I'm getting worried

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Usmccolon
Posts: 6
Joined: Wed Oct 30, 2019 12:45 am

I'm getting worried

Postby Usmccolon » Wed Oct 30, 2019 12:58 am

Hello everyone!
I'm sure you get people scares here all the time.
A little background about me. Im 35 years old and have been tired for a long time. Have had blood in stool on and off again for years. Recently diagnosed with diverticulitis and pretty sure it's 4th time I've had it. Also had a period earlier this year where I had fever for about 8 months that hasn't been explained. It ended up going away after starting synthroid for barely underactive thyroid which did help a bit with fatigue as well. I have abdominal pain a lot more recently and frequent changes in stool. I come from a family with a history of polyps but none have been cancerous.
Some past CT showed enlarged messentaric lymph nodes as well.

Last Monday I had a colonoscopy which wasn't bad at all. The Dr said he didn't see cancer but did find 2 polyps that he removed and sent of to pathology and also scarring, I'm assuming from diverticulitis. The nurse that was in the room as well told me to expect results in 4 days. It's now been about 9 days and I still don't have results.

I'm sure I'm being rediculous but I'm getting worried that they found something and are getting extra opinions before giving me results.
I've just felt so bad for so long that I'm scared I might have cancer and I also just had a friend die of colon cancer as well.

Gravelyguy
Posts: 251
Joined: Thu Jul 05, 2018 6:03 pm

Re: I'm getting worried

Postby Gravelyguy » Wed Oct 30, 2019 9:52 am

Hi,

Sorry that you have had all these issues and now are waiting longer to find out the biopsy results. I would put in a call to your Dr. to find out the results. I would put money on someone dropped the ball on getting the results out.

Hang in there,

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

Usmccolon
Posts: 6
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Wed Oct 30, 2019 11:00 am

I will send a message now. Thanks Dave

KimT
Posts: 673
Joined: Sat Feb 20, 2010 8:53 pm

Re: I'm getting worried

Postby KimT » Wed Oct 30, 2019 11:45 am

I get yearly colonoscopies. I’ve had several gi doctors as we have moved a lot in the last 10 years. I always get my pathology reports by mail. It’s pretty common to send it by mail if it’s benign. I wouldn’t worry. They would have called if there was a malignancy.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

Usmccolon
Posts: 6
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Wed Oct 30, 2019 12:08 pm

KimT wrote:I get yearly colonoscopies. I’ve had several gi doctors as we have moved a lot in the last 10 years. I always get my pathology reports by mail. It’s pretty common to send it by mail if it’s benign. I wouldn’t worry. They would have called if there was a malignancy.


I was told I would hear in 4 days and would also get the report in the mail within 7 to 10 days (tomorrow is day 10). My gastroenterologist was out until today as well so she probably hasn't seen it yet.
I agree I'm probably overreacting. Thanks for the reassurance!

User avatar
ginabeewell
Posts: 360
Joined: Wed Oct 24, 2018 10:30 am

Re: I'm getting worried

Postby ginabeewell » Wed Oct 30, 2019 2:44 pm

When they see something suspicious they act fast. I had a Tues colonoscopy, a Fri CT scan and they called me Sat with my diagnosis and staging.
Last edited by ginabeewell on Wed Oct 30, 2019 4:51 pm, edited 1 time in total.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

galee
Posts: 12
Joined: Sat Aug 24, 2019 2:44 pm
Facebook Username: galeehardin@cox.net

Re: I'm getting worried

Postby galee » Wed Oct 30, 2019 4:04 pm

I believe you would definitely have a more definitive response from you GI if there was anything indicating cancer. I know the wait is incredibly frustrating regardless. Just a little tid-bit...My brother had a colonoscopy the day before mine (8/14/2019). He had two pickups removed.
I had my colonoscopy the next day, a diagnosis of colon cancer 48 hours later AND surgery all before he received any results. He finally received a letter documenting his results when I was 4 weeks post op. That is 10 weeks time. I find that totally unacceptable!

BUT with all that shared, prayerfully by this post you have had feedback and your mind is at ease.
47 year old, Female
8/15/2019 Colonoscopy due to blood in bowels
8/20/2019 Pathology 3cm Adenocarcinoma
Recto-Sigmoid junction, 12 cm from anal verge
G2
MSS
BRAF, KRAS, NRAS Not Detected
CEA 1.8
9/23/2019 sigmoid & rectum colectomy plus left salpingo-oophorectomy, small intestine resection & appendectomy
9/30/2019 Pathology: T2N0M0, moderately differentiated adenocarcinoma (2.8cm), margins uninvolved

User avatar
CRguy
Posts: 10021
Joined: Sun Feb 10, 2008 6:00 pm

Re: I'm getting worried

Postby CRguy » Wed Oct 30, 2019 4:27 pm

galee wrote:My brother had a colonoscopy the day before mine (8/14/2019). He had two pickups removed.

