An Introduction

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

An Introduction

Postby Aqx99 » Sat Apr 01, 2017 8:11 am

Hello all,

I am new here and just wanted to introduce myself. My name is Anne, I am 39 years old and was diagnosed with rectal cancer on February 21 this year. It came as a huge shock to me and my husband. I had been experiencing diarrhea for several months and saw a little bit of blood, but I thought that was because I had recently started trying to eat better and exercise in an effort to lose weight. I figured I had given myself a hemorrhoid with all of the bathroom visits, hence the blood. I went in for a routine physical on January 27 and mentioned my bathroom habit change to my doctor. She ran my blood and found I was anemic, so she sent me to a gastroenterologist. He suggested a colonoscopy to find out what was going on. In the recovery room he showed me several pictures of my tumor.

I saw a colon and rectal surgeon on February 23 for my initial evaluation. On February 27 he performed an ultrasound and informed me that the tumor was through the wall of the rectum and he could see one involved lymph node. I had a CT later that day that showed 2 involved lymph nodes, but no metastasis. He called it a working Stage III tumor, since he won't know for sure until he gets in there. He set me up with referrals to one of the local cancer centers.

I met with my medical oncologist on March 8 and my radiation oncologist on March 10. On March 13 I got my tattoos for radiation and went in for chemo counseling. On March 22 I had my radiation simulation. I started taking Xeloda and getting radiation on March 23. If all goes according to plan, I will be having a low anterior resection and temporary ileostomy in late June or early July. After will probably be more chemo, but nothing has been decided yet.

The biggest shock to me in all of this is that we do not have colorectal cancer in my family. Like I told my doctors, I was ready for breast cancer. My mom has had it twice, at 35 and 62. Her mom died from it. I have spent my entire life since puberty prepping myself for the day I eventually felt a lump. This diagnosis hit me like a freight train. Luckily, I do have my mom's strength to draw from. She kicked cancer to the curb twice and is still going strong, turning 70 on April 7. I only hope I can be as brave as she was both times.

So, that's the story of my life for the past month or so. It feels good to talk about it with others who know what I am going through.
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

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: An Introduction

Postby KElizabeth » Sat Apr 01, 2017 11:36 am

Hi and welcome to the club. I'm sorry you have to be here but so glad you found us. Our little group has helped me tremendously.
I was diagnosed at 34 with no history of colon cancer but various solid type cancer going back to my great grandmother. I've been tested for all the known family cancers but none were detected. Still I worry about my kid and sister. Many in this group have Lynch syndrome that can manifest as several types of cancer including breast cancer. You will want to get tested for microsatilite instability to know your risk and to know what treatment options you will have available should you need treatment beyond first line treatment. You should also ask for tests for mutations on your tumor so you will know which treatments will help or hurt.
It's hard getting diagnosed at an early age and not knowing why this happened to you. I always wonder if it's something I did to myself by eating habits or work exposures or just luck. The best thing is to just accept and face it as bravely as you can. Stay positive and seek the company of friends who make you laugh.
They'll be others who chime in with better advice than me here soon. Give yourself time to take it all in and arm yourself with questions for your next doctors appointment.
Hugs.
Elizabeth
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

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

Re: An Introduction

Postby Aqx99 » Sat Apr 01, 2017 11:46 am

They did genetic testing on the biopsy sample they took at my colonoscopy. I have also been to the genetics clinic at my cancer center and spoke with a genetic counselor. Due to my family history with cancer, we decided it was best to test me for a wide range of genetic mutations. She sent my blood off to be tested for 28 different mutations. I will get the results in 2-4 weeks.
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

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: An Introduction

Postby Beckster » Sat Apr 01, 2017 6:21 pm

Welcome to the forum. You will find that this group is a great source of strength and information. I too was diagnosed in November with stage 2A colon cancer of the cecum with no family history. I still grapple with this diagnose and find it difficult at times. I am also on Xeloda, finishing my 5th cycle out of 8. Even though I had no lymph node spread, my oncologist put me on it as "insurance."

