Just diagnosed

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annieliz
Posts: 10
Joined: Fri Jul 26, 2019 5:13 pm

Just diagnosed

Postby annieliz » Fri Jul 26, 2019 7:52 pm

First, thank you, everyone, for all of the great information you provide.

Anyway, today I got the results of my colonoscopy biopsy and it tuns out that they found: Rectum: Adenocarcinoma, moderately differentiated.
All my blood work is fine, no anemia and CEA is 0.5.
Next step is a CT Scan to determine stage.

Here is my dilema - My gastroenterologist suggested finding a local oncologist, and if and when I need a surgeon, to find one at one of the major hospitals in NYC (about 1 hour from my home.) Does anybody have thoughts about that? While I was waiting for the results, I was doing some research and ended up thinking that I should just go somewhere like Memorial Sloan Kettering or New York Presbyterian, even though it's not that close to home. His feeling is that the chemo/radiation treatments are pretty much standard, and having an oncologist close to home would work best for times when I don't feel well, etc. Other things I've read state that it's best for the oncologist and surgeon to be on the same "team." Maybe I am getting ahead of myself but I want to be prepared to act quickly.

Again, many thanks for all of your informative posts. I think it's the reason I am totally not freaking out right now, but have entered warrior mode.
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19 - 1.9
8/16/19 begin FOLFOX

Rock_Robster
Posts: 184
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Just diagnosed

Postby Rock_Robster » Fri Jul 26, 2019 10:38 pm

Hi annieliz,

Sorry to hear of your diagnosis. Really glad to hear though that this forum is of help to you.

This may not be a popular opinion, but my inclination in general would be that if your staging comes back at I or II, you could probably be well-handled by a competent local oncologist, then go to a major hospital for surgery. If it came back at III or IV, then I’d be heading to MSK to make sure the whole plan (chemo, radiation, surgery) is properly integrated.

However my first impression was that given you’re “only” an hour away from MSK, then I’d be inclined to go anyway. However I’m also conscious an hour may be a lot more inconvenient for some people that others, so I won’t try to make a judgement on that.

Rectal cancer can be slightly more complicated, due to the need to work radiation therapy in with the plan, and also an often more complex resection. 5cm is also getting on the lower side, so sphincter-sparing becomes a priority. In this case it’s definitely better to err on the side of a high-volume cancer centre that uses a multidisciplinary team approach.

Just my $0.02 - best of luck for the staging!

Rob
Male 37 yr; Melbourne, Australia. BMI 24
10/2018 Dx 3.5 cm RC adenocarcinoma, 12cm from AV
Mod diff (G2), EMVI+, LVI+, PNI-
3 local LN; 4 liver mets, resectable
pT3 pN1a pM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
12/18 - DVT
3/19 - Liver resection (open); R0
4-5/19 - 25 x pelvic radiation w Xeloda; complete metabolic response (TRG 3)
07/19 - ULAR (robotic), temp ileo. R0; 1/27 LN positive
08/19 - FOLFOX x 2-4

User avatar
ginabeewell
Posts: 269
Joined: Wed Oct 24, 2018 10:30 am

Re: Just diagnosed

Postby ginabeewell » Sat Jul 27, 2019 10:22 am

I live in a suburb of Chicago and opted to do the 45-60 minute drive downtown to get treated at Northwestern versus the local cancer center. I’m glad I did. And actually now I fly monthly to MSK so I think if I were just an hour away from there I would probably opt in for that!!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

annieliz
Posts: 10
Joined: Fri Jul 26, 2019 5:13 pm

Re: Just diagnosed

Postby annieliz » Sat Jul 27, 2019 10:42 am

Thank you, Rob and ginabewell. I agree with your great advice - the trip to NYC is pretty easy and I am hopeful that I will be able to travel by myself, either driving or by train and subway. They also have a local facility, so that will be helpful.

Thanks again for your replies. It's great to have people to talk to!

