30 y/o just diagnosed - final update at end

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LKGower
Posts: 275
Joined: Fri Jan 11, 2013 4:23 pm
Location: Sydney, Australia

Re: 30 y/o just diagnosed

Postby LKGower » Sun Nov 10, 2013 8:04 pm

Hi kimmi,

I am sorry to hear you are having to go through this as well. You have found the right place for support though :)

I too was diagnosed last year with stage iv age 28. It's been a long journey and I am still fighting but I still believe its only early days and i do think i still have a shot at getting better even if statistics suggests otherwise! So many people beat this awful disease nowadays.

You just have to try remain positive and take each day as it comes.

Lisa
Dx 10/12 @ age 28 Stg. IV CRC spread to both ovaries, bladder and liver
Surgery 11/12 - 8/16 LN positive
9/13 Liver resection & RFA - 1/1 LN positive
10/13 boo its back already! Back to chemo

Kimmicita
Posts: 17
Joined: Sun Nov 10, 2013 6:47 am
Location: Vancouver, BC

Re: 30 y/o just diagnosed

Postby Kimmicita » Mon Nov 11, 2013 9:06 am

Thank you so much everyone for all the great advice, information, stories, and encouragement. I know you all know personally how much these words mean.

I am (of course) still having ups and downs, but your words have helped immensely when my mind veers toward doom and gloom. I'm trying to focus on the positives: I'm young, strong, active, and (otherwise) healthy, I have only the one symptom (occasional, moderate abdominal pain), and have only been feeling the pain for a few months. I know it's going to be hard, but I WILL beat this. There is no other option. Tomorrow the fight starts, and I am beyond ready.

I'm trying not to beat myself up about missing the follow up colonoscopies, but that part is hard. This afternoon I'm going to hang out with my best friend, and then the five of us who know are going to get together for dinner. I've managed to avoid telling my parents, but we'll see how long that lasts. I know firsthand that the CC diagnosis minus any other info sends a person into a tailspin, so I don't want to do that to them. If things get rolling this week (and they should, right???), I'll call them so they can come out earlier than they planned (Friday).

Once again, I deeply appreciate all your personal stories. I can't thank you enough. I'm almost through this truly nightmarish weekend, and I don't know if I could have done it without this board. Thank you.
1995 Dx UC
11/8 Dx CC (splenic flexure mass)
11/15 biopsies (-) cancer/pre-cancer, CEA >0.5, clear CT, local nodes lit up
12/06 subtotal colectomy, temp ileostomy
01/06 path = 7 cm juvenile polyp (not cancer)
2014 ileoanal anastomosis or j-pouch (TBD)

iceis
Posts: 44
Joined: Mon May 24, 2010 11:13 am
Facebook Username: robin bond
Location: Toronto, Canada

Re: 30 y/o just diagnosed

Postby iceis » Mon Nov 11, 2013 10:41 am

Hi there!

Though there aren't many of us, there are still some of us young ones lurking around here. I remember when I was first diagnosed I felt so alone. I walked into a colon cancer support group only to be surrounded by people much older than I was ... and age makes a big difference when.it comes to support. My complaints fears and thoughts as a 27 year old mother to 4 young kids at the time (youngest was 9 months at my diagnosis) were very different than that of a65 year old man or 70 year old woman.

After digging around I found this forum and it was a God send. I don't often part but I always lurk. I am also in Canada, Toronto to be exact. If you ever need someone to talk to our someone to hear you vent I'm here! Please dont hesitate. I'm not an expert and 3 years after my diagnosis I'm still nervous about the future and often find myself looking back to those crazy months of chemo, but I'm here! Please stay strong and know even though you are young you have lots of support. Also your young age gives you that much more of a fighting chance. Your body is very resilient right now and you have lots of fight in you! I wish you all the best in the coming months
Stage 2c T4N0M0 33 neg LN
May15 2010 at age 27
HNPCC +
06/10 Total Colectomy
6months 5-Fu dropped oxi after 6 rounds
NED
Ct small pulmonary nodules
New 4mm focal liver lesion.and.low volume retroperitoneal lymph nodes - awaiting ultrasound correlation

debzak
Posts: 424
Joined: Tue Oct 02, 2012 2:58 pm

Re: 30 y/o just diagnosed

Postby debzak » Mon Nov 11, 2013 3:13 pm

I was diagnosed almost 2 years ago at age 44 and I too felt guilty about not getting checked sooner. I had been having new bathroom habits, in hindsight because my rectal tumor was blocking me form being able to empty completely. My parents had left for a 2 week vacation the day of my colonoscopy and I told them didn't know anything when they called that night. I knew. It did have to tell them a few days later after I met with the dr for the official pathology report. They came right home.

