Concerned about possible recurrence

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jsbsf
Posts: 92
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Fri May 06, 2022 6:47 pm

Yes Claudine, we just got the date this morning. He’s scheduled for August 2. I hope your DH is feeling well. I need to spend some time catching up.

Peter, we feel pretty comfortable about her age/experience. We think she’s maybe mid 40’s. She graduated from an Ivy League school of Medicine in 2002. She did her residency until 2010 at 2 different renowned places. Her credentials are impressive. Also her assistant had some very nice things to say about her. I’m very happy. I’m happy he has this opportunity, and I’m happy she’ll be the one taking care of him.

We are both nervous. It’s gonna be a big adjustment and take some serious recovery. We plan a trip down to the Grand Canyon when he’s ready!
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: lvr spot
9/16 MSS. MRI: 2 live mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 rad
10/2/2020 NED/W&W

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Concerned about possible recurrence

Postby Rock_Robster » Fri May 06, 2022 11:30 pm

jsbsf wrote:we just got the date this morning. He’s scheduled for August 2

Sorry I might be misinterpreting this - 3 months’ time?
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

prs
Posts: 201
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Concerned about possible recurrence

Postby prs » Sat May 07, 2022 8:04 am

jsbsf wrote:Yes Claudine, we just got the date this morning. He’s scheduled for August 2. I hope your DH is feeling well. I need to spend some time catching up.

Peter, we feel pretty comfortable about her age/experience. We think she’s maybe mid 40’s. She graduated from an Ivy League school of Medicine in 2002. She did her residency until 2010 at 2 different renowned places. Her credentials are impressive. Also her assistant had some very nice things to say about her. I’m very happy. I’m happy he has this opportunity, and I’m happy she’ll be the one taking care of him.

We are both nervous. It’s gonna be a big adjustment and take some serious recovery. We plan a trip down to the Grand Canyon when he’s ready!

Perfect Doctor, best wishes for the success of the procedure!

FWIW both my colorectal surgeon and my radiation oncologist were the most caring, sympathetic, and professional lady doctors a patient could ever hope to be treated by. Both were fantastic communicators, willing to take all the time needed to provide detailed answers to all my dumb questions. :)
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

roadrunner
Posts: 240
Joined: Sun Jan 12, 2020 8:46 pm

Re: Concerned about possible recurrence

Postby roadrunner » Sat May 07, 2022 9:05 am

FWIW, I share Rob’s implicit concern about timing. It’s ultimately your and your team’s call, of course, but I would at least discuss the timing to be sure it doesn’t carry added material risk. Your husband’s situation appears to be quite unique. He is I believe a Stage IV patient placed on a W&W protocol. So this is a tumor *that has already metastasized* and I don’t believe there has been systemic treatment for quite a while. Moreover, *he is otherwise NED*. So this is not the typical Stage III situation. Once a tumor has declared itself this way, I would want it out ASAP, especially if there’s no ongoing systemic therapy. I assume the delay is a result of the surgeon’s schedule (those can be tough), but given the uniqueness of the situation, I would consult with the medical oncologist about how much risk this adds. Sorry if I’m misunderstanding anything, and obviously it’s up to your doctors and your husband, but given the apparent uniqueness of the situation I felt like it was worth raising. I wish you the best.
7/19: Rectal cancer: Staged as IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; biopsies negative
TAE 11/20, tumor cells removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT for remaining nodule 1/22
CT 3/22: Clear

jsbsf
Posts: 92
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Sat May 07, 2022 12:05 pm

Roadrunner & Rob,

Yes 8/2 is the scheduled surgery.

I was thinking the same thing. Originally I accepted the 3 month wait as positive news. I felt they determined its in such an early regrowth stage that time is on our side.

I do know the surgeon was initially very concerned with time when she discovered what she believed was a tumor. Since then, she’s been much less anxious.

They are waiting for genetic test results. That will take a couple more weeks.

I don’t understand fully what we are dealing with. It seems they discovered “cancer cells” rather than a tumor full of cancer. I believe that of the multiple biopsy samples, only one (FNA?) picked up cancer cells. But I’m not certain. I’m very careful to suggest anything that might make DH anxious or nervous, so I need to be very careful about questioning the possible risk of a 3 month wait. The belief is that this has been caught very early. They definitely have a lot of data to go by.

Yes, his last treatment, EBRT, was on 7/29/2020. Last chemo was on 6/2/2020. They recently started probing on 3/21/2022 when they found a cyst. Biopsy results taken from a 4/20/2022 ultrasound found adenocarcinoma. CT scan on 5/2/2022 confirmed no metastasis (anywhere?).

In the big picture 3 months is a short period. It’s a little different than originally when he was taken off chemo for liver resection. We were in a rush to get him back on chemo, back then.

In a way, I feel like they’re treating this like how long it takes for a handful of cancer cells to become problematic, which usually takes years. I believe a handful of cells survived the chemo radiation, and after almost 2 years on W&W they can see he needs surgery.