Anne
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19 - 1.9
8/16/19 begin FOLFOX

debb
Posts: 174
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: Just diagnosed

Postby debb » Sat Jul 27, 2019 10:44 am

I live in NJ and go to MSKCC. It's worth the drive. And now they have spaces in Monmouth, Bergen and Basking Ridge. Also Long Island?

When i was first diagnosed by a local gastro, I immediately went to MSKCC. I had surgery there and then when it came time for chemo, my doc recommended someone local, a former colleague as MSK, because as my doc said...no need to struggle through the Lincoln Tunnel every other week for the same treatment. So I received local treatment, but returned to NY for every scan or real issue. My MSK doc ran the show.

As time went by, they opened a space in Monmouth, which is where I go now for my treatments. My local doc moved offices at around the same time MSK Monmouth opened, so it was the easiest thing to do. So I'm still under the care of my MSK doc and get treatment locally at MSKCC. I feel very lucky to have access to this quality of care.
Stage 3C, Dx at 42, mom of 4
Colon resection 7/08
Folfox 9/08-2/09
Met to right ovary, both ovaries removed 7/10
HIPEC 8/10
VATS 7/12, 2 nodes, right lung
10/14 3 lung nodes, Stivarga clinical trial
3/15-7/15 Folfiri & avastin for lung things
Break! One+ year of freedom
8/16 Folfiri & avastin..lung things again
Break! 10 months of freedom
1/18 rib mets, radiation, folfiri & avastin
1/19 rib mets again, radiation, folfiri & avastin

NHMike
Posts: 2078
Joined: Fri Jul 21, 2017 3:43 am

Re: Just diagnosed

Postby NHMike » Sat Jul 27, 2019 9:37 pm

My GI set me up with a local oncologist and radiation oncologist and suggested a surgeon. I went for second opinions at Dana Farber in Boston and Brigham and Womens for surgery. The Dana Farber Oncologist and Radiation Oncologist said the same thing as the locals so I went with the locals. Many on this forum recommended a Board-Certified Surgeon and so I chose the surgeon in Boston. So I had radiation and chemo for neo-adjuvant locally, surgery in Boston, then local for adjuvant chemo and I'm on surveillance in Boston as I only have to go four times a year.

I would recommend the best surgeon that you can find. But my experience is that chemo and radiation is pretty standardized.
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; 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, 2/12 1.2
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
2/19: Clean CT

Phillypatient
Posts: 30
Joined: Sun Aug 05, 2018 11:28 am

Re: Just diagnosed

Postby Phillypatient » Sun Jul 28, 2019 9:03 am

Sorry to hear of your diagnosis.
You get one shot to destroy this thing. Go to the best. Go to MSK. They do the cutting edge research and they are worth the drive. They are leading the research on watch and wait so you may be able to avoid the surgery.
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

annieliz
Posts: 10
Joined: Fri Jul 26, 2019 5:13 pm

Re: Just diagnosed

Postby annieliz » Sun Jul 28, 2019 12:15 pm

Thank you, all, for taking the time to reply. I am going to call MSK for an appointment on Monday.
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19 - 1.9
8/16/19 begin FOLFOX

AmyG
Posts: 216
Joined: Tue Dec 25, 2018 8:08 pm

Re: Just diagnosed

Postby AmyG » Sun Jul 28, 2019 3:58 pm

I'm getting all of my treatment locally, well, two hours away. From everything I've read, I'm getting the same treatment as someone going to a big name hospital.

My surgeons are all board certified.

These guys have one chance to get me NED. So far, so good.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19

jmn
Posts: 48
Joined: Sat Aug 11, 2018 8:20 pm
Location: New York/Philadelphia

Re: Just diagnosed

Postby jmn » Tue Jul 30, 2019 12:00 am

annieliz wrote:Thank you, all, for taking the time to reply. I am going to call MSK for an appointment on Monday.

Great choice. You said that you’re just about an hour outside of the city, but didn’t say in which direction. In addition to locations in New York City, Long Island, and New Jersey (Montvale and Basking Ridge), MSK also has a beautiful facility in Westchester County—in West Harrison, north of the city, not far from White Plains.

