New here......not a club I planned to join!

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New here......not a club I planned to join!

Postby Smirks44 » Sun Sep 17, 2017 2:17 pm

I am 49 years old, and was diagnosed with rectal cancer three weeks ago. The tumour is apparently large, but relatively high up as far as rectal cancer goes (6 cm from the anus). The CT scan does not show spread, but the MRI is indicating 4 suspicious nodes. The doc stated that MRIs are wrong about that 30% of the time, so I am desperately hoping to fall in that statistic. I am gradually coming to terms with what all this means, but the last few weeks have been so incredibly dark and difficult. Surgery is scheduled for this Tuesday, and I am nervous beyond belief. I am expecting to have a temporary ileostomy, but won't know for sure until after surgery. I am told that the pathology results will take about two weeks, and if the nodes are indeed positive I will need chemo. My heart is breaking.....for me and for my family. My sister passed away from breast cancer at the age of 50 in 2013. I am BRCA positive (breast cancer gene), so I had preventative surgeries to avoid cancer (mastectomy and oopherectomy). I feel like I have already "paid the cancer gods" so to speak. NO ONE deserves cancer of course, but this just feels horribly unfair. I am so sad, so angry and so scared. Any words of wisdom or encouragement from those of you who have travelled this path ahead of me would be so deeply appreciated. Friends and family tell me to be positive, but that just feels like an empty, meaningless suggestion right now.....

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Location: Pacific NW

Re: New here......not a club I planned to join!

Postby weisssoccermom » Sun Sep 17, 2017 2:27 pm

Hello there. AS you said, this is not a club you planned to join but we will hopefully give you advice, hope and just be there when you need to vent or ask questions.
My first question to you is to wonder if any doctor ever suggested having chemoradiation first to attempt to shrink the tumor? Next, have you consulted more than one surgeon? Is your surgeon board certified in colon and rectal cancer surgery? If not (and the link will be in this post to verify your surgeon), GET TO A BOARD CERTIFIED SURGEON....or, at the very least....get a second opinion.
I know, you want it out and want it out NOW but.....particularly with rectal cancer, there are tests that should be run first.....not afterwards.
For example, have you had an EUS (endorectal ultrasound) to help clinically stage you? That test will assess the depth of the tumor into the rectal wall....MRI, CT are not as accurate for this as the EUS (also sometimes called a transrectal ultrasound).

I'm not saying that your surgeon isn't good or doesn't know what he/she is doing just seems odd that you haven't (at least based on what you have written) had the usual tests (have you also had blood work done?) and have had some radiation. Has anyone even mentioned chemoradiation to you before surgery?

Don't rush into this if there is ANY doubt. Have you seen an oncologist yet? That is the ONLY doctor (NOT THE SURGEON) who can tell you whether or not you need surgery.
PLEASE....if you haven't seen an oncologist or a second surgeon.....GET AN APPOINTMENT before you have surgery.
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

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Re: New here......not a club I planned to join!

Postby Lee » Sun Sep 17, 2017 3:45 pm

Ditto to what weisssoccermom said.

If you do indeed have rectal cancer vs colon cancer, you really need chemoradiation prior to surgery. Is there anyway to get a 2nd opinion. You've only got one shots to get this right the first time. And if you are dealing with rectal cancer, you are NOT being treated with "standard care for rectal cancer".

If you are dealing with rectal cancer you REALLY want a BOARD CERTIFIED COLON RECTAL SURGEON doing your surgery. They have the extra training in working in a small area and getting it right the first time. The last thing you want is to get a recurrent in that area because the 1st surgeon did not quite know what s/he was doing. So make sure the surgeon "colon rectal surgeon" vs a "general surgeon".

What testing have you had done since your diagnoses? Again, please if you do have rectal cancer, please a 2nd opinion at a major hospital.

Good luck,

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!

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Re: New here......not a club I planned to join!

Postby Aqx99 » Sun Sep 17, 2017 4:33 pm

I third what has already been said. Make sure you see a board certified colorectal surgeon. Also, see your oncologist to discuss chemoradiation before the surgery. When it does come surgery time, make sure you get with an ostomy nurse to learn about the ileostomy and be marked for the surgery.

I felt I had "paid the cancer gods," as well with my rectal cancer treatment. Only to find out that I also had ovarian cancer when my pathology came back on my "weird looking" ovaries and a spot removed from my peritoneum.
Anne, 40
Stage IIIB Rectal Cancer
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

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Location: Michigan

Re: New here......not a club I planned to join!

Postby susie0915 » Sun Sep 17, 2017 8:19 pm

I agree with all who have posted. After diagnosis i met with the surgeon. He scheduled ct scan and endoscopic ultrasound. I also had appt with oncologist and radiation oncologist. At the same time I sought second opinions from surgeon, oncologist, and radiation oncologist from another hospital.

Both hospitals would treat my stage 2A rectal cancer with chemo/radiation, surgery, and probable chemo after. I spoke with a gastroenterologist friend and he told me at my stage the treatment was pretty standard.

We are not medical professionals but there is a wealth of experience at all stages here and you want to be sure you are receiving the most up to date treatment for your cancer from an experienced team of doctors. That is why second opinions are so important. Most Drs can get you in pretty quickly for second opinions. I had my colonoscopy on May 7, had all necessary tests, spoke with a team of Drs from two different hospitals and started radiation/chemo by may 28.

I know this is so overwhelming and you just want to start getting rid of the cancer, but you also need to be sure are comfortable and have all the information. There are many caring and knowledgeable people here that can provide you with good advice. Prayers and hugs.
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

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Re: New here......not a club I planned to join!

Postby DarknessEmbraced » Sun Sep 17, 2017 9:15 pm

I'm sorry you're going through this and hope that your surgery goes well!*hugs* I'm sorry for the loss of your sister.*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! :)

Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: New here......not a club I planned to join!

Postby jhocno197 » Mon Sep 18, 2017 7:47 am

Please make sure that testing is done on the tumor to indicate if there are any specific targeted treatments for you.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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