Need guidance (lots of) with sacral mets and pelvic recurrence

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crybaby
Posts: 22
Joined: Sat Jun 11, 2022 4:20 am

Need guidance (lots of) with sacral mets and pelvic recurrence

Postby crybaby » Sat Jun 11, 2022 5:18 am

My dad was diagnosed with colorectal cancer in 2017. Actually I always wanted to avoid talking about this but now I am really scared. The tumor was 8cm from anal verge upto 15cm. 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. His improvement was slow. Later he was put on FOLFOX for 4 or 6 months. I don't remember that exactly because he also got some sort of lung infection during chemo so instead of IVs capacetabine tablets were also used. Chemo phase was really hard on him, weakness, chills, fevers, nausea. We did a PET/CT a month later in Oct 2017 and it came out all clear. He then went to get ileostomy reversed. Came back and few days later inside sutures ruptured or what but the liquid stools and gas started to pass from his external stitches. Went to OT again, blood level was barely minimum and massive weakness upon return.

In 2018, PET/CT revealed some sort of pelvic deposit 1 or 2 (they were never sure). Were suggested colonoscopy by surgeon. The biopsy came negative. We were relieved. (I should have really forced by dad for second opinion then). His bowel habits never returned to normal since ileostomy reversal. So we thought it is kinda new normal. And we avoided PET/CT tests in 2019, 2020. But CT scans were conducted every year though. He had bowel obstruction issues once or twice during 2019,20 but came back normal with OPD treatment.

In Dec 2021, main event was during december when he developed chronic bowel obstruction, Abdominal Ultrasound and CT revealed some deposits. We only went to general docs then. And they assumed it to be small bowel adhesive obstruction. His hemoglobin was nearly 14mg before admission and was admitted for 7 days. During that period his LFTs got quite bad and bilirubin also increased, yellowness was visible on face and eyes. Though it was within range upon discharge. Though his C. Reactive Proteins were always high and peaked till 282 but upon discharge were about 140.

In 2022, we did PET/CT in march. It showed Pelvic deposit size increase form 1 x 1.2 cm to 2.3 x 3.1cm (SUVmax = 7.78). There is also a lytic lesion with a soft tissue in sacrum (SUVmax = 9.7). This was the conclusion of PET/CT report and this was the only thing that docs wanted to work upon. Though there are few mild fdg uptake in palatine tonsils as well. And some unchanged non fdg avid nodes in lungs. Though this is the first time he also did a PET/CT with holding breath and the report showed a faintly fdg avid subcentimetric and bilateral lymph nodes SUVmax of 2.3 (likely inflammatory). <- This kinda worries me

We went to over old hospital and they suggested radiotherapy for treatment. But we kinda had many complications with past surgeries there despite it being a major cancer center so wanted to take second opinion they advised radiotherapy and chemotherapy. So my dad went with former one, since the doctor gave more promising feel.

My dad actually completed 25 fractions of 45 Gy to pelvic + sacrum + mesorectum in last month of May. His side effects were mainly cramps, bloating and unable to pass gas. Though it got better 3 weeks after course of treatment. His hb levels before starting were 8.1mg and had 2 units of blood transfused. Though the side effects got worse after 2nd week.

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 .

We yet have to do CEA post treatment though pre treatment it was 4.83. His current hb is 9.4mg. Serum creatinine (0.6) and sgpt sgopt are also within range.

We have never been asked by MD directly to do chemo yet. But MD is friend of my dad's best friend. To whom MD have actually told chemo can be used for precaution against other recurrence.

I just want someone to tell me if we are following the correct procedure. What questions should I need to ask my doc. Also why the doc sometimes write it as palliative then other time as complex curative. Also if I need to worry about those lymph nodes at lung with SUVmax of 2.3.
I feel so alone and pessimistic everytime with no idea what to trust.

