Surgery Considerations

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Surgery Considerations

Postby juliej » Thu Jan 03, 2019 5:10 pm

lakeswim wrote:I'm on the forum today researching for my meeting with my surgeon tomorrow. Have pelvic MR and abdomen CT today!

Anyway, I saw the above comments and feel the need to respond. I am a lifelong athlete (marathon, triathlon, masters swimmer), married to a vegetarian (so, very healthy, homemade meals and very little meat eaten here - and mostly poultry and fish), and haven't eaten red meat/pork/deli meat (or fast food, for that matter) since I was a teen. My grocery cart consists of organic veggies and fish (ok, with a few snacks thrown in for my kids) while many others are filled with processed foods and alcohol.

My point? While poor nutrition and fitness may account for some cancers, it clearly does not account for all. Frankly, I do not know how I can eat any better without going vegan (and restricting myself to no fun foods EVER). And though my energy levels have flagged in recent years, I was a picture of fitness until a few years ago. There is a big increase in CRC - esp among young people - in recent years, so there must be something else at play here. (It keeps me up at night in my own case!)

I have been told I have leaky gut (by a holistic MD) on two occasions 10 and 15 years ago. When I cleared gluten out of my diet, my symptoms disappeared. I started eating gluten again about 8 years ago with no symptoms (no symptoms like I had had before and nothing else new/obvious) and have been eating without restriction since. So, in my case, my current theory is that whatever caused my leaky gut has something to do with my cancer (or long term leaky gut caused cancer).

Eating well and being fit certainly can't hurt but is no guarantee.

Like you, I was an athlete (runner and rock climber) prior to my diagnosis. I was also a vegetarian and had no family history of any kind of cancer. On the outside I looked the picture of health, so much so that I had a hard time getting a colonoscopy for my symptoms. The last thing the gastroenterologist told me before the procedure was that I didn't need to worry because he was positive it wasn't cancer. So.... You're right. Good health habits and family history don't guarantee a cancer-free life. What bothers me is how many people assume when you have colon cancer that you lived on hot dogs and processed foods and somehow "caused" your own cancer!

Previously colorectal cancer was nearly always an older person's disease (except for Lynch and inherited forms). That's why doctors find it difficult to take younger people seriously when they come in with symptoms. Fortunately, there are smart minds trying to determine what's causing the sudden increase in the number of young people being diagnosed with colorectal cancer. The stats show the problem. For example, the risk of getting colon cancer before age 50 is now twice as high, and the risk of getting rectal cancer is four times as high, for people born in 1990 as it was for those born in 1950. That's why the ACS changed the recommendation for routine colorectal cancer screenings to start at age 45. Some gastroenterologists even recommend 40. (Eighty percent of colon cancers found in young people lie in the rectum or sigmoid colon, the lower 3 feet of the large intestine, so even a sigmoidoscopy would likely catch it.)

Personally, I worry about things like BPA and other pollutants in our water supply. But something is causing the change. Hopefully, we'll find out soon. My doctors said the good part about fit patients is they are better able to handle chemotherapy and they recovery better from surgery and have less complications afterwards. So take pride in that!

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Surgery Considerations

Postby lakeswim » Sun Jan 06, 2019 8:39 pm

juliej wrote:
lakeswim wrote:I'm on the forum today researching for my meeting with my surgeon tomorrow. Have pelvic MR and abdomen CT today!

Anyway, I saw the above comments and feel the need to respond. I am a lifelong athlete (marathon, triathlon, masters swimmer), married to a vegetarian (so, very healthy, homemade meals and very little meat eaten here - and mostly poultry and fish), and haven't eaten red meat/pork/deli meat (or fast food, for that matter) since I was a teen. My grocery cart consists of organic veggies and fish (ok, with a few snacks thrown in for my kids) while many others are filled with processed foods and alcohol.

My point? While poor nutrition and fitness may account for some cancers, it clearly does not account for all. Frankly, I do not know how I can eat any better without going vegan (and restricting myself to no fun foods EVER). And though my energy levels have flagged in recent years, I was a picture of fitness until a few years ago. There is a big increase in CRC - esp among young people - in recent years, so there must be something else at play here. (It keeps me up at night in my own case!)

I have been told I have leaky gut (by a holistic MD) on two occasions 10 and 15 years ago. When I cleared gluten out of my diet, my symptoms disappeared. I started eating gluten again about 8 years ago with no symptoms (no symptoms like I had had before and nothing else new/obvious) and have been eating without restriction since. So, in my case, my current theory is that whatever caused my leaky gut has something to do with my cancer (or long term leaky gut caused cancer).

Eating well and being fit certainly can't hurt but is no guarantee.

Like you, I was an athlete (runner and rock climber) prior to my diagnosis. I was also a vegetarian and had no family history of any kind of cancer. On the outside I looked the picture of health, so much so that I had a hard time getting a colonoscopy for my symptoms. The last thing the gastroenterologist told me before the procedure was that I didn't need to worry because he was positive it wasn't cancer. So.... You're right. Good health habits and family history don't guarantee a cancer-free life. What bothers me is how many people assume when you have colon cancer that you lived on hot dogs and processed foods and somehow "caused" your own cancer!

