I've graduated!

Please feel free to read, share your thoughts, your stories and connect with others!
weisssoccermom
Posts: 5950
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

I've graduated!

Postby weisssoccermom » Wed Aug 07, 2019 11:39 am

Thirteen years ago, I chose a different path for my rectal cancer treatment. Instead of the LAR surgery, I chose to undergo a full thickness transanal excision preceded by chemoradiation and chemo. When I finally convinced my surgeon that I was aware that my choice was against the 'standard of care', she agreed to the surgery BUT....made sure that I understood that meticulous and thorough follow up would be in my future. I agreed and I finally GRADUATED yesterday from the last vestige of this thorough surveillance.

I've long since stopped having CT scans ....which was my insurance company's decision. I stopped seeing my onc about 5 years ago when he moved (I didn't want to start up with a new onc just for blood work). My GP took over the CEA surveillance and she stopped that about 2 years ago - especially since it was never a good indicator for me from the get-go. Although I had 'graduated' to the 5 year colonoscopy plan after my last scope, my surgeon still insisted that, in between that 5 year interval, I needed a mini flex sig to inspect the rectal area. Well, yesterday, after a perfectly clean colonoscopy.....she told me I could stop the mini flex sigs!!

While I know that I will NEVER be able to do the 10 year scope plan, I am still eternally grateful that I have been able to get to 13 years from diagnosis and am fine. For so long, I had doctor after doctor tell me that I was going to die if I didn't do things their way. At one point, in November 2016, I had my then surgeon tell me that I would be dead in two years if I didn't agree to his plan! Honestly, there are times that I want to march right into that surgeon's office and say, 'Hey, remember me? You know, my 2 year expiration date that you gave me has LONG SINCE PASSED!'

Even though I don't think about my cancer journey on a daily basis anymore, I will never shake that feeling (thank goodness!) that I once did have cancer. When I have any GI distress for more than a day or two, my instinct is to think the worse. I will admit that prior to this scope, I was VERY nervous....afraid to wake up and hear those words that I NEVER want to hear again. I certainly didn't like the prep but thanks to so many on this board, I just did the Miralax/Gatorade/Dulcolax prep (I substituted Tang for Gatorade) for the Prepopik that she Rx'd for me. Yeah, I know that I should have checked with her first but I was no nervous in the first place, I just did what I felt was best for me. Well, guess what? She said....above average clean! My attitude....it all comes out the same in the 'end'. Now, before school starts up again, I can enjoy the rest of my summer vacation!
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

MeAndMine
Posts: 12
Joined: Mon Aug 05, 2019 2:40 pm

Re: I've graduated!

Postby MeAndMine » Wed Aug 07, 2019 12:37 pm

That is wonderful news! You have been through a lot and are doing so well, I know you are happy to finally be done! Congratulations!
8/5/2019 - Colonoscopy, rectal mass found along with polyp, waiting on biopsy results & CT

User avatar
CRguy
Posts: 9956
Joined: Sun Feb 10, 2008 6:00 pm

Re: I've graduated!

Postby CRguy » Wed Aug 07, 2019 12:53 pm

Congrats Jaynee for kickin' it to the curb !!!!

I don't think enhanced surveillance is ever a bad thing ... BUTT
sometimes it can even be a very good thing :mrgreen:

Cheers and Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

jmn
Posts: 48
Joined: Sat Aug 11, 2018 8:20 pm
Location: New York/Philadelphia

Re: I've graduated!

Postby jmn » Wed Aug 07, 2019 2:25 pm

How sweet it is! Congratulations! You are an inspiration to all of us who hope and pray that one day we’ll be able to look back over a 13-year journey from diagnosis and say, “I’m fine.”

Enjoy the rest of the summer. Hope yesterday is just the beginning of your best year yet.
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Lap-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
Stage IIB, pT4aN0 (first pathology DX: pT3N0)
0/24 lymph nodes, LVI present, PNI present, surgical margins clear, MSS
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: Xeloda (capecitabine) monotherapy, 10-16-18 to 4-21-19
CEA: 4-19, 3.4; 5-19, 3.0; 7-19, 3.0
NED: 5-28-19 :D
Clear colonoscopy, 7-15-19 :D

weisssoccermom
Posts: 5950
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: I've graduated!

