Surgery or no?

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rachelfromnyc
Posts: 59
Joined: Fri Oct 04, 2019 11:32 am

Surgery or no?

Postby rachelfromnyc » Thu Sep 10, 2020 1:52 pm

Looking for thoughts on my current situation. To recap, my long term treatment plan is to do chemotherapy for life and that’s all I’ve had since diagnosis. I still have the primary tumor, lymph nodes and lung nodules. My scan from June showed everything stable except some lymph nodes. My latest scan from a week ago is stable. However I had abdominal cramping from the previous day on the morning of the scan so the scan picked up the issue. It was a stasis of contents of the bowel starting in the ascending colon up to the tumor in the transverse colon. Report said "incompetent ileocecal valve". The tumor did not grow so my oncologist thinks it shifted somehow and contributed to the partial blockage. It eventually resolved and I’m able to go to the bathroom normally. She wants to continue on with chemotherapy.

But then over the weekend, it happened again. Cramps Monday night but resolved by morning. I saw my second oncologist who thinks I should have a surgery at this point to avoid future issues but with the understanding that it won’t be curative. Better to have a planned surgery than an emergency intervention when I’m feeling really bad and it may not be the best time to have surgery. For example, next treatment is tomorrow which means I’ve been off Avastin for two weeks now and everything else is stable according to the scans.

So I went back to my primary oncologist who scheduled a surgical consult for me next week. In the meantime, I’m trying to decide if I really want this surgery/how much to advocate for it. Will it improve my condition and outlook? I’m doing ok with chemo in that I’ve gotten a handle on the side effects, except fatigue, and it’s keeping things stable. Any ideas here? Or even just questions to ask the surgeon next week to help in the decision making would be helpful.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

Lee
Posts: 6165
Joined: Sun Apr 16, 2006 4:09 pm

Re: Surgery or no?

Postby Lee » Thu Sep 10, 2020 5:41 pm

I would see the surgeon and see what this person says.

Also, if you have not already done so, maybe consider getting a 2nd opinion at a major cancer center or major hospital. Is there a reason just chemo for life? There are many people out there who had this cancer spread to their lungs or liver or both and would achieve the NED status. So I am wondering if I am missing something here. Have you seen a surgeon since your diagnoses? There are options out there for destroying the cancer cell in your lungs.

I hope this helps,

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!

Lee
Posts: 6165
Joined: Sun Apr 16, 2006 4:09 pm

Re: Surgery or no?

Postby Lee » Thu Sep 10, 2020 5:46 pm

rachelfromnyc wrote: . . . Or even just questions to ask the surgeon next week to help in the decision making would be helpful.


Yes, who would you recommend to deal with my lung mets, surgeon wise. After I have this surgery. Or is it possible to do both surgeries at the same time?

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!

User avatar
beach sunrise
Posts: 301
Joined: Thu Mar 05, 2020 7:14 pm

Re: Surgery or no?

Postby beach sunrise » Thu Sep 10, 2020 10:07 pm

Hi Rachel, I agree with Lee about a surgical opinion from a board certified colorectal surgeon.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

rachelfromnyc
Posts: 59
Joined: Fri Oct 04, 2019 11:32 am

Re: Surgery or no?

Postby rachelfromnyc » Fri Sep 11, 2020 11:46 am

Hi Lee and beach sunrise, thanks for your response. The surgeon I'm seeing next week is board certified so I feel good about that. To expand a bit on chemo for life, I have a lot of lymph node/distant lymph node involvement. The ones in my neck were biopsied and found positive. None in other locations (aortic, para aortic, iliac, aortocaval, retrocaval, etc.) have been biopsied but they're englarged on scans. So they didn't think they could treat me with a curative intent and therefore chemotherapy has been the only thing offered. I've been trying to get into MD Anderson for a second opinion but because of Covid, they're not taking new patients for second opinions. The staff doesn't know when the policy will change so they've jut advised to keep calling every two weeks or so to see. Thanks for the suggested questions, I've noted them.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

Lee
Posts: 6165
Joined: Sun Apr 16, 2006 4:09 pm

Re: Surgery or no?

Postby Lee » Fri Sep 11, 2020 7:21 pm

Thank you for that clarification. I understand better what is going on. I hope you are able to get into MD Anderson. I would be sure to ask this upcoming surgeon is opinion on your options with your other cancer spreads. Maybe s/he can make a few phone calls & get you to the right place.

Good luck,

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!

rachelfromnyc
Posts: 59
Joined: Fri Oct 04, 2019 11:32 am

Re: Surgery or no?

