NEW-Need some positivity here.

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Tue Sep 12, 2017 8:07 am

My suggestion is after talking to both surgeons, you decide who you feel most comfortable. I saw two surgeons, and both said the same regarding the surgery, and set up appointments with oncologists, and radiation oncologists. I had appointments with all three doctors from both hospitals. My treatment would be the same at both hospitals, so I decided to go with the second opinion team. They were from a larger hospital(Henry Ford Hospital in Detroit) than the one I was referred to by the gastro. I liked both surgeons, but felt more comfortable with the oncologist and radiation oncologist at Henry Ford. I also spoke to a gastroenterologist friend of my sisters quite a bit, and asked if I should get a third opinion, and he said he thought Henry Ford was a good decision if I felt comfortable, and my treatment would be the same no matter where I went.

Since you don't have rectal cancer will not have radiation, but will most likely meet with an oncologist. This is the doctor who you will spend the most time with during and after treatment, so you must feel comfortable with him or her.
I know you really just want to get this cancer out, but you want to be sure you aren't hasty in your decision. I was told May 7, 2015 and started radiation/chemo by the third week of the month. This was after having appointments with three doctors from both hospitals. Once you make a decision, things will move fairly quick.

Good Luck with your appointments. Try not to worry, colorectal cancer is generally slow growing. My tumor was 2 cm and the doctor told me it was prob there 5 years. I know it's easier said than done. Keep us posted. Prayers and hugs.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

teacher2017
Posts: 120
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Sep 12, 2017 2:56 pm

Did not like this Sloan surgeon. Told me all about my surgery before seeing my Ct scan. Basically dismissed that my lymph nodes were unremarkable. He said it is a tumor of a 60 year old. And I could get a resection or take the entire colon out and just resection the small intestine to the colon piece. To prevent more colon cancer. What on earth?!?!? Any one have this done?
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

Lee
Posts: 5258
Joined: Sun Apr 16, 2006 4:09 pm

Re: NEW-Need some positivity here.

Postby Lee » Tue Sep 12, 2017 3:13 pm

Do you know if they found multiple polyps in you? Did this surgeon get any medical history from you or the Dr that did the scope?

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!

Beckster
Posts: 180
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Tue Sep 12, 2017 3:22 pm

teacher2017 wrote:Did not like this Sloan surgeon. Told me all about my surgery before seeing my Ct scan. Basically dismissed that my lymph nodes were unremarkable. He said it is a tumor of a 60 year old. And I could get a resection or take the entire colon out and just resection the small intestine to the colon piece. To prevent more colon cancer. What on earth?!?!? Any one have this done?


Hi Teacher2017,

I am assuming that you are an educator...so am I. We both know how teachers can be...we want immediate feedback! I think that you need to be a little more specific. Where was the mass...rectum, right side, transverse, desending? My surgeon said that he normally does not see a tumor like mine until around 63 (right sided near the appendix). You can see in my signature all the information. He said 50% genetics and 50% environmental. If your CT scan and other tests state that it is localized and no lymph nodes are involved, you are probably Stage 1 or 2. Both do not involve any lymph nodes....that is a good thing. Your surgeon will probably want to do a resection and take out the part of the colon, which contains the mass. Many on this board, including me, have had a resection. That means the they are able to cure you. They took out the right side of my colon...in the hospital for two days. He told me after surgery that he got everything!

Now, depending on the pathology report after the surgery, the dr will determine if you need chemo. If it is Stage II, sometimes chemo is used as a preventative to prevent recurrence of the cancer. I took pills(Xeloda) for 6 months and had no port. It all depends on what the pathologist finds when he analyzes the specimen after surgery.

Take a deep breath! Everything will be ok. Write down all the questions you want to ask. Here are some suggestions (I used them when I spoke to surgeon).

1. How was the bloodwork and CEA level (from bloodwork).
2. Where the CT scan clear...showing no lymph node involvement or spread to liver or lungs?
3. Have them explain the surgery
4. How long will the surgery take and how long will I be in the hospital?
5. What is the preperative stage? Does he think it is Stage I, II....?
6. How long will it take for the pathology report to come back?
7. If the tumor is stage II or possible stage III, can he send out specimen to Oncotype to predict low, intermediate or high risk for chemo?

