Colonoscopy identified Cancer - What questions should I prepare for the doctor

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Bti
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Colonoscopy identified Cancer - What questions should I prepare for the doctor

Postby Bti » Fri Feb 16, 2018 11:31 am

Hello Everyone,
I am a 39 year old male with no major medical issues. I had been having some some stomach pain & warning signs but assumed it was a bleeding ulcer. Went to a GI doctor on Tuesday, 2-13-2018 & was schedule for a colonoscopy for Thursday, 2-15-2018 (due to being anemic). After the colonoscopy the doctor informed me that he has identified a couple of spots he believes is cancer. I was still waking up from the anesthetic as the doctor was explaining this too my wife and I and am not full sure of everything he said. This has all happened so fast I am still trying to figure out up from down. Can anyone suggest some questions I should have prepared for the doctor or nurse. We are still waiting on pathology but have a PET scan scheduled for Tuesday.

justin case
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Re: Colonoscopy identified Cancer - What questions should I prepare for the doctor

Postby justin case » Fri Feb 16, 2018 3:41 pm

I'm sure you are in a state of disbelief ! We all were ! You just will have to wait to see what was found after your tissues were sent to be inspected . In my experience, you will be well informed at that point, and be directed to the specialist most relevant to your situation.
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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O Stoma Mia
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Location: Budapest

Re: Colonoscopy identified Cancer - What questions should I prepare for the doctor

Postby O Stoma Mia » Fri Feb 16, 2018 6:06 pm

.Here are some questions from a very old post of mine.. Maybe you can find something of interest here.
    O Stoma Mia wrote:Dear Lara -

    It looks like it's already Sunday evening there in Phoenix, and you have asked a lot of new questions here that might not receive any answers before you have to head off for your Monday appointments with the oncologist and surgeon. I'll try to address some of the questions here. The rest of them might might have to wait until after your doctors' appointments, since the people here who would have opinions or answers to your questions might not be logging in overnight.

    For tomorrow (Monday), here are a few of the priority items to cover:
    • Urgency of surgery - You said, "...The report I got shows the mass on the top left corner... The picture of the mass shows it is pretty well filling the colon..." The issue here is whether the mass is so big that it is in danger of causing an obstruction any day now. If so, the surgeon will probably want to remove the tumor right away and forget about doing any neoadjuvant chemo-radiation to shrink the tumor. So, this is one of the questions you should ask. If they decide to do chemo or chemo-radiation first, then they will not be able to do surgery to remove the tumor for another 2 or 3 months from now. If they decide to do surgery right now, then chemotherapy will have to wait for another 6 to 8 weeks.
      .
    • Location of primary tumor, and of liver spots - You said, "The report I got shows the mass on the top left corner. The picture of the mass shows it is pretty well filling the colon.... Doctor said that it is in a good place to cut it out and that might be all I need... . It is not clear to me exactly where your tumor is located. What do you mean by, "..top left corner.."? Did they tell you exactly where the primary tumor was located? Could it be near the Hepatic Flexure by any chance? If so, this means that it is close to the liver, and this suggests (to me, at least) that if your up-coming PET-CT scan confirms liver malignancies that are accessible and all on the same liver lobe, then maybe they could do a liver resection at the same time as doing the colon resection, since all of these tumors would be in the same general part of the abdomen (does this make any sense???)

      Image

      The average colon is about 1.5 m long. Lengths of the various parts are:

      * Ascending colon: 25 cm
      * Transverse colon: 45 cm
      * Descending colon: 15 cm
      * Sigmoid colon: 40 cm
      * Rectum: 12 cm
      * Anal canal: 5 cm
      The splenic flexure is thus at around 72 cm from the anal verge, and the hepatic flexure at around 117 cm.
      ----------------------------------------------------------------------------------------------------------------
    • Choice of surgeon - For colorectal surgery, it is important to have a surgeon who is Board-Certified to do this type of surgery. One thing you could do at this point is to check for certified colorectal surgeons in your area. The link to do that is here: Is My Doctor Board-Certified?. Some of the reasons why this is so important are discussed in this prior post by weisssoccermom: Board-certified colorectal surgeons.
      .
    • PET scan - If they are going to do a PET scan, then presumably it would be a PET-CT scan, which would be able to show whether the liver spots and any lymph nodes are likely cancerous. (They are unlikely to give you both a PET scan and an MRI, so it looks like they prefer PET scans at your facility). If they do give you an appointment for a PET scan, then there is a special diet and set of special instructions that you have to follow prior to the scan. Be sure to follow the instructions closely so as not to introduce error factors into the captured images.

      They should give you a set of detailed instructions for your PET scan prep. If they don't, then you could have a look at a few of the detailed PET/CT scan preparation guidelines that have been posted on the internet. These will give you an idea of the kinds of things that you should or should not do up to 72 hours before your exam.

      Preparing for your PET CT scan

      Positron Emission Tomography (PET Scan) - Johns Hopkins
      .
    • Hospital packing list - If you are in fact going to have surgery soon then you might want to have a look at some of the threads here related to stays in the hospital for colon-cancer related surgeries:

      Things that are helpful to have with you in the hospital...