I was diagnosed stage III. It isa long road for most of us. But somehow I get up every day and keep going. I had a recurrence so i have been back on chemo since June.

I hope you get some good news and that your journey is short and easy.

Debbi
2/27/12 dx rectal cancer (stage III)
3/6/12 44th B-day
3/19/12 Oxi & 5-FU (8 rounds)
7/9/12 chemo-rad
11/5/12 LAR surgery temp ileo
1/20/13 4 rounds Xeloda
5/13 multiple liver mets
6/4/13 HAI pump at Sloan
KRAS wild & BRAF mutation found :(

Rheaeliza
Posts: 421
Joined: Fri Dec 14, 2012 4:42 pm
Location: New York, New York

Re: 30 y/o just diagnosed

Postby Rheaeliza » Mon Nov 11, 2013 4:34 pm

Welcome to our club...I sympathize with what you are going through. I was right there a year ago.

Diagnosed stage 4b at 30 years old in December 2012. I had no family history, and digestive upsets that I kick myself for not getting checked sooner (you have to let that go...you will learn to!) I had spread to the peritoneal cavity, omentum, lymph nodes, ovary, and liver, in addition to my main colon tumor. I was devistated. I woke up crying every day, I had just really gotten my life where I wanted, great friends, awesome jobs, amazing boyfriend, lovely apartment in the East Village in NY...how could this be happening? My oncologist started chemo for me on December 26th. He told me I would probably never be a candidate for surgery. Well I had 15 rounds of chemo...everything...xeloda, irrinotecan, oxaliplatin, avastin. And my cancer shrunk more than he had ever seen. I had my first surgery August 26th...HIPEC with colon resection, hysterectomy, appendix, and gallbladder removal. Had complications in hospital, including a leak in colon resection. Had to have second surgery to do a temporary illeostomy to let the leak heal. Was in the hospital for 3.5 weeks! Recovery was a beast. Wasn't even done recovering when I had my 3rd surgery, liver resection last monday. Got home after 4 days this time though.

My 4th surgery will be revering my illeostomy, can't wait.

I thought that chemo was really hard, but I worked and traveled the whole time. When I got the diagnoses, I thought I couldn't do it. For me though, I did get through that part. Through a lot of the support from people on this board. There were days where I thought I would never get better. Well, guess what? I woke up from liver surgery and my surgeon said "cancer free." I know it can come back, I know I"m not done with these battles. I can barely walk right now and my stomach muscles and incision hurt so bad, and I miss my old life, hell I even miss being on chemo compared to how hard this surgery recovery is, but I look at how much I have been through, how I do have age and health on my side, how I have so much left to do in this life, that I know I can pick myself up and get through this part too, one day at a time. And for the really hard days, there's good pain medication and ativan!

It's going to be hard for you, you probably feel functional now and not tooo "sick" and you are going to have to put your body through some stuff that will make you feel "sicker" just to get "better." It can screw with your mind a little bit. But we are here for you, and please know I am totally here for you too if you ever need to talk. Someone on this board reached out to me right after diagnoses who was my age, similar spread of cancer, and had been diagnosed a year before me. She was a big reason I got through some of those hard days.

Keep your chin up and know that you are going through what is probably the hardest part right now!
best,
Rhea
12/7/12: 30 yrs. old, Dx stage 4b.mets to liver, ovary, nodes, ommentum.
7 months chemo, shrinkage!
8/26/13 HIPEC, colon resection,hysterectomy, appndx, gallbladder out.
9/12/13:leak in colon, temp. loop ileost, home 9/18
11/3/13: liver resect.
1/2014 Ostomy reversal, one week later, abcess surg., fistula, tpn.
No more chemo, NED since 11/13

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horizon
Posts: 1669
Joined: Tue Apr 12, 2011 10:10 pm

Re: 30 y/o just diagnosed

Postby horizon » Tue Nov 12, 2013 8:39 am

Kimmicita wrote: I know firsthand that the CC diagnosis minus any other info sends a person into a tailspin, so I don't want to do that to them. If things get rolling this week (and they should, right???), I'll call them so they can come out earlier than they planned (Friday).



They're going to find out eventually. Worrying about how they were going to react was an additional stress I didn't want. I just told my parents immediately.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?