Over the next couple weeks, I’ll talk to him about the scheduled date, and try to convince him to ascertain that it’s really no rush and doesn’t add unnecessary risk. He did speak with his oncologist on 5/3/2022 who gave him very promising news. Since then, I believe all the doctors met to discuss plans, and came up with the 8/2/2022 surgery date. He meets with the surgeon on 5/16/2022. Maybe he can bring it up with her,then, as well?
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: lvr spot
9/16 MSS. MRI: 2 live mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 rad
10/2/2020 NED/W&W

jsbsf
Posts: 92
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Sat May 07, 2022 12:22 pm

I just told /convinced DH to reach out to his oncologist on Monday to find out if there are unnecessary risks associated with the 3 month wait. He completely agrees. Thanks guys for reaffirming my initial concerns and reminding me there are sometimes very good reasons for me to be a squeaky wheel.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: lvr spot
9/16 MSS. MRI: 2 live mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 rad
10/2/2020 NED/W&W

jsbsf
Posts: 92
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Sat May 07, 2022 3:29 pm

I wanted to add something I just confirmed with DH. There were a few samples taken for biopsies. We don’t know how many, or how many were FNA. He was told only one sample contained cancer cells, and is pretty sure that sample was taken from FNA since it goes deeper into the tissue. They could confirm that those cells were all within the area that had been radiated. So the hypothesis is it’s unlikely that there are cancer cells outside that questionable area.

(Yes we were thinking of how unlucky we would be had that one sample not been taken, and were told the biopsies were all cancer-free).

Another useful piece of data is in the MRI report. There are two types of nodes. One more local, and one that would represent metastasis. MRI says no lymph nodal invasion in either case. Additionally, no vascular invasion. There was something about mucinous something? And his wasn’t considered mucinous on the MRI. On the MRI the most worrying information was the size of the “tumor”, however that was debatable because the MRI can’t easily distinguish a tumor from tissue damaged from radiation. DH had quite extensive radiation.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: lvr spot
9/16 MSS. MRI: 2 live mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 rad
10/2/2020 NED/W&W

Rock_Robster
Posts: 676
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Concerned about possible recurrence

Postby Rock_Robster » Sat May 07, 2022 7:09 pm

Indeed my question was around the scheduling timing - it would be interesting to ask the surgeon if there is any logic to it other than accommodating her diary. Not sure if it’s useful but here (Australia) most cancer surgery is considered ‘Elective - Category 1 (Urgent)’, which means it should be scheduled within 30 days unless there’s a clinical reason to delay (eg waiting for maximum response to radiation, etc.) or accelerate (eg a perforation would become an Emergency category surgery). If there’s a reason to delay the surgery which is to your husband’s benefit then of course that makes sense, but if it’s only the fact that it “can” wait then that would make me uncomfortable. It sounds like at this point there is no regret to doing the surgery sooner, but there could be risks from delaying it until later (particularly in the stage IV setting) - even if small.

Of course we all feel better when our doctors aren’t stressed, which is great - but I don’t think that’s a reason not to keep the eye on the ball here. Unfortunately surgeries and treatments can always end up being delayed for dozens of factors beyond our control, so my philosophy is not to deliberately allow for any delays when planning.

Best of luck with it,
Rob
40M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then ~2. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo, 1/27 LN
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
2/20 Ileo reversed
11/21 Liver met & celiac node; 2-3 tiny lung things, indeterminate
12/21 PVE
3/22 Nodal spread & 3 liver lesions. Lymphadenectomy
4/22 Liver SBRT x 5

jsbsf
Posts: 92
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Mon May 16, 2022 2:16 pm

DH met with the surgeon today, and she offered 3 options. Apparently he doesn’t have a large amount of cancer cells, and so one option is to go back on chemo and hope that it would kill off all the remaining cancer cells. Chemo worked very well in the past, so it seemed like a viable option.

Option #2 was an organ preserving surgery, where he’d have a temp ileostomy that would eventually be reversed. She guaranteed his quality of life would take a considerable hit, and that he would have accidents and possibly pain for the rest of his life. Furthermore she couldn’t promise they would have clear margins and there wouldn’t be risk for a recurrence.

Option #3 is what we expected. This surgery would be with a permanent colostomy. She told him this was her recommendation. Following recovery and adjusting, he could go on about his life, and do everything he always did. She could also guarantee there would be no chance for a local recurrence.

Her last choice was #2, and chemo came in as her second.

So, he’s on board with the surgery that would result in a permanent colostomy. We’ve discussed this, and I’m happy he’s perfectly fine with that. He just wants the cancer removed once and for all. Three years of constant anxiety can do that.

Last week the oncologist offered chemo in the event surgery might need to be postponed for some reason, but mentioned he would follow up with the surgeon.

In today’s meeting, she told him it would most likely be in the first half of June, maybe even in a week or two.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: lvr spot
9/16 MSS. MRI: 2 live mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 rad
10/2/2020 NED/W&W

roadrunner
Posts: 240
Joined: Sun Jan 12, 2020 8:46 pm

Re: Concerned about possible recurrence

Postby roadrunner » Mon May 16, 2022 7:28 pm

jsbsf—Sounds like you’ve got a good idea of what’s going on, and you’ve got a solid plan and a reasonable timetable. I wish you guys the best!
7/19: Rectal cancer: Staged as IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; biopsies negative
TAE 11/20, tumor cells removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT for remaining nodule 1/22
CT 3/22: Clear

jsbsf
Posts: 92
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Mon May 16, 2022 9:13 pm

Thank you roadrunner. Thank you for your very wise advice in this forum. You have kept me on my toes more than a couple times. We know it’s the right decision and are grateful that we have this option.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: lvr spot
9/16 MSS. MRI: 2 live mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 rad
10/2/2020 NED/W&W


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