New member seeking support

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Reviresco
Posts: 26
Joined: Mon Mar 26, 2018 3:47 pm
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New member seeking support

Postby Reviresco » Mon Mar 26, 2018 4:08 pm

Hi all, I’m a new member to the club. I live in Cape Elizabeth, Maine, which is just outside of Portland. I’m 41 years old with a wife and two beautiful daughters, ages 12 and 10.

I had a colonoscopy Thursday and learned I have a 9cm circumferential tumor in my ascending colon, just above the ileocecal valve. The reason I went for the scope is because I’ve been struggling with chronic fatigue for the past several months. Bloodwork two weeks ago showed I was iron deficient anemic (hemoglobin 9, hematocrit 30, ferritin 5, serum iron 17). Other than fatigue, I have not had any abdominal or stool symptoms, which I understand is typical for a right-sided tumor, even a large one like mine. I wish there had been more alarm bells going off (-;

CT scan on Friday showed no evidence of distant metastasis. All other organs and lymph systems look clear at this point. The scan showed one enlarged node and other nodes in the lower right quadrant mesentery that could suggest local metastasis, but we don’t know yet. We are waiting on the pathology report from the biopsy done during the colonoscopy, and a CEA test. I should get those results this week sometime. I’m scheduled to meet with a surgeon/oncologist on Wednesday, so hopefully we know more then and can schedule the hemicolectomy.

I’m 6’4” 235 pounds, and have been in pretty good health all my adult life. I walk 2-3 miles per day with my dog, and up until the past few months enjoyed kickboxing, swimming, weightlifting, etc. This diagnosis has hit my family, obviously, like a ton of bricks. We are experiencing all of the emotions as they come, and we're trying to process as best as we can.

I found this forum a few days ago, and I have already taken great comfort and strength in reading your posts. I’m looking for some encouragement and any advice you might have. Are there questions I should ask when I consult with the surgeon? Anything I can do now to improve my chances of a successful surgery? Things I need to know about the pathology report (so nervous to see the results)?

Thank you so much,

Trevor
42 year old male, dx CC 3/22/18
9.5 x 5.5 x 2.5 cm tumor in ascending colon. T3N1Mx
MSI-H, Lynch Syndrome (PMS2 mutation)
4/4/18 Right hemicolectomy
1 of 25 lymph nodes, clear margins
Four cycles Capeox chemo. CEA 1.4
8/27/18 CT scan shows one liver spot. Two radiologists say it's not a met.
11/12/18 Oops... CT and MRI confirm liver met.
11/28/18 Liver resection
2/14/19 Recurrence in liver
4/9/19 Liver resection #2
8/22/19 Recurrence in liver. CEA 11.7
8/30/19 Started immunotherapy (Ipi-Nivo combo)

retiredteacher
Posts: 115
Joined: Sat Oct 21, 2017 1:34 pm

Re: New member seeking support

Postby retiredteacher » Mon Mar 26, 2018 5:26 pm

Hi Trevor, Welcome - you have come to the right place - many caring and knowledgeable people here. Importantly, you came here early - you should be able to get good insight each step of the way. You might consider setting up an NCCN account (https://www.nccn.org/professionals/phys ... fault.aspx) and checking out the information for patients. For some people, this may be TMI, but others, like me, need that detailed information. Know that this type of cancer can be beat - welcome again ...
Terri
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

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

Re: New member seeking support

Postby Kick'nAssCancer'sAss » Mon Mar 26, 2018 5:48 pm

Trevor

Your journey is just beginning. You have come to the right place, I learned more here than from anywhere else. Take a deep breath and take one day at a time. There will be bad days and hopefully more good days. My number one advice is stay away from Dr Google. I had myself dead and buried five times, that was four years ago.

Chin up
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/

Alyce
Posts: 2
Joined: Mon Mar 26, 2018 5:48 pm
Facebook Username: montana40387

Re: New member seeking support

Postby Alyce » Mon Mar 26, 2018 5:53 pm

I am seeking support. My mom was diagnosed with stage 4 on Valentine’s Day. They took out 12 inches of her colon, didn’t get all tumors out. She has spots on liver and on stomach and small intestines. I’m lost. I have a big family but it’s so hard to talk to them because I know they are hurting also. We are almost all of us chritians bad believe God can heal her if it be His will. Some are mad at him and I understand that too. But I have to keep my faith or I’d lose if altogether. Thank you for reading this. God bless you all.

Utwo
Posts: 285
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: New member seeking support

Postby Utwo » Mon Mar 26, 2018 6:47 pm

Trevor,

What kind of polyp do you have?
Is it pedunculated or sessile?
Why hasn't it been removed during colonoscopy?
What are your next steps?