He would have heard sooner if it was 2 minivans ! :shock:

Sorry I'm just having a smartass attack :mrgreen:
I'll go now :oops:

Hope the new poster gets good results soon.

Cheers all
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Usmccolon
Posts: 6
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Wed Oct 30, 2019 4:40 pm

ginabeewell wrote:I realize I’m in a raw spot right now, but I have to say I don’t understand the logic of coming to a cancer board where people have real reasons to be scared about their actual cancer and then asking them to weigh in.

Especially after the doctor told you he didn’t see cancer.

Call the doctor and ask about the results.

When they see something suspicious they act fast. I had a Tues colonoscopy, a Fri CT scan and they called me Sat with my diagnosis and staging.


I guess I'm not sure why I should follow up with Dr then? Based on what you just said I don't have cancer and shouldn't be bothering you all here.

Sorry for the inconvenience

User avatar
ginabeewell
Posts: 360
Joined: Wed Oct 24, 2018 10:30 am

Re: I'm getting worried

Postby ginabeewell » Wed Oct 30, 2019 5:42 pm

Usmccolon wrote:
ginabeewell wrote:I realize I’m in a raw spot right now, but I have to say I don’t understand the logic of coming to a cancer board where people have real reasons to be scared about their actual cancer and then asking them to weigh in.

Especially after the doctor told you he didn’t see cancer.

Call the doctor and ask about the results.

When they see something suspicious they act fast. I had a Tues colonoscopy, a Fri CT scan and they called me Sat with my diagnosis and staging.


I guess I'm not sure why I should follow up with Dr then? Based on what you just said I don't have cancer and shouldn't be bothering you all here.

Sorry for the inconvenience


None of us can tell you you don’t have cancer. We can tell you how long results typically take.

I deleted my initial intro to my post because it was not me at my best. I should have just said nothing, and on a better day I would have. But you have to remember people here are going through painful and relentless treatment and are facing the loss of friends or family members - or their own lives.

I hope you can understand it’s not a matter of “inconvenience.” Unfortunately it can be extremely painful.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

CF_69
Posts: 84
Joined: Sat Dec 22, 2018 9:44 pm

Re: I'm getting worried

Postby CF_69 » Wed Oct 30, 2019 8:31 pm

I’ll echo the comments about no news being good news.

If they saw something you would have heard from them quickly.
47 year old male
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA:
Dec 2018 - 1.9
September 2019 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019

galee
Posts: 12
Joined: Sat Aug 24, 2019 2:44 pm
Facebook Username: galeehardin@cox.net

Re: I'm getting worried

Postby galee » Wed Oct 30, 2019 9:01 pm

galee wrote:I believe you would definitely have a more definitive response from you GI if there was anything indicating cancer. I know the wait is incredibly frustrating regardless. Just a little tid-bit...My brother had a colonoscopy the day before mine (8/14/2019). He had two polyps removed.
I had my colonoscopy the next day, a diagnosis of colon cancer 48 hours later AND surgery all before he received any results. He finally received a letter documenting his results when I was 4 weeks post op. That is 10 weeks time. I find that totally unacceptable!

BUT with all that shared, prayerfully by this post you have had feedback and your mind is at ease.
47 year old, Female
8/15/2019 Colonoscopy due to blood in bowels
8/20/2019 Pathology 3cm Adenocarcinoma
Recto-Sigmoid junction, 12 cm from anal verge
G2
MSS
BRAF, KRAS, NRAS Not Detected
CEA 1.8
9/23/2019 sigmoid & rectum colectomy plus left salpingo-oophorectomy, small intestine resection & appendectomy
9/30/2019 Pathology: T2N0M0, moderately differentiated adenocarcinoma (2.8cm), margins uninvolved

retiredteacher
Posts: 108
Joined: Sat Oct 21, 2017 1:34 pm

Re: I'm getting worried

Postby retiredteacher » Wed Oct 30, 2019 11:12 pm

As much as I agree with all the previous replies ... this was our approach with my hubby's last surveillance scan in June (NED from small cell lung cancer 2011) and it did not work out well. We waited for the mandatory two week followup with the pulmonologist, were rescheduled two more weeks further ... and learned four weeks after the CT that they found another lung cancer. Stuff happens.

