Just told I have a mass in rectum

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Maelleous
Posts: 127
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Just told I have a mass in rectum

Postby Maelleous » Wed Sep 06, 2017 7:48 am

I was 35 at the time and had almost exactly the same situation. Mine was 5cm as well at the time of diagnosis. My Dr said the same thing... You will have a rough road for a little while, but know there is light at the end of the tunnel.

My advice at this point, schedule an appt with a major hospital/university, while I don't begrudge local doctors, you want the best of the best. It costs the same, but sometimes has a little more drive time. You have to take your own health into your hands at time, but these big universities and medical centers deal with this constantly and have the latest and greatest.
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!
Still NED

larway
Posts: 58
Joined: Tue Dec 29, 2015 4:40 pm

Re: Just told I have a mass in rectum

Postby larway » Wed Sep 06, 2017 11:20 am

KathyLynn wrote:Hi all, I'm a 59 year old female. I had a colonoscopy yesterday. My first one. After I woke up the doctor said he was 99% sure if was cancer. So for the holiday weekend, I'm sitting here so worried. He said it was a 5 c m. That's all I know. I have an appointment with a surgeon on Tuesday and waiting for one with the oncologist. Please help, I'm going crazy here.
Thanks.


I found out a few days before Christmas about my rectal mass and had to wait over the holiday like you, so I feel your pain. Hoping you received some good news yesterday.
Dx 12-18-15 rectal cancer @ 45 yo.
30 sessions of rad/ 3300 mg Xeloda
LAR and temp ileostomy 5/2016
6 rounds of xelox
Ileostomy reversal 11/2016

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

Re: Just told I have a mass in rectum

Postby susie0915 » Wed Sep 06, 2017 12:44 pm

I agree with Maelleous. The best hospitals have the best doctors. In the end you choose where and who you feel most comfortable with treating you. I felt since my treatment was pretty standard for stage 2A, I wanted to be sure I felt comfortable with the surgeon who could give me the best chance avoiding a permanent colostomy. Although, I did prefer the oncologist and radiation oncologist at the hospital my surgeon practiced. Their coordination and care was top notch and I felt I received the best care available. You have to be your own advocate and question everything. Good Luck
Last edited by susie0915 on Wed Sep 06, 2017 3:39 pm, edited 1 time in total.
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

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Just told I have a mass in rectum

Postby DarknessEmbraced » Wed Sep 06, 2017 2:10 pm

I'm sorry you're going through this and hope you get answers soon!*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! :)

KathyLynn
Posts: 68
Joined: Thu Aug 31, 2017 3:40 pm
Location: Rock Hall, MD

Re: Just told I have a mass in rectum

Postby KathyLynn » Fri Sep 08, 2017 9:39 pm

Thank you all. I met with the surgeon and had my MRI
Waiting again on results. I will
Update you when I find more information.
You all helped so much
KathyLynn
8/2017. RC
11/27/2017. Robotic LAR. No chemo/rad
12/2017 Moderatley differentiated, 3.0 cm in greatest dimension
Macroscopic tumor perf: not identified. All margins of resection and proximal neg for tumor.
Lymphovascular and perineural invasion: not identified.
1/13/2018. T2N0M0 with isolated tumor cell (ITC)
7/2018. CEA 2.0. 10/18: 2.0. 1/19: 2.3 11/19. 2.1
11/19 CT NED
06/21 CT NED CEA 1.3

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

Re: Just told I have a mass in rectum

Postby Lee » Sat Sep 09, 2017 3:55 pm

Hi and welcome,

I have not read all the replies so this may be a repeat.

Do you know if you have colon or rectal cancer? If rectal cancer, I would highly advice getting a board certified colon rectal surgeon vs a general surgeon doing ypur surgery. Getting a 2nd opinion is always a good idea. Butt do come back here with any info you do have.

You will find a wealth of information here.

All the best,

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!

KathyLynn
Posts: 68
Joined: Thu Aug 31, 2017 3:40 pm
Location: Rock Hall, MD

Re: Just told I have a mass in rectum

Postby KathyLynn » Sun Sep 10, 2017 3:41 pm

It is in the rectum. I was told that I would not need a bag because of the location. Thank you so much for all the information, I've been reading as I can. It's so much to take in. It's so hard. But reading the post here has really helped. Oncologist on Tuesday. PET on Thursday

Thanks
8/2017. RC
11/27/2017. Robotic LAR. No chemo/rad
12/2017 Moderatley differentiated, 3.0 cm in greatest dimension
Macroscopic tumor perf: not identified. All margins of resection and proximal neg for tumor.
Lymphovascular and perineural invasion: not identified.
1/13/2018. T2N0M0 with isolated tumor cell (ITC)
7/2018. CEA 2.0. 10/18: 2.0. 1/19: 2.3 11/19. 2.1
11/19 CT NED
06/21 CT NED CEA 1.3

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Just told I have a mass in rectum

Postby Lydia666 » Wed Sep 13, 2017 10:23 pm

KathyLynn wrote:It is in the rectum. I was told that I would not need a bag because of the location. Thank you so much for all the information, I've been reading as I can. It's so much to take in. It's so hard. But reading the post here has really helped. Oncologist on Tuesday. PET on Thursday

Thanks

Hi Kathy,
This is a crappy time, torturous for sure. Just try to hold on to your sanity and know they will treat you and it is very possible to come out on the other side cancer free. All these treatments sound dreadful but they are very doable.
Big hug!
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

