Just Diagnosed

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Rikimaroo
Posts: 270
Joined: Tue Dec 20, 2016 8:48 pm

Just Diagnosed

Postby Rikimaroo » Thu Jan 12, 2017 11:36 am

I am new here and posting for the first time. I am 38 years old with a young family.

This all started when I noticed blood in my stool and I thought maybe it is just a hemorrhoid and nothing else. Eventually after about 3 months of seeing this and not going away, I decided to do a colonoscopy per my Gastroenterologist's suggestion. He also thought it was most likely hemorrhoid being that I am young, most likely nothing else.

Unfortunately he found a tumor in my rectum about 12-14 CM from the anal verge (rectal cancer). They took a biopsy and found that it was malignant. The Whirlwind of emotional roller coaster hit and I was worried about living for my family. Eventually I started to get better and stayed positive and strong and know I can beat this. My Doctor recommended me to Cleveland Clinic in Weston - I live in FL.

I went in to meet with the Surgeon, Dr. Steven Wexner who used a scope to look and also check with his finger. He confirmed tumor and sent in for a 2nd biopsy. It came back as inconclusive, which I am not sure what that means, but the first biopsy came back as adeno carcinoma when the Gastro doc did it. In the meantime, I have changed my diet totally avoiding Red Meat totally and drinking lots of water, eating soursop fruits. My Surgeon had me to MRI, CT, Pet Scan and it all came back that there is a tumor. The tumor is possibly a T3N1M0, based on MRI. Because he sees one lymph node, the illiac node swollen, he put me at Stage III. From what I understand all this is curable and treatable, but I am still scared.

He scheduled Surgery for 1/3/2017 tentatively but when he got the MRI results, Pet Scan, he postponed and told me I need Chemo to shrink tumor. I met with the oncologist (hematologist) and Radiation Oncologist. The Chemo doc told me Xeloda at 1700 MG 3 in the morning and 3 in the night and I am going in to get measurements for Radiation Therapy soon. Each of these will begin on the same day, Xeloda and Radiation.

I am scared of the surgery mostly and wonder if it is possible to avoid after chemorad, but I will endure anything to move forward and live a long life for my family. Please give me some advice and your experience through all of this.

I never got a 2nd opinion, but going to Cleveland Clinic, I took as my second opinion, only not sure why the 2nd biopsy result came back inconclusive other then the Hematologist telling me they didn't get enough of the specimen. Does that make sense?

Thanks in advance for your advice and help
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left seminal vescial/pelvic sidewall - 10/7/2019 resection surgery, perm bag, requested
FolFiri 11/6 - 5 rounds

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ANDRETEXAS
Posts: 639
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Just Diagnosed

Postby ANDRETEXAS » Thu Jan 12, 2017 1:03 pm

To start with, Stage III is advanced, but curable. I had colon cancer, but friends and other people on this site has had rectal cancer and can better answer your particular questions. Radiation and chemo is the standard procedure for reducing the size of the tumor, but follow-up surgery is almost always recommended.....then additional chemo. Please don't google to find out your odds, statisitics, etc. It will not be helpful to you individually. Each person is different. I am sorry that you have to be here, but you can get valuable information from people who know what you're going through. Staying positive, now that you have a diagnosis, is key. Worrying about the unknown is worse. Your doctors will prepare a plan for you, and you will get through it. Stay strong....and face this diagnosis as you would any other obstable thrown in front of you. One day at a time ! Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

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muskokamike
Posts: 225
Joined: Tue Feb 25, 2014 4:38 pm

Re: Just Diagnosed

Postby muskokamike » Thu Jan 12, 2017 2:33 pm

Welcome to the group that no one wants to be part of. You are exactly where I was just over three years ago but you are much younger. There are many here who will post that were your age and younger and will have many more suggestions regarding additional genetic test. Yes, it looks you have caught it in time so take a deep breath you are in for a tough journey but it is doable. You need to listen to your doctors and...........

Rule#1 Stay the hell away from Dr Google, I had myself dead and buried five times already.

The chemo/rad is done to hopefully shrink the tumor and make surgery easier. My tumor was also a T3 and was close in size to a tennis ball. Trust me the smaller the tumor the easier the surgery will be when that day comes. I remember thinking that here I have this tumor inside me and I got to wait almost four months to get it out but the chemo rad needs time to work and even after your treatments you will still have a month to six weeks prior to surgery because the chemo/rad will still be working during this time. You are in the early stages take each day as it comes, there will be bad and good days and for me the majority were good.

