Please help, input needed

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Jacques
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Re: Please help, input needed

Postby Jacques » Sat Nov 30, 2019 9:18 pm

zx10guy wrote:... Also, start getting into the habit of getting a copy of your scan images and scan reports. You can request a copy of the images be burned onto a CD before you leave the scan facility. Having copies of the CD will be extremely valuable if you need to obtain a second opinion. Having the scan reports will allow you to refer back and see for yourself what the radiologist found in your scans.

Excellent point! It's all the more important when the important scans/tests are being done at a variety of facilities in different cities and different counties.

https://m.wikihow.com/Organize-Medical-Records

DarknessEmbraced
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Re: Please help, input needed

Postby DarknessEmbraced » Sun Dec 01, 2019 9:46 am

I'm so very sorry you're going through this!*hugs* It's hard waiting for results!*hugs* I would stay away from google because it will only worry you. I would try to do the things you enjoy so you can get your mind off of things!*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! :)

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horizon
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Re: Please help, input needed

Postby horizon » Sun Dec 01, 2019 10:26 am

Sorry you're going through this. I did the exact same thing you did and upset myself horribly by what I found on Google. You have to remember that much of those stats are for people that are much older than you who get CC. What I predicted would go wrong didn't happen (and I upset myself over terribly) and what was bad I couldn't have predicted. That was 8 years ago and I'm still here. Focus on fighting this and you'll get a lot of support here.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

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Jacques
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Re: Please help, input needed

Postby Jacques » Mon Dec 02, 2019 11:53 pm

Good luck on your CT scan on Tuesday! Let us know if you need any more help or input.

Mohrfamily
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Re: Please help, input needed

Postby Mohrfamily » Tue Dec 03, 2019 5:52 am

This has to be extremely terrifying for you to face this "alone", I can't even imagine. The good news is you're not alone now that you are HERE. This Thanksgiving one of the many things I'm thankful for was all the good people on this forum, providing how, positivity, and great feedback/ info.

1.Dr. Google = bad
2.The best rated hospitals are not always a saving grace sometimes you need to think outside the box, get info here or dig it up. But never be afraid to ask anything, anytime!
3.Not every person responds the same to treatment, some people go straight to surgery, some trudge through chemo to get there and some never make it to surgery.
4.A positive attitude is very... VERY important to have in your arsenal. My husband will trash talk his liver as he walks for exercise.
5.I don't know your religious preference and I am not here to preach but faith, hope, love and prayer help. They did my mind and soul a world of good at the onslaught on my hubby's diagnosis.

Focuson the success stories, Try not to think to hard on the negative, you'll be in my prayers this season.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed no surprises in surgery

Ulendon
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Re: Please help, input needed

Postby Ulendon » Tue Dec 03, 2019 2:43 pm

I had the MRI yesterday. I freaked out a bit when they pulled me out after 45 minutes and had me wait while the doctor came down and looked. I pretty much convinced myself I was dying right there but apparently that's fairly normal?

I missed a call from the gastro doctor that did the Colonoscopy who wanted to know if I had any questions. And when I called back the office was closed. This morning I emailed and asked how large the mass was and where it was located. I couldn't think of anything else to ask.

She replied and said it is in the rectum 10 centimeters from the anus and at least 5-6 centimeters in size. So I have a drop of information.

The lack of information is definitely the worst part!

Ulendon
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Re: Please help, input needed

Postby Ulendon » Tue Dec 03, 2019 4:51 pm

Just got a call back from the gastro doctor that did the Colonoscopy and she said she looked at the mri. She said that there are a couple of enlarged lyph nodes near by and based on that and what the tumor looks like she thinks that the surgeon will probabky want radiation prior to the surgery.

No idea what any of this means just scared and information dumping at this point.

AmyG
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Re: Please help, input needed

Postby AmyG » Tue Dec 03, 2019 6:05 pm

I didn't have radiation, but I know lots of folks here have.