Postby weisssoccermom » Wed Aug 07, 2019 2:40 pm

Like I've always said....I was more than willing to the surveillance in exchange for the less radical surgery. I just never envisioned 13 years of it!! Glad that that final test is now gone from my repertoire. While I would, of course, prefer the 10 year scope plan (who wouldn't???), I'm fine with the every 5 years. Who knows....maybe in the next 5 years, there will be a less invasive test that the 'gold standard' scope???? One can wish and wish and wish.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

User avatar
muskokamike
Posts: 218
Joined: Tue Feb 25, 2014 4:38 pm

Re: I've graduated!

Postby muskokamike » Wed Aug 07, 2019 8:28 pm

Congrats Jaynee

Lucky 13

So Happy for you.
53M Dx rc10/31/13
and a huge WTF?....then
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
temp ileo
0/24 nodes pCR - pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
Feb/15 clear scope
July/15 clear CT scan
Feb/16 clear CT scan
Feb/17 clear CT scan
Feb/18 clear scope
Feb/18 clear CT scan
CEA levels 1.6 dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5
2.6 Sept 18
0-4 normal

Bob_Weiss
Posts: 741
Joined: Sun Apr 11, 2010 11:23 am
Location: Brooklyn, NY

Re: I've graduated!

Postby Bob_Weiss » Sat Aug 10, 2019 11:51 am

CONGRATULATIONS for being willing to make an unorthodox decision which oncologists did not like. When I was diagnosed I was so scared that I was willing to do anything an oncologist suggested, even it was yodeling in a steam room. A few years after treatment was complete, I was less anxious and came to some conclusions based upon my medical reading. My major regret is that I agreed to rectal surgery rather than just radiation and chemo. It was the surgery that resulted in my years of activity-limiting symptoms from diarrhea and constipation.
Apparently, in Japan rectal surgery is rarely done; only the radiation and chemo is used. Follow-up studies in Japan indicate that the long-term outcome is about the same without the surgery and quality of life is preserved.
Stage 3 R/C -1 node+ ( 7/09)
5 wks radiation, 2 wks chemo: 5FU (8-9/09)
Rectal surgery: tumor removal (11/09)
10 rounds Xeloda: 3000mg/daily 1 wk on/1 wk off (1/10-6/10)
Supplements: Aspirin, Calcium, Vit. D3
03/27/17: 7+ yrs. since surgery--still NED

weisssoccermom
Posts: 5950
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: I've graduated!

Postby weisssoccermom » Sat Aug 10, 2019 2:10 pm

Thank you for the kind words. I actually liked my oncologist....specially because he was able to think 'outside of the box'. It was the surgeons that I saw that I really didnt like. They were never willing to deviate from the 'standard of care ' until I met my FINAL surgeon.

When my own onc was diagnosed with cancer and took an extended medical leave of absence, the group wanted to give me a new onc. By that time, I was well past 5 years out, my insurance wasn't routinely granting me CT scans and the only surveillance the new onc would have done was checked my blood tests and poked on my tummy. My GP, in conjunction with my old onc, was already ordering the tests (if anything had been awry...I would have been back at the onc) and she can poke my tummy just as well. Besides, I had NO desire to travel 40 minutes each way to visit the onc for what...a 5 min visit. I had also felt forva long time that I was 'low man on the totem pole' when it came to being seen. I get it if there is an emergency but just because I wasn't in treatment didnt mean that I was willing to keep having my appt time pushed back for other people..even if they were in treatment.

Anyway...I'm just glad it is, for the most part, I can put this all BEHIND (lol) me!
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Punky44
Posts: 331
Joined: Mon Oct 01, 2018 4:29 pm

Re: I've graduated!

Postby Punky44 » Sat Aug 10, 2019 10:24 pm

Congratulations!!
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; 7/24: 1.9
6/28/19 Reversal and port out

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


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



Who is online

Users browsing this forum: Google [Bot], Majestic-12 [Bot] and 39 guests