnosis. The only other thing was my appendix acting up. I didn't know what is was, but the seatbelt was irritating me when I drove. That's it. My dad was 80 and had been diagnosed that 2 months before, but his was caught at stage 2. Mine was just one big mass in the sigmoid section, they got it, the appendix, and a bellybutton hernia I didn't register at all.  I did the FOLFOX, came through fairly well, and had 3 masses show up a couple years after. The rest is in my story, but I'm 6 years plus NED and 13 beyond diagnosis, if it helps to hear. You have bigger fight, but the stories are here about folks with many mets in their liver, who are now NED and living way beyond that awful 5% catagory, give it no heed. Just keep the faith, and listen to the good stories. That, and love got me through an awful lot.....................................Dave

FarmLife4
Posts: 9
Joined: Dec 2020

Thanks for sharing your amazing survival story.  Congrats to you.

sgold88
Posts: 28
Joined: Oct 2020

If you look at my posts, you'll see (in a nutshell) my wife was dx'd with CRC at 39 yrs old. Had tumour removed. Then after 4 few chemos, discovered two liver mets. They removed the two mets and she did 8 more chemo sessions (FOLFOX). Here we are 1 yr after the liver surgery and last chemo in May 2020 and she is NED thanks Gd. She has had 4 scans in 2020 and all clear. We recognize it's just year 1 and want to get to year 5 (and more!) but what I've discovered, is that the small statistic includes ALL ppl in stage 4 category, regardless of age, lifestyle, pre-existing conditions, number and size of tumours and #/size liver mets. At your age and given your otherwise healthy lifestyle, know that the statistics may be WAY higher in your favour than the "small statistic" you mention in your post, which represents ALL cases. Stage 4 is NOT a death sentence. So many people on this site who have recovered and now living normal lives (the mental part isn't easy) are not posting often b/c many just want to go on and "forget" the nightmare. I am one of them. My wife doesn't even know I post on this site. it's my private escape for support. I've learned to compartimentalize the ordeal and escape, but of course it will always be on my mind. Point is there are wonderful stories of survival out there. More than you think - especially as it seems you have many factors going for you. A positive attitude DOES make a difference - whether it's 1% or 10% better chances, it absolutely makes a difference. Be well, and always rely on this board for support. It continues to help me all the time.

FarmLife4
Posts: 9
Joined: Dec 2020

Thank you so much for sharing it absolutely provides me with comfort and hope.  Sorry to hear of your wife's diagnosis she's younger than me, just amazing all the young folks impacted.  So happy to hear how well she is doing.

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