Welcome on board and good luck!
This cancer singamadgig is a lottery and you can't predict the future.
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

tcross
Posts: 9
Joined: Mon Mar 26, 2018 6:42 pm
Facebook Username: Tadd L Crosslin

Re: New member seeking support

Postby tcross » Mon Mar 26, 2018 7:01 pm

Trevor,

I went through the exact same thing you are experiencing now almost two years ago. In May of 2016, I experienced severe abdominal pain and rushed to the ER. After surgery to remove my appendix, a day later pathology comes back with cancer on the tip of it. The doctor walks in and informs me I have to undergo another operation. I had a right hemicolectomy to remove a tumor in my ascending colon. 5 of 12 lymph nodes were infected along with a golf ball size tumor right in the same location as yours. I was 40 at the time with twin 12 year old boys. Initially, I was in a stage of shock and wrote myself off for dead after going to google (don't do it).

Fast forward 22 months later, I received 8 treatments of FOLFOX and 4 with 5FU only finishing in December of 2016. Before chemo started, I got a second opinion at MD Anderson and was advised the same as my doctor prescribed with Texas Oncology. FOLFOX is standard treatment for Stage 3 folks so I chose to undergo chemo close to home. Since finishing chemo, my CEA levels have returned back to normal and the four CT scans I have had since have all been clear outside of five small lung nodules that remain unchanged after my first scan in September of 2016.

I had a Doctor's visit today to review my scans from this month and blood work. My Doctor was very optimistic with my progress as the first 2-3 years are when reoccurrence is at is highest probability and I'm close to two now.

You can get there too...Stay positive
5/16 - Diagnosed Stage 3B. 5/11 LN involvement.
6/16 - 12/16 - FOLFOX.
12/16 - 6/19 - NED
7/2019 – peritoneum involvement. 8 rounds of FOLFOXFIRI.
1/2020 – CRS/HIPEC performed.
4/2020 – 4 rounds of FOLFOX.
7/2020 - Rise in CEA. Started Avastin/Xeloda 10-15 lung nodules.
11/2022– FOLFIRI after CEA was rising

Dh13
Posts: 7
Joined: Sun Mar 25, 2018 9:49 am

Re: New member seeking support

Postby Dh13 » Mon Mar 26, 2018 7:24 pm

Hi Trevor,

I traveled along a similar path and in the same area of the country. I live in Portland. It is a very upsetting, unsettling experience, but you will manage the treatment well. I was able to maintain my “regular” life fairly well. The hardest part was definitely the emotional part. Physically, for me anyway, it was not bad at all.

Who is your surgeon? Oncologist? You can email me, too, if you’d rather. If I could change anything, it would be to ask more questions of my oncologist. My surgeon was a rock star.

Denise

orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: New member seeking support

Postby orlar » Mon Mar 26, 2018 8:07 pm

Hi Trevor,

Sorry you had to come to a cancer site, but glad you made it here. As I have found out, there is a wealth of very knowledgeable members on the forum.
I know it's hard, but try to take a breath. One of the early posts I read when I joined stated "this is not a sprint, but a marathon". There will be ups and downs in the days ahead and this forum will always be a good source of info and a place you can also rant/rave/vent. Good luck and stay positive!
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

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O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: New member seeking support

Postby O Stoma Mia » Tue Mar 27, 2018 12:03 am

Reviresco wrote:... I found this forum a few days ago, and I have already taken great comfort and strength in reading your posts. I’m looking for some encouragement and any advice you might have. Are there questions I should ask when I consult with the surgeon? Anything I can do now to improve my chances of a successful surgery? Things I need to know about the pathology report (so nervous to see the results)?

Thank you so much,

Trevor

Here are some questions you can ask your doctors.


You could also ask the surgeon whether he is planning to remove your ileocecal valve during the surgery, because there are big implications if this is the case.

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: New member seeking support

Postby Beckster » Tue Mar 27, 2018 7:16 am

Welcome to the club, but sorry that you had to find us. I too had a circumferential tumor in the ascending colon, cecum to be exact. It was found during a colonoscopy screening for my 57th birthday...Happy Birthday to me :shock:. I had no symptoms. Right sided colon cancer does not have symptoms until it is more advanced. With little symptoms, it sounds as if it was caught early like mine. Went for preop bloodwork, ct scan, chest xray before the biopsy came back. Then the cancer was confirmed, my GI suggested a surgeon. First and foremost, you need a Colon Rectal Surgeon...very very important. People on this forum are from all around the world and will be able to help you throughout your journey.
Good luck and know that we are always here for you. You can see my type of cancer in my signature below.

Beckster
57/F
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
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 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, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

Reviresco
Posts: 26
Joined: Mon Mar 26, 2018 3:47 pm
Contact:

Re: New member seeking support

Postby Reviresco » Tue Mar 27, 2018 7:57 am

Thank you all so much for your encouragement and information! It is incredibly helpful.

I'm waiting on the biopsy pathology report and I'm meeting with the surgeon-oncologist tomorrow. Hopefully I will know more then. My CEA came back elevated -- 10.5. Ugh. But I'm trying not to read too much Dr. Google, and understand that every case is unique.

I will post again after meeting with the surgeon.

