Newly Diagnosed Stage 3C Rectal Cancer

Please feel free to read, share your thoughts, your stories and connect with others!
Cmarie03
Posts: 22
Joined: Sat Feb 16, 2019 6:35 pm

Newly Diagnosed Stage 3C Rectal Cancer

Postby Cmarie03 » Tue Feb 19, 2019 9:00 pm

Hi all - I am a 33yo recently diagnosed with stage 3 rectal cancer. Complete shock as cancer/colorectal cancer does not run in my family. My tumor is staged at T4N2a (I think I wrote that right). Anyways, came back home for holidays and 12/20/18 developed a cyst around tumor which put me in pain, sent me to the ER and likely saved my life. I had some symptoms but was pregnant (gave birth July 2018) and postpartum so I chalked up the symptoms to hemmroids/childbirth/postpartum issues.

Was diagnosed in local ER - my brother and SIL are both doctors (my brother radiologist) so they fast tracked all the results, basically got the diagnoses and staging same day I went to the ER. I traveled to MD Anderson in Houston for second opinion. I am following their treatment plan which is 4 rounds of FOLFOX (have had 3 already, 4th coming up next week) then back to MD Anderson for scans beginning of March. From the scans I think they will tell me if I can begin radiation/chemo pill or have to do more chemo. I will have to have significant surgery eventually which will include a complete hysterectomy. Not sure if I’ve really come to terms with that yet. They did give me the option to harvest eggs but strongly suggested I did not have time to do that and I should begin chemo asap, so that’s what I did. God has blessed me with two healthy children already.

Found this forum and have been reading some although its basically scared the shit out of me more. Only silver lining seems to be the cancer has not spread to my liver or lungs. I’m worried it will spread more as I’m receiving chemo, I’ve tried to stop googling shit about it. I have appointment tomorrow with genetic counselor to do bloodwork. I am scared and angry but trying to accept it all.

I’m not sure why I’m writing this but have been wondering recently if 4 rounds of chemo will be enough for me to start radiation? I’m worried when I go back to MD Anderson beg of March they will tell me I have to do more chemo? I am also now worried about radiation since finding this forum lol Way more side effects from that than I thought? I still can’t believe I’m even here. I am healthy and young. Literally went to spin class 3x a week entire time I was pregnant and am a runner. Literally 3 days before my diagnosis I ran 4 miles and felt great. It’s all just wild. :|
Diagnosed stage IIIC rectal cancer 12/20/18 in ER
4 rounds FOLFOX January 2019-February 2019
Xeloda/Radiation March 2019-April 2019
Scans sched 6/10/19
Surgery sched 7/23/19

Caat55
Posts: 649
Joined: Sat Dec 23, 2017 6:01 pm

Re: Newly Diagnosed Stage 3C Rectal Cancer

Postby Caat55 » Wed Feb 20, 2019 12:26 am

CMarie,
I am very sorry, it is a lot to take in. There is lot of scary stuff here but also a lot of hope and success. We have been where you are now and for many of us the questions, honest answers and support were a lifeline. I have great family and friends but there are things I only said here. You are doing it backwards from me, I started with radiation and chemo, then surgery and them more chemo. It was my understanding the chemo helped hold things back, slowed, stopped and radiation helped shrink tumor, but I really just did what I was told. There are things you can do to decrease the side effects of the chemo, search the Folfox threads. Smarter folks will weight in with links and support.
In my hearts and thoughts,
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

Punky44
Posts: 282
Joined: Mon Oct 01, 2018 4:29 pm

Re: Newly Diagnosed Stage 3C Rectal Cancer

Postby Punky44 » Wed Feb 20, 2019 12:36 am

Sorry you find yourself here.

Just speaking from experience with my mom, she is also a stage 3 (T3N2) and her doctors agreed neoadjuvant chemo (systemic chemo before radiation and surgery) would be the best approach in her case. For us, she had four rounds of FolFox, was scanned, and they saw 40% shrinkage, so they continued with four additional rounds of Folfox. We are now on a break before radiation and surgery. So in her case, getting to complete 8rounds of systemic chemo was the plan all along and would have only changed if her mid cycle scans would have shown it wasn’t working. They tell us they are trying to stop the micrometastes that could theoretically be in her system so she doesn’t become a Stage 4.

You will be in my prayers as you continue this journey.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at 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

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

Deb m
Posts: 482
Joined: Tue Jan 14, 2014 10:08 am

Re: Newly Diagnosed Stage 3C Rectal Cancer

Postby Deb m » Wed Feb 20, 2019 10:06 am

Welcome to the board. For what it's worth, my husband and I also traveled to MDA for his treatment and surveillance. We can't say enough good about the place. Your in good hands!