This forum help me through my chemo, so I want to share it with you. Xeloda drys you out, so drink plenty of water. It will greatly help you and also flush the chemo out of your system. Hand and foot syndrome is another problem.. Put plenty of lotion on your hands and feet. Eucerin and Utterly Smooth are great. However, it might happen anyway. If you have any questions about Xeloda, let me know. As the cycles continue, you will have cumulative effects, but they are doable.

Best of Luck... You can do this!
Beckster
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: An Introduction

Postby Swirdfish » Sat Apr 01, 2017 7:04 pm

Hi Anne welcome. You will get through this, I've completed surgery radiation and chemo and about to get my reversal. It's not easy but doable. Each course has it's different side effects but as you go along it gets better. I was so stressed and worried to start with but as time and treatment goes on you feel better each time.

Good luck and welcome :D

The radiation was easy up to week 6 where it really hit me and two weeks after radiation stopped. Major pain in my abdomen maybe they buzzed my small intestines not sure. I was on tramadol and oxy for that one. Surgery was prob the worst for me but chemo isn't easy either. Butt you will get through it.

Make sure you get the best colorectal surgeon. We knew nurses at the hospital so we had them ask around. My surgeon was the head top surgeon of that hospital so I was happy. The first surgeon seem to always see me last minutes of he day kind of thing and seem to not care.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

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

Re: An Introduction

Postby DarknessEmbraced » Sun Apr 02, 2017 3:01 pm

Welcome to the group and sorry for the reason you're here. I hope your radiation and surgery go well!*hugs* I'm glad you had genetic testing done! I was tested for Lynch Syndrome and for MAP both were negative.
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! :)

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: An Introduction

Postby JudeD59 » Sun Apr 02, 2017 8:16 pm

Welcome! I'm sorry you need to be here but glad you found us. The diagnosis and all the information dumped on you right after can be overwhelming and this is a good place to sort it all out. The members here are very supportive and knowledgable.

I'm not going to pretend it will be a walk in the park, but the treatments are doable. Just be sure to speak up and let your doctors know of any issues or concerns you have. If you need something for anxiety, they will prescribe it for you. If you need medicine for pain or nausea, just ask. Don't try to tough it out. They can help you manage any symptoms or side effects you are having.

I also think it's important to take notes or keep a journal. With the anxiety and the medications and the effects of treatment, it's easy to forget things. Writing down your questions for the doctor as you think of them makes doctor appointments easier and ensures you get the answers you need.

Don't be afraid to ask anything on here or express your feelings of frustration, sadness, anger, whatever. We've all been there and we're glad to be a safe place for you to talk about things you might feel others who haven't been through this won't understand.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

Milo77
Posts: 1
Joined: Wed May 03, 2017 2:29 am

Re: An Introduction

Postby Milo77 » Wed May 03, 2017 3:54 am

Hi Anne,

Newbie here, veteran survivor.

Firstly, I would like to state that there is no substitute for self advocacy. Take control of your battle. Engage the enemy. No, I am not military, just speaking metaphorically.

Here we go, huh? I had a new marriage, new child (5 weeks daughter) and a new tumor August 2001. I was 37, very active. Six months previous I had a bowel movement that left the bowl bright red. My wife was (math, haha) was 2nd trimester, so I put on the brave face and wrote it off as an anomaly. Two months later, my bowel habits changed for the worse. Stoically (guys can be so dumb and loving) I soldiered on until my beautiful daughter was delivered in my living room (midwife, it was quite the experience). Eight pounds of gorgeous.

Bowel urgency with little production increased to extent of visiting ER. Initial ideas were impacted bowel etc. Fortunately a doc on rotation talked to the attending and kinda took over, suggesting (based on multiple symptoms) a blood test and colonoscopy.
I woke up to pictures of my tumor. Shock value 100%.

Went home that night, still in shock, and settled my baby in her crib. That's when the water started to finally pour from my eyes. I knew I had to fight, was in the ring. I made a verbal promise to Molly Rose that I was not going away, at least not permanently. Deep moment. My wife was dealing with postpartum issues, so I grabbed the bull by the horns and googled like a fiend for two days.

Adenocarcinoma. Colo-rectal.

