Newbie

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Colonme
Posts: 7
Joined: Wed Jun 27, 2018 11:55 pm

Newbie

Postby Colonme » Sun Jul 01, 2018 3:32 pm

Hi all!
I am new to this all. I was diagnosed on 4-3-2018 with colon cancer (Gastroenterologist). I had surgery on 6-6-2018 (general surgeon). He thinks he got it all, and doesn’t expect me to need chemo. I’ll believe it after I see the oncologist. Tumor site: cecum. Stage 2, pT3N0M0, grade 2. Consistent with MSS tumor/more likely to respond to 5-FU based chemo. I have not seen my oncologist yet and won’t until AUGUST. From what I’ve read, adjuvant chemo is a real possibility. Any advice from those more experienced? What falls under “5-FU based chemo?” I have no patience.... This took two months just to have the surgery, and two more months for the oncology appointment that I get to anticipate for five more weeks.... I am a bit nervous.... what can I expect?

Caat55
Posts: 513
Joined: Sat Dec 23, 2017 6:01 pm

Re: Newbie

Postby Caat55 » Sun Jul 01, 2018 11:37 pm

So many questions for you but there are way wiser people here then me. Your course of treatment is so unlike what I know or have read. Where do you live that you haven't been able to see an oncologist in 4 months?
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

Beckster
Posts: 269
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Newbie

Postby Beckster » Mon Jul 02, 2018 6:14 am

Colonme wrote:Hi all!
I am new to this all. I was diagnosed on 4-3-2018 with colon cancer (Gastroenterologist). I had surgery on 6-6-2018 (general surgeon). He thinks he got it all, and doesn’t expect me to need chemo. I’ll believe it after I see the oncologist. Tumor site: cecum. Stage 2, pT3N0M0, grade 2. Consistent with MSS tumor/more likely to respond to 5-FU based chemo. I have not seen my oncologist yet and won’t until AUGUST. From what I’ve read, adjuvant chemo is a real possibility. Any advice from those more experienced? What falls under “5-FU based chemo?” I have no patience.... This took two months just to have the surgery, and two more months for the oncology appointment that I get to anticipate for five more weeks.... I am a bit nervous.... what can I expect?


Welcome

Stage IIA (which is your stage) of the cecum performed by a colon rectal specialist. My surgeon did not think I needed chemo, but when pathology report came in, it revealed LVI and Grade 3 ( Grade 2 for colonoscopy biopsy.) Both are subjective, but he suggested me seeing an oncologist. First, make sure that you are at a large cancer center....I go to MD Anderson. I had surgery in November 5th and started chemo December 27th. I had a choice of whether or not to take chemo, but because of my age, he felt that I should. He said it is an insurance policy. I started with Capeox (oxi and Xeloda), but had an allergic reaction on the first oxi infusion. I did six months of Xeloda (pill form of 5/FU). It was doable and worked well with my life style. In your pathology report, did you have any other high risk features: <12 lymph nodes, LVI, PNI, obstruction, perforation, elevated preoperative CEA? You might also want your surgeon to send your specimens for OncotypeDx testing. It might give you additional quantitative data of whether to take chemo. Hopefully other stage II will chime in!
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/18 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8
Clear Colonoscopy 10/17 :D

Utwo
Posts: 208
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Newbie

Postby Utwo » Mon Jul 02, 2018 8:24 am

Caat55 wrote:Where do you live that you haven't been able to see an oncologist in 4 months?

Canada or another single payer country?
For me 2 month waiting for a surgery seems in line with Canadian situation.

Many Americans have not even heard about "Waiting times".
However in many countries it's a real issue.
58 yo male at diagnosis - T1bN0M0, 0/15 lymph nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 CT scan, blood test ...
05/2016 "prophylactic" laparoscopic right hemicolectomy with a few complications (bleeding, leak, infection)
06/2017 CT scan (lower body), colonoscopy OK; CEA = 1.6

DarknessEmbraced
Posts: 3115
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Newbie

Postby DarknessEmbraced » Mon Jul 02, 2018 11:30 am

Welcome to the group and sorry for your diagnosis!*hugs* I hope your meeting with the oncologist goes well!*hugs* I was diagnosed as stage 2a in 2014. Chemo wasn't recommended and I have been in remission since surgery.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

MissMolly
Posts: 556
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Newbie

Postby MissMolly » Mon Jul 02, 2018 12:46 pm

Utwo wrote:
Caat55 wrote:Where do you live that you haven't been able to see an oncologist in 4 months?