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Peregrine
Posts: 106
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Re: Need guidance (lots of) with sacral mets and pelvic recurrence

Postby Peregrine » Sun Jun 12, 2022 1:50 am

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
Posts: 22
Joined: Sat Jun 11, 2022 4:20 am

Re: Need guidance (lots of) with sacral mets and pelvic recurrence

Postby crybaby » Sun Jun 12, 2022 3:17 am

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


I really appreciate you for reading through my post and giving a reponse. I am situated in India and we had complete treatment at the major cancer centre in our country. Actually we planned to do the treatment at a cancer hospital somewhat closer to our city. But because of dad's friend relation with MD there we opted to go there. Even in 2022, I wanted to have a third/fouth opinion but because of doctor's assurance at older hospital. He did the radiation treatment there. We will be having PET/CT scan this coming week. 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. I just hope treatment works in favor for us.

I also want to know why we were never asked for surgery. And is the soft tissue deposit something different? My dad's current diagnosis is Pelvic Soft Tissue Deposit + Lytic Lesion in sacrum involving soft tissue (From what I understand, there is like a soft tissue lesion that is touching the sacrum and it now also have a lytic lesion). Is radiation (45 Gy for 25 fractions) the correct treatment plan for this type of diagnosis.

roadrunner
Posts: 286
Joined: Sun Jan 12, 2020 8:46 pm

Re: Need guidance (lots of) with sacral mets and pelvic recurrence

Postby roadrunner » Sun Jun 12, 2022 1:28 pm

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.
7/19: Rectal cancer: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Thoracic CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear

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Peregrine
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Re: Need guidance (lots of) with sacral mets and pelvic recurrence

Postby Peregrine » Sun Jun 12, 2022 2:24 pm

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.

crybaby
Posts: 22
Joined: Sat Jun 11, 2022 4:20 am

Re: Need guidance (lots of) with sacral mets and pelvic recurrence

Postby crybaby » Sun Jun 12, 2022 8:22 pm

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.


Thanks again for the reply. Now I have a better idea on actually what is going on. Actually during first surgery 2017, my dad went under TME + LAR using brooke ileostomy as per discharge summary. No biopsy was ever done. Also I don't know why the soft lesion size in sacral size never had any mentioned size. Also the lung was never considered to be a met by either of the hospitals. This was actually the first breath hold PET/CT. My dad had few nodes on lungs mostly non-fdg avid and they all decreased in size with year.

crybaby
Posts: 22
Joined: Sat Jun 11, 2022 4:20 am

Re: Need guidance (lots of) with sacral mets and pelvic recurrence

Postby crybaby » Sun Jun 12, 2022 8:43 pm

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.


Yep you are right. The docs are actually treating for eliminating the mets as per their communication. I think we both will get better idea with the PET/CT this week.

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Peregrine
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Re: Need guidance (lots of) with sacral mets and pelvic recurrence

Postby Peregrine » Sun Jun 12, 2022 8:46 pm

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
Posts: 22
Joined: Sat Jun 11, 2022 4:20 am

Re: Need guidance (lots of) with sacral mets and pelvic recurrence

Postby crybaby » Mon Jun 13, 2022 1:03 am

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


I think I will write case history with accurate timeline.

My dad was diagnosed with well differentiated adenocarcinoma of colorectal at age of 56 on 03/30/2017. Though he was struggling with his bowel habits for atleast an year and those docs kept misdiagnosing him. It was his colonoscopy that revealed circumferential polypoidal rectal growth starting 8cm from anal verge and reaching upto 15cm and biopsy revealed well differentiated adenocarcinoma. Abdomen and Pelvis revealed apple core lesion in distal sigmoid and proximal rectum with luminal compromise.

His CEA on 04/05/2017 was 5.16 pre-surgery(despite him being a smoker then.)

