Newly Diagnosed

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fucancer
Posts: 7
Joined: Mon Mar 17, 2014 12:14 am

Newly Diagnosed

Postby fucancer » Fri Mar 28, 2014 11:36 pm

Hello, I am a first time poster, although I've been reading this board since I learned I have colon cancer, and it's helped me already.

My drama started in December 2013 with sharp abdominal pains. I thought it might be appendicitis. A CT scan revealed a colon perforation, so I was admitted to the hospital for 4 days and given IV antibiotics. I was given a diagnosis of diverticulitis. They wanted me to wait about 6 weeks for the inflammation to subside, then do a colonoscopy. This was done on Feb. 25th, when the tumor was discovered in my sigmoid colon. Surgery was March 6th, they removed about a foot of colon and a tumor the size of a tennis ball. The pathology came back T3 N0 MX. 24 lymph nodes were taken, there were clean margins, the tumor was moderately differentiated, but lymphovascular involvement was noted. Because of this, the oncologist considers me a high risk Stage IIA. He is pushing for chemo as if I were a Stage III. Oxi, 5FU, LV. He didn't want to order the Oncotype DX assay, said "it wasn't very useful". He did order immunohistochemistry, and all markers came back positive (MLH1, MSH2, MSH6 & PMS2).

I don't know what to think. This has all happened very fast and it's been a lot to take in, research, etc. I am a 54 yo female, and a Type 2 diabetic. I really don't want to go through chemo, but afraid of what might happen if I don't. I am looking to get a second opinion next week or so at UCSF.

Feeling a bit overwhelmed...

stpio
Posts: 258
Joined: Mon May 26, 2008 6:14 am

Re: Newly Diagnosed

Postby stpio » Sat Mar 29, 2014 10:21 am

I am so sorry to hear about your diagnosis. So normal to feel overwhelmed, confused, scared and concerned about chemotherapy. I was diagnosed Stage 3 in 2007 and had the same chemotherapy you mentioned below for 6 months. Although it wasn't easy I made it through as did many of us on this board. I am not a diabetic and tested negative for MLH1, MSH2, MSH6 & PMS2 so unfortunately I cannot offer any information on that topic. You found a great forum here that has helped me and others tremendously. Good luck at your second opinion and I hope you have a lot of support from family and friends.
Female
Surgery July 17, 2007 Stage III
1 foot of colon removed near spleen
1/21 positive LN
5FU/Leucovorin/Oxilaplatin for 6 months
Completed chemo January 2008
Stage 1 Breast Cancer 2010/radiation Tamoxifen

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Rob in PA
Posts: 2022
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Newly Diagnosed

Postby Rob in PA » Sat Mar 29, 2014 12:21 pm

Welcome, yet sorry you have to be here. Stage II can be a tricky diagnosis because even though there is a tiny bit of relief that you are not stage III or IV, you are still vulnerable to advancing to stage IV if you are not aggressive with your treatment. If your onc is concerned, you should be too. Nobody likes having to "choose" to put your body through chemo but the payoff and peace of mind could be substantial. So if you haven't been able to tell from my words yet...yes, i think you should do chemo.

Best to you,
Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

Oneeyeddog
Posts: 101
Joined: Sat Apr 06, 2013 11:06 am

Re: Newly Diagnosed

Postby Oneeyeddog » Sat Mar 29, 2014 12:47 pm

Yes, do the chemo -- especially if you onc is pushing for it. While chemo is no breeze, it is entirely do-able. Speaking bluntly, if you did have a recurrence further down the road you might always be kicking yourself for not using everything in your arsenal to prevent that from happening. With lymphovascular involvement, there is a chance there are microscopic cancer cells floating around your body and the chemo is there to take care of that (if that is indeed the case). So, yes, I would do it certainly. I wish you all the best, whatever you decide.
Colon cancer Stage 3c (dx April 2013) at age 36
Resection and temp ileostomy (4/17)
12 rounds of FOLFOX (May-Oct 2013)
NED (August 2014)
http://www.theoneeyeddog.com

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Newly Diagnosed

Postby Lee » Sat Mar 29, 2014 1:12 pm

Welcome, sorry for the reason you are here.

As others have said, do the chemo. Stage II is really a grey area. Too many people with stage II have moved to stage IV. You want to fight this cancer NOW with everything you can so that you don't look back and say "maybe I should of".

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!

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

Re: Newly Diagnosed

Postby justin case » Sat Mar 29, 2014 3:24 pm

If vascular involvement was noted, I would think this a no brainer. please do the chemo.
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

fucancer
Posts: 7
Joined: Mon Mar 17, 2014 12:14 am

Re: Newly Diagnosed

Postby fucancer » Sat Mar 29, 2014 11:25 pm

Thank you, everyone, for your thoughts. I think I'm resigned to doing the chemo now. I'm still going to get a second opinion, but I will need to pay for it out of my pocket, since I want to go outside my HMO for it. They may give the same advice, but I will feel a little better about it.

PainInTheAss
Posts: 678
Joined: Tue Jul 02, 2013 3:08 am

Re: Newly Diagnosed

Postby PainInTheAss » Sun Mar 30, 2014 3:14 am

Standard care is becoming no chemo for stage IIa if there are no risk Factors. Since you have risk factors....

I agree... It's a no brainer.

When I struggled with the risk/side affects dilemma even as a stage III, I found peace in something Bev said in one post something like, "I finally realized that if I was going to survive, I needed to trust my doctors."

