I'm new and concerned I may have Colon Cancer. Can you help?

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JJ2212
Posts: 268
Joined: Mon Oct 14, 2013 3:54 pm
Location: Montréal, QC

Re: I'm new and concerned I may have Colon Cancer. Can you help?

Postby JJ2212 » Mon Jun 22, 2015 12:13 am

Hi Lydia,

You've gotten a lot of good advice here and I don't want to be repetitive, but I feel the need to try and answer this question:

Lydia666 wrote:Are you guys able to enjoy life? Do you think about it all the time?


My mind was reeling after my diagnosis. I tried to put on a brave front during the first few weeks, but it was impossible to not think about cancer 24/7. You are definitely going through the very worst time in a cancer journey, IMO. Not knowing what is going to happen, not having the answers to all the questions, is mind-blowingly miserable. Period.

The same questions you've asked were running on a loop in my brain all day and all night long for a few months after diagnosis. I was in 'survival' mode and did what I was supposed to do(appointments, medication, etc) but there was no joy in my life at all. I could not understand how people LIVED with cancer as opposed to just survived. I looked for the answers anywhere I could find them, i.e. on the forum, with a social worker assigned to me at the hospital and with a psychologist specialized in oncology. Everything pointed to the fact that yes, people with cancer can enjoy life, but I didn't know HOW.

The answer for me is that it takes time. Like that anti-bullying campaign from a few years ago, I can tell you that "it gets better". Everyone is different so it may take a few weeks for some, a few months for others, but it gets better. Based on my experience, I'd say the things that can help you get out of 'survival' mode and into 'living' mode a bit faster are:
- get your pain under control, if you have any. I suffered needlessly for too long because I was afraid of taking narcotics. If you have pain, tell your dr and use what they prescribe. If it doesn't work, ask for something different. You don't get addicted when using pain meds for pain.
- get enough sleep. Being constantly exhausted doesn't help your mental state. If your brain is too wired to sleep, don't be afraid to ask for some medication to help you through this tough time. You won't need it forever.
- get the support you need. Talk to your family, bff, a counselor, use the forum, etc. Talk when you want to talk, cry when you want to cry, feel what you have to feel. This saved me from going batsh*t crazy during the miserable first months.
- take an anti-depressant if you aren't bouncing back in a few weeks.

I'll be blunt and say that chemo/radiation and surgery was mentally hard for me. I didn't really start feeling better until my surgery was done and I could stay away from the bathroom for more than 30 minutes at a time. But once the tumor was out and my colostomy was in, I finally started LIVING again. I was enjoying life again, even during my 6-month FOLFOX regimen. I took pleasure in little things like talking to friends, getting a massage, having a good glass of wine, etc.

I still think about cancer every day, but that's because i'm still in active treatment. But I think about a lot of other stuff too, most of it happy.

So to answer your questions: yes, I do enjoy life and no, I don't think about it all the time.

Take care,

Janie
Rectal cancer dx 04/13 @ 42, MSS, KRAS positive
T3N2M1 (1 lung met)
5 weeks xeloda+radiation finished 07/13
APR 9/13 (permanent colostomy), 27/31 nodes positive :-(
12 rounds of FOLFOX 04/14
Lung met growth 11/14
26 cycles Regorafenib (Stivarga) from 11/15 to 01/17
New lung met and chest/neck lymph nodes 01/17
1 cycle Folfiri

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: I'm new and concerned I may have Colon Cancer. Can you help?

Postby Lydia666 » Mon Jun 22, 2015 3:59 am

Thank you all for taking the time to write to me when you are dealing with your own thing. I have no pain at all anywhere besides some lower back discomfort which i've always had- especially now that i am caring my baby in the baby carrier. It is in my right side, like upper butt part. It might all be cancer- i dont know anymore. I am afraid it is everywhere, every cough, every feeling feels like cancer now.

I am losing my mind. My babies are so small. Is it even possible that i will see them in college??
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: I'm new and concerned I may have Colon Cancer. Can you help?

Postby Lydia666 » Mon Jun 22, 2015 4:03 am

I just read pain in buttocks is signed of advanced cancer. I am devastated. Nooo!!!
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

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NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: I'm new and concerned I may have Colon Cancer. Can you help?

Postby NZJay » Mon Jun 22, 2015 4:37 am

Hi again Lydia. Sorry to repeat myself, but I very strongly recommend you go to your GP and demand something like Ativan / Lorazepam for this very confusing and scary time while you await proper diagnosis. If it's overwhelming you, use the tools available to help yourself. Don't let the panic and fear swallow you up.