Canada or another single payer country?
For me 2 month waiting for a surgery seems in line with Canadian situation.

Many Americans have not even heard about "Waiting times".
However in many countries it's a real issue.


Extensive wait times for new patient appointments are not uncommon in the United States. Specialist appointments can be especially difficult to schedule in a timely manner.

Urban/metropolitan communities have a larger pool of specialists as opposed to rural/small town and can exacerbate discrepancies in terms of access to care and appointment wait times.

I love in Portland, Oregon - a large, metropolitan city on the west coast that is a hub for highly skilled software developers. Need to see a rheumatologist for evaluation of a possible auto-immune disorder? Expect an 8-10 week wait for a new patient consultation. Need to see an endocrinologist for diabetes management or to diagnose pituitary suppression due to corticosteroid use? Expect a 10-12 week wait for a new patient consultation.

Wait times are very real in the United States depending on the availability of the specialist that one needs to see.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

NHMike
Posts: 1687
Joined: Fri Jul 21, 2017 3:43 am

Re: Newbie

Postby NHMike » Tue Jul 03, 2018 10:33 pm

I live in a suburban area and was able to get appointments with a local oncologist and radiology oncologist in a very short period of time. I went to get second opinions in Boston at Dana Farber and I think that it took me two weeks to arrange appointments - that due to navigating their systems. It would have been a lot quicker if I understood their intake process. Boston is an incredible place for health services.

Stage IIA is a gray area for chemo after surgery. An oncologist might recommend it or might not. There is a lot of experience on chemo on this board and we can tell you what to expect, which drugs are usually given, the form, and the side-effects. You can read some of the other threads on side-effects but it's often easiest to ask.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Lee
Posts: 5666
Joined: Sun Apr 16, 2006 4:09 pm

Re: Newbie

Postby Lee » Wed Jul 04, 2018 6:19 pm

Utwo wrote:
Caat55 wrote:Where do you live that you haven't been able to see an oncologist in 4 months?

Canada or another single payer country?
For me 2 month waiting for a surgery seems in line with Canadian situation.

Many Americans have not even heard about "Waiting times".
However in many countries it's a real issue.


For some people here in the USA, "waiting time" is a very real problem. I have a good friend, who suppose to have a good medical/insurance plan. When he first noticed the lump on his neck he tried to make an appointment with his PCP, 2 months wait. He was able to see a new doctor a week later. Around Nov 1 2017, he was told it was cancer. Surgery was not done until Jan 22, 2018 (almost 3 months since diagnoses). I told him many times to get a 2nd opinion, butt he felt he was in good hands. Day of surgery, they could not remove the mass it as it was too extensive. They started radiation to help shrink it and while it did help, it did not shrink it enough. Surgery was no longer an option. Today he is in hospice with just a few months to live. From the time of his diagnoses, he has lost 60 pds. Today he is skin and bones.

I wonder if things would be different for him today if he had been able to get into surgery within that first month of diagnoses.

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!

martd
Posts: 46
Joined: Tue Nov 21, 2017 3:48 pm

Re: Newbie

Postby martd » Wed Jul 04, 2018 6:50 pm

November of 2017 I called Mayo Clinic in Phoenix for a second opinion after finding out about my crc. They scheduled for the following day two appointments first with the surgeon second with onc. The following morning they called and asked for me to come in for a CT scan. It was at the appt with the surgeon I learned it was stage 4 with 17 liver Mets. After the appt with the onc he sent me down stairs to meet with the port surgeon, I was in surgery the following morning receiving the port and started chemo a week later. It was three weeks later and I still was waiting for the first onc to schedule my scan. This incredible treatment I'm receiving from Mayo continues, just yesterday I'm at my pre-op exam for my second liver resection, I told them I've been experiencing shortness of breath which was something new, that afternoon I had an EKG , heart echocardiogram, and x-ray then scheduled a CT scan for Thursday. After I got home they called to have me come in for the CT scan that evening.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT
12 rounds folfox , avastin / oxi
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 complete clinical response, rectal tumor is gone!
Rectal surgery postponed, wait and watch

Colonme
Posts: 7
Joined: Wed Jun 27, 2018 11:55 pm

Re: Newbie

Postby Colonme » Wed Jul 04, 2018 9:06 pm

Caat55 wrote:So many questions for you but there are way wiser people here then me. Your course of treatment is so unlike what I know or have read. Where do you live that you haven't been able to see an oncologist in 4 months?

