43 Year Old Wife Diagnosed with Rectal Cancer. I'm very scared.

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JayNY
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43 Year Old Wife Diagnosed with Rectal Cancer. I'm very scared.

Postby JayNY » Sat Aug 26, 2017 2:03 pm

After having some rectal bleeding on and off for a few years, my wife got a colonoscopy on Aug 7th. Doc came out and told me she did not have hemorroids (as she thought) but instead a very large polyp. He explained that it would be removed tomorrow morning by EMR since the doctor experienced in that procedure would need to do it. The EMR seemed to be uneventful. Prior to EMR, an EUS was performed to visualized the polyp/mass. The paperwork we recieved after EMR ans EUS stated: "Rectal mass/polyp was visualized endoscopically suggesting that the mass remained confined to the luminal interface/superficial mucosa (layer 1). Images of the perirectal spaced were unremarkable. Images of the anal canal were unremarkable. No lymph nodes were seen. No specimens were collected." "One 45mm polyp in the rectum , EMR was performed followed by coagulation of polypectomy margins using argon plasma was successful to prevent recurrence of polyp. The examination was otherwise normal."

I had suspected cancer but after colonospy dr. said they dont know until biopsy is done. Last week dr. who performed EMR said that buopsy was done and there are "some cancer cells". We asked what stage....he did not give us a number but said early stage.

My wife had a ct scan yesterday morning. They said they'd call right away if there's any problems. No call so i guess that's good news.

She also has a consultation with a 'cancer specialist' (I assume that means an oncologist) next wednesday. This really worries me. Why would they schedule this if it's at a very early stage. I'm thinking it must be much worse.

From what we know so far, what are people's thoughts?

My wife feels confident they got all the cancer out. Im more worried.

Thank you for any input/suggestions.
Jay

SurvivorsSpouse
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Joined: Sun Nov 22, 2015 12:38 pm

Re: 43 Year Old Wife Diagnosed with Rectal Cancer. I'm very scared.

Postby SurvivorsSpouse » Sat Aug 26, 2017 5:45 pm

Don't sweat the oncologist (might be a surgical oncologist) consultation being called for. This is a good thing to have. There are 100 reasons that this is a good idea, thoroughness being on top. I imagine they want a specialist to review path reports and discuss if a bigger surgical procedure is indicated. This will all be based on the depth of penetration and the margins achieved with the EMR. EMR is often a treatment that is sufficient if caught in the very early stages and if the entire area can be taken. Sometimes, the polyp is flat or difficult to get with the EMR. Also, EUS is not 100% at seeing the depth of penetration, that is what surgical pathology is for. So a judgment will be made by the specialist on the path report from the EMR.

At this stage, the visit should be viewed as most likely cautionary, in order to get a specialist's opinion. From your description, it sounds like your wife was caught in Stage 1 or even Stage 0.

JayNY
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Facebook Username: edward Komperda

Re: 43 Year Old Wife Diagnosed with Rectal Cancer. I'm very scared.

Postby JayNY » Sat Aug 26, 2017 6:02 pm

Thank you so much for your informative reply. Gives me some hope.
Initially, I thought stage 0 based on EUS and "successful to prevent recurrence of polyp" being printed in report regarding EMR. But once they scheduled a consultation with a "cancer specialist" I figured it must be stage 1. Besides it was quite large so i cannot imagine only stage 0. But im trying to stay positive.

Basil
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Joined: Thu Mar 16, 2017 12:33 pm

Re: 43 Year Old Wife Diagnosed with Rectal Cancer. I'm very scared.

Postby Basil » Sat Aug 26, 2017 7:05 pm

Perspective is a funny, relative thing. Six months ago your wife's report would have sent me into a panic. Five months I would have done thirty straight hours of rain dances and switched religions to have that report.

The bad news is you have to consider and think about the "C" word. The good news is that your initial reports indicate it's early stage. Her prognosis should be excellent. Probably no chemo involved. With any luck (and your reports indicate you've been very lucky to date) you'll have this incident in your rear view mirror before you've really had a chance to process it.

Assuming that path bears fruit, do be vigilant on her monitoring scans over the next few years. You want to keep a close eye on things, just to be sure.
40 y/o male, kids 8&11
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear

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kimmercans
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Facebook Username: kimschlagel@msn.com

Re: 43 Year Old Wife Diagnosed with Rectal Cancer. I'm very scared.