Go ahead and get a second or third opinion, but stop when you are just trying to find someone who will tell you what you want to hear. Better to do preventive now while you still can.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

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katsheba
Posts: 83
Joined: Sat Mar 16, 2013 4:58 pm

Re: Newly Diagnosed

Postby katsheba » Sun Mar 30, 2014 10:10 am

Just wanted to say good luck. I did chemo last year. It is was no walk in the park to say the least, but as bad as those months were, they did end and now I feel great. I'm sure you know that people's experiences with chemo can be very different depending on a multitude of factors. Even each round of chemo can be different for the same person. I had a complication from surgery that made the first half of my chemo worse than it would have been otherwise. Even so, I got through it. When you are in the middle of it, sometimes it is hard to see that it will be over. But it is finite. It's not an easy decision even when there is "no choice." My onc always said, "Right now is our big shot to do this right." As many on this thread have said, you can't go back in time and decide to do it if you don't do it now. I was stage IIIC, so chemo was a no brainer for me. Nevertheless, it helped me to actively make the decision to do it. In other words, I felt emotionally better when I looked at it as the best decision I could make under the circumstances I was in vs. just going along and feeling like it was being forced on me by the doctors and I had no choice. That's my point of view. I wish you all the best as you continue dealing with this difficult situation. Take care.
Age: 39
Stage: IIIC
DX: 3-15-2013 (Beware the Ides of March!)
Colon Resection and Anastomosis: 4-9-2013
Starting Chemo--May-14-2013
Finished Chemo--November-21-2013
NED

La vida te da sorpresas...

orcasres
Posts: 836
Joined: Mon Jul 01, 2013 10:23 pm
Location: Orcas Island, WA

Re: Newly Diagnosed

Postby orcasres » Mon Mar 31, 2014 1:10 pm

I am stage IIA and I had risk factors. My onc strongly urged chemo and I did 12 rounds of FOLFOX (the last 4 without OXI). I just decided I could not live with my choice if I did not do chemo and if I had a recurrence and while chemo was no walk in the park, it was doable. I have a little residual neuropathy in my feet and a lot of aches and pains that I did not have before chemo, but I will never regret doing it.

Good luck with your decision, Lois
63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far

radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Re: Newly Diagnosed

Postby radnyc » Mon Mar 31, 2014 2:56 pm

Nobody wants to do chemo. Lymphovascular involvement is a sign that some cancer cells might have move into the lymphatic system. I would not take any chances, do the chemotherapy. Folks here will help you along with any questions you might have. Hang in there.
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April 2011
HAI Pump removed Dec 2015

lorrainem
Posts: 819
Joined: Tue Dec 18, 2007 2:34 pm
Facebook Username: https://www.facebook.com/lorraineaminogue
Location: NY

Re: Newly Diagnosed

Postby lorrainem » Wed Apr 02, 2014 12:24 pm

Also stage II here, and also one who was strongly urged to opt in for chemo. Same location sigmoid junction so treated for both rectal and colon as tumor was on the low side … only difference being chemo/radiation prior to surgery then started the Oxy routine six weeks post op.
Treatment isn't a picnic, it actually sort of sucks, but it's 2014 and I am still disease free, in September it will be seven years since diagnosis.
If it comes back, I know I did what was necessary.
I hope you have good results both on your second opinion and your journey.
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

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Kick'nAssCancer'sAss
Posts: 248
Joined: Tue Feb 25, 2014 4:38 pm

Re: Newly Diagnosed

Postby Kick'nAssCancer'sAss » Wed Apr 02, 2014 1:22 pm

Stage IIA here also and I got a CPR but still doing the chemo. I just have gone through so much to date that if I blew off the chemo and what if?????
My ONC suggested I do the chemo since my original T3 tumour would be considered aggressive and you never know if clusters of micro cancer cells are lurking waiting to attack even though I have to lymph node involvement and no more tumour.
I have 8 treatments and not looking forward to it but if I am alive 10 years from now I will be glad I went through it.
Do the chemo.
53M Dx RC Halloween 2013
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME Feb 26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar 28-Jul 4 /14
Aug/14 clear CT scan
Aug 27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 Feb/18 clear CT scans
Feb/18 clear scope
Sept 19 clear CT scan & DISCHARGED :P
Mar/23 clear scope
CEA 1.6 @ dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kickingasscancersass.blogspot.com/

rp1954
Posts: 1855
Joined: Mon Jun 13, 2011 1:13 am

Re: Newly Diagnosed

Postby rp1954 » Wed Apr 02, 2014 2:12 pm

I think a fair summary of past chemo options discussed here on the board for stage II-III is:

Xeloda (an oral chemo AKA capecitabine) or 5FU-LV only, 6-12 months
Folfox for 6 months (or Folfiri if 'fox problems)
Folfox for 2-4 months + 5FU-LV or xeloda for 2-4 months (remainder of 6 mo)
(chemo 1-2 rnds +) long term off label adjuvants like cimetidine, PSK, metformin, celebrex and/or anticancer supplements
Xeloda 6-12months, plus off label adjuvants like cimetidine, PSK, metformin, celebrex and/or anticancer supplements

The precise length of time on oxaliplatin is a major consideration that you might follow previous posters' experience and comments about side effects and net value. Also any CEA and CA19-9 data, pre-op and post op, can shift the odds and potential choices.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements


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