Solitary lymph node metastasis: treatment options

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I_will_fight
Posts: 103
Joined: Mon Jun 29, 2020 3:38 pm

Re: Solitary lymph node metastasis: treatment options

Postby I_will_fight » Tue Jul 26, 2022 5:03 am

skb wrote:Dennyp,
Thanks for your concern, Dennyp.

A biopsy was done on lymph node which was positive. But when lymph nodes were removed during surgery, they were negative for adenocarcinoma.

Something is off. Either the biopsy was wrong. Or the pathology study of lymph nodes removed during surgery was wrong. If lymph nodes had no cancer, why put me on 6 months of Folfiri??

I had a horrible surgery.
Still cant walk properly after 9 months
Still have some brain fog from chemo

I dont know if the surgery was warranted.
I feel wronged



Wow normally getting a pathology that is negative for cancer is good news, but so sorry to hear the surgery and treatment were so horrible.
46 yo male Spain
06/20 - 6cm T3N0M0 CC splenic flex
No liver mets, 3 and 4 mm lung dots (unlikely to be mets)
lymp 0/37
MSH6- other MMR+
KRAS mt G13D
V/LNI absent
PNI present
07/20 - hemicol surg, 13cm clear margins, optimistic surgn.
08/20 - CAPOX regime, 4 cycles.
11/20 - CAPOX completed. CAT scan: lesion in liver, suspect hemoangioma, no changes lung dots.
12/20 - Clean colonoscopy
02/21 - MRI liver lesion is nonspecific, stable.

skb
Posts: 96
Joined: Tue Mar 28, 2017 2:00 pm

Re: Solitary lymph node metastasis: treatment options

Postby skb » Tue Jul 26, 2022 9:42 am

rp,
I have answered your questions to the best of my ability.

rp1954 wrote:I'm working on a long answer of cumulative experiences.

Could you fill in some of the story gaps running up to surgery and chemo?
What kind of direct conversations and outside consults did you have with various surgeons before surgery.
Did you repeat our stories to them in the search for options?
what kind of uncertainties did you have and their changes/resolution in the run up to surgery?
What serial CEA readings (as well as any CBC, ALP, GTTP, LDH and CA199 panels) did you have in 3-4 months before surgery? (and after)
did you ask for (or they used) substitutions on opiates for surgery; cimetidine for proton pump inhibitors, and celecoxib for post surgical pain?
What kind of conversations and consults did you have with various oncologists before chemo actually started?
How many weeks after surgery before chemo?
what was your view of the hospital and doctors' stature and (special) quality before surgery and did you feel like there was much choice (vs work, timing, distance, big city/medical center access, HMO/insurance)?


-------------------------

Question: What kind of direct conversations and outside consults did you have with various surgeons before surgery? Did you repeat our stories to them in the search for options? what kind of uncertainties did you have and their changes/resolution in the run up to surgery?
I had conversation only with the one surgeon who performed my surgery. Now I regret it. During my prior diagnoses, I always sought second opinion at Mayo (which is only an hour's drive from here) but I did not take second opinion this time. I regret it badly now. My surgeon at the University of Minnesota is highly qualified and had great reviews and had known my case for 5 years. I trusted her. Having such a great surgeon close to where I live seemed like a good option. With this one surgeon who performed the surgery on me, I had a list of questions about the procedure and complication rate. She seemed very confident and did not give an impression that this would be a complicated surgery. At the time of surgery, I thought a lymph node had metastasis and removal of it would be simple and straightforward. But the surgery went 10 hours. The surgeon was hunting and pecking for cancerous tissue repeatedly.


Question: What serial CEA readings (as well as any CBC, ALP, GTTP, LDH and CA199 panels) did you have in 3-4 months before surgery? (and after)
CEA- Oct 2020 - < 0.5
CEA- Jan 2021- 2.1
CEA- July 17, 2021- 15.6
CEA- July 22, 2021 (repeat measurement after a week)- 17.1
CT- July 2021- Clear scan, no evidence of metastatic disease
Colonoscopy- Aug 2021- clean- no evidence of disease
PET- August 2021- one hypermetabolic lymph node (right obturator lymph node)
Biopsy- August 2021 -lymph node is positive for metastatic adenocarcinoma
Surgery- Oct 1, 2021- pathology finds lymph nodes have no cancer, some nearby tissue had cancer!
CEA- Oct 6 2021 - 1.6
CEA - Jan 24, 2022- 0.6
CEA - Feb 7, 2022- 0.9
CEA- April 25, 2022- 0.8

CEA measurements until and including Oct 6, 2021 was performed on a Siemens device and since then, on an Abbott device
Other than CEA, only CBC readings were taken before surgery, It was normal.