Postby kimmercans » Sat Aug 26, 2017 8:00 pm

I was in the same terrified state in October of 2009.
Still here. Cancer free.
Kimberly Age 54 Diagnosed at 44
Dx'd rectal ca 10/12/09
LAR,TME 10/14/2009 Stage 2a
Opted out of Folfox.
4/19/12 CT scan clear NED CEA<0.5
10/2019 still NED
Taking curcumin, Celebrex, vitamin d, digestive enzymes, bio identical hormone replacement.
2015 to present. Stopped all surveillance. Living life one glorious day at a time.

Aqx99
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Location: Pfafftown, NC

Re: 43 Year Old Wife Diagnosed with Rectal Cancer. I'm very scared.

Postby Aqx99 » Sat Aug 26, 2017 10:23 pm

You always see an oncologist if you are diagnosed with cancer, no matter the stage. They will be the one who monitors your wife for recurrence and provides any treatment that may be needed. Don't sweat the consult. I'm going to be seeing a GYN oncologist after my rectal cancer treatment is through because they found precursor ovarian cancer cells in my ovaries and on my peritoneum during my LAR.
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

SurvivorsSpouse
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Joined: Sun Nov 22, 2015 12:38 pm

Re: 43 Year Old Wife Diagnosed with Rectal Cancer. I'm very scared.

Postby SurvivorsSpouse » Sat Aug 26, 2017 10:32 pm

JayNY wrote:Thank you so much for your informative reply. Gives me some hope.
Initially, I thought stage 0 based on EUS and "successful to prevent recurrence of polyp" being printed in report regarding EMR. But once they scheduled a consultation with a "cancer specialist" I figured it must be stage 1. Besides it was quite large so i cannot imagine only stage 0. But im trying to stay positive.


Just remember, size of the polyp/tumor doesn't matter so much, depth of pentetration does. Additionally, polyps can be found with malignant cells at the head and dysplastic (pre-cancerous) in the stalk. So that means there could be malignant cells that are not invasive themselves because of where they are.

Part of this is also a GI doc doing the CYA procedure. There are some malignant cells, so the best person to discuss is an oncologist. The last thing he wants is a reason for a lawyer to come back at him it's a "why didn't you refer to oncology as soon as you saw malignant potential?"

Chalk this up to being very very thorough just because the chance (no matter how small) is >0% that she needs a larger procedure. An onc will be better versed at explaining why or why not.

By the way, I am also a husband of a survivor, and I swear, sometimes we have it harder. Mainly because there is NOTHING for us to do or decisions for us to make. We are pretty much just observers and have to let someone else fight. We magnify everything, believe me, I have done it plenty of times. My wife is a 2A survivor 4.5 years out NED.

Utwo
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Location: T.O.

Re: 43 Year Old Wife Diagnosed with Rectal Cancer. I'm very scared.

Postby Utwo » Sun Aug 27, 2017 11:40 am

Aqx99 wrote:You always see an oncologist if you are diagnosed with cancer, no matter the stage.
That's sometimes not true.

In some countries (e.g. Canada) to save money they do not assign an oncologist to you if chemo is not required.
I suspect that the same approach can be also used in some US areas with insufficient number of oncologists.
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

zephyr
Posts: 276
Joined: Thu Aug 18, 2016 7:31 am

Re: 43 Year Old Wife Diagnosed with Rectal Cancer. I'm very scared.

Postby zephyr » Sun Aug 27, 2017 12:51 pm

Basil wrote:Perspective is a funny, relative thing. Six months ago your wife's report would have sent me into a panic. Five months I would have done thirty straight hours of rain dances and switched religions to have that report.


Couldn't have said it better.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Continue Xeloda/Avastin

tarheelmom
Posts: 168
Joined: Mon Mar 07, 2016 5:55 pm

Re: 43 Year Old Wife Diagnosed with Rectal Cancer. I'm very scared.

Postby tarheelmom » Sun Aug 27, 2017 2:48 pm

Utwo wrote:
Aqx99 wrote:You always see an oncologist if you are diagnosed with cancer, no matter the stage.
That's sometimes not true.

In some countries (e.g. Canada) to save money they do not assign an oncologist to you if chemo is not required.
I suspect that the same approach can be also used in some US areas with insufficient number of oncologists.