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

Re: Just told I have a mass in rectum

Postby tarheelmom » Thu Sep 14, 2017 12:23 pm

Kathy,

My tumor was really low, and I was pretty sure that I would need a permanent colostomy. However, my surgeon was very confident that I would only need a temporary ileostomy as long as there were no cancer cells in the sphincter muscles. There has been a lot of progress on "sphincter sparing" surgery so I would seek out a surgeon that had a lot of experience in ultra low tumors. I was horrified at the thought of an ostomy, but the reality was not that bad. In fact, at times it was easier than dealing with the bathroom issues post reversal. Also, there is a thread on this board about Watch and Wait for early stage tumors. That could also be an option. Good luck with everything, and I echo the recommendation to find a certified colorectal surgeon at a major cancer center.
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

KathyLynn
Posts: 68
Joined: Thu Aug 31, 2017 3:40 pm
Location: Rock Hall, MD

Re: Just told I have a mass in rectum

Postby KathyLynn » Mon Sep 18, 2017 11:41 am

Well, the PET scan came back good. The oncologist told me to cancel appointment with him and to go to radiation I'll know more Wednesday. But sounds like I'll have radiation to shrink tumor then surgery. No chemo? Has anyone done this treatment?
8/2017. RC
11/27/2017. Robotic LAR. No chemo/rad
12/2017 Moderatley differentiated, 3.0 cm in greatest dimension
Macroscopic tumor perf: not identified. All margins of resection and proximal neg for tumor.
Lymphovascular and perineural invasion: not identified.
1/13/2018. T2N0M0 with isolated tumor cell (ITC)
7/2018. CEA 2.0. 10/18: 2.0. 1/19: 2.3 11/19. 2.1
11/19 CT NED
06/21 CT NED CEA 1.3

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

Re: Just told I have a mass in rectum

Postby susie0915 » Mon Sep 18, 2017 2:42 pm

Yes. I had radiation/chemo to shrink the tumor. It's called preadjuvant therapy. I did 28 treatments. 5 days/week and weekends off. I also took chemo pills on the days I had radiation (xeloda). That is very common chemo/radiation therapy. You may want to ask if you will be taking chemo as well. Most on this forum with rectal cancer that had preadjuvant therapy did chemo along with the radiation. After radiation all that was left of my tumor was scar tissue, and pet scan showed no evidence of disease especially in distal rectal area. However, I still had surgery as the surgeon said until they remove where tumor was and test lymph nodes they cannot know for sure. As it turned out there was minimal residual cancer in the area where the tumor was. Zero lymph node involvement. As a result chemo after surgery was recommended as there was no guarantee cells did not get into the bloodstream.

This is good news for you though. Sounds like cancer has not spread. Good Luck with your future appointments. Keep us posted and don't hesitate to ask questions.
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

User avatar
JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

Best Hospitals

Postby JJH » Mon Sep 18, 2017 7:45 pm

It's good news about your PET scan. Please take good notes on Wednesday and let us know whar else you find out.

It would be good if you could find a major cancer center near you. Here is a link to search for NCI-Designated Cancer Centers in the US:

https://www.cancer.gov/research/nci-role/cancer-centers/find

You can also have a look at the top-rated cancer hospitals from the U.S. News and World Report rankings:

http://health.usnews.com/best-hospitals/rankings/cancer?city=&hospital_name=
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
●●●

User avatar
-Mar5-
Posts: 3
Joined: Tue Sep 19, 2017 5:23 am

Re: Just told I have a mass in rectum

Postby -Mar5- » Tue Sep 19, 2017 5:35 am

PGLGreg is right, if the cancer is not IV stage and is in a good position, the surgeons will probably be able to remove it clean with the help of neoadjuvantic chemo (probably Fluorouracil) / Radiotherapy.

There is a high probability you'll be cancer free after the treatment and live a normal life afterwards. However, you haven't provided the details of your cancer, there is a big probability the doctors will have to form a stoma on your left side of the trunk.

All will be good.

KathyLynn
Posts: 68
Joined: Thu Aug 31, 2017 3:40 pm
Location: Rock Hall, MD

Re: Just told I have a mass in rectum

Postby KathyLynn » Thu Sep 21, 2017 10:40 am

So all tests are done and the doctors had their board meeting. They told me this morning that it is a 1 B stage. T 2. M 0. After seeing oncologist/radiologist, I was told today that they can remove the tumor without any treatment. Wow, now I'm excited. But, should I have a second opinion? I was getting ready for CT scan for radiation to start. I'm so confused now. Suggestions

Thanks All
8/2017. RC
11/27/2017. Robotic LAR. No chemo/rad
12/2017 Moderatley differentiated, 3.0 cm in greatest dimension
Macroscopic tumor perf: not identified. All margins of resection and proximal neg for tumor.
Lymphovascular and perineural invasion: not identified.
1/13/2018. T2N0M0 with isolated tumor cell (ITC)
7/2018. CEA 2.0. 10/18: 2.0. 1/19: 2.3 11/19. 2.1
11/19 CT NED
06/21 CT NED CEA 1.3

User avatar
JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

Re: Just told I have a mass in rectum

Postby JJH » Thu Sep 21, 2017 1:38 pm

KathyLynn wrote:It is in the rectum...

Which part of the rectum is the 5cm tumor in, and how close is it to the anal verge?? Which of the available surgical techniques will they be using to remove the tumor?

Is your surgeon a Board Certified colorectal surgeon?
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
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