Chin up and good luck.
Last edited by muskokamike on Thu Jan 12, 2017 2:39 pm, edited 1 time in total.
53M Dx rc10/31/13
WTF!
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
temp ileo
0/24 nodes pCR/pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
Feb/15 clear scope
July/15 clear CT scan
Feb/16 clear CT scan
Feb/17 clear CT scan
Feb/18 clear scope
Feb/18 clear CT scan
Sep/19 clear CT scan DISCHARGED!
CEA levels 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://kicknasscancersass.blogspot.com/

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muskokamike
Posts: 225
Joined: Tue Feb 25, 2014 4:38 pm

Re: Just Diagnosed

Postby muskokamike » Thu Jan 12, 2017 2:33 pm

delete double post
53M Dx rc10/31/13
WTF!
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
temp ileo
0/24 nodes pCR/pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
Feb/15 clear scope
July/15 clear CT scan
Feb/16 clear CT scan
Feb/17 clear CT scan
Feb/18 clear scope
Feb/18 clear CT scan
Sep/19 clear CT scan DISCHARGED!
CEA levels 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://kicknasscancersass.blogspot.com/

Rikimaroo
Posts: 270
Joined: Tue Dec 20, 2016 8:48 pm

Re: Just Diagnosed

Postby Rikimaroo » Thu Jan 12, 2017 2:47 pm

Thanks so much for the posts so far. Yes Dr. Google is very scary. I need to stop reading it.

The tumor is probably the size of an M&M. Doc put it at T3 because he see it going through some of the rectum. Initial Colonoscopy had it at 2.7 CM x 1.8, or something like that. I am at work so I don't have the exact numbers, but the MRI came back at around 3x CM....

Any advice on the Xeloda pills/radiation Therapy? yes young should help me alot, but it doesn't take away the nervousness, but through this forum I will have the strength to move forward.

I just signed up for the gym and eating way healthier then I ever had.

I will keep everyone posted. Thanks so much

Rikimaroo
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left seminal vescial/pelvic sidewall - 10/7/2019 resection surgery, perm bag, requested
FolFiri 11/6 - 5 rounds

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Just Diagnosed

Postby Maia » Thu Jan 12, 2017 3:10 pm

Hi, sorry you have to be here.
Just because you say you want to stay on top of this, I mention the existence of two trials with immunotherapy (not chemotherapy) to try and prevent recurrence in patients with Stage II or III CRC.
There is one in Florida, for Stage II pts who are about to undergo surgery, to receive a vaccine along with it. I know you say you're Stage III, but it might be worth checking with the trial investigator, to know if they can offer something similar there, it's in Halifax Health Medical Center, Port Orange, Florida: https://clinicaltrials.gov/ct2/show/NCT02448173

This other is for Stage III patients, in Duke University Medical Center, Durham, North Carolina. A fellow posted in the board, past September:

Immunotherapy with CEA(6D) VRP Vaccine (AVX701) clinical trial at Duke for patients with Stage III Colorectal Cancer
Link: https://clinicaltrials.gov/ct2/show/NCT01890213
A year ago, Duke told me that the clinical trial requires that a patient visit Duke in North Carolina many times, all seasons of the year (you cannot have your non-Duke oncologist do the testing and evaluation). As part of the study, at least one CT scan is done on you.

Instead of calling 919-668-1861 like the clinicaltrials.gov page indicates, you might get information faster by trying to schedule an appointment with Duke's gastrointestinal oncology center. You can be seen by Dr. Michael Morse or one of his colleagues.

ClinicalTrials.gov Identifier:
NCT01890213 viewtopic.php?f=1&t=53238#p443145


Just mentioning this, because they are things that usually people come across later, when maybe can't make use of them.
Wishing you the best.

Rikimaroo
Posts: 270
Joined: Tue Dec 20, 2016 8:48 pm

Re: Just Diagnosed

Postby Rikimaroo » Thu Jan 12, 2017 3:13 pm

Just wanted to be more clear regarding the the Stage. They are not 100% sure if it is Stage III, the doctor assumption is that just because he sees on Lymph node the is swollen, once a lymph node is swollen they automatic stage you at 3, but when they do surgery is when they really know the stage ;)....Thank you for the information.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left seminal vescial/pelvic sidewall - 10/7/2019 resection surgery, perm bag, requested
FolFiri 11/6 - 5 rounds

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WriterGirl1969
Posts: 513
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Just Diagnosed

Postby WriterGirl1969 » Thu Jan 12, 2017 4:48 pm

Rikimaroo wrote:I am new here and posting for the first time. I am 38 years old with a young family. Thanks in advance for your advice and help