Seconding what Utwo said. I am Stage 1 and have not seen an oncologist. My colorectal surgeon sees me every 3 months and orders the scopes/scans/blood work. I live in the US in an area where there are two NCI medical centers within 8 miles of each other so there are plenty of oncologists. I specifically asked the question about why no oncologist since I had cancer. The answer was that when there is no chemo/radiation, the surgeon is more active in the case than an oncologist would be. The oncologists do review the case when presented to the tumor board but unless there are mitigating factors, an oncologist is not assigned to a Stage 1 case.
52 y at dx, mom to 4
DX: RC on 2/22/2016
Stage I, T2N0M0, 0/32 LN
23 mm x 7 mm moderately differentiated invasive adenocarcinoma
3 cm from anal verge
4/12/16: ULAR, TME, & temp ileostomy
6/14/16: ileo reversal

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

Re: 43 Year Old Wife Diagnosed with Rectal Cancer. I'm very scared.

Postby Aqx99 » Sun Aug 27, 2017 3:16 pm

tarheelmom wrote:
Utwo wrote:
Aqx99 wrote:You always see an oncologist if you are diagnosed with cancer, no matter the stage.
That's sometimes not true.

In some countries (e.g. Canada) to save money they do not assign an oncologist to you if chemo is not required.
I suspect that the same approach can be also used in some US areas with insufficient number of oncologists.



Seconding what Utwo said. I am Stage 1 and have not seen an oncologist. My colorectal surgeon sees me every 3 months and orders the scopes/scans/blood work. I live in the US in an area where there are two NCI medical centers within 8 miles of each other so there are plenty of oncologists. I specifically asked the question about why no oncologist since I had cancer. The answer was that when there is no chemo/radiation, the surgeon is more active in the case than an oncologist would be. The oncologists do review the case when presented to the tumor board but unless there are mitigating factors, an oncologist is not assigned to a Stage 1 case.


That's interesting, considering I am going to be seeing a GYN oncologist and do not have a GYN cancer. I am only going because they want to start monitoring me for ovarian cancer, due to the cells they found during my LAR. I guess I figured it was the same way for everybody that had any sort of cancerous growth found.
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

jayanu
Posts: 3
Joined: Sun Aug 27, 2017 5:45 pm

Re: 43 Year Old Wife Diagnosed with Rectal Cancer. I'm very scared.

Postby jayanu » Sun Aug 27, 2017 8:20 pm

Dear Jay,

My name is Jay too!

Good news is that it was caught before it ravaged the body. Once the Cancer is confirmed by the Biopsy, regardless of the stage and size, Oncologist should be on the team. The decision for the treatment whether a surgery, chemo or radiation or combination of them should be between the patient, oncologist, and the surgeon and not the GP. SO, HE IS DOING THE RIGHT THING of getting the Oncologist on board.
Colon cancer is one of the silent killers. Third in the list of cancers.

Our Story and Lessons Learned (rather a long reading):

My wife learned about her colon cancer in 2014 through colonoscopy. She had no symptoms other than twice some pain which went away with Aleve. With no sign of blood in stool or anemia, the GP disregarded as involuntary muscle spasm or something like that. She had avoided the procedure for the idea of drinking the yucky stuff and did it at age 67 vs. at 50 because we were going on a long vacation so we went through a battery of tests and all were negative and then wham – stage II colon cancer.

The oncologist advised that the Chemo was not effective for Mucinous Adenocarcinoma cancer. The Oncotype test showed that none of the nodes were affected and the chance of recurrence was 14% and did not improve much with Chemo so surgery was the option. It was successful and the Circulating Tumor Cell test showed zero cell in the blood stream after the surgery.

But it did come back in 2016 in the liver and was removed by surgery last October. Now it has come back as 6 mm nodule in the lung. The lung biopsy and surgery are risky. So, she just started her Chemo Xelox protocol with Avastin tablets and Oxaliplatin and Bevacizumab as IV. You get IV in the first week, take tablet for 2 weeks, 3rd week is free of any medicine and the 4th week the cycle starts again for 6 months,
So far, she has not shown major side effects other than some fatigue, little tingling and for few days diarrhea and today she had a black stool. If it remains black for another day then we will go to the doctor or ER. It is one of the expected side effects along with High BP, depression, rash, itches etc.

