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Re: Concerned about possible recurrence

Posted: Fri May 06, 2022 6:47 pm
by jsbsf
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!

Re: Concerned about possible recurrence

Posted: Fri May 06, 2022 11:30 pm
by Rock_Robster
jsbsf wrote:we just got the date this morning. He’s scheduled for August 2

Sorry I might be misinterpreting this - 3 months’ time?

Re: Concerned about possible recurrence

Posted: Sat May 07, 2022 8:04 am
by prs
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. :)

Re: Concerned about possible recurrence

Posted: Sat May 07, 2022 9:05 am
by roadrunner
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.

Re: Concerned about possible recurrence

Posted: Sat May 07, 2022 12:05 pm
by jsbsf
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?

Re: Concerned about possible recurrence

Posted: Sat May 07, 2022 12:22 pm
by jsbsf
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.

Re: Concerned about possible recurrence

Posted: Sat May 07, 2022 3:29 pm
by jsbsf
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.

Re: Concerned about possible recurrence

Posted: Sat May 07, 2022 7:09 pm
by Rock_Robster
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

Re: Concerned about possible recurrence

Posted: Mon May 16, 2022 2:16 pm
by jsbsf
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.

Re: Concerned about possible recurrence

Posted: Mon May 16, 2022 7:28 pm
by roadrunner
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!

Re: Concerned about possible recurrence

Posted: Mon May 16, 2022 9:13 pm
by jsbsf
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.