Deb m

NHMike
Posts: 1954
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly Diagnosed Stage 3C Rectal Cancer

Postby NHMike » Wed Feb 20, 2019 11:29 am

I was staged 3B and started with radiation and chemo together, then surgery, then more chemo. So your protocol is a little different than what I went through but hospitals have been doing trials with different orderings for a while and some of them make it out to clinical practice. Things are scary but, as my GI doctor said early on, you just put one foot in front of the other and continue on. You're young and otherwise healthy so it should be easier for you to handle the treatment and, of course, you have access to MDA. So yes, things are scary, but you can always come here and ask questions or get support.
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

Labs4Me
Posts: 2
Joined: Sat Aug 25, 2018 3:13 pm

Re: Newly Diagnosed Stage 3C Rectal Cancer

Postby Labs4Me » Wed Feb 20, 2019 12:59 pm

CMarie,
Your case reads almost exactly as my wife’s. She was diagnosed in July 2018 with RC Stg 3c T4N2 and we high-tailed it MDA in Houston. I found this forum at that time and read several years’ worth of posts as we had never been through anything remotely close to cancer. She quickly began the 4 rounds of Folfox and subsequently 28 rounds of chemo radiation. Concerned by what I had read on here regarding side effects, we were astonished that the only negative effects through both the Folfox and Chemo radiation was the sensitivity to cold during the Folfox treatments. No nausea or excessive fatigue or weakness. I will say that she had a diverting colostomy because of obstruction after the 3rd round of Folfox and this likely contributed to the lack of side effects from chemo radiation. She had her surgery 2 weeks ago which lasted 12 hours. It required her colorectal surgeon, a gynecologist and a urologist. Her CR surgeon is fairly confident that they were able to “get it all” but she will likely undergo a few more rounds of Folfox as a precaution. Yes, you’ll read about terrible experiences here but there are good news stories as well. These are the ones that you need to focus on. Only time (and a great deal of future testing) will tell in our particular case, but we’re very encouraged. MDA is the best. Period. A lot of folks prefer MSK in NYC, but we’ve met a lot of New Yorkers at MDA. I’m mostly a lurker on the forum, but if you have any questions please feel free to ask. One more thing...being Stg 3 instead of Stg 4 is a big deal.

Cmarie03
Posts: 22
Joined: Sat Feb 16, 2019 6:35 pm

Re: Newly Diagnosed Stage 3C Rectal Cancer

Postby Cmarie03 » Wed Feb 20, 2019 9:49 pm

Labs4Me - oh thank you for the reply!! The plan I do believe is the 4 rounds of FOLFOX, 6 weeks of radiation/chemo pill, the big surgery (which will require a plastic surgeon, urologist too for me as well) then more chemo I am sure. I am glad to hear her surgery went well - who was her surgeon, dr you??? How has her recovery from surgery been? I do believe I will have to have a temp bag but the surgeon said she should be able to hook me back up after a few months
Diagnosed stage IIIC rectal cancer 12/20/18 in ER
4 rounds FOLFOX January 2019-February 2019
Xeloda/Radiation March 2019-April 2019
Scans sched 6/10/19
Surgery sched 7/23/19

Cmarie03
Posts: 22
Joined: Sat Feb 16, 2019 6:35 pm

Re: Newly Diagnosed Stage 3C Rectal Cancer

Postby Cmarie03 » Wed Feb 20, 2019 10:09 pm

Also labs4me, how much did her tumor shrink after 4 rounds of FOLFOX? I am worried they’ll make me do more chemo after these first 4 but I will roll with whatever they tell me to do. I have been impressed with MD Anderson and the team there. I am doing my chemo locally back at home but I haven’t decided about radiation yet. Did she do her radiation at md Anderson too? I’m leaning towards radiation there too and definitely the big surgery there.
Diagnosed stage IIIC rectal cancer 12/20/18 in ER
4 rounds FOLFOX January 2019-February 2019
Xeloda/Radiation March 2019-April 2019
Scans sched 6/10/19
Surgery sched 7/23/19