Trevor
42 year old male, dx CC 3/22/18
9.5 x 5.5 x 2.5 cm tumor in ascending colon. T3N1Mx
MSI-H, Lynch Syndrome (PMS2 mutation)
4/4/18 Right hemicolectomy
1 of 25 lymph nodes, clear margins
Four cycles Capeox chemo. CEA 1.4
8/27/18 CT scan shows one liver spot. Two radiologists say it's not a met.
11/12/18 Oops... CT and MRI confirm liver met.
11/28/18 Liver resection
2/14/19 Recurrence in liver
4/9/19 Liver resection #2
8/22/19 Recurrence in liver. CEA 11.7
8/30/19 Started immunotherapy (Ipi-Nivo combo)

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: New member seeking support

Postby Deb m » Tue Mar 27, 2018 8:05 am

We were in the same position 7 years ago. My husband was diagnosed with a tumor in his cecum, which is the junction where the small intestine meats the large. Pretty much where yours is. He had his cecum along with 15 inches of his colon removed and 24 lymph nodes. We also had two relatively small boys at the time, age 11 and 12. It was a very difficult time for us all. Our world was turned upside down and inside out in one minute. I'm happy to report, after surgery and 12 rounds of folfox my husband has been NED for a bit over 7 years now.

It seems like you'll never get to this point with so much in front of you and such uncertainty, but you will. Things will calm down a bit once you start treatments and get all the biopsy results from surgery. Hang in there.

I will be praying for a great outcome!

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: New member seeking support

Postby Caat55 » Tue Mar 27, 2018 11:24 am

Hi Trevor,
One thing to begin is to work on the anemia. I was and still am struggling with anemia. I could not tolerate the iron infusion the doctor recommended, now post surgery and doing Mop up chemo. My anemia continues to be a concern but my oncologist says now isn't the time to fix it. So my advice, do as much to get some normal numbers in, the treatment for this disease is hard, fatiguing and being anemic only adds to it.
Susan
Do at 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
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: New member seeking support

Postby NHMike » Tue Mar 27, 2018 11:36 am

I'm in NH and was diagnosed with Stage 3B Rectal cancer so mine is different. I went to Dana Farber Cancer Institute for second opinions and had the surgery done at Brigham and Women's though my chemo and radiation were done locally. Mass General Hospital and Dana Farber/Brigham and Women's are top-ranked cancer centers should you need a second opinion and/or a board-certified surgeon.

Feel free to ask questions - the journey is very long and there are things that pop up out of the blue. You have lots of company here too.
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

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

extra chances

Postby rp1954 » Tue Mar 27, 2018 3:51 pm

You are early enough after diagnosis to get some extra chances and serious advantages if you do some reading and take a few proactive steps today and this week. With thanks to OSM (she has several several posts that are valuable to read):

O Stoma Mia wrote:
rp1954 wrote:I would invest in extra initial blood testing, even though it is most useful and sensitive starting before surgery...

In my opinion, what rp1954 suggests is very important and is time-sensitive -- i.e., there is a window of opportunity when you can do a few things that can make a big difference in the long term. Often, that window-of-opportunity is at the very beginning of the journey, i.e., before active treatment ever begins -- i.e., during the period of time when a newly diagnosed patient is not ordinarily thinking of taking an assertive or pro-active position vis-à-vis the overall problem.

The link given above in rp1954's post is a good example:
For example, after DX and before any kind of treatment is done, the CEA tumor marker should be done in order to establish a baseline value. If it is not done before interventions are started, then the opportunity to have a reference baseline is lost forever. And there are many other examples like this. And some of these things, for whatever reason, might be overlooked by the medical staff who are handling your case.

I guess what I am saying is this: You have two weeks before your meeting with the oncologist. There are some things that you could be doing during these two weeks that could very well be considered long-term investments in your future. Just waiting around for the next round of test results to come in, or waiting for the next appointment date to be finalized don't count, as they are essentially passive activities and they don't change much of anything. What you need to do is to be more proactive as your treatment plan is unfolding.

There are other things that you could be doing that are more pro-active -- for example, checking up on the credentials of all the doctors that have been assigned to you so far, and making an effort to find better ones if the current ones do not have a good record. You can get second opinions on reports, analyses and tests that have been done by your doctors and you may find that there are other doctors out there who have a better grasp of your situation. And you can even decide that you are going to change doctors.

It's the same for hospitals, clinics and other health care institutions. There are accreditation standards established for hospitals that can be checked out. In the case of cancer treatment, there is a three-tier structure of accreditation, with the highest being NCI-designated Comprehensive Cancer Centers, of which there are 69 in the US located in 35 different states. Below that are the hospitals accredited simply as "Cancer Centers" and below that are all of the unaccredited hospitals. Thus, at the very beginning the patient should take a serious look at the hospital, clinic that has been chosen It may not be the best one that could be lined up. Generally speaking, the best hospital, if you can manage it, would be a high-volume comprehensive cancer center with a number of Board Certified colorectal surgeons, Board Certified radiology oncologists, and Board Certified medical oncologists.
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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