Hi Rikimaroo.
As we say, sorry you have to be here, but glad you found us!
As you'll see from my signature info, I'm T3N1M0, so in a similar boat, although my tumor was in the descending colon vs. rectum. Differences mostly are that for colon it's surgery first then chemo, while for rectal they do chemo/rad before to shrink the tumor. Also, my tumor was much larger than yours at about 12cm (about the size of a fist). We all can totally identify with that feeling when you get the news, and like you I have a young family (now 5-year-old son at home), so also totally understand where your thoughts go with regard to that. There are a ton of informed people here who will help to give you some of your power back.
Wow - Cleveland Clinic is a long way from Florida! Still, if you find the right doctor and treatment, that's what's important. We always tell everyone to make sure your surgeon is a BOARD CERTIFIED colo-rectal. Most likely is at CC, but just sayin'. :) As you pointed out, your staging is a guess right now, so probably too soon for you to get too far ahead of yourself in terms of what will come next.
As far as starting chemo/rad, everyone reacts to these things differently. Personally, I was on Xeloda and did rather well with it. I worked throughout, and never had any symptoms that were too severe to prevent that. You're already increasing fluids, which is great for keeping Xeloda side-effects at bay. I haven't had radiation, so I can't speak to that side, but keeping your spirits up and your body healthy can never be bad. Surgery for me was over in about 1.5 hours (relatively fast per my surgeon), and I had surgery on a Thursday and was home on Sunday. Getting up and walking as soon as you can after surgery is the best thing, as it will get stuff moving in the lower extremities. Can't go home til you poop. :) Try not to get yourself too nervous. Deep breaths. One step at a time. We're here for you, and if you ever need more personal advice from a Stage III-er, don't be afraid to private message me also.

Keep us posted.

Hugs and Prayers,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

Rikimaroo
Posts: 270
Joined: Tue Dec 20, 2016 8:48 pm

Re: Just Diagnosed

Postby Rikimaroo » Thu Jan 12, 2017 5:11 pm

Tracy,

Thank you so much for your Post. Cleveland Clinic, Weston is in Florida :D :D :D :D

The doctor and there Colo rectal department is Number one in South Florida and the surgeon that is doing the work on me, I heard is very well know around the nation.

I am glad your past most of this and glad your doing well. I will most likely have either a ileostomy or ostomy, not sure on which one, need to ask surgeon; temporarily. Then will have to do a reversal.

I am nervous about surgery mostly, I think I will be fine with Chemorad, but always scary :shock: :shock:

It is always nice to hear other's positive stories and outlook.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left seminal vescial/pelvic sidewall - 10/7/2019 resection surgery, perm bag, requested
FolFiri 11/6 - 5 rounds

User avatar
SEWHAPPY
Posts: 86
Joined: Tue Nov 15, 2016 4:25 pm

Re: Just Diagnosed

Postby SEWHAPPY » Thu Jan 12, 2017 5:49 pm

Welcome to the forum - this site is very helpful and supportive. Lots of great info to be found using the search functions or just posting a request for help. Best wishes with your treatment plan! Hugs and prayers - Laurie
Female age 51.
CC diagnosed 10/13/16 at first colonoscopy.
Lap colon resection 11/21/16, removed ovary & fallopian tube.
T4N0M0, stage IIC.
Lynch negative.
Power port installed 12/19/16.
12 rounds FOLFOX done 6/16/17.

Nelbel
Posts: 37
Joined: Thu Nov 17, 2016 11:02 pm

Re: Just Diagnosed

Postby Nelbel » Thu Jan 12, 2017 6:03 pm

Hi! I'm so sorry you're here.

I was in your same place 1 year ago. At the age of 41, I was diagnosed with stage 3 rectal cancer with two young boys at home (9 and 7 at the time). Same as you, my only symptom was blood. I had to push my doctor to refer me to a GI who immediately got me in for a colonoscopy. He knew it was cancer, before we even had biopsy results. My tumor was about 9cm up and about 5 - 6cm in size. Not having surgery didn't even cross my mind. I met with 3 surgeons and not one even suggested such an option. The first surgeon told me he would have to remove my entire rectum however the other two were more reasonable. Two did it laparoscopicly and one did an "open" surgery. Also, two of the surgeons (the laproscopic ones) said I would for sure need a temporary ileostomy. The "open" one said he hoped he wouldnt have to give me a bag but he wouldn't know until he opened me up (his leak test showed a tiny leak and I ended up w a bag for 6 mos). I highly recommend you talk to more than one surgeon and understand their plans.

There is a clinical trial to see if chemo only is as effective as radiation and chemo (from a recurrence stand point I believe). I would look into this, at least talk to your doctors. I tried to get into it however the surgeon thought my margins were too close to the boundaries of where they want them. The trial would have been six rounds of chemo, surgery and then six more rounds. Instead, the standard of care for me was 28 days of radiation and oral chemo, surgery and 8 rounds of chemo. I'm not going to lie, 2016 was a long, rough year and the radiation for me, was the worst part. The radiation however was very effective; my tumor was basically gone. Despite it being gone, they still cut out the whole area where it was and generous margins around. With the trial, the tumor would have had to shrink by at least 20% (otherwise you would have to do the radiation). Just my two cents - others may have tolerated the radiation better so may disagree.

