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.