It's going to be okay. I was pregnant when I found out I had cancer, stage 4 at that. I went on to have a healthy full term baby and I'm about to do my last round of chemo and currently cancer free. You'll get through this, we're here for you.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3

Ulendon
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Re: Please help, input needed

Postby Ulendon » Tue Dec 03, 2019 6:38 pm

MRI results

Impression
Stage T3bN2 rectal adenocarcinoma. No evidence for sphincter involvement. The circumferential resection margin is clear of tumor. No evidence of extramural vascular invasion nor suspicious node threatening the circumferential resection margin.

Heading out to the CT.

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Jacques
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Re: Please help, input needed

Postby Jacques » Tue Dec 03, 2019 8:20 pm

Ulendon wrote:... I couldn't think of anything else to ask...

Two other things you could ask are:

1. Did you send a biopsy sample of my tumor out for MSI testing, and what is my tumor's MSI status? (MicroSatellite Instability (MSI) testing is now required of all colorectal cancer tumors, according to NCCN).

2. Did you request that I have a CEA blood test done? (A baseline measurement of tumor marker CEA -- CarcinoEmbryonic Antigen -- is required before any kind of treatment is started -- surgery, radiation, or chemo.)

These two tests should have been ordered as soon as the tumor was suspected to be cancerous. If they haven't been done so far, they should be done now before it is too late.

There are several other tests that are highly recommended at this stage, too, for example, KRAS/BRAF mutation testing.

Tupelo honey
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Re: Please help, input needed

Postby Tupelo honey » Tue Dec 03, 2019 9:12 pm

Ulendon wrote:MRI results

Impression
Stage T3bN2 rectal adenocarcinoma. No evidence for sphincter involvement. The circumferential resection margin is clear of tumor. No evidence of extramural vascular invasion nor suspicious node threatening the circumferential resection margin.

Heading out to the CT.


Pretty close to where I was. The tumor has not gone thru the colon wall. That’s good news.
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED
05/2018 NED
11/2018 NED
11/2019 NED

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Jacques
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Re: Please help, input needed

Postby Jacques » Tue Dec 03, 2019 10:58 pm

Ulendon wrote:... Oakland is where the surgery center is and I have a Friday appointment with the colo-rectal surgeon Dr. Amy Tolan ...

Your Friday appointment with the surgeon is likely to be a very important meeting. By Friday, all scan results and biopsy results should be in, and the surgeon may then be in a position to give her view about what stage your cancer is and what your surgery options might be.

What you could do right now in the next couple of days is to get ready for this important meeting. You could read the surgeon's biography, for example. She is a Board Certified colorectal surgeon -- that's very good! She also mentions the acronyms TAMIS and TME in her bio. These are things that you should familiarize yourself with because they might turn out to be relevant for you. On the other hand, they might not be so relevant. It all depends on things like the size, location and grade of your tumor.

You should also review the relevant sections of the NCCN Rectal Cancer booklet to see the range of procedures and treatments available for Rectal Cancer patients. Also, this booklet has a list of questions to ask the doctor (pages 70-73). You should be sure to have your own written list of prioritized questions ready to ask the surgeon. It would be even better if you could bring a friend with you to the meeting to help write down the answers that you are given to your questions -- but this is not always possible.

Meanwhile you could do some reading on the range of rectal surgery options, such as LAR, TAMIS, TEM, and APR, for example:

LAR
https://www.mskcc.org/cancer-care/patient-education/about-your-low-anterior-resection-surgery

TAMIS
http://tamisurgery.com/options

TEM
https://www.gwdocs.com/specialties/colon-rectal-surgery/tem/

APR
https://www.texasoncology.com/types-of-cancer/rectal-cancer/surgery-for-rectal-cancer/

If your cancer is in fact coded as T3bN2 at 10 cm above the anal verge, as your gastroenterologist has suggested, then it may be that it will be a laparoscopic LAR procedure that your surgeon recommends. In any event, you should be prepared to listen to whatever options she might propose. Please note that the T3bN2 notation that your gastroenterologist mentioned is only the first part of the TNM staging code. The missing "M" component will be determined later based on the results of your CT scan. Before your Friday meeting you should familiarize yourself with the TNM Staging System so that you can better understand what the surgeon is talking about.