CT result- April 29, 2022- No evidence of metastatic disease in the chest, abdomen, or pelvis.


Question: did you ask for (or they used) substitutions on opiates for surgery; cimetidine for proton pump inhibitors, and celecoxib for post surgical pain?
I am not sure, I had oxycodon prescribed after surgery, which I used for two weeks. I did not have much pain in the abdomen after the surgery, the pain was neuropathic pain on my foot for which I took Gabapentin for six months following surgery. Now the pain is gone, numbness and lack of dorsal flex (foot drop) persists.

Question: What kind of conversations and consults did you have with various oncologists before chemo actually started?
I only met with the one oncologist who has been treating me for five years. He was the one who prescribed Folfox for me in 2017. He understood my case. His opinion was to try Folfiri for two reasons (i) It is different from Folfox which I already tried in 2017 (ii) hitting the body hard with chemo would reduce chances for recurrences. So he prescribed 12 rounds of Folfiri which I thought was too much. I asked him about it but he was firm in his recommendation. He initially thought that he might add ongoing chemo but after seeing CT and CEA results from April 2022 (which he called excellent), did not prescribe further chemo.

Question: How many weeks after surgery before chemo?
Four weeks. Surgery was on Oct 1, 2021 and Chemo started the first week of November 2021. I was very weak and had had bowel control issues at the time of the start of chemo. But I decided to bite down on my difficulties and start the chemo to improve my chances of living longer. Now it is all a blur.

Question: what was your view of the hospital and doctors' stature and (special) quality before surgery and did you feel like there was much choice (vs work, timing, distance, big city/medical center access, HMO/insurance)?[/quote]
Both the oncologist and the surgeon were very cordial and supportive before and after the procedures. They have fellowships from Johns Hopkins, Cleveland Clinic etc. Both are teaching faculty as well. I had consulted a radiologist too but she said that the new tumor was in the same field as the prior radiation in 2017 and so it is not ideal to radiate there again. These three people met at a tumor board meeting at the hospital with other doctors and decided on my treatment plan. However I have alienated the surgeon now with my repeated communications with her office regarding my post-surgery complications. I also asked her why the lymph nodes removed during surgery had no cancer but the PET and biopsy indicated it. She responded that images are images and do not have 100% accuracy. I took time off work during surgery and six months of chemo. I was able to return to the same job, fortunately. This cancer center is about 15 miles from my residence. So I did not have much travel issues. But I could not drive after the surgery for many months due to 'foot drop'. My wife took me to most appointments. At other times, I used Uber. Now I have learned to drive with my left and right feet, the left foot compensating for right foot's issues. I did not have much trouble with insurance. I could have consulted more surgeons but I felt that time was slipping away and the more I wait for surgery, the more the cancer would spread. I was very upset and had lost my energy to run after more surgeons. I had trouble with Folfiri. I lost all hair, became bald and had frequent bowel issues- sometimes it was diarrhea, sometimes it was constipation. There were some accidents.


My continued walking problems (I use a walking stick now and cant walk fast) and my poor bowel control in the morning (up to 10 am) have me frustrated. These are due to two nerves injured during the surgery. EMG tests say that the nerves were injured but not severed. I am double thinking everything, overanalyzing. Perhaps all my treatments were correct and were the best course of action for me. I know that I have been more fortunate than many cancer patients in the world and I should be grateful for the treatment I received. I am not a very outspoken person. Sometimes I think that this trait has prevented me from being a very good advocate for myself.
3/21/17: Dx T3N0M0-mid rectal 4.5cm tumor
4/18 to 5/22/17: chemoradiation- Xeloda and daily radiation (25 doses)
6/28/17: clean biopsy, clean scans
8/09/17: MRI - no evidence of tumor, no surgery, starts wait and watch
8/17/17 to 12/1/17: adjuvant chemo with Folfox
8/19 VATS wedge on 1cm lung nodule
7/17/21- Clean CT, MRI, CEA 15.6 !
8/24/21- PET , biopsy finds metastasis along obturator lymph nodes
10/1/21- Surgery to remove metastasis , 12 rounds of FOLFIRI
4/15/22- Clean scan, normal CEA

rp1954
Posts: 1596
Joined: Mon Jun 13, 2011 1:13 am

Re: Solitary lymph node metastasis: treatment options

Postby rp1954 » Tue Jul 26, 2022 12:04 pm

First, let me say I empathize with your doubts about decisions and outcome.