JennyB
Posts: 240
Joined: Mon Sep 21, 2009 10:59 am
Location: St. Louis

Re: 30 y/o just diagnosed

Postby JennyB » Tue Nov 12, 2013 2:07 pm

Hi Kimmicita -- my husband had a very similar experience to yours. He had ulcerative colitis since her was 11. He hadn't had a colonoscopy in awhile and he started feeling really crappy, and his doctor brushed it off. He was diagnosed when he (my husband) insisted on getting a scope and they discovered his colon was necrotic and had to be immediately removed. He was 34 when diagnosed and I was six months pregnant with our son. That was almost five years ago and he is doing great now. I am sure he would be more than happy to talk to you, so PM me if you would like!
Jennifer
Wife of Scott, diagnosed at age 34 on 3-27-09, now 37
Stage III-C CC, 15 out of 36 nodes involved
Ulcerative colitis since age 11, colon removed 3-25-09
He finished Folfox on 9-23-09
Permanent ileostomy March 2012
NED so far!

canoe1
Posts: 15
Joined: Thu Sep 19, 2013 5:09 am

Re: 30 y/o just diagnosed

Postby canoe1 » Tue Nov 12, 2013 4:18 pm

Hi,

Am so sorry to hear the news. Just take day by day and really really treat yourself to calm and lovely things. Warm baths, yoga or whatever makes you feel chilled, candle light, romance and movies. It's not an easy journey I sure know that. I was recently diagnosed and like you thought it can't be me - help etc.

But somehow you slowly begin to deal with it. Friends and family with gather around. Even the ones you thought were annoying. And that helps hugely. Food will be cooked for you and presents given (and if they aren't - ask!). And you will feel like you're appreciated hugely by everyone. Finally you will start relishing life in the small things.

It's so overwhelming at first and there are hurdles to jump but after a few you will just think - right here we go - another one. Then have a cry and then somehow pick yourself up again. Keep going…..

Lots of best positive wishes
Staging - T3, N1, M0. November 2013
17 Lymph nodes removed. 1 cancerous.
Tumour in Colon -Had Hemi colectomy.
Moderately differentiated cells in tumour.
EMVI (extra mural vascular invasion) - negative.

canoe1
Posts: 15
Joined: Thu Sep 19, 2013 5:09 am

Re: 30 y/o just diagnosed

Postby canoe1 » Tue Nov 12, 2013 4:21 pm

ps. And…..forgot to say that out of all the cancers you can get - colon cancer is one of the most curable.
Staging - T3, N1, M0. November 2013
17 Lymph nodes removed. 1 cancerous.
Tumour in Colon -Had Hemi colectomy.
Moderately differentiated cells in tumour.
EMVI (extra mural vascular invasion) - negative.

Kimmicita
Posts: 17
Joined: Sun Nov 10, 2013 6:47 am
Location: Vancouver, BC

Re: 30 y/o just diagnosed

Postby Kimmicita » Tue Nov 12, 2013 7:20 pm

Well I got my CT appt (Friday morning), and the surgery consultation is set for next Wednesday, November 20! I now know that the tumour is in the splenic flexure. It sounds like it's not a common spot for it, but doesn't seem to have any effect on outcomes.

Even though I have no new information, it feels a lot better to have appointments booked. My GI doc's MOA is being very supportive, and fast tracking things because of how freaked out I am. She assures me it's not because the GI doc is especially freaked out, and I'm choosing to believe her on that. I feel like I have an advocate in her, so that is good.

My surgery will be at St. Paul's, and I'm so grateful to live so close to it. As a bonus, my best friend is a cardiac nurse there! Still haven't told my parents, because I really need to do it in person. I expect Friday evening when they arrive there will be a lot of tears, but maybe the CT results will come in early with some good news (not holding my breath for the early part, but definitely for the good news part). I'm hoping we can have some good quality time this weekend, once the news settles in for them.

I'm going to go to work tomorrow, and I'll just take Friday off. My (very supportive) boss knows something is wrong, but not what. I'll wait until I have the CT results and a surgery date to tell her. Once my parents know, I'm giving the all clear for my inner circle to share the news to my wider support system. It will feel good to share the burden a bit and to think of all the people who are rooting for me.

I made a list of reasons why I'm going to beat this, and it's long. I look at it when I start to veer into dark thoughts. In all likelihood, it's not stage IV, and if it is, I'll fight that with everything I've got, just like I will any other stage. Thank you again so much for your encouragement, information, stories and support these past few days. The internet can be SUCH a nasty place, but this forum and its people are everything that's good about the world. I'll keep you posted. Fingers crossed.