Lessons Learned:
1, Do ALL the recommended preventive tests and vaccinations. No matter how yucky is the taste of the drink! Saving money is dangerous to your health!

2. Listen to your body, don’t be brave or macho, pester your doctor with questions and read a lot – be informed it is YOUR body and only you can take care of it.

3. Eat well, drink water, exercise, avoid alcohol and tobacco, be vegetarian if possible. This does not guarantee cancer free life but you will be able to have easier time dealing with the treatment and possibly speedy recovery.

4. Enjoy every minute of life. Don’t worry about small things and everything is life is small! Stress is one cause for cancer! We have been traveling since 2014 – 2-3 cruise/year and 2-3 months overseas trips/year! Life is too short.

5. Prepare your Patient list (template at https://docs.google.com/document/d/1qZo ... X6q4Q/edit) for yourself and every member of your family to share with all healthcare service providers. Doctors need to know this and they do appreciate. I carry this and all my tests (X-ray, CTscan, Blood test, EKG, Vision test, surgery reports etc.) on a credit card size Medical USB in my wallet. I had to go to an ER a few years ago with High BP and the doctor was delighted with this organized USB card and could treat me quickly and effectively.

You can carry the data in a dog tag also - https://www.amazon.com/CHUYI-Shape-Flas ... WQ63913JFQ.

A better-organized version (little expensive but maybe worth it) is - http://www.usbmedichip.biz/nfc-wallet-card.html or a dog tag or water proof bracelet offered by them - http://www.usbmedichip.biz/bracelets.html

Or at the minimum a simple paper Medical Card for your wallet
- http://www.medids.com/free-id.php#.V_H51fkrK00,
https://geticecard.com/
http://a-fib.com/your-portable-medical-information-kit/
etc.

6. Prepare and carry your properly witnessed and notarized Will, Health Proxy, Advanced Health proxy, Durable Financial Power of Attorney valid for your state (you can download the standard templates for your state website).

You never know where and which situation you may end up in. Being prepared with these Health data and other papers on a dog tag or wallet sized Medical USB card will help minimize hassles for you and your loved ones.
REMEMBER PREVENTION IS BETTER THAN THE CURE!
Enjoy the journey with all its ups and down. Be grateful for modern medicine and medical technology. Thank God for the wonderful life that you have.

NHMike
Posts: 2398
Joined: Fri Jul 21, 2017 3:43 am

Re: 43 Year Old Wife Diagnosed with Rectal Cancer. I'm very scared.

Postby NHMike » Mon Aug 28, 2017 11:29 am

jayanu wrote:So, she just started her Chemo Xelox protocol with Avastin tablets and Oxaliplatin and Bevacizumab as IV. You get IV in the first week, take tablet for 2 weeks, 3rd week is free of any medicine and the 4th week the cycle starts again for 6 months,


Thanks. I was wondering how Xelox worked in terms of what and when you take stuff.
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

jayanu
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Joined: Sun Aug 27, 2017 5:45 pm

Re: 43 Year Old Wife Diagnosed with Rectal Cancer. I'm very scared.

Postby jayanu » Tue Aug 29, 2017 7:33 pm

My typo.
Avastin is same as Bevacizumab - generic name and it is given as IV,
The Tablets are Xeloda - CAPECITABINE

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ocstacy
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Re: 43 Year Old Wife Diagnosed with Rectal Cancer. I'm very scared.

Postby ocstacy » Tue Aug 29, 2017 9:53 pm

What I have learned in my Human Diseases class is "Early detection is Best"
I just had had my 1st colonoscopy too and I have had issues with hemorroids in the past. They found a 55 mm polo and it was benign. My mother had a 6 cm tumor and stage 3 rectal cancer. It was her fault for not listening go the dr. to get a colonoscopy 4 years ago. I remember her having pain in her abdomen breaking out in sweats. She had tons of scans done.. MRI< CT> blood test> still nothing.

It was because of me, she went and got a colonoscopy and she found it earlier than later (we pray) Cancer sucks. Prayers to your wife, looks like they caught it early. Find a good colorectal surgeon and make sure to read the reviews. I found my mom's excellent surgeon @USC through Yelp.com. I talked to three patients that had the surgery and they loved him and they loved that he saved their lives. I went into great research to find the best of the best for my mother. Parents need their children! :!: :arrow: :lol: :mrgreen:
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.


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