Asking questions before diagnosis?

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Opbago
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Joined: Fri Jul 21, 2017 9:51 pm

Asking questions before diagnosis?

Postby Opbago » Fri Jul 21, 2017 10:27 pm

Is it okay to ask questions before a diagnosis?

My husband has been ill for 6 weeks. It's literally been like an episode of House. In a nutshell, he had a fever for 23 days for no known reason. During that time he developed random symptoms...a bloated feeling, a sore leg, a cough. They ran a zillion blood tests, a chest X-ray, and chest & abdomen CT. They found portal vein thrombosis. Then his leg pain worsened and they did an ultrasound to find another blood clot. He is a healthy 48 year old with no family history. They put him on warfarin and ran a bunch more tests. He saw an infectious disease guy who sent him to hematology and now to GI.

Today he was diagnosed with microcytic anemia. That, combined with some lab results and symptoms, makes the infectious disease doctor suspect colon cancer. Here's the kicker: my husband has experienced severe rectal bleeding on and off for 12 years, occasionally having external hemorrhoids. He always assumed it was just hemarrhoids and has never had a colonoscopy. Anyway. He's getting one now. The doctor has requested a colonoscopy within the next week or two (they were booked through November and the doctor called them directly to insist it needed to be sooner.). Infectious disease doctor even told us he's worried. (My husband made a joke about "if you're not worried, then I'm not worried". Dr looked him dead in the eye and said "I'm worried.")

We see hematology again on Tuesday. The hematologist is also an oncologist and is in a cancer clinic, so I feel confident that he can advise us Tuesday on the actual chances of colon cancer.

Are there any questions we should ask him?

Thanks for listening.

They have not run a CEA yet as far as I can tell. They did run an AFP but that doesn't seem relevant for colon cancer?
Last edited by Opbago on Sat Jul 22, 2017 12:12 pm, edited 1 time in total.

michelle c
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Re: Asking questions before diagnosis?

Postby michelle c » Sat Jul 22, 2017 3:36 am

When people have unexplained anemia, colon cancer is sometimes suspected. However, your husband has had severe rectal bleeding. That could be the cause. When I had a CT scan, the tumor in my colon showed up. Your husband has a lot of symptoms, related and unrelated to colorectal cancer. I had no symptoms other than blood in my stool, I had a colonoscopy a few weeks later and the cancer was discovered. I think that it is a bit irresponsible for the doctor to say that he thinks it is colon cancer.....just wait until the colonoscopy before assuming or worrying that it is. The fever and blood clots sound worrisome, I hope they get to the bottom of his symptoms and that your husband feels better soon. Best wishes
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

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Jacques
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Re: Asking questions before diagnosis?

Postby Jacques » Sat Jul 22, 2017 4:06 am

Opbago wrote:...He always assumed it was just hemorrhoids and has never had a colonoscopy. Anyway. He's getting one now.

Be sure to ask for a written report from the colonoscopy. This should clarify a number of things.

Here is some information on getting colonoscopies:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53348&p=422050#p422050

Opbago
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Re: Asking questions before diagnosis?

Postby Opbago » Sat Jul 22, 2017 12:08 pm

Thank you to both of you, and for the reality check. :wink: I'll read that link about colonoscopies. And I'm keeping in mind that this wasn't from an oncologist, but I'm making a list for when we do see him on Tuesday. (My husband is there for hematology, but the doctor is an oncologist.)

DarknessEmbraced
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Location: New Brunswick, Canada

Re: Asking questions before diagnosis?

Postby DarknessEmbraced » Sun Jul 23, 2017 1:17 pm

I hope your husband's colonoscopy goes well and that you get answers soon!*hugs*
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! :)

Lee
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Re: Asking questions before diagnosis?

Postby Lee » Sun Jul 23, 2017 7:21 pm

For what it's worth, many years ago, my mother ended up in the ER with serious stomach pain and rectal bleeding. Dr was 99% sure it was colon cancer. Colonoscopy was to proved it. They found no cancer, not even 1 polyp, just a bad case of diverticulitis.