Also, now that most of the information has been collected to determine your initial staging, it is time for Kaiser to assign an oncologist to your team. Actually, if your surgeon proposes a 5-week session of neo-adjuvant chemo/radiation prior to the surgery, then you would have two oncologists on your team -- a medical oncologist and a radiation oncologist. (When you find out who they are, you should check their credentials to make sure they are Board Certified in their specialty.)

One final point: Now that you have been promoted to "Registered User" status you should be able to send/receive private messages (PMs) with members who want to communicate with you privately. This may be of interest to you because female patients undergoing pelvic radiation here sometimes have issues that they want to discuss privately with other female patients but do not want to discuss these issues on the main board.

-----
Note: If your surgeon is proposing a laparoscopic LAR procedure, there is a very important post here that you should read and discuss with your surgeon (read the last paragraph):
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59120&p=467267#p467267

Your surgeon may not be aware of this research. She got her Board Certification in 2014, but these findings came out later, in 2016.
Last edited by Jacques on Thu Dec 05, 2019 1:11 am, edited 2 times in total.

Ulendon
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Re: Please help, input needed

Postby Ulendon » Wed Dec 04, 2019 3:14 pm

Thank you for all the info! It is extremey helpful and appreciated. I'm reading it all and making notes to discuss with the doctor.

Some good news! The CT results are in and as follows.(well, these are the impressions from the results)

"Impression
Redemonstration of known rectal mass with adjacent perirectal and presacral lymph nodes measuring up to 11 mm.

Abnormal appearance of the uterus and cervix as detailed above possibly related to a combination of leiomyomatous disease and nabothian cysts although incompletely evaluated on this examination. Recommend correlation with pelvic ultrasound.

No evidence of metastatic disease within the chest.

Hepatic steatosis and hepatomegaly."

So the cancer has not metastatized! Though apparently I have a few other, less terrifying issues to deal with. Fibroids and my liver isn't happy with me being overweight.

I'm much less panicked now that I have a fair amount of I formation. I'm emailing with the gastro doctor and I'll be asked about the other blood tests and biopsy info. Thanks for the specifics about what I should ask about those.

Punky44
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Re: Please help, input needed

Postby Punky44 » Wed Dec 04, 2019 9:15 pm

Great news that your liver and lungs are clear!

What are your next steps?

My mom was a T3N2M0 as well and they suggested total neoadjuvant therapy where you get your chemo upfront to start to attack any potential spread that just may not be visible. Then you get radiation and lastly surgery. Something to consider.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

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Jacques
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Location: Occitanie

Re: Please help, input needed

Postby Jacques » Thu Dec 05, 2019 12:19 am

Punky44 wrote:Great news that your liver and lungs are clear!

What are your next steps?

My mom was a T3N2M0 as well and they suggested total neoadjuvant therapy where you get your chemo upfront to start to attack any potential spread that just may not be visible. Then you get radiation and lastly surgery. Something to consider.

The option discussed above by Punky44 is called TNT (Total Neoadjuvant Therapy). It is one of several possible rectal cancer treatment regimens used before surgery. You can read more about it here:
https://www.oncnet.com/news/tnt-vs-conventional-radiotherapy-locally-advanced-rectal-cancer

Since your gastroenterologist thinks that pre-surgery radiation might be recommended by your surgeon, it would be a good idea to become familiar with the various alternatives to conventional radiotherapy before your Friday meeting. Conventional radiotherapy is a 5 or 6 week regimen of chemo/radiation therapy. TNT is longer than that in duration. Then there are the shorter ones called "Short Course Chemo-Radiation".
https://www.cancertherapyadvisor.com/home/cancer-topics/gastrointestinal-cancers/rectal-cancer-comparing-long-course-chemo-radiation/

And there are even some pre-surgery chemotherapy regimens that don't involve radiation at all. Your surgeon needs to explain all of these to you and tell you why some are better than others in your particular case.


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