Concerned about possible recurrence

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MadMed
Posts: 123
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Concerned about possible recurrence

Postby MadMed » Wed Apr 20, 2022 11:34 pm

Ah, good news! I'm glad they apologized, what a way to mess with people! So DH will stay on W&W ?
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

jsbsf
Posts: 89
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Wed Apr 20, 2022 11:51 pm

We have to wait for a confirmation. The GI doctor told him his surgeon will contact him next week with the lab results. He seemed certain that the results will be good.

I did read something about how radiation damage could appear like dysplasia, but felt like it might be wishful thinking on my
part.

It does seem to be known. I guess generally LGD and HGD are easier to diagnose, and aren’t usually mistaken for “reactive atypia”.

We still don’t know for sure, but the GI is pretty smart and seems to know his stuff. Here are some articles I found in case anyone is concerned about being told they have HGD:

https://www.mypathologyreport.ca/atypia/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5224879/

https://www.clinicallabs.com.au/about-u ... ed-atypia/
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: 239
Joined: Sun Jan 12, 2020 8:46 pm

Re: Concerned about possible recurrence

Postby roadrunner » Thu Apr 21, 2022 1:18 am

This appears to be quite a positive data point, but I would remain concerned about the contradictory messages you are getting, and next steps may be crucial.

I hope the new pathology report is good, but even if it is I would be sure to affirmatively ask the surgeon about the first one that found high grade dysplasia. The surgeon cited morphological features (ulceration and friability) as well, so I’d want to be certain also to align his/her view with that of the gastroenterologist if you’re going to let this ride. Finally, I find that 1% comment odd. W&W has good results, but I’ve not seen 99% anywhere. From your post, I couldn’t tell quite which doctor said that (possibly his radiation oncologist?), but I would have at least a little healthy skepticism about assessments from that doctor.

Good luck with the pathology and your consult with the surgeon. I hope everybody gets their heads together from here on out!
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: 89
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Thu Apr 21, 2022 6:18 am

Yes, it was the radiation oncologist who gave the 1% number. They have a board of certified doctors who review the patient and “vote” on next steps.

I asked DH what the GI had to say about the dysplasia, but it wasn’t discussed. He only referred to his examination of the area referring to it only as an ulceration and that it was completely normal/expected. He alluded to a misdiagnosis by the colonoscopy doctor, but didn’t outright say there was no HGD. It seems the ultrasound was high enough resolution that the cell structure could be observed, the same area previously deemed to be HGD. However it’s all gonna be biopsied, even further down.

We don’t know who those doctors are, and I think they may rotate. At the time I believe they were
1) his oncologist
2) the liver surgeon (who resected his liver in 2/2020)
3) the original colorectal surgeon
4) The radiation doctor
5) ??

When they reviewed his records in 12/2019, they all recommended the surgery for liver resection (and LAR or APR). So the plan was to do those around late Jan, early feb 2020 during a chemo break after 6 rounds of FOLFOX.

The original colorectal surgeon was not available (went on vacation), so they went ahead with a MWA for liver met #2 which completed disappeared, followed by a laparoscopic resection on liver met #1 in early 2/2020 because they couldn’t wait so long to get him back in chemo.

After the liver surgery they all evaluated him again and his progress was so good he was offered a choice between a robotic surgery or the APR. He was excited to have the robotic surgery. This was all planned for after chemo was completed.

Following chemo his progress was so good, they 100% voted on radiation, 50% voted to do surgery, period. We believed it was his oncologist and the colorectal surgeon who still pushed for surgery. His oncologist has the final say, but is influenced by the others.

He went with the radiation expecting the milder surgery afterwards. While receiving radiation that doctor felt strongly that would be the end of his treatment, even seemed surprised that DH told them they were wrong and surgery was next. Somehow, he was a special candidate since stage 4 almost never (if not ever) are candidates for radiation, however they felt he was already NED after his 12 rounds of FOLFOX. They just didn’t know for certain that any microscopic disease still existed in the primary.

DH was confused, liking that feedback, but needed to clear it up with his oncologist. The radiation doctor told him that unlike chemo which might not eradicate the cancer cells, radiation is 100% effective at killing the cancer cells it reaches.

So DH and I were both wondering why he would have both radiation and then surgery if they would remove tissue that was already “cured”. Seemed to make sense that radiation took the place of surgery, but wanted to go with what the oncologist ultimately recommended.

The radiation doctor gave that 1% number because nothing’s certain, so the understanding was that he would be more or less cancer free. The radiation doctor seemed a little young enough to not be as aware of all the politics, so rather than saying nothing he offered advice more in line with what he might offer a family member. Although he was surprisingly knowledgeable and motivated as a doctor. DH was impressed by talking/learning from him.