I live in Vancouver, WA. They did things backwards. I started with a gastroenterologist, he passed me off to a general surgeon - not a specialist, who finally referred me to an oncologist - who is going on vacation and can’t see me until August. I had kidney cancer before this and everything was rush, rush, rush and done. This seems more serious and is crawling along...

Colonme
Posts: 7
Joined: Wed Jun 27, 2018 11:55 pm

Re: Newbie

Postby Colonme » Wed Jul 04, 2018 9:13 pm

my CEA was elevated: 6.2. It was a general surgeon, not a specialist and I’m not sure he was going to refer me to an oncologist until I mentioned it. I had kidney cancer a few years ago and everything was wham, bam, get ‘er done! This time they’re moving extremely slow and that’s making me nervous.

Colonme
Posts: 7
Joined: Wed Jun 27, 2018 11:55 pm

Re: Newbie

Postby Colonme » Wed Jul 04, 2018 9:15 pm

Utwo wrote:
Caat55 wrote:Where do you live that you haven't been able to see an oncologist in 4 months?

Canada or another single payer country?
For me 2 month waiting for a surgery seems in line with Canadian situation.

Many Americans have not even heard about "Waiting times".
However in many countries it's a real issue.


We used to be military. I learned to wait there...lol. I’m not used to waiting anymore.....

Colonme
Posts: 7
Joined: Wed Jun 27, 2018 11:55 pm

Re: Newbie

Postby Colonme » Wed Jul 04, 2018 9:16 pm

DarknessEmbraced wrote:Welcome to the group and sorry for your diagnosis!*hugs* I hope your meeting with the oncologist goes well!*hugs* I was diagnosed as stage 2a in 2014. Chemo wasn't recommended and I have been in remission since surgery.


Fantastic! Congratulations!

Colonme
Posts: 7
Joined: Wed Jun 27, 2018 11:55 pm

Re: Newbie

Postby Colonme » Wed Jul 04, 2018 9:19 pm

MissMolly wrote:
Utwo wrote:
Caat55 wrote:Where do you live that you haven't been able to see an oncologist in 4 months?

Canada or another single payer country?
For me 2 month waiting for a surgery seems in line with Canadian situation.

Many Americans have not even heard about "Waiting times".
However in many countries it's a real issue.


Extensive wait times for new patient appointments are not uncommon in the United States. Specialist appointments can be especially difficult to schedule in a timely manner.

Urban/metropolitan communities have a larger pool of specialists as opposed to rural/small town and can exacerbate discrepancies in terms of access to care and appointment wait times.

I love in Portland, Oregon - a large, metropolitan city on the west coast that is a hub for highly skilled software developers. Need to see a rheumatologist for evaluation of a possible auto-immune disorder? Expect an 8-10 week wait for a new patient consultation. Need to see an endocrinologist for diabetes management or to diagnose pituitary suppression due to corticosteroid use? Expect a 10-12 week wait for a new patient consultation.

Wait times are very real in the United States depending on the availability of the specialist that one needs to see.
Karen


Hello Portland! I live across the water in Vancouver, WA!

Colonme
Posts: 7
Joined: Wed Jun 27, 2018 11:55 pm

Re: Newbie

Postby Colonme » Wed Jul 04, 2018 9:34 pm

martd wrote:November of 2017 I called Mayo Clinic in Phoenix for a second opinion after finding out about my crc. They scheduled for the following day two appointments first with the surgeon second with onc. The following morning they called and asked for me to come in for a CT scan. It was at the appt with the surgeon I learned it was stage 4 with 17 liver Mets. After the appt with the onc he sent me down stairs to meet with the port surgeon, I was in surgery the following morning receiving the port and started chemo a week later. It was three weeks later and I still was waiting for the first onc to schedule my scan. This incredible treatment I'm receiving from Mayo continues, just yesterday I'm at my pre-op exam for my second liver resection, I told them I've been experiencing shortness of breath which was something new, that afternoon I had an EKG , heart echocardiogram, and x-ray then scheduled a CT scan for Thursday. After I got home they called to have me come in for the CT scan that evening.


Fantastic! That’s the way it went when I had kidney cancer. I haven’t had to wait like this for a very long time and I have no patience!


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