Is it even possible that i will see them in college??

Yes! Absolutely!

It sucks waiting... but that's all you can do at this moment.
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

alphagam
Posts: 203
Joined: Tue Jun 14, 2011 10:48 am
Facebook Username: Kathy Maine Ruess

Re: I'm new and concerned I may have Colon Cancer. Can you help?

Postby alphagam » Mon Jun 22, 2015 7:30 am

Lydia,

You asked if I had had bleeding. Yes, that was the reason for my colonoscopy. I STRONGLY agree with others that you talk to your Dr regarding medication for your anxiety. It's a very scary time and you are worried about your kids. If you can calm down, you will be a much better mom to your kids!! You would be amazed how the anti-anxiety can help and you won't be a zombie while taking them
Dx Feb 2010 4 cm tumor, just inside rectum
EUS stated T3 tumor
2nd opinion, need better path
Mar 2010 transanal surgery. Surgery by board certified CRS found tumor only in lining
6 exams of surg site, 3 PET, 3 scopes laterNED.
Scope in Mar2015, clean colon
Next scope/test in 3 years

Lee
Posts: 6034
Joined: Sun Apr 16, 2006 4:09 pm

Re: I'm new and concerned I may have Colon Cancer. Can you help?

Postby Lee » Mon Jun 22, 2015 8:41 pm

Lydia666 wrote:I just read pain in buttocks is signed of advanced cancer. I am devastated. Nooo!!!


I've been around long enough to not let pain be a symptom of advanced cancer. On another site, a guy had back pain and bleeding for 2 yrs (FOR 2 YEARS!!). His wife made the appt. He was scared it was bad and did not want to know. In the end, he was a stage II. No chemo, just radiation and surgery (and no colostomy). He was really glad his wife made the appt.

That pissed me off. I had bleeding for maybe 6 mths (no more than that for sure). Had some back pain, have for yrs, truth is I still do, but maybe a bit more prior to diagnoses (remember I had 2 young kids who needed me). I'm diagnosed with a stage III. Some people told me I was advanced. 11 yrs later, I'm still here.

Stats do not take in to account the individual. Some people when given a cancer diagnoses, choose to do nothing (I've talked to few of those people). I realized my odd were better than than average, simply because I chose to fight my cancer..

Please remember, until ALL the FACTS are in, anything else is SPECULATION. No 2 people are alike. Did you see a Dr today?

Remember, we are here for you,

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 - 10 years and counting!

User avatar
hopeful
Posts: 1372
Joined: Mon Jan 04, 2010 11:43 am

Re: I'm new and concerned I may have Colon Cancer. Can you help?

Postby hopeful » Mon Jun 22, 2015 10:06 pm

My husband was diagnosed with colon cancer more than 5-1/2 years ago. He is fine now and there are many days I don't think about colon cancer and he doesn't either. He was stage 3B and went through resection and 6 months of chemo. He has been NED since his surgery.

I just want you to know that there are a lot of survivors who don't hang out here anymore because cancer has been put on a back burner and we don't have to deal with it anymore. But this was an excellent place to get information when he was going through treatment, to find out what was normal and what everyone else was going through.

Please try not to worry too much and ask your doctor for anti-anxiety meds if you need them. They don't make you feel weird, they just push down the panic. I don't know how I would have gotten through the whole diagnosis and treatment thing with my husband without them.
I think not knowing, being where you are now is the hardest part. Once you know what you're up against and have a plan, you can move toward getting rid of it. I wish you all the best and will keep you in my prayers.
Caregiver to husband diagnosed 11/09 stage IIIb colon cancer
Surgery 11/5/09
12 rounds FOLFOX beginning 12/18/09
Folfox finished 6/3/10
Last scan Jan 2015
NED since Dec. 2009

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: I'm new and concerned I may have Colon Cancer. Can you help?

Postby Lydia666 » Tue Jun 23, 2015 4:16 pm

THank you all again immensely. I should mention that this is my second cancer in 3 years. I found out totally by chance during my first pregnancy in 2011 that I had a thyroid nodule, which turned out to be 4 cm. I was feeling perfectly fine and would've never discovered it if a doc would not have made an ultrasound of my thyroid for no reason at all!! I wanted to get pregnant and she said the thyroid needs to be ok for that, let's check. I was already pregnant and did not know it but she found the nodule. A year later, i had the surgery and they found 1 cm of cancer in it. The surgery was a breeze and my endocrinologist assured me this is a piece of cake, the best cancer to have. It has not spread anywhere. SO i never thought about it since. Rectal cancer is obviously much different, and now i wonder what else...do i have independent cancers like this every year? The doc who will do the rectal surgery suggested I should take out the uterus and ovaries eventually . Nobody in my family had thyroid or colon cancer - my father had prostate cancer and that's it. Grandparents died of old age in the 80s and 90s. Mom is fine. Brother is fine so far.