Around September 2020 DH was still recovering from brutal radiation therapy when his oncologist called to ask if his rectal surgeon scheduled an appointment. The rectal surgeon was always the weak link in all of this, and DH had no confidence in him. Finally that surgeon contacted him for a pre-surgery appointment.

The rectal surgeon was offering only the APR, as if the robotic surgery were no longer on the table. So, DH was not happy, especially since the rectal surgeon hadn’t even evaluated him since the radiation treatment. DH asked about that robotic surgery that was an alternative back in February before any radiation was done. The rectal surgeon sort of backtracked by saying (smart-Alec manner) they’re *both* robotic, so if you prefer the less drastic surgery that can be done as well…

His surgeon was argumentative and seemed lazy, preferring to just chop everything off than to have to perform an intricate, surgery that requires much more precision. He even compared his task to the liver surgeon’s claiming her work was much easier than his would be.

What was appalling is that nobody looked at him after the radiation and they were planning to go straight to the APR around October. With some pushback, DH got an exam instead of the surgery. The oncologist as well as the rectal surgeon were surprised at just how much area was covered by radiation. I think they expected a very small area but it extended well beyond where the insignificant/nonexistent primary tumor had been, to cover an area that was originally consumed by the tumor, including all the lymph nodes. Only then did they understand just why the radiation was so painful. We were both wondering if he would ever recover. It took about 3 months to even feel OK.

That’s when they seemed to feel he was quite likely cured and to offer W&W, something else that seemed unlikely for a stage 4 cancer patient. He went with it despite his colorectal surgeons advice. By that time DH didn’t trust that surgeon at all, and we considered switching insurance plans the following year just to get him out of the picture.

Throughout 2021 we received constant good news, and midway through they decided on 6 month checkups instead of quarterly. In Nov-Dec 2021 the rectal surgeon recommend against any biopsy and documented that DH was against surgery so a biopsy didn’t make sense. DH was switched to Medicare (2 years on disability qualified him for Medicare), and before he would stay with them he asked for a new colorectal surgeon.

The new surgeon wanted to evaluate him after 3 months instead of 6. So in March 2022 all this saga started because of a cyst that he believes he scraped with an enema bottle. He really likes this new surgeon, but she wasn’t there from the beginning and is probably catching up on all this.

She’s aggressive and wants to know absolutely everything. We can tell she’s on top of things and communicates with a number of other professionals to understand what we are dealing with. She seems proactive and I think we can count on her. Right now we need to get the biopsy results back, but at least the GI (also very smart and well educated) seems to be pointing us towards a false alarm. There seems to be a really good team of professional s working together, but sometimes communication can be a problem.
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: 239
Joined: Sun Jan 12, 2020 8:46 pm

Re: Concerned about possible recurrence

Postby roadrunner » Thu Apr 21, 2022 9:46 am

jsbsf:

There’s a lot in there, and it would be irresponsible for me to try to analyze all of it, so I won’t. I will just make a few limited comments. Please just take them just as “food for thought.” I certainly hope they’re not irritating in any way—just trying to help. Point #2, however, is *advice,* but of course even that is just advice from a random dude on the internet! :D

1. The messaging/perspective on chemoradiation that you report is not accurate, or there’s a communication issue: chemoradiation can eradicate tumors and cancer in local lymph nodes in a select, fairly small set of patients with rectal tumors, but it is a decided minority. The current SOC remains resection after radiation, though W&W for complete clinical responders has gained traction in some places, and has generally shown positive results. The reason for resection even in promising cases is that it is very difficult to be sure that all of the cancer has been eliminated—W&W mainly reflects the view that it’s possible to reasonably judge that in a small group of patients. This doesn’t mean *your husband* didn’t qualify (there are very specific clinical criteria, and I have no reason to assume he didn’t meet them), but radiation doesn’t result in “cure” or “take the place of surgery” in most cases.

2. If your quote above is right, a *pathologist* found high grade dysplasia. I would not allow that finding to just “[not be] discussed,” or ignored. I would get an explanation of the finding and any implications from the surgeon. I’ve never read or heard that EUS can reliably substitute for/override biopsy “at the cellular level” in this regard. Perhaps it can, but if so I would wonder why they are doing the biopsies/getting the pathologist’s opinions.

3. Your husband’s primary tumor demonstrated the ability to metastasize, so it seems to me that it would be wise to err on the side of caution when it comes to recurrence. It appears to be a situation that is higher-risk than is typical in W&W (already a minority approach). Especially because he is otherwise NED right now.

