crybaby wrote:My dad was diagnosed with colorectal cancer in 2017. .... He went for surgery in April 2017 for that and had a temporary ileostomy on right. He also developed an infection of some sort so another bag was added to the left side of abdomen...
Peregrine wrote:crybaby wrote:My dad was diagnosed with colorectal cancer in 2017. .... He went for surgery in April 2017 for that and had a temporary ileostomy on right. He also developed an infection of some sort so another bag was added to the left side of abdomen...
Hello crybaby -
Welcome to the forum. I'm sorry to hear about the recent developments in your dad's case. I can understand why you are so concerned now.
Before making any detailed comments, I would like to ask if your dad was treated in the U.S., and if so was his surgery done in one of the 20 major cancer centers listed below? It seems to me that many of your dad's current problems can be traced back to the complications from the initial surgery done in 2017.
.
CRC surgery ratings for the top 20 US cancer hospitals
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59684#p474134
crybaby wrote:... But there is my another worry now, the main MD wrote on paper that the treatment was complex curative. But the radio onco wrote it as palliative process. Though on his radiotherapy discharge paper is written as Complex Curative Technique. My dad actually met the MD just today and he asked to do PET/CT in a week or so and this time he also wrote on paper "Post Pall RT". I don't know but this palliative really bugs me. For most of time they tell they tell us this will remove the cancer but still write it as palliative...
crybaby wrote:... Doctor's response have been quite assuring to my dad that this radiation will eliminate any disease. But then why is it mentioned palliative RT. I actually have 2 doc OPD paper where on older paper he wrote it as complex curative and in current one palliative. This really bugs me. I have so many questions for the doc which I don't really want to ask...
Peregrine wrote:crybaby wrote:... But there is my another worry now, the main MD wrote on paper that the treatment was complex curative. But the radio onco wrote it as palliative process. Though on his radiotherapy discharge paper is written as Complex Curative Technique. My dad actually met the MD just today and he asked to do PET/CT in a week or so and this time he also wrote on paper "Post Pall RT". I don't know but this palliative really bugs me. For most of time they tell they tell us this will remove the cancer but still write it as palliative...crybaby wrote:... Doctor's response have been quite assuring to my dad that this radiation will eliminate any disease. But then why is it mentioned palliative RT. I actually have 2 doc OPD paper where on older paper he wrote it as complex curative and in current one palliative. This really bugs me. I have so many questions for the doc which I don't really want to ask...
Thanks for your reply and the additional information.
It seems to me that you have two main questions right now, one about which course of treatment is the best one to follow, and the other one about the inconsistent usage of words like "palliative" vs. "curative".
Right now I will focus on the latter issue and try to give you my perspective on the matter. Keep in mind that what I am saying represents the impressions I get from the way that the terms "palliative" and "curative intent" seem to be used in the U.S. I don't know anything about the practices in your country.
First, a little background on your dad's case. He was diagnosed with a low stage Rectal Cancer in 2017 (i.e., no mets at that time), and had the rectal tumor removed by surgery in April 2017 followed by a FOLFOX/CAPOX adjuvant therapy regimen a month or so later that ended around September 2017, and where the October PET/CT scan was clear. -- this would have been one of the standard interventions recommended for that type of cancer, and it appeared to be successful in eradicating the cancer at that point in time
However, a year or so later, another PET/CT scan showed some kind of pelvic deposits, presumably from a local recurrence in the pelvic area but the exact location/size was not specified. This is unusual and wouldn't be expected to happen if the rectal surgery had been done properly as a Total Mesorectal Excision (TME), Low Anterior Resection (LAR) followed by adjuvant chemotherapy.
Then there was a gap of 2 years or so when no PET/CT scans were done at all (probably because of COVID restrictions)
Finally, in 2022, a new PET/CT scan showed that the pelvic mass had become larger, and now it has a large SUV-uptake, and the scan also shows uptake in the soft tissue in the sacral area. Thus, it appears that your dad's diagnosis was then changed to mCRC (metastatic CRC), i.e. Stage IV equivalent because of the new PET/CT findings, but I'm not sure if any biopsy was done to confirm this. This is not clear to me from the information given in your post. But since the PET/CT scan showed potential problems in two different places, this would be coded as Stage IV-B equivalent. But if you include the findings in the lung area as possible mets, too, then this would suggest metastases in three different locations -- pelvis,spine, and chest area.
The fact that there seem to be mets in several different locations has implications for so-called "curative intent" interventions. This means, essentially, that the patient will be coded for "palliative" care initially until such time when it can be determined that all of the mets can be removed, either by surgery or by some sort of radiation/ablation.
There are, thus, two types of "curative intent"
1. Curative therapy: A single intervention will be able to remove all of the mets in one operation.
2. Complex curative therapy: Multiple (sequential) interventions will be in required in order to achieve "curative intent" status.
"Complex curative therapy" is indeed complicated because the team of doctors managing the patient will need to agree on which of the several met locations should be dealt with first, and which one(s) should be dealt with later. This is often the predicament because the mets that are to be dealt with later might become inoperaple in the mean time, which would mean then that the patient cannot be treated with "curative intent" at all but must remain in the "palliative" category.