On 04/10/17 he underwent TME + LAR with brooke ileostomy under GA. He then did FOLFOX for 4/6 months (I am not quite sure about time). During that period he was also put up on oral chemo instead of iv one because of some infections.
He also developed fistula leak which I am not sure was after first surgery or was after ileostomy closure.
He underwent ileostomy closure in 11/06/17 after getting clear PET/CT post chemo. After ileostomy closure, another surgery was done to fix the liquid stool leaking from his external sutures.
His overall recovery was quite slow throughout the year. And even after all this, his bowel habits were not quite normal. Docs mostly blamed the surgery for all this because he lost quite a bit of his colon now.
And yea in 2017 after chemo or somewhere during it, his CEA was quite low about 1.x something. But his CT scans started showing some changes in liver (hypodense lesions) and calcified foci in gall bladder. And some thickened perirectal mass. The CT scans are mostly same till now.
In 2018, we did PET/CT again, and it showed FDG avid soft tissue density lesions (atleast 2) along the bowel loops in pelvis larger measuring 1.2 x 1.0m with SUVmax 13.2 (i think SUVmax value is kinda wrong here). Our surgeon told us to get colonoscopy done which we did and they told us they even managed to get the sample which later came out to be negative.

Only CT scans were done during 2019-21. Dad often had slight burning sensation and pain in right pelvis which he often ignored. But he also had some minor bowel obstructions during that time cured over OPD treatment with some injections.
It was last week of Dec 2021, he had major bowel obstruction and was admitted to local hospital for about a week. Discharged in Jan 2022, blood works been not good since then.

PET/CT in March 2022 revealed, I think I will write all major highlight of report here. Since only two things were in conclusion.
    Brain parenchyma shows psychological tracer uptake.
    Mild Symmetrical uptake in bilateral palatine tonsils with faint fdg subcentimetric bilateral level Ib and II cervical nodes. (inflammatory)
    In lungs, Non FDG avid lymph nodes. but faintly fdg avid (SUVmax 2.3) subcentimetric subcarinal and bilateral hilar lymph nodes. (likely inflammatory)
    Benign cyst in segment VIII of liver but CT scan showed 2 spots less than 4.5mm.
    Mild diffuse FDG uptake in large bowel loops
Now on conclusion,
    FDG avid SUVmax 7.78 (previously 7.76 but 2018's scan showed it to be 13.2) irregular heterogeneously enhancing mass soft tissue density lesion noted in pelvic cavity abutting bowel loops measuring 2.3 x 3.1cm
    FDG avid (SUVmax 9.7) lytic lesion with soft tissue component involving sacrum.
I have no idea why there is no mention of sacral region lesion. Are there 2 lesion there (lytic and soft tissue)?

CEA pre radiation was 4.83 and hb was 8.1

Treatment Done:-
Radiation to Pelvic Recurrence Site + Mesorectum + S1 sacral vertebra with 45 Gy / 25 fractions @6 MV photons.

They initially planned it to be 3 weeks instead of 5 but with slightly higher dose but dad was quite weak to handle that as per them. They were all talking to eliminate the mets from every site though and radiation is quite effective for that as per them. The month has already passed since the treatment and my dad had Grade II lower GI toxicity and Grade I GU toxicity. And he had side effects such as constipation, gas pain, upper abdo and pelvic pain (more like burning sensation). It took 3 weeks post rads to get better. Right now it is 5th week post rad. Though now there is slight complaints of slight constipation. Gas is passing fine but there is not satisfactory stool movement. Went to MD this week with S. Creatinine 0.6 and hb of 9.4 and were suggested to get PET/CT.

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.

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Peregrine
Posts: 106
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Re: Need guidance (lots of) with sacral mets and pelvic recurrence

Postby Peregrine » Mon Jun 13, 2022 11:36 pm

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.

Thank you for your lengthy reply. It must have taken you a long time to type in all that information from past reports, and I'm sure your dad appreciates all the support you are currently giving.

I am on the road traveling right now and can only post short messages at the moment, but I will try to briefly summarize the current status here and then post a longer summary after I return.