Further imagery showed a tumor inside and outside the colon, spread distally around the rectum.
I spoke to a few local surgeons and they were not very positive. A GI specialist mentioned a doctor with whom he had interned many yeasr prior. I contacted that surgeon and he said he would consult after I went through chemo-radiation therapy. There was a discussion about performing an ileostomy before radiation, the idea being that radiation could antagonize the tumor toward bowel obstruction. I opted, after many hours of research, to give neoadjuvant therapy a ride and have the ileostomy done perioperatively. Got my first tatoos, lol, for beam guidance. My tumor responded well to therapy, so surgery was now (4 months later) on the table. Forgive the pun, but it is worth a smile.

1300 miles of driving with an infant (my poor baby girl) led me to his office. He looked at my scans, examined me, had his team examine me, and concluded his team could do it. Actually, in his consult room, he looked at baby Molly and told her he was gonna keep me around for a while. Aw. I saved the tears for later that day. Waterfall.

I was nervous but optimistic. I had faith, Anne. Faith in myself, spiritual faith, and faith in my doctor(s). Positive thinking does not come in a pill.

Post-op I was fitted with a bag so the LAR would have time to take hold while I continued two more rounds of twice-weekly chemo. I was left with a sphincter, but nerve damage from both surgery and radiation. Small price to pay.

Now, April 2017. I have had polyps removed every few years since and my primary (last year) suggested genetic testing. Micro-satellite initially, then actual counseling based on those results. Positive for Lynch Syndrome. This is relatively new stuff in the genetic field, enabled me to be proactive in my family's future.

After rambling, I just want to say:

Be positive in thoughts, ask questions over and over until you feel confident.
You can not imagine a life without you in it. (think about that, lol)
Count your blessings daily.
Everyone here loves you.
Cry sometimes, laugh as much as possible. (colo-rectal cancer is a pain in the ass) :lol:
Laughter is amazing medicine. Mind over matter.
You got this Anne.

Hugs and more hugs, Milo

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

Re: An Introduction

Postby Aqx99 » Wed May 03, 2017 11:05 am

Time has flown since my last update. I got the results of my genetic testing, I am negative for all 28 genetic mutations they tested for. I completed chemoradiation yesterday. (Prompting an evening out with my husband, and a can of tuna for our two kitties.) My surgery is scheduled for June 14th. I will consult with my medical oncologist 2 weeks later to set the plan for chemo, based on the analysis of the tumor.

One decision I have made on my own, which I will run by my oncologist at my appointment next week, is that I decided to no longer take the birth control pill. I started on it when I was 15 due to polycystic ovarian syndrome. Since the radiation has shut down my ovaries, the PCOS should be pretty much done. I have a higher risk of blood clots due to a genetic mutation, so adding the blood clot risk that comes with the birth control pill does not seem smart to me, especially with surgery just around the corner. I called my gynecologist to run this decision by her, as the prescribing physician, she deferred the decision to my cancer team.
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

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

Re: An Introduction

Postby DarknessEmbraced » Wed May 03, 2017 3:22 pm

It sounds like it would be safest to stop the birth control pill. I'm glad you're done chemoradiation and hope your surgery goes well!*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! :)

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

Re: An Introduction

Postby Lee » Sat May 20, 2017 4:23 pm

Aqx99 wrote:Hello all,
The biggest shock to me in all of this is that we do not have colorectal cancer in my family. Like I told my doctors, I was ready for breast cancer. My mom has had it twice, at 35 and 62. Her mom died from it. I have spent my entire life since puberty prepping myself for the day I eventually felt a lump. This diagnosis hit me like a freight train. Luckily, I do have my mom's strength to draw from. She kicked cancer to the curb twice and is still going strong, turning 70 on April 7. I only hope I can be as brave as she was both times.


Be sure to get annual mammograms and pay close attention to any chances regarding your breast. There is high incident of people being diagnosed with breast cancer within a few years of a colon cancer diagnoses. They are members of the T & A club.

If you have siblings, they should be checked also.

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!

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

Re: An Introduction

Postby Aqx99 » Sat May 20, 2017 5:43 pm

I have been getting annual mammograms since I was 30. Now that I have an oncologist in my life, she has taken over from my ob/gyn in monitoring me. She wants me to get a breast MRI done in the near future. My genetic testing was negative for breast cancer mutations, but then again my mom had two different types of breast cancer.
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


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