Good luck and let us know how you make out at the next appt. :D
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
Positive lymph nodes: 0/24
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17- CT scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8
Clear Colonoscopy 10/17 :D

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susie0915
Posts: 440
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Tue Sep 12, 2017 3:38 pm

I'm sorry you already have had a ct scan. My case was rectal cancer so things are a little different. I saw the surgeon the day after colonoscopy and he set up scan, and endoscopic ultrasound. My resection basically included taking most of the rectum and reattaching to sphincter muscle. My surgery results in different digestive issues than colon cancer. I hope he went over the whole process with you. My surgeon drew pics for me to illustrate what he was going to do. Sometimes surgeons can have the best hands but not the best people skills. Since no spread or lymph node showed up in scan that is good news. My doctor told me they were curing me as I was stage 2A. I'm not sure with colon cancer, but with mine they took lymph nodes during surgery to be sure. Even though all the tests prior showed no node invasion. Keep us updated and good luck again.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

NHMike
Posts: 550
Joined: Fri Jul 21, 2017 3:43 am

Re: NEW-Need some positivity here.

Postby NHMike » Tue Sep 12, 2017 7:53 pm

susie0915 wrote:I'm sorry you already have had a ct scan. My case was rectal cancer so things are a little different. I saw the surgeon the day after colonoscopy and he set up scan, and endoscopic ultrasound. My resection basically included taking most of the rectum and reattaching to sphincter muscle. My surgery results in different digestive issues than colon cancer. I hope he went over the whole process with you. My surgeon drew pics for me to illustrate what he was going to do. Sometimes surgeons can have the best hands but not the best people skills. Since no spread or lymph node showed up in scan that is good news. My doctor told me they were curing me as I was stage 2A. I'm not sure with colon cancer, but with mine they took lymph nodes during surgery to be sure. Even though all the tests prior showed no node invasion. Keep us updated and good luck again.


My surgeon had paper templates with the areas involved and drew the parts she'd work on and the areas for potential problems. I think that surgeons tend to be very direct and may not have the best in people skills. Kind of like engineers. In general, the Oncologists seem to have the best people skills of the bunch.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

teacher2017
Posts: 120
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Sep 12, 2017 10:37 pm

I feel slightly better. This surgeon at Columbia Presreally knew his stuff. He was factual and direct and when I asked him if I was going to die he replied, not from this Ct scan. The Ct scan showed that it isn't in any lymph nodes, not in the liver, kidneys, pancreas, etc. they did not get to see the whole colon because the tumor is large and sometimes blocks the opening. it is in the sigmoid colon and he won't know stage until he removes it. It will be a 3-5 procedure with a 3-5 day hospital stay. Then 3-4 week recovery. He also said that if the genetic test comes back positive he would consider in the future removing my uterus and ovaries to be safe. The other Sloan doctor told me my tumor was one of a 60 year old and I cried. He told me we can either take it out or wait for the genetic testing and remove the colon. He said this before he actuallly saw my Ct scan. I was very annoyed. I also told the Columbia that the Sloan doctor suggested this and he thought that was crazy. I still really want this out. The Colombia dr wants a chest Ctscan and blood work. I feel in better hands. He said I'm lucky this could be a lot worse. But I know that they won't really know until they open me up what we are dealing with. After surgery they will tell if I need chem
And 2-3 months after I will have another colonoscopy to see the rest of the colon which could have polyps or another tumor too. But they can't see anything on the ctscan otherwise.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

weisssoccermom
Posts: 5755
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: NEW-Need some positivity here.

Postby weisssoccermom » Tue Sep 12, 2017 10:52 pm

One thing I want to stress to you is this. PLEASE, no matter how much you like your surgeon, do NOT let him tell you whether or not you need chemo. That is NOT his specialty and NOT his job. Too often, you'll find that the surgeon will give his/her 2 cents on whether or not the patient needs chemo or not. It is NOT the surgeon's job/place to tell the patient whether or not he/she needs chemo. On the other side, too many oncologists, when seeing a patient prior to surgery, will tell the patient which type of surgery he/she needs to have. Again, that is NOT the job of the oncologist. He/she is NOT a surgeon and should let the surgeon tell the patient which type of surgery he/she requires.