For my rectal problem, I have no news. I saw the doc but he just went over the situation - no more facts yet. Waiting for the scans to estimate the stage. If it seems like II, then surgery Aug 3rd. If III, chemo first. Does that seem normal to wait this long for surgery?

I am a wreck. I am in free fall. I called friends over this morning as I thought i was going to collapse.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: I'm new and concerned I may have Colon Cancer. Can you help?

Postby JudeD59 » Tue Jun 23, 2015 4:40 pm

The doctor said that if it's stage II, you would go straight to surgery? No radiation/oral chemo to shrink the tumor first? I'm kind of new, but I think that is unusual. I think standard treatment is radiation/Xeloda, then surgery, then maybe infusion chemo depending on stage. I'm stage II and that's the treatment I'm getting. This is rectal cancer, right?

Is this doctor a board certified colorectal surgeon?

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: I'm new and concerned I may have Colon Cancer. Can you help?

Postby Lydia666 » Tue Jun 23, 2015 7:56 pm

Hi Judy, that's what he said but i think he would meet with a team of docs before anything. We still dont know what we are dealing with.
I am in canada so i don't know about board certified. He is a surgeon specialized in this type of surgeries.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: I'm new and concerned I may have Colon Cancer. Can you help?

Postby Lydia666 » Wed Jun 24, 2015 12:35 pm

How did u find the surgery? How long does it last? Mine will be a laparoscopy if he can- it is possible though that he would have to open me up? How long were u in the hospital?
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: I'm new and concerned I may have Colon Cancer. Can you help?

Postby cathy123 » Wed Jun 24, 2015 1:29 pm

Just reading thru your thread. So sorry you are dealing with this. I will second what others have said that this time with all the waiting and unknowns is so hard. I am a planner and it is so tough to have no facts and no treatment plan, and to be thinking if all the worst case scenarios.

Right now is a good time to educate yourself a little so you can understand what the drs are saying and question anything that is not in line. (For instance in the U.S. the standard of care is chemoradiation first for stage 2 and 3 rectal cancer - if it is definitely rectal cancer not colon cancer I would ask why no radiation for stage 2). But don't spend your life on Google or in this forum. You should also decide if you want to get a second opinion and if so where so that you can move quickly once you get scan results. For me it went from waiting waiting to different drs with different opinions and I had to make a decision quickly.

Other than that try to keep busy with your kids and distract yourself. In many (maybe most?) cases this is curable and you will get thru a really crappy year or so and hopefully move on. I don't know if you have family nearby, but if not be sure to reach out to friends, neighbors, church, for help when needed. I felt very alone at times at first but have been amazed by the help and love I have received.

As far as the surgery, my dr told me the same thing. He was able to do it laproscopically, but had to hand sew me because the tumor was so low so my surgery was 8 or 9 hours. It was very painful to sit up or use my ab muscles at first, but I got to go home on the 4th day and was off heavy pain meds sometime the following week so really it wasn't all that bad. i have a temporary ileostomy which was tough to get used to, but I am doing pretty well with it these days.

Hope your scans give you good news! Hang in there!
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: I'm new and concerned I may have Colon Cancer. Can you help?

Postby Lydia666 » Wed Jun 24, 2015 2:38 pm

Cathy, what does positive for lymphatic invasion mean- it looks like u had no nodes caught...
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: I'm new and concerned I may have Colon Cancer. Can you help?

Postby Lydia666 » Wed Jun 24, 2015 2:48 pm

Do u think i can hold my babies after the surgery?
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: I'm new and concerned I may have Colon Cancer. Can you help?

Postby cathy123 » Wed Jun 24, 2015 9:09 pm

Lymphatic invasion means that cancer was found in either the blood or lymph vessels (they didnt say which - I guess they look the same). So even though no infected lymph nodes were found, it could have spread either thru the blood or to a different node. Hopefully not, but that is why I am doing chemo even though I am stage 1.

How big is your baby? I remember when I had c sections I was told not to pick up anything heavier than my baby. So 8 lbs or so. This time they just told me no lifting for 6 weeks. But check with your doctor. I know it would make life really difficult to not be able to pick up your baby, but you don't want more surgeries for a hernia either.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds


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