Although I live in Philadelphia, I am originally from the New York metro area and a lot of my family and friends still live in Rockland and Westchester counties. Although I could have been treated at Penn’s Abramson Cancer Center in Philadelphia, I decided to go to MSK. Dr. Leonard Saltz, head of their colorectal oncology section, is my oncologist and I could not be more pleased with the care that I have received from him and all of the folks there. I also think the world of my MSK nephrologist, Dr. Insara Jaffer, to whom I was referred when I began experiencing abnormally high levels of creatinine. She is as smart as a whip, and I really appreciate the personal attention and exceptional care that she provides.
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Lap-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
Stage IIB, pT4aN0 (first pathology DX: pT3N0)
0/24 lymph nodes, LVI present, PNI present, surgical margins clear, MSS
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: Xeloda (capecitabine) monotherapy, 10-16-18 to 4-21-19
CEA: 4-19, 3.4; 5-19, 3.0; 7-19, 3.0
NED: 5-28-19 :D
Clear colonoscopy, 7-15-19 :D

annieliz
Posts: 10
Joined: Fri Jul 26, 2019 5:13 pm

Re: Just diagnosed

Postby annieliz » Tue Jul 30, 2019 5:26 am

Thanks! I did call MSK yesteday morning.They took my information and called back a couple of hours later, offering me an appointment with Dr. Julio Garcia-Aguilar on 7/31. I'm happy I could get in so quickly, but also nervous about what I am facing. I do live north of the city, but the earliest appt. in West Harrison was 8/8, so I opted for the NYC location.

Thank you again for posting your advice and sharing your story. This board is such a wonderful resource.
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19 - 1.9
8/16/19 begin FOLFOX

jmn
Posts: 48
Joined: Sat Aug 11, 2018 8:20 pm
Location: New York/Philadelphia

Re: Just diagnosed

Postby jmn » Wed Jul 31, 2019 12:09 am

annieliz wrote:Thanks! I did call MSK yesteday morning.They took my information and called back a couple of hours later, offering me an appointment with Dr. Julio Garcia-Aguilar on 7/31.

Thinking of you today as you head into the city for your appointment with Dr. Julio Garcia-Aguilar. I read his bio and some patient reviews—sounds like you’re in very capable hands.
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Lap-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
Stage IIB, pT4aN0 (first pathology DX: pT3N0)
0/24 lymph nodes, LVI present, PNI present, surgical margins clear, MSS
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: Xeloda (capecitabine) monotherapy, 10-16-18 to 4-21-19
CEA: 4-19, 3.4; 5-19, 3.0; 7-19, 3.0
NED: 5-28-19 :D
Clear colonoscopy, 7-15-19 :D

annieliz
Posts: 10
Joined: Fri Jul 26, 2019 5:13 pm

Re: Just diagnosed

Postby annieliz » Mon Aug 12, 2019 8:50 am

Thank you, jmn! Things moved very quickly as soon as I met with Dr. Julio Garcia-Aguilar. He did a biopsy during the appointment and scheduled blood work and a CT scan that afternoon. Two days later, I met with the oncologist, who is also great. MRI was yesterday, port implant is today, and Folfox starts Friday. Very nervous, but happy treatment is starting soon. In the meantime, I am trying to stay as positive as possible and hoping that I can stay fairly "normal" during the next 4 months.
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19 - 1.9
8/16/19 begin FOLFOX

FightCRC
Posts: 37
Joined: Fri May 25, 2018 10:39 pm

Re: Just diagnosed

Postby FightCRC » Mon Aug 12, 2019 11:06 am

To offer more perspective, we relocated from CA to NJ to get treated at MSKCC. We stayed there for a year, and are now flying in once a month. It's been worth it.

For Stage IV treatment, I would recommend being seen at the main campuses in Manhattan, and not at a satellite. The satellites are great for services such as infusion and scans, but the most experienced doctors are in Manhattan.

Dr. Garcia-Aguilar is a key researcher, and advocate, of the Habr-Gama "Watch and Wait" protocol. With a clinical complete response to total neoadjuvant therapy, you may not need surgery. I wish you all the best with treatment. You are in good hands.


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