      "take to the hospital" list

      If you could take to the hospital what would it be?

      There are also some web-sites that have more general information in this area

      What to pack for hospital

      What to Pack for a Hospital Stay

      The 10 Most Important Things to Bring With You to the Hospital

      What to Expect for Inpatient Surgery

    Good luck on your upcoming appointments. I hope they come up with a good plan for you. Remember to write down or tape-record everything they tell you.

NHMike
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Re: Colonoscopy identified Cancer - What questions should I prepare for the doctor

Postby NHMike » Sat Feb 17, 2018 9:49 am

Try to get staging information from your doctor. Staging drives treatment and the data behind the staging tells you a fair amount about your cancer. Your doctor may not feel comfortable doing staging information right now if scans haven't been done. But you should be able to get size and location information on what was found. Also the information from the pathology report.

Some links on staging and treatment:

https://cancerstaging.org/references-to ... Medium.pdf
https://emedicine.medscape.com/article/2005487-overview
https://www.cancer.org/cancer/colon-rec ... taged.html

Feel free to ask questions. A lot of stuff will come up that you may want information on and there's a ton of knowledge and experience here.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

KElizabeth
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Re: Colonoscopy identified Cancer - What questions should I prepare for the doctor

Postby KElizabeth » Sat Feb 17, 2018 11:13 am

I strongly suggest finding a board certified colorectal surgeon to do the resection as you will have less chance of complications later. This is what they do all the time.
I wish I had. I didn't even know they existed when I had my resection. They just know how to do the procedure so much better from a general surgeon. Would you want a general surgeon removing half your liver?
Even if the nearest is far, still do it.
Find a NCI designated cancer center instead of a small office oncologist. They will be more progressive if times get even tougher. It's an easy google search.
Most importantly rest up and take care of you right now.
Reach out here if you need an understanding ear or more advice. We care. Best wishes.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

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O Stoma Mia
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Re: Colonoscopy identified Cancer - What questions should I prepare for the doctor

Postby O Stoma Mia » Sat Feb 17, 2018 3:24 pm

KElizabeth wrote:I strongly suggest finding a board certified colorectal surgeon to do the resection as you will have less chance of complications later...

Find a NCI designated cancer center instead of a small office oncologist. They will be more progressive if times get even tougher. It's an easy google search.

I wholeheartedly agree with what KElizabeth just said. These are two of the most important investments that you could ever make.

You can search for an NCI-Designated Comprehensive Cancer Center here:

https://www.cancer.gov/research/nci-role/cancer-centers/find

You can search for Board-Certified colorectal surgeons here:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52349&p=410280#p410280
Last edited by O Stoma Mia on Sun Feb 18, 2018 11:00 pm, edited 1 time in total.

Bti
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Re: Colonoscopy identified Cancer - What questions should I prepare for the doctor

Postby Bti » Sun Feb 18, 2018 4:48 pm

Thanks everyone! I have requested an appointment with the U of M cancer center. The hospital I am currently working with has me schedule for an appointment with a board certified general & colon rectal surgeon on the 27th. I do think before I make and decisions on course of treatment I want to talk with the U of M Cancer center. I should be getting my pathology reports tomorrow (fingers crossed)

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O Stoma Mia
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Re: Colonoscopy identified Cancer - What questions should I prepare for the doctor

Postby O Stoma Mia » Sun Feb 18, 2018 10:49 pm

For questions to ask the doctor, there is a good section on the Mayo Clinic website, with a list of suggested questions to ask in the case of Rectal Cancer:

The list of questions is found near the bottom of the following web page under the topic, "Preparing for your appointment":

https://www.mayoclinic.org/diseases-conditions/rectal-cancer/diagnosis-treatment/drc-20352889

You haven't yet told us where the suspected cancer is located. Is it in your rectum or in your colon? We need more information from you if we are going to offer any kind of focused comments. What do you know so far about the results of your colonoscopy? Do you have a written report of the results?

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susie0915
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Re: Colonoscopy identified Cancer - What questions should I prepare for the doctor

Postby susie0915 » Mon Feb 19, 2018 9:03 am

Bti wrote:Thanks everyone! I have requested an appointment with the U of M cancer center. The hospital I am currently working with has me schedule for an appointment with a board certified general & colon rectal surgeon on the 27th. I do think before I make and decisions on course of treatment I want to talk with the U of M Cancer center. I should be getting my pathology reports tomorrow (fingers crossed)

Are you talking University of Michigan cancer center? I wasn't treated there for my cancer, but did go to their bowel control clinic for treatment of LARS after almost a year of finishing treatment. The staff there is awesome. I did my treatment for cancer at Henry Ford Hospital and they were awesome also, but found the bowel control clinic and thought I would give it a try. I don't think you can go wrong with University of Michigan. But I wasn't sure if you were talking about Michigan or maybe Minnesota.
58 yrs old Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, 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 feels scar tissue
7/17 no change lung nodule
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule or scarring/inflammation


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