    Your dad is now recovering from a 5-week chemo/radiation regimen that targeted 3 regions in the pelvis: (1)Pelvic Recurrence Site, (2)Mesorectum, and (3) S1 sacral vertebra.

    Your dad's medical team is assuming that this course of radiation will obliterate all of the cancer in the pelvic area with 'curative intent', but only time will tell. A new PET/CT scan might give some information on the outcome, but if the scan is done too soon it might just pick up inflammation still lingering from the treatment. Furthermore, radiation treatments continue to be active, even days or weeks after the final dose is administered, so the doctors may want to wait a while before doing the next scan.
One piece of information that seems to be missing from the file is the official categorization of the "Pelvic Recurrence Site" according to the standard Memorial Sloan Kettering classification scheme:

    Memorial Sloan-Kettering classification of local recurrences
    • Axial: recurrence at anastomotic, residual mesorectum, or perirectal soft tissue within the center of the pelvis or perineum following an abdominoperineal resection;
    • Anterior: involving the genitourinary tract;
    • Posterior: involving the sacrum and presacral fascia;
    • Lateral: involving the muscles or soft tissue of the pelvic sidewall, major iliac vessels, sacral nerve plexus, and lateral bony pelvis.
This is very important because determination of the best curative sequence is different, depending on the location and type of the presumed recurrence(s). In my opinion, this classification should have been explicitly outlined in 2018 when the pelvic masses with high SUV-uptake levels were first noticed on the PET/CT scan. Furthermore, I think that the 5-week regimen for chemo/radiation probably should have been implemented in 2018, not four years later in 2022.

There are others on this forum who have learned quite a lot about local recurrence of rectal cancer (LRRC) over the years, and maybe some of them might have some thoughts on your dad's case.
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...

That's all for now. More later when I have the time to reply.

Take care ..

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Peregrine
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Re: Need guidance (lots of) with sacral mets and pelvic recurrence

Postby Peregrine » Wed Jun 15, 2022 2:02 pm

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

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Peregrine
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Re: Need guidance (lots of) with sacral mets and pelvic recurrence

Postby Peregrine » Sat Jun 18, 2022 2:38 am

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

So, have you managed to find these two documents yet, or have you been able to get duplicate copies of them from the Central Records department of the hospital?

As I mentioned in a previous post, these documents are essential to have at hand because they contain the facts that would document your dad's risk factor profile at the beginning of the 5-year cancer journey.

You need to know his full diagnosis and full staging at the beginning of this journey in order to be able to determine what chances he had for eventual curative therapy and for you to be able to get good guidance on whether or not the collection of treatment interventions that he has had so far were the best ones available to achieve the 'curative intent' goal.

Thank you.



.

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Peregrine
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Re: Need guidance (lots of) with sacral mets and pelvic recurrence

Postby Peregrine » Mon Jun 20, 2022 7:11 am

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
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Re: Need guidance (lots of) with sacral mets and pelvic recurrence

Postby crybaby » Mon Jun 20, 2022 11:12 pm

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.


Hey I am really sorry for the late reply. I have been trying hard to be offline and just focus on my exams that are starting tomorrow. As about your previous questions. I haven't seen the surgery report in a long time and I tried searching it again but couldn't find it. Pathology report told it to be well differentiated adenocarcinoma though. I haven't seen any test that did the staging though if that's what you trying to ask.
Dad actually consulted another onco before radiation treatment. Neither of them mentioned any immunotherapy. Though he already done the PET Scan this week and we are now just waiting for report. And about these new tests were mentioned, those were never advised to us during whole treatment.

Thank You

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Peregrine
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Re: Need guidance (lots of) with sacral mets and pelvic recurrence

Postby Peregrine » Mon Jun 20, 2022 11:21 pm

crybaby wrote:...I have been trying hard to be offline and just focus on my exams that are starting tomorrow...

Good luck on your exams !!

Take care ...


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