In your dad's case, this is my impression of what is going on. Stage IV patients, by default, fall in the palliative category unless the patient's medical team can agree on how all of the troublesome mets can be removed, either by surgery or by radiation/ablation. In my opinion, standard chemotherapy doesn't count much as an intervention for eliminating mets that were large enough to show up on a scan. Standard chemotherapy is really only good for eliminating small micro-metastases (i.e., for "mop-up" therapy). That's just my personal opinion; others may disagree.
roadrunner wrote:It’s a little difficult to offer an opinion on why one doctor is using the term “curative” while the other is using “palliative,” not least because I am in the US and this kind of question involves cultural as well as personal factors as far as the doctors go. But here’s my overall take: I would try to concentrate less on broad generalizations like this and more on (1) specifics, e.g., “Is the cancer gone/NED?” “What are the odds of recurrence?” etc., and most crucially, (2) is the treatment being recommended—whether termed “curative” or “palliative”—the optimal one. I know that cancer patients and their caregivers often want the reassurance that comes from hearing a doctor say “curative,” and have an understandably negative reaction to hearing “palliative,” but often these are just words. No doctor knows the future, either way, and their personalities and perspectives often color how they communicate. If there’s a difference in treatment approach, that’s important. Perhaps I missed it, but I didn’t see that here.
crybaby wrote:... I just want someone to tell me if we are following the correct procedure. What questions should I need to ask my doc?....
Peregrine wrote:Hello crybaby -
Your other main issue is:crybaby wrote:... I just want someone to tell me if we are following the correct procedure. What questions should I need to ask my doc?....
To address this question we would need to have more information about the technical details from the original biopsies, pathology reports and CT scan reports from early 2017, as well as similar updated biopsy and pathology information on the newly discovered masses in 2022, plus general information related to Medical History, family history of colorectal cancer, any current co-morbidities, such as cardiovascular problems, obesity, diabetes, etc.
Some of the missing information is:Age of patient at DX,
Date of very first screening for colorectal cancer and the result of that screening
Grade of primary tumor
Type of cancer (e .g., adenocarcinoma, or some other more aggressive type)
Number of local lymph nodes sampled in original surgery, and number found positive for cancer.
TNM staging at DX
Lympho-vascular invasion (LVI) from surgery path report
Peri-neural invasion (PNI) from surgery path report
Surgical margins (proximal, distal, circumferential) from surgery path report <-- this one very important (!!)
Exact location of new pelvic mass. Is it in or on the neo-rectum/anastomosis, or is it completely outside the current neo-rectum and somewhere else in the pelvic cavity?
MSI status of primary tumor / new pelvic mass. (needed for evaluating possible targeted immunotherapy now)
KRAS/NRAS/BRAF testing result for tumor / new pelvic mass. (needed for evaluating possible targeted immunotherapy now)
etc., etc.
Any information in these areas would be helpful, because these data items are the important ones that the medical team examines when they decide what the best therapy regimen will be.
For more detailed information on additional data items found useful by the medical team, read the ADDENDUM in the following post:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597
crybaby wrote:... This is all I know about the case. I am not sure about lymph node involvement and could not found mention in any documents. Docs never suggested any biopsy for current treatment. The treatment just started on the basis of PET/CT report.
Rock_Robster wrote:...Certainly a tough situation. The trouble of course is that a subsequent local rectal recurrence can be potentially very challenging to deal with...
Peregrine wrote:Hello crybaby,
When I get back I will be working on an annotated retrospective review of your dad's past 5 years, based on the timeline you gave above, but I will need some additional information that would most likely be found in these two documents:
1. Surgery report for the TME / LAR / iIeostomy surgery, April 10, 2017
2. Pathology report for the resected rectal tumor specimen from the April 10, 2017 surgery above.
Would you be able to look in your files to see if you can find these two reports?
Thank you
crybaby wrote:... What questions should I need to ask my doc?...
Peregrine wrote:
● MSI status of primary tumor / new pelvic mass (needed for evaluating possible targeted immunotherapy now)
● KRAS/NRAS/BRAF testing result for tumor / new pelvic mass. (needed for evaluating possible targeted immunotherapy now)
Peregrine wrote:crybaby wrote:... What questions should I need to ask my doc?...Peregrine wrote:
● MSI status of primary tumor / new pelvic mass (needed for evaluating possible targeted immunotherapy now)
● KRAS/NRAS/BRAF testing result for tumor / new pelvic mass. (needed for evaluating possible targeted immunotherapy now)
Your dad needs to ask the MD to request testing for MSI status, as well as for KRAS/NRAS/BRAF mutation status. This testing should have been done 4 years ago when the possible local recurrence first showed up in the scans. Now it is urgently needed in order to plan for possible targeted immunotherapy to follow the chemo/ radiation therapy.
crybaby wrote:...I have been trying hard to be offline and just focus on my exams that are starting tomorrow...
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