Overall, I tolerated the oral chemo really well. The other chemo was not enjoyable but I got through it.

Feel free to PM me with anything as you go through this. It will be hard, but you can do and you will be ok! Best of luck
DX Dec 2015 at age 41
Stage 3 RC
Radiation and xeloda
May 2016 LAR and temp ileo
8 rounds chemo
Nov 2016 ileo reversed!

Rikimaroo
Posts: 270
Joined: Tue Dec 20, 2016 8:48 pm

Re: Just Diagnosed

Postby Rikimaroo » Thu Jan 12, 2017 6:52 pm

Thanks Nelbel. I am glad to see your doing well, god bless you. I have the same exact thought process as you and tell everyone the same thing, that its going to be a uphill battle and a rough year, but staying positive and moving forward as there is a light at the end of the tunnel.

Question regarding the radiation therapy, since it shrunk to nothing, which sometimes radiation can totally get rid of the cancer, based on the watch and wait approach like I read (habr gama), did you have a hard time deciding at that point not to do surgery or do it no matter what? I understand sometimes, its best to just get the bad tissue out, just in case. Once they got it out, what were the results from pathology regarding stage, etc...

Thanks again for all the posts :)
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left seminal vescial/pelvic sidewall - 10/7/2019 resection surgery, perm bag, requested
FolFiri 11/6 - 5 rounds

DarknessEmbraced
Posts: 3427
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Just Diagnosed

Postby DarknessEmbraced » Thu Jan 12, 2017 6:58 pm

Welcome to the group. I hope that your chemo and radiation go well!*hugs* My tumor was at the junction between my sigmoid colon and my rectum.(rectosigmoid junction) My tumor was also T3 but there was no spread. Lymph vascular invasion undetermined. My tumor was 5.8cm.
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
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Lad143
Posts: 18
Joined: Fri Jan 27, 2012 2:28 pm

Re: Just Diagnosed

Postby Lad143 » Thu Jan 12, 2017 8:58 pm

My DH was stage 2 rectal cancer - diagnosed 5 years ago today. He was 39 at the time and kids were 9, 14 and 19. We were completely scared of the unknown and this board can provide a wealth of information.

For DH is was 28 rounds of Xeloda and radiation. For the Xeloda he had some issues in the beginning until he started to eat 5-6 smaller meals a day to keep food in his system on a regular basis. The radiation was ok as well. His biggest side effect was fatigue until the later rounds of radiation where it was painful for bowel movements. He finished the chemo/rad mid March and was schedule for laparoscopic surgery early May. The surgeon could not see clearly enough so it ended up being open surgery. The chemo/rad had a complete pathological response and the tumor was gone. After surgery DH had a temp ileostomu and started more Xeloda. He did not complete full chemo plan as the Xeloda caused heart spasms and almost killed him. Anyhow in Sept he had surgery to reverse ileo.

Since then is has just been monitoring with surgeon and oncologist. At first every 3 months, then every 6 now once a year. Oncologist does blood work prior to each follow up and physical exam along with CT scan at regular intervals. Surgeon does scope in the office to check connection and view lower colon. GI dr did colonoscopy at 1 year and again at 4 years. All clean - but staying on 3 year plan to monitor.

It seems like a lot. Just take it one segment at a time.

Best of luck!

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: Just Diagnosed

Postby Swirdfish » Thu Jan 12, 2017 11:55 pm

Welcome to the board.

Same situation as you, but im going through my post chemo now which is folfox. Radiation I found has hard, which was 6 weeks, but the sixth week and 3 weeks after is where it really hit me. Major stomach upsets etc from the radiation which seen me go to the ER and on powerful pain meds for 4 weeks. This all happened after radiation, as its a build up I guess or maybe they hit the wrong spot I dunno.

I had ULAR open surgery and I can say I would not want to go through it again, but yes usually they do radiation and chemo before surgery, and mine had shrunk quite abit. Its better this way so you can get the clear margins around the tumour, don't want to leave anything behind.

Folfox is okay, my onc cancelled my next appointment because he thinks im doing so well he doesn't need to see me. Behinds pins and needles in fingers against cold items, burning throat on hot food, and fatigue iam doing quite well, but infusion weeks are like living in a fog. I talk to people, and afterwards I cant recall what they said. maybe a good thing.

I see a lot of people on first diagnosis do the whole fit thing, no meat, full vegetarian vegan only carrots thing, it may help but for me it was too much. Does it really help, I think the gym does when you do chemo to make you feel better. My family really pushed for the whole overboard natural remedies but is it really needed. not sure.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17


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