4. There seems to be a great deal of disagreement amongst the involved physicians. It’s good that the new surgeon seems to be addressing this, and has a healthy index of suspicion, and that further biopsies were performed. That should indeed give you more data points to consider and, with hope, to reassure you. But as I noted before, even biopsies can miss things—I would want the biopsies and the surgeon’s clinical findings to agree. I wish you and your husband the best for those next steps!

5. Finally, this is clearly a complex case. Really, all stage IV cases are. Even dealing with unequivocal consensus amongst experienced, expert physicians can be head-spinning for a patient. There’s just too much for one person—especially a patient—to consider. I, of course, have no understanding or your particular circumstances, but my view is that in such situations, it’s best, if possible, to have at least one other person in the meetings to try to record and process what the doctors are saying. (Not judging, of course. I myself have to “fly solo” in this regard, and I find it very challenging. My doctors have had to be very patient with me!)

Also, as you mentioned previously, second opinions are always worth considering in such situations, particularly where there’s a lack of consensus in the primary team. Good luck!
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: 89
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Thu Apr 21, 2022 12:17 pm

Thanks roadrunner! I appreciate your feedback. I think we are both on the same page. What I’m liking is that the initial biopsy is a subset of one of yesterday’s samples. I feel like the pathologist will be less in the dark this time when examining since they will be getting the sample from a GI who is very familiar with that part of DH’s anatomy.

The GI concurred with the initial colonoscopy diagnosis when he was sent home: no cancer, and claims that he sees a lot of patients who have cancerous cells, and so is pretty good at picking up anomalies during a procedure such as yesterday’s.

But yes we have to wait for the biopsy results before we can think about the next steps. His new surgeon will tell him, and I’m going to remind him to clarify why they told him they found HGD the first time (if it’s not a finding this time).

I’m not sure why they considered him such a success story, but all along they treated him like an anomaly. I always questioned why they were so adamant that his metastasis was totally eradicated. But they seemed sure and I certainly didn’t want to stand in the way or have them come back and say he didn’t qualify for radiation or surgery.

They literally felt sure he was cancer free at least following the radiation. They didn’t share a lot of details. So, I’m not sure of KRAS or BRAF. I just know his original staging and that it was MSS with 2 liver mets. Maybe they have information they haven’t divulged that makes them sure about things I thought could not easily be ascertained.

But in any event, yes, his new surgeon is asking a lot of questions. Unfortunately I haven’t spoken directly with any of his doctors. COVID has been an impediment since I’m lucky to be allowed into a waiting room, and he has to constantly get COVID tests. I just have to hope I’m interpreting his feedback accurately.

He’s the one dealing with this firsthand and I can only push him so much. For the moment we’re both enjoying this moment. Next week we can decide what comes next.

Thank you so much for for your advice!
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: 239
Joined: Sun Jan 12, 2020 8:46 pm

Re: Concerned about possible recurrence

Postby roadrunner » Thu Apr 21, 2022 5:27 pm

That’s some interesting stuff. Good to have such optimistic doctors (I think)!

I’m surprised about the continuing COVID restrictions. Thought most places had liberalized at least a little on that. Perhaps someone could connect you via video or call?
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: 89
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Mon Apr 25, 2022 8:18 pm

I wanted to follow up. I’ll need to also give an update in the W&W thread.

We are still waiting for the biopsy results from last Wednesday, but they are expected by Wednesday afternoon.

The surgeon sent a message Friday at 3:49pm to tell us the MRI showed that the tumor had grown since the previous MRI from 6/2020, right between the last FOLFOX infusion and the first EBRT treatment.

Both of us had a bit of a meltdown because our most recent news from the ultrasound had been positive. We did however read the MRI report but didn’t fully understand the terminology.

We reached out to the oncologist and the surgeon, knowing we wouldn’t hear back until after the long weekend.

I thought about it all weekend and determined that the MRI report seemed consistent with the report from the GI. What’s frustrating is that the GI insisted that what he saw was not a tumor. He says the mass is ulcerated and is the result of the radiation. It’s larger than the original tumor because they covered an area that extended beyond the tumor, which makes sense. However the surgeon still referred to that area as a tumor, but bigger.

The MRI described it as soft tissue mass that indicated transmural disease.

This morning the oncologist called to tell DH that the surgeon is off base because there is nothing at all out of the ordinary. The “high grade dysplasia” was a misdiagnosis because the pathologist was not made aware that DH had radiation. It’s something else I suspected. The surgeon kept approaching the situation as if DH had a malignant tumor, even after we were given feedback to the contrary from the colonoscopy as well as the endoscopic ultrasound.

So overall, this past month was a fiasco, and DH was prescribed anti anxiety medication as a result. Although we have not received the biopsy results, we have absolutely no reason to expect there to be cancer.

The positive from all this is that he got the most thorough watch in 2 years.