Postby rachelfromnyc » Sat Sep 19, 2020 2:29 pm

I had the consult and it's a go with the surgery! I'm so glad, I've wanted this thing out of me since diagnosis. Now over one year and two consecutive stable scans later, I'm finally able to get the primary out. It will be an open surgery in which the surgeon will take out anything else he sees as cancerous in my abdominal area in addition to the primary tumor. No access to the lungs during this surgery but I will deal with them afterwards. I have renewed life because of this news! I know there is still a long road ahead but I feel this is a step in the right direction. Thanks again to everyone for their help and input.

Rachel
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

Detox
Posts: 59
Joined: Fri Apr 28, 2017 5:27 pm

Re: Surgery or no?

Postby Detox » Sat Sep 19, 2020 6:25 pm

Awesome! I've seen patients here do multiple surgeries so hopefully after you recover from this procedure, they can schedule you for another one down the road to resolve your lung mets.

User avatar
beach sunrise
Posts: 301
Joined: Thu Mar 05, 2020 7:14 pm

Re: Surgery or no?

Postby beach sunrise » Sat Sep 19, 2020 11:11 pm

Best news I've had all day!!!
Congrats on working hard to get to surgery!!!
I know you have to be on cloud nine and thats a good place right now :)
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

lovelife789
Posts: 160
Joined: Thu Aug 24, 2017 5:28 am

Re: Surgery or no?

Postby lovelife789 » Sun Sep 20, 2020 5:47 am

Congrats Rachel!! You have worked so hard in the past year :) wish you speedy recovery after surgery!!!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot

boxhill
Posts: 641
Joined: Fri Apr 06, 2018 11:40 am

Re: Surgery or no?

Postby boxhill » Sun Sep 20, 2020 2:30 pm

That's great news!
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

rachelfromnyc
Posts: 59
Joined: Fri Oct 04, 2019 11:32 am

Re: Surgery or no?

Postby rachelfromnyc » Mon Sep 28, 2020 8:19 pm

Had a bit of a change in plan in that the surgeon said I'm to be off chemo until surgery but when I talked to my oncologist a few days later, she wanted me to do one more round. So that was last Friday. Going into surgery I will be off chemo for three weeks and off avastin for nine weeks. I'm so tired today. Probably the most tired I've been the day after disconnect so far. I had four work related calls which I was able to take, participate and sound coherent. But afterwards, I'd set an alarm and nap until the next one. Hoping to wake up tomorrow with more energy than today.

I have all of my presurgical appointments set. On Friday, I'll go in to get a full medical assessment which will assess my risk for surgery, anesthesia, etc. Then next Monday, I have an appointment with the stoma nurse. The surgeon said it's low probability but we have to be prepared anyway. Then two days before the surgery, I'll go in for a Covid swab. I'm not really scared or anxious about the surgery itself. Mostly it's the post surgery stuff that I think about. I've never stayed overnight in a hospital or had surgery before (unless you count Lasik). Also, the oncologist said the soonest I'd be back on chemo is two weeks after which would be five weeks off total, pre and post surgery, which I'm a little concened about. It'll be my longest break since starting last year. I also just want to look ahead and see what can be done about my lungs and lymph nodes. But one step at a time right?
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

User avatar
beach sunrise
Posts: 301
Joined: Thu Mar 05, 2020 7:14 pm

Re: Surgery or no?

Postby beach sunrise » Mon Sep 28, 2020 11:39 pm

Its a very good sign you can concentrate on work while doing chemo. You go girl!!!
I wouldn't think anyone likes hospital stays but the nurses should be fantastic. I had never had surgery before my big one with cancer. I loved the two nurses who took care of me so much that I had lunch delivered to them the day I got discharged.
I am so so proud of you and all your hard work and determination to get to surgery!!!
Did the CR surgeon have any recommendations for other surgeons for your case?
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

rachelfromnyc
Posts: 59
Joined: Fri Oct 04, 2019 11:32 am

Re: Surgery or no?

Postby rachelfromnyc » Tue Sep 29, 2020 9:20 am

Beach sunrise- thanks so much for your encouragement!! That's nice that you had great nurses to care for you and it's so great you got them lunch! I didn't ask for a recommendation from the CR surgeon but that is my next mission.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

Siti
Posts: 180
Joined: Thu Aug 01, 2019 10:58 am

Re: Surgery or no?

Postby Siti » Wed Sep 30, 2020 7:51 am

That’s really good news! I’m happy you’re able to finally proceed with surgery. Do you have any family living in NYC? It’s really time to gather “team Rachel” to support you through recovery :)

If this is of any encouragement at all, my husband’s lymph nodes were noticeably smaller post surgery. He did a CT scan 5 weeks after his surgery and right before chemo. So yes indeed, please take it a step at a time.

Wishing you a successful procedure and speedy recovery!
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.


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