Truth is a lot of things could be causing your husband's symptom, cancer is just one possibility.

It"s good he's getting scope. That will give a true diagnoses, anything else is just a speculation.

Good luck,

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 - 16 years and counting!

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: Asking questions before diagnosis?

Postby michelle c » Sun Jul 23, 2017 8:35 pm

The oncologist sounds like he probably specializes in blood cancers such as leukemia etc. Don't expect him to diagnose him or not with colon cancer without a colonoscopy. Good idea to write down all your questions and write notes to give an accurate and thorough account of your husbands symptoms. You need answers as to what is causing him to be unwell. Best wishes
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

Opbago
Posts: 4
Joined: Fri Jul 21, 2017 9:51 pm

Re: Asking questions before diagnosis?

Postby Opbago » Sun Jul 23, 2017 9:39 pm

michelle c wrote:The oncologist sounds like he probably specializes in blood cancers such as leukemia etc. Don't expect him to diagnose him or not with colon cancer without a colonoscopy. Good idea to write down all your questions and write notes to give an accurate and thorough account of your husbands symptoms. You need answers as to what is causing him to be unwell. Best wishes



Yeah, we know he has to have the scope for a diagnosis. What I'm really hoping is that the hematologist will say "nah, that's not cancer, eat more greens and you'll be fine." (Regarding the anemia.) But no matter what, he'll have the scope, so we'll know for sure.

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Jacques
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Re: Asking questions before diagnosis?

Postby Jacques » Mon Jul 24, 2017 12:58 am

Opbago wrote:Is it okay to ask questions before a diagnosis? ... We see hematology again on Tuesday... Are there any questions we should ask him?

Since anemia seems to be the main issue here, I would recommend that you download and read the MD Anderson clinical management document on Anemia.

To find this document, go to the web page below and click on the link entitled "Anemia" located in the section entitled, Non-Emergent / Urgent

https://www.mdanderson.org/for-physicians/clinical-tools-resources/clinical-practice-algorithms/clinical-management-algorithms.html

This should give you some idea of the types of questions to ask.

Utwo
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Location: T.O.

Re: Asking questions before diagnosis?

Postby Utwo » Mon Jul 24, 2017 12:06 pm

12 years of bleeding doesn't look like cancer. However getting a colonoscopy is a good idea in this case.
In my case bleeding was not caused by cancer, but colonocopy discovered it.

How old is your husband?

The most important is to do the best possible preparation to make sure that they do not miss cancer during colonoscopy.
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

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

Re: Asking questions before diagnosis?

Postby NHMike » Mon Jul 24, 2017 4:27 pm

michelle c wrote:When people have unexplained anemia, colon cancer is sometimes suspected. However, your husband has had severe rectal bleeding. That could be the cause. When I had a CT scan, the tumor in my colon showed up. Your husband has a lot of symptoms, related and unrelated to colorectal cancer. I had no symptoms other than blood in my stool, I had a colonoscopy a few weeks later and the cancer was discovered. I think that it is a bit irresponsible for the doctor to say that he thinks it is colon cancer.....just wait until the colonoscopy before assuming or worrying that it is. The fever and blood clots sound worrisome, I hope they get to the bottom of his symptoms and that your husband feels better soon. Best wishes


I had the same thing - blood in stool, get a CT scan, it shows a mass, get a colonoscopy done, send in the biopsy to get the diagnosis. In my case, the did the colonoscopy the same day as I went to the ER. The GI guy just happened to be at the hospital the day I was there.
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

Opbago
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Joined: Fri Jul 21, 2017 9:51 pm

Re: Asking questions before diagnosis?

Postby Opbago » Mon Jul 24, 2017 4:55 pm

You are all very encouraging. Thank you so much. I wish you all the best with your journeys.

We see oncology tomorrow, and the scope is on Aug 7, so 2 weeks from today. I'm fully expecting to hear this isn't cancer. But if so, I know this will be a good forum for support. ❤️


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