My advice is to followup as soon as possible. You deserve a peaceful mind if there's nothing there, and the opportunity to take action in a timely manner if there is something. Fortunately, CRC tends to be on the slower, much less aggressive side. If the results are not yet available, you should be given some type of realistic time estimate.

Learning your doc's Medical Assistant's name and contacting her (or him) directly can sometimes move things along more quickly. Be very diplomatic and be sure to express gratitude. Your phone call to the MA will go through, whereas your doc may or may not get your message request. After the hubby's delay, I was able to keep the paperwork, schedule, and communication moving along by contacting the MA's, schedulers, etc. by name. We live in an area with thin medical staffing - the staffs are competent and hard working, but woefully understaffed, overworked, frenzied ... and miscommunication is not infrequent.

In all likelihood, you have good news. But it's better to know for sure.

Best wishes and hope, 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

Usmccolon
Posts: 6
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Thu Oct 31, 2019 12:00 am

Thanks for all the replies. I didn't call today but will be in the morning. The mailed results are supposed to be here by tomorrow but should of been online by now. I'll check my email to see if im supposed to get mail from them. I'm still not able to see the results online yet either.

Good or bad news not sure if anyone would have called me since my gastroenterologist was out of work until yesterday the 30th. Maybe she needed to sign off on results good or bad before they would send them out?

I want to be clear that it's not like I went to colonoscopy and they removed polyps and that's what scares me.

I'm scared because like I said before i haven't felt like myself in years. Had a chest CT a little while back as well that showed spot on lung. Radiologist said to get another scan in 6 months but pulmonologist said I was to young. So I haven't gotten a follow up scan for lungs which also show some scarring as well.
I have had blood in stools for easily 10 years and I never said anything, the abdominal pain is an everyday thing now and isn't located in just one spot.
I have underactive thyroid with no cause (checked for hashimitos) which was found when looking for reason for unexplained fever that reached 101 every day for 6 to 8 months. Normally overactive thyroid can cause fever but mine was underactive and after 4 months of synthetic thyroid hormone fever was gone.
Last bought of diverticulitis I had fever at urgent Care that went away 30 minutes later when I was at emergency room and I didn't take any medicine and I was given option to spend night there because I was leaking fluid into pelvis from the diverticulitis.
Messentaric lymph nodes that have been swollen on last two CT scans that were on other side of abdomen from diverticulitis. Even should up when I wasn't actively I'll. At least my thin stools are gone since they removed polyps. The rectum polyp is also probably what caused intermittent pain when moved sometimes for the last 10 years or so. Oh and elevated Liver function tests for a while now as well.

So all that and reading that results are usually delayed when they need another opinion or to test more tissue usually because they think its cancer worries me. I just got married in September and I need to be there for my wife. Which I think most if not all here can relate to needing to be there for loved ones.

Also another reason for me to join and start this was for others who felt as I did in the future. Hopefully they read this and it helps. I've read so many where people never say what happened. Good or bad I plan on updating here.

I really do appreciate the responses and hope that I'm just being rediculous and my math about my health is wrong.

Edit to add: forgot about the numbness and tingling I get upper right and left abdomen

NHMike
Posts: 2324
Joined: Fri Jul 21, 2017 3:43 am

Re: I'm getting worried

Postby NHMike » Thu Oct 31, 2019 12:20 pm

Usmccolon wrote:Hello everyone!
I'm sure you get people scares here all the time.
A little background about me. Im 35 years old and have been tired for a long time. Have had blood in stool on and off again for years. Recently diagnosed with diverticulitis and pretty sure it's 4th time I've had it. Also had a period earlier this year where I had fever for about 8 months that hasn't been explained. It ended up going away after starting synthroid for barely underactive thyroid which did help a bit with fatigue as well. I have abdominal pain a lot more recently and frequent changes in stool. I come from a family with a history of polyps but none have been cancerous.
Some past CT showed enlarged messentaric lymph nodes as well.

Last Monday I had a colonoscopy which wasn't bad at all. The Dr said he didn't see cancer but did find 2 polyps that he removed and sent of to pathology and also scarring, I'm assuming from diverticulitis. The nurse that was in the room as well told me to expect results in 4 days. It's now been about 9 days and I still don't have results.

I'm sure I'm being rediculous but I'm getting worried that they found something and are getting extra opinions before giving me results.
I've just felt so bad for so long that I'm scared I might have cancer and I also just had a friend die of colon cancer as well.


Check your hospital portal to see if you can get results online.

Sometimes results are embargoed so you have to see your doctor to get the results.
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


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