My mom was operated on twice in one summer in the early 60s in a small city, 100,000+. We nearly lost her.
First an exploratory surgery (horrors now superceded, largely by various imaging and tests) and then a protracted operation by a youngish, over aggressive FMG ob-gyn that apparently bulled mom's operation through when his more senior partner, and my mom's primary doctor, was out of state for several weeks. For a while he was a real butcher in his career development, with many victims with unhappy, quietly scandalized families whispering. Her operation was similarly a long snipe hunt thru lymph nodes over 9 hours for nonexistant mets, where she "died" three times on the table and re-started. She suffered serious damage and complications during 2 months unsteady recovery in the hospital, at the point of dying with both kinds of out of body experience, going toward the Light, and the eiditic recorder in corner of the room observing everything. It was about 6 years before she recovered to a plateau, but still not well as before.

The surgery appeared unnecessary as it turned out - no cancer detected in the pathology work up.
Just some hot words from the senior dr when he got back, and not long after, disassociated from the senior dr.
----
Fast forward almost 50 years, and we are shopping for that 2nd surgery, for PALN. After several strikes and a line ball, we got a lead from one my wife's friends, from a large family of doctors, on who's best in the region. This was the top surgeon at the top hospital (duh!), specially trained in Japan, with thousands of LN dissections, where other local surgeons' arrogance melt or whither at this guy's name, including the insurance company's consultant surgeon (nasty and discouraging but he signed off on insurance's paper quickly). The "line ball" was an ex-MD Anderson thoracic surgeon at the previous generation's top hospital. "Our" surgeon teamed with another senior surgeon who would first try his robotic surgery station for a laproscopic resection. When adhesions slowed the robotic surgery, they switched to an open surgery where "Zorro" took the lead, they gutted her, got the para-aortic conglomerate out in under 45 minutes (35 min??) for my visual inspection, and they replaced her intestines. I was amazed, I had barely settled into the couch for a much longer wait.
----
Although your drs nominally confirmed the elevated CEA reading, my personal view is that they missed a lot of blood data for a such likely mCRC case.
We were pulling blood for chemo at three week intervals the previous year and two week intervals going into surgery for non-standard extra options and total awareness. Under favorable sampling conditions (low inflammation and cell damage), the extra tests might help resolve those questions up front and after. My advice to others is, do more consults (three per critical specialty if possible - difficult for working patients) and more bloodwork.

Surgeons often have surprises that require decisions in real time. We are largely at their mercy and skill.
Your surgeon will simply want to move on once she runs out of helpful answers, and especially if you are restive - a threat to her standing.
I think the lawyers would want a slam dunk case, and the recovery of any cancerous tissue muddies the judgement issue, likewise the elevated CEA at 15-17 that then returns to baseline of CEA ~ 1. Table time simply translates to risk and surgical injury.

For wound healing and recovery, we felt that enhanced nutrition, beyond "std", made a difference, including IV vitamin C and home made super"Ensure". There are number of nutritional claims for some neurological recovery that are nonstandard but that I found credible possibilties.

As for chemo, our surgeon indicated getting the major masses would likely improve or re-sensitize our oral 5FU formula.
I remain an advocate of ADAPT+++ for small residual masses as a potential option with low side effects. Similar chemo served us well too.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

User avatar
beach sunrise
Posts: 672
Joined: Thu Mar 05, 2020 7:14 pm

Re: Solitary lymph node metastasis: treatment options

Postby beach sunrise » Tue Jul 26, 2022 5:54 pm

Absolutely agree with ADAPT+++.
Also, cleared it with my surgeon and potential thoracic surgeon who is also monitoring my scans (I have 2 nodes that have been there since dx but not growing) that to be proactive I will stop xeloda maintance for 24hrs before surgery if needed at some point and restart day after surgery along with celebrex, cimietidine and high dose vitamin C.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
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
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"


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