Just be aware that too often the doctors can and do overstep their boundaries. I had a good friend on this board who is now gone. She had a surgeon who decided for her that she didn't need chemo....totally opposite of what the oncologist believed. Terry didn't do chemo, her cancer spread and ultimately it took her life. Now, there is truly no way of knowing what would have happened had Terry had 6 months of chemo.....its just impossible to figure that out. We talked about it and the 'what ifs' were always present. Obviously, when a patient is newly diagnosed, he/she has no idea of what to do...what questions to ask, etc. You trust your doctor and go along with his/her recommendations. A good doctor will recognize his/her limitations and not overstep his/her boundaries.

I am certainly NOT saying that your surgeon will try to sway you one way or another with respect to cancer. PLEASE though.....let the specialist make that determination for you.....get an appointment with an oncologist and no matter what the surgeon recommends with respect to chemo....TALK WITH THE ONCOLOGIST before making a decision for yourself. It could make all the difference!
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Andrea1976
Posts: 380
Joined: Sun Jan 03, 2016 10:32 am

Re: NEW-Need some positivity here.

Postby Andrea1976 » Tue Sep 12, 2017 11:07 pm

I am sorry you are here. Maybe get a 3rd opinion? I went to 4 different colorectal surgeons. 2 of these were in the same Baylor hospital and I wouldn't recommend that. Because it seems they would most likely have similar recommendation. I think the best is to go to a cancer center with GI department. I went to a cancer hospital and saw a GI surgical oncologist who does GI cancer surgeries including liver resections etc. 2 of these surgeons were amazing and really helped me on every level including emotional. 2 other ones not so much - I was just a statistic to them.
Stage I
pedunculate polyp in descending colon
moderately diff adenocarcinoma 0.6 cm
Tumor confined to the head of the polyp
Stalk margin 2 cm negative for dysplasia and malignancy
Polyp removed during colonoscopy 1/15/16
No lymphovascular involved
No surgery
CEA after polyp removal 0.3
Genetic testing negative for colon and breast cancer
39 year old female. I am not celebrating my 40th but waiting for my big 50 birthday party!!!

jep
Posts: 36
Joined: Sun Jun 11, 2017 7:45 pm

Re: NEW-Need some positivity here.

Postby jep » Wed Sep 13, 2017 4:32 am

Definitely go with your gut in terms of the surgeon. My husband only met with 1 surgeon, and we both knew that he was the one after 10 minutes in his office. This surgeon is board certified in colorectal surgery and has an excellent reputation. More importantly, he took my husband's dire situation very seriously. He is a man of action who didn't let us go home that day. He literally told my husband, "You're coming with me to the hospital today." I believe he saved my husband's life as his tumor was large (sigmoid) and his bowels could have ruptured at any moment (DH had been having terrible pain for more than a week . . . we were even sent home by 1 ER!). Trust your instinct, but also make sure that this surgeon's credentials and reputation are impeccable.
You CT results sound very good. Stay strong and prayers for you as you face all of this difficult decisions.
jep
Husband DX Stage IV CC on May 16, 2017
47 years old
Tumor Location: recto-sigmoid
Tumor type: Adenocarcinoma
Tumor size: 7.4 cm
Tumor grade: G3
TNM code: T3N2M1
Positive lymph nodes: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
Surgical margins: clear (w/in microns)
Primary surgery type: LAR

veckon
Posts: 104
Joined: Thu Jul 27, 2017 7:44 am

Re: NEW-Need some positivity here.

Postby veckon » Wed Sep 13, 2017 5:51 am

teacher2017 wrote:I feel slightly better. This surgeon at Columbia Presreally knew his stuff. He was factual and direct and when I asked him if I was going to die he replied, not from this Ct scan. The Ct scan showed that it isn't in any lymph nodes, not in the liver, kidneys, pancreas, etc. they did not get to see the whole colon because the tumor is large and sometimes blocks the opening. it is in the sigmoid colon and he won't know stage until he removes it. It will be a 3-5 procedure with a 3-5 day hospital stay. Then 3-4 week recovery. He also said that if the genetic test comes back positive he would consider in the future removing my uterus and ovaries to be safe. The other Sloan doctor told me my tumor was one of a 60 year old and I cried. He told me we can either take it out or wait for the genetic testing and remove the colon. He said this before he actuallly saw my Ct scan. I was very annoyed. I also told the Columbia that the Sloan doctor suggested this and he thought that was crazy. I still really want this out. The Colombia dr wants a chest Ctscan and blood work. I feel in better hands. He said I'm lucky this could be a lot worse. But I know that they won't really know until they open me up what we are dealing with. After surgery they will tell if I need chem
And 2-3 months after I will have another colonoscopy to see the rest of the colon which could have polyps or another tumor too. But they can't see anything on the ctscan otherwise.


