new here and would love some advice

Please feel free to read, share your thoughts, your stories and connect with others!
worriedwife6
Posts: 2
Joined: Fri Sep 22, 2017 11:53 am

new here and would love some advice

Postby worriedwife6 » Fri Sep 22, 2017 12:07 pm

Hi all, this is a place I did not think I would find myself. Looking for some input on our situation. My husband is 48 and in good health. Went for his yearly physical and had microscopic blood in urine. He has had some kidney stones, so doctor sent him for a CT scan at the end of July. Scan showed a small kidney stone, no big deal, but also showed a rectal mass. So after the shock wore off, we got in with a colorectal surgeon that is at a nationally ranked hospital. He looked at scans and also did a rectal exam and said that the mass, which was fairly large, did not present as a cancerous mass visually but we should have a colonoscopy. So had that and it showed three polyps, one being the mass that was seen on CT. He biopsied the large one and left in in there and removed the two smaller ones. He said again that it was soft and looked benign, but biopsy is where the truth lies. He biopsied multiple spots and also did an US while he was in there. Ultrasound showed nothing through rectal wall. Biopsy came back as benign so we scheduled to have it removed last Wednesday. He called Monday morning and after the mass being cut up into over 100 pieces, three slides came back positive for cancer. It is currently staged at a T1. Problem is, he needs to recover from the removal last Wednesday, at least four weeks. Surgeon said the cancer is out of him, he went pretty deep into the wall to scrape it out, but that is not the procedure for when it is cancer so he needs to go back in and remove that part of the rectum and take lymph nodes. July CT scan shows nodes are all normal size and liver was clean. The scan also showed 70% of the lungs, since it was just an abdominal and pelvic scan that started this, so he does want the full chest CT done. That happens early next week. He has a flex sig scope on Oct 19th to see if he is healed enough for surgery. He will remove that part of the bowel and reattach and we have chosen to do the temp bag to give him time to heal and give us a better chance that he can avoid a permanent bag. 12 weeks later it will be reversed. He said if no nodes and organs are involved that he will be stage 1 and surgery is all he needs. From your experience does this sound like the right plan? If ultrasound showed it hasn't gone through the wall, then does that lessen the potential for spread? He has told us that we are more than happy to get a second opinion, but we know he is the best colorectal surgeon at that hospital and the hospital is highly ranked for this. We are feeling like we are in good hands. He told us that we need to feel like we won the lottery because with no family history of anything like this, a kidney stone could end up saving his life. I know that to be true, but I am just struggling with this right now. Thanks for any advice or thoughts you can share!

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: new here and would love some advice

Postby susie0915 » Fri Sep 22, 2017 1:24 pm

Yes this does sound like standard for a stage 1 tumor. Mine was stage 2A, no lymph nodes on endoscopic ultrasound, or spread to other organs on ct scan. It did go through the wall but did not penetrate to other organs. I had chemo/radiation to shrink tumor for surgery. After chemo/radiation all that was left was scar tissue, based on sigmoidoscopy done by surgeon. A pet scan showed no cancer anywhere not even in distal rectal area. I did still have to have surgery as the doctor said he could not be sure it had not gotten into lymph nodes.

Surgery is standard procedure for stage 1, as it must be confirmed no cancer was left over and there is no lymph node involvement. Lucky for your husband as if it was stage 2 he would probably have chemo/radiation, surgery, and chemo after surgery. It is good you feel comfortable with your surgeon. Good luck to your husband and you as well. You are right, this is a place you never expect to be. But there are so many supportive, kind, and knowledgeable people who are willing to support you and your husband whenever necessary. Hugs and prayers.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: new here and would love some advice

Postby Aqx99 » Fri Sep 22, 2017 3:53 pm

Sounds standard to me. If you want to read the guidelines set forth by the NCCN, I have provided a link. The NCCN is made up of 27 major cancer centers and sets the standard of care for each type and stage of cancer.

https://www.nccn.org/patients/guideline ... index.html
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

Re: new here and would love some advice

Postby PainInTheAss » Sat Sep 23, 2017 7:21 am

The key here is "if the surgery shows." This is going to be much more precise than an ultrasound. They will actually check the wall for trace cancer cells as well as nearby lymph nodes. If all is clear, there is pretty much no chance of spread. Especially if the tumor/polyp itself only had trace cancer cells. This is one of the biggest reasons they do the surgery so they can thoroughly check the surrounding tissue. There's just no way to tell any other way.

Also, the Tumor is a T1. That is the tumor type. They won't know the stage until after this surgery. A T1 tumor with no entry into the wall, I think, can actually turn out to be a stage 0.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

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

Re: new here and would love some advice

Postby Utwo » Sat Sep 23, 2017 3:28 pm

Could you please share results of the biopsy report.
Particularly, what's written there about margins?
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

worriedwife6
Posts: 2
Joined: Fri Sep 22, 2017 11:53 am

Re: new here and would love some advice

Postby worriedwife6 » Sat Sep 23, 2017 3:38 pm

It says invasive well differentiated adenocarcinoma,arising in tubulovillous adenoma, invading submucosa, margins indeterminate.

That discouraging or encouraging?

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: new here and would love some advice

Postby Lee » Sat Sep 23, 2017 5:06 pm

worriedwife6 wrote: . . well differentiated adenocarcinoma . . .

That discouraging or encouraging?


Well differentiated I believe is a good thing. If a remember correctly, it means the cancer cells are somewhat trying to be normal. There is well, moderate, and poorly differential. Well being the best, mine was moderate differential.

Hope this helps,

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!


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot], roadrunner and 108 guests