Labs4Me
Posts: 2
Joined: Sat Aug 25, 2018 3:13 pm

Re: Newly Diagnosed Stage 3C Rectal Cancer

Postby Labs4Me » Fri Feb 22, 2019 1:16 pm

CMarie,
Her surgeon was Dr. Bednarski. He’s the greatest! Always made time to talk to us for as long as we wanted to talk. But they are all good at MDA. I highly recommend having your radiation and surgery done there as we did. So many resources available if anything unexpected comes up and everyone is always on the same page. Honestly, we didn’t see much shrinkage after the neoadjuvant Folfox treatments, but after the 28 rounds of chemo radiation (Xeloda) the pre-op CT & MRI suggested a 50% reduction. We got the pathology report yesterday and it says that there was 40% of viable tumor in the specimens. She’s doing well since surgery. Despite a 10” vertical incision in her abdomen and undergoing APR and complete hysterectomy, her biggest complaint was the Foley catheter that had to remain in for 2 weeks because her left ureter had to be resectioned and reimplanted into her bladder. Well, they removed the catheter yesterday and she’s now feeling like a new person. It was a good day. Pathology said out of 44 lymph nodes resected, ZERO were positive. All margins were clear as well. As far as the temp ostomy, this was one tough decision. The surgeon left it up to her whether to reconnect or make the colostomy permanent. My wife had a few years of bowel trouble leading up to her diagnosis (I know, she was hardheaded about screening) so she was well aware of life with diarrhea, urgency, etc, and she had been living with the colostomy for several months after diagnosis. She had seen both sides of it. Her tumor was low in the rectum but the dr said that he could reconnect, but she would likely have issues similar or worse than what she had prior to the colostomy. We had learned to manage pretty well with the colostomy and it definitely gave her life back, not having to worry where the closest toilet was. We had been pretty much home bound for years. In the end, she opted for the APR with permanent colostomy. However, she is 60 YO and she said that if she’d been in her 30’s (your age), she would’ve definitely given the reconnect a go. I wish you good luck and offer my prayers. It’s a long journey but you’re so fortunate to have access to a great facility. They’ll take good care of you. After 100-plus appointments there we kinda know the ropes so again, if you have questions now or in the future I’ll be happy to help.

NHMike
Posts: 1954
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly Diagnosed Stage 3C Rectal Cancer

Postby NHMike » Fri Feb 22, 2019 3:53 pm

Cmarie03 wrote:Also labs4me, how much did her tumor shrink after 4 rounds of FOLFOX? I am worried they’ll make me do more chemo after these first 4 but I will roll with whatever they tell me to do. I have been impressed with MD Anderson and the team there. I am doing my chemo locally back at home but I haven’t decided about radiation yet. Did she do her radiation at md Anderson too? I’m leaning towards radiation there too and definitely the big surgery there.


This doesn't answer your question but my tumor shrank over 90% on Radiation+5FU.
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

JackabeeMom
Posts: 1
Joined: Tue Mar 12, 2019 9:43 am

Re: Newly Diagnosed Stage 3C Rectal Cancer

Postby JackabeeMom » Tue Mar 12, 2019 11:04 am

Just wanted to say I hear you and it sounds like we are very similar in our respective journeys. I was diagnosed in February with Stage 3 Colorectal (right at the crux of the two) Cancer. I had my port installed Monday and 1st round of FOLFOX starts on Thursday.

Maelleous
Posts: 113
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Newly Diagnosed Stage 3C Rectal Cancer

Postby Maelleous » Tue Mar 12, 2019 1:46 pm

That is rough, but to give you some hope, I am about to get my 2 and half year scan, was Stage 3C as well. I only was able to do 3 rounds of chemo, then had cardiac arrest from it (super rare reaction to folfox). I was diagnosed at stage 2, but post surgery was 3C. I opted not to do radiation since it was such mimumal benefits and had to have a jpouch and most people have a lot of issues post radiation. I did do a clinical trial to avoid re-occurrence.

Will be praying for you and your family, but many people survive it, you will too! Treatments advance every day.
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!

Cmarie03
Posts: 22
Joined: Sat Feb 16, 2019 6:35 pm

Re: Newly Diagnosed Stage 3C Rectal Cancer

Postby Cmarie03 » Mon Mar 18, 2019 11:35 am

JackabeeMom wrote:Just wanted to say I hear you and it sounds like we are very similar in our respective journeys. I was diagnosed in February with Stage 3 Colorectal (right at the crux of the two) Cancer. I had my port installed Monday and 1st round of FOLFOX starts on Thursday.


Hey JackabeeMom, god bless you, it’s such a f*cking (excuse my language) whirlwind, right??? I already did 4 rounds of FOLFOX. I start radiation today at MD Anderson. How did your first round of chemo go??? I hope minimal side effects for the first one. Where are you located? Many hugs to you, we’ve got this!!
Diagnosed stage IIIC rectal cancer 12/20/18 in ER
4 rounds FOLFOX January 2019-February 2019
Xeloda/Radiation March 2019-April 2019
Scans sched 6/10/19
Surgery sched 7/23/19


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: ginabeewell, Google [Bot] and 18 guests