Always get a second (at a minimum) opinion. This is why. Every doctor will interpret your scans or state differently. However, you should be aware that you are clearly biased toward the “better” prognosis. While that may make you feel better, I would actually feel worse because that means the case isn’t clear cut and easy to decipher from your scans alone. Get a third opinion.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

veckon
Posts: 104
Joined: Thu Jul 27, 2017 7:44 am

Re: NEW-Need some positivity here

Postby veckon » Wed Sep 13, 2017 6:01 am

Also, don’t ask if you’re going to die. Even if your cancer is advanced like mine they have no idea beyond “probably”. “Probably” may be true statistically as a population but we are individuals. So get your tumor staged, treatment protocol decided on, and work at it until you’re cured or can live your life mostly normal. We will all die eventually.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

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susie0915
Posts: 440
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Wed Sep 13, 2017 7:37 am

I'm glad you feel better with the second surgeon. You must feel comfortable. Did the surgeon suggest you meet with an oncologist? Both surgeons I met set up appointments with the oncologist a couple days later. I know most hospitals do have a tumor board where all the doctors meet to discuss cases. The oncologist is the doctor that will be determining if chemo is necessary and if so will be the doctor you will see often during chemo treatments. Again, I'm glad the second surgeon made you feel better. Good Luck. Keep us posted.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

Aqx99
Posts: 245
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Wed Sep 13, 2017 9:19 am

Sounds like you found a surgeon you are comfortable with. That is the most important thing. I was scared too, when I woke up from my colonoscopy and saw the pictures of my tumor. My gastroenterologist told me that he was going to send me to the best colorectal surgeon in town. This was the guy he would send his family to if they needed surgery. I was still scared, because I didn't know what was ahead for me. After meeting my surgeon, I was put at ease. He has a very good bedside manner. He explained everything in detail to me. He had a diagram of the intestines that he used to draw the parts he would be removing and reconnecting, as well as where the temporary ileostomy would be. He also wrote down all of the "big words" for me on the sheet. I had never heard of a low anterior resection or diverting loop ileostomy before that day, so it helped that he wrote those down for me to refer to later on. When I saw him again a few days later for my endorectal ultrasound, he showed me the printed images of my ultrasound and explained what he saw. He also used the same diagram of the intestines to again draw what my surgery would entail and to write down what he saw in terms of the tumor and the lymph nodes and that my tumor was a "working stage III," because they can't tell until they get in there what the true stage of the tumor is. The thing I like best about my surgeon, and the rest of my care team for that matter, is that he sat down and talked with me for as long as I needed. I never felt that he was trying to work his way out the door when he was done saying his piece. He even stayed there with me as I cried after I heard it was a stage III tumor, he didn't pass me off to his nurse who was also in the room.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

Lydia666
Posts: 651
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: NEW-Need some positivity here.

Postby Lydia666 » Wed Sep 13, 2017 10:13 pm

teacher2017 wrote:weisssoccermom & ValZen - Thank you so much! I have to stop googling. It makes me crazy.

Thank you all for your input!
I have so many questions...If it is an old and large tumor is it a stage 4? Will Chemo make me lose my hair? Can I still work? How do I tell a 12 and 15 yr old that their mother has cancer? It's a disgusting place to be.

You won't lose your hair!
You could still work!
Definitely not stage 4 because or based on size!
If you don't have nodes involved, that is pretty darn positive. The diagnosis and waiting for treatment is pure torture but you are in good hands. You will be treated. You can tell your children you need surgery for some digestive issues. You can give details when your are in a better place.
Much love and patience which sucks, i know!
Hugs!
Oct 2012- thyroid cancer
June 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
May 2016- clear CT
July 2016- ileo reversal
August 2016- DCIS breast cancer
Oct 13,2016 - lumpectomy
Dec 2016 - clean scope
Feb 24,2017- prophylactic double mastectomy
April 2017- clean scope
May 2017 -clean CT
Sept 2017 - clean lung CT
Mom to 3 & 6 yrs kids (6mo & 3.5yrs in 2015)


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