I will follow up after Wednesday. We are hoping to continue on W&W
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

MadMed
Posts: 123
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Concerned about possible recurrence

Postby MadMed » Mon Apr 25, 2022 9:01 pm

I’m just going to say it. WHAT THE F! I can’t imagine what you and DH have been going through. This is borderline unprofessional to jerk you around like this. I sincerely hope Wednesday brings some good news and resolution. UGH!
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

roadrunner
Posts: 239
Joined: Sun Jan 12, 2020 8:46 pm

Re: Concerned about possible recurrence

Postby roadrunner » Tue Apr 26, 2022 1:35 am

In my view, the biopsy will be a helpful data point, but it may not be dispositive. If there ever was a situation that calls for a second opinion, this is it.
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: 89
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Tue Apr 26, 2022 8:29 am

It’s extremely frustrating. Yes, especially since they told him he had HGD on the initial surface biopsy. So now I don’t expect these more significant biopsies to look perfect…. I just hope they know for sure how cells without cancer or dysplasia are supposed to look after radiation. At least otherwise I have a good deal of relief since so many people have said it all looks good.
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

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

Re: Concerned about possible recurrence

Postby prs » Wed Apr 27, 2022 11:00 am

jsbsf wrote:It’s extremely frustrating. Yes, especially since they told him he had HGD on the initial surface biopsy. So now I don’t expect these more significant biopsies to look perfect…. I just hope they know for sure how cells without cancer or dysplasia are supposed to look after radiation. At least otherwise I have a good deal of relief since so many people have said it all looks good.

I'm so sorry you have ben subjected to such a fiasco. I'm in total awe of how well you have handled all this, and how you have managed to stay calm and in control. I know you will find the right path as the data comes thru, and you figure out which Doctors to trust.

Your DH is a very lucky guy to have you at his side!
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

jsbsf
Posts: 89
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Concerned about possible recurrence

Postby jsbsf » Wed May 04, 2022 7:43 pm

Thank you so much Peter. I had to take a short break because I didn’t want to come here posting updates during the dark times. That just doesn’t benefit anyone.

DH got his biopsy results last Friday, and unfortunately they found cancer in the sample. They scheduled him for a CT scan, which was Monday. The CT scan was to determine if the cancer had spread. The previous MRI results made it appear local only, since it didn’t detect any lymph node or vascular invasion. The only real concern was that there was potentially microscopic invasion of the prostate. The ultrasound didn’t think so.

We got the CT scan results Monday night (fast) and it looked really good on paper. The oncologist called, very exited, Tuesday to confirm that there is no spread. His most recent scan was in December. We know the oncologist wouldn’t have released that report Monday night, had the CT scan found mets.

So, the plan is surgery. DH is taking it like a champ, and I’m thrilled.

It’s been a long road, and we feel like W&W was a good idea since he didn’t feel at all comfortable with his previous surgeon, and we seem to be discovering it was caught early enough for a successful salvage operation.

His new surgeon is fantastic, and I know he’s in good hands.
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

Claudine
Posts: 680
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Concerned about possible recurrence

Postby Claudine » Wed May 04, 2022 9:38 pm

Well now you know, and it looks like you’ve got a good plan - I hope the surgery goes smoothly! Do you already have a date?
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox ; Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11

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

Re: Concerned about possible recurrence

Postby prs » Thu May 05, 2022 11:33 am

jsbsf wrote:Thank you so much Peter. I had to take a short break because I didn’t want to come here posting updates during the dark times. That just doesn’t benefit anyone.

DH got his biopsy results last Friday, and unfortunately they found cancer in the sample. They scheduled him for a CT scan, which was Monday. The CT scan was to determine if the cancer had spread. The previous MRI results made it appear local only, since it didn’t detect any lymph node or vascular invasion. The only real concern was that there was potentially microscopic invasion of the prostate. The ultrasound didn’t think so.

We got the CT scan results Monday night (fast) and it looked really good on paper. The oncologist called, very exited, Tuesday to confirm that there is no spread. His most recent scan was in December. We know the oncologist wouldn’t have released that report Monday night, had the CT scan found mets.

So, the plan is surgery. DH is taking it like a champ, and I’m thrilled.

It’s been a long road, and we feel like W&W was a good idea since he didn’t feel at all comfortable with his previous surgeon, and we seem to be discovering it was caught early enough for a successful salvage operation.

His new surgeon is fantastic, and I know he’s in good hands.

Great to know your DH has confidence in your new surgeon!

This is a generalization, but my experience is the best surgeons are often those young enough to have been taught all the state-of-the-art procedures, but old enough to have had enough practical experience to be experts at what they do.

Not always a good idea to be one of the patients on whom a young surgeon learns his trade.
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


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