Now I'm going to get ready for some much needed laughs. Going to see David Sedaris tonight with my best friends! My husband already made me laugh really hard today. We were talking about my imminent scar, and that it will probably be big because laparoscopic surgery is not as much of a thing with SF tumours. I commented that I could not care less about the scar and he said "if they had to take it out of your face, we would be doing it so..." True story.
1995 Dx UC
11/8 Dx CC (splenic flexure mass)
11/15 biopsies (-) cancer/pre-cancer, CEA >0.5, clear CT, local nodes lit up
12/06 subtotal colectomy, temp ileostomy
01/06 path = 7 cm juvenile polyp (not cancer)
2014 ileoanal anastomosis or j-pouch (TBD)

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: 30 y/o just diagnosed

Postby justin case » Tue Nov 12, 2013 7:41 pm

Just for your own information as I was taken by complete surprise, I had my first CT instead of a PET scan, in July, and my body didn't like the Barium contrast. It was hard to get down, and gave me a problem with diarrhea. I hope it agrees with you. Hoping for good results on your scan!
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

Kimmicita
Posts: 17
Joined: Sun Nov 10, 2013 6:47 am
Location: Vancouver, BC

Re: 30 y/o just diagnosed

Postby Kimmicita » Tue Nov 12, 2013 7:59 pm

Thanks Michael! I'm going to pick up Telebrix now. I'm not sure if that is in addition to or instead of barium. Anyway, I've had barium before when I was first diagnosed with UC in 1995. I don't remember anything but that it tasted like the worst chocolate milkshake ever. But I'm so ready for any kind of side effect, especially of the digestive kind. I haven't been having those issues with this new development, but I'm all too familiar with them from UC. Of course, my last flare up was 6 years ago, but you don't forget that kind of thing!
1995 Dx UC
11/8 Dx CC (splenic flexure mass)
11/15 biopsies (-) cancer/pre-cancer, CEA >0.5, clear CT, local nodes lit up
12/06 subtotal colectomy, temp ileostomy
01/06 path = 7 cm juvenile polyp (not cancer)
2014 ileoanal anastomosis or j-pouch (TBD)

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Cherie
Posts: 590
Joined: Fri Jul 12, 2013 11:20 am
Facebook Username: cherie
Location: New Zealand

Re: 30 y/o just diagnosed

Postby Cherie » Tue Nov 12, 2013 8:19 pm

This is a crappy situation but I guarantee you that you have ALOT more time than you think. There are many people here who are stage four and treat this as a chronic disease. I know you have experience with living with a chronic disease who knows things may be better than before.

I also had UC. I had my entire bowel removed...no more pain or running to the toilet....in fact if it wasn't for the chemo I was doing I would feel the best I have ever felt. I have five more rounds of chemo (ten weeks) then I plan on living the best part of my life because I finally will have energy and wont have to worry about pain or a toilet.
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

Kimmicita
Posts: 17
Joined: Sun Nov 10, 2013 6:47 am
Location: Vancouver, BC

Re: 30 y/o just diagnosed

Postby Kimmicita » Tue Nov 12, 2013 11:57 pm

Well I'm not holding up as well as I thought I was. David Sedaris was a mistake. Within the first 20 minutes, there were three cancer jokes and one about colostomies. WTF? And a huge auditorium of people are laughing their heads off. I'm a fairly sensitive person so I would not have enjoyed those jokes before all this but now they're literally unbearable. I had to leave before I burst into tears and now I'm writing this from the middle of a field at my alma mater. My husband is coming to get me. This is so hard.
1995 Dx UC
11/8 Dx CC (splenic flexure mass)
11/15 biopsies (-) cancer/pre-cancer, CEA >0.5, clear CT, local nodes lit up
12/06 subtotal colectomy, temp ileostomy
01/06 path = 7 cm juvenile polyp (not cancer)
2014 ileoanal anastomosis or j-pouch (TBD)

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horizon
Posts: 1669
Joined: Tue Apr 12, 2011 10:10 pm

Re: 30 y/o just diagnosed

Postby horizon » Wed Nov 13, 2013 8:23 am

Kimmicita wrote:Well I'm not holding up as well as I thought I was. David Sedaris was a mistake. Within the first 20 minutes, there were three cancer jokes and one about colostomies. WTF? And a huge auditorium of people are laughing their heads off. I'm a fairly sensitive person so I would not have enjoyed those jokes before all this but now they're literally unbearable. I had to leave before I burst into tears and now I'm writing this from the middle of a field at my alma mater. My husband is coming to get me. This is so hard.


That's completely understandable. Your emotions are raw at this stage. I've been NED for a while and I still can't make myself watch the movie 50/50 because I know the cancer scenes will upset me.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?


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