Previously colorectal cancer was nearly always an older person's disease (except for Lynch and inherited forms). That's why doctors find it difficult to take younger people seriously when they come in with symptoms. Fortunately, there are smart minds trying to determine what's causing the sudden increase in the number of young people being diagnosed with colorectal cancer. The stats show the problem. For example, the risk of getting colon cancer before age 50 is now twice as high, and the risk of getting rectal cancer is four times as high, for people born in 1990 as it was for those born in 1950. That's why the ACS changed the recommendation for routine colorectal cancer screenings to start at age 45. Some gastroenterologists even recommend 40. (Eighty percent of colon cancers found in young people lie in the rectum or sigmoid colon, the lower 3 feet of the large intestine, so even a sigmoidoscopy would likely catch it.)

Personally, I worry about things like BPA and other pollutants in our water supply. But something is causing the change. Hopefully, we'll find out soon. My doctors said the good part about fit patients is they are better able to handle chemotherapy and they recovery better from surgery and have less complications afterwards. So take pride in that!

Juliej



JulieJ - congrats on your NED! That is tremendous! And thanks for your comments. I was told time and time again I had a hemorrhoid, which set me back at least 8 months from my first colonoscopy (and diagnosis). I am curious how you are doing after your LAR? I will find out Friday whether I have WnW as an option or whether surgery is my only option. I am curious about peoples' experience with LAR Syndrome and how it has affected your life. You are years out now. How are you doing and how has it affected your (previously active) life? Thank you.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Surgery Considerations

Postby juliej » Tue Jan 08, 2019 7:21 pm

lakeswim wrote:JulieJ - congrats on your NED! That is tremendous! And thanks for your comments. I was told time and time again I had a hemorrhoid, which set me back at least 8 months from my first colonoscopy (and diagnosis). I am curious how you are doing after your LAR? I will find out Friday whether I have WnW as an option or whether surgery is my only option. I am curious about peoples' experience with LAR Syndrome and how it has affected your life. You are years out now. How are you doing and how has it affected your (previously active) life? Thank you.

It definitely gets easier the more years go by. The first few months are very challenging -- learning what you can eat without upsetting your system takes time. Gradually, though, you tolerate more foods until you reach the holy grail - popcorn! :D :D :D

As far as running, hiking, rock climbing, and other activities, I do whatever I feel like doing (which is a lot!). However, I do keep a few Imodium in my purse, backpack, or pockets and take them if things seem dicey (like if I eat food that's too spicy or have an intensely chocolate dessert).

The treatment strategy for low rectal cancer has been evolving over the years: extended surgery at the beginning, then neoadjuvant treatment followed by standard surgery, and more recently neoadjuvant chemo-radiation treatment and rectum-sparing strategies. Hence, wait-and-watch policies are becoming more and more common. I hope you're one of them! I'm assuming you'll have a sigmoidoscopy every 3 months for the first year then?

Best of luck to you on Friday! I'll be sending good thoughts your way!

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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O Stoma Mia
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Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Surgery Considerations

Postby O Stoma Mia » Wed Jan 09, 2019 11:29 am

lakeswim -- For your meeting on Friday there is one thing that I would suggest, and that is to ask for the specific details for all of the procedures that are planned to be executed during your surgery. This could be done by asking for the list of the official CPT codes for the series of procedures. The surgeon will eventually have to have this list of codes for billing and insurance purposes, so he cannot simply tell you that he doesn't know anything about this or that he doesn't have this information.

In the case of a colorectal resection followed by an anastomosis and also by an ileostomy, there are several approaches to this. The document listed below shows the main options and the main categories that distinguish between the different options: The main categories of distinction are:

    A. The approach, i.e., (open/transanal/perineal vs lap/robotic)
    B. The anatomical locations of the resection/stapling lines (proximal/distal)
    C. The creation of the anastomosis (and type of anastomosis)
    D. The creation of the ileostomy

Colectomy Coding Tips
http://msqc.org/sites/default/files/downloads/Colectomy%20CPT%20with%20pictures.pdf

In the document above, they give the CPT codes for each of the main combinations of procedure. In your discussion, I think you would want to receive very clear indications of what the surgeon intends to do. Keep in mind that each variation in procedure may have a different CPT procedure code. It is the collection of CPT codes that will officially define what will be done during the surgery.

For each of the planned procedures/sub-procedures, you would want to know exactly what they are planning to do. For example, in the creation of the anastomosis, you would want to know what kind of stapler they intend to use and why this particular model is the best one to use for tissue that is fragile and that has been subject to irradiation. (I think there are some models of staplers that would cause great damage to fragile, irradiated tissue and may not be able to insure a leak-proof anastomosis, for example)

Also, for each of the alternatives considered, be sure to discuss the relative advantages/disadvantages (benefits/risks) of each. (There are some procedures that are relatively easy for the surgeon to do but are likely to cause undesired or permanent collateral damage to the patient.)

If the surgeon is also considering doing an ovarian resection (oophorectomy) or a uterine resection (hysterectomy) at the same time, then there would be even more CPT codes involved. It would be good if you could get an exhaustive list of all the procedures they are planning to do so that you have a good factual basis for making an informed decision.

There are also CPT codes for types of General and Local Anaesthesia that will have to be addressed:

Anesthesiology Related CPT Codes
http://www.anesthesiallc.com/images/brochures/Anesthesiology-Related-CPT-Codes.pdf

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Surgery Considerations

Postby lakeswim » Wed Jan 09, 2019 7:59 pm

O Stoma Mia - thank you. As usual, you have provided very good points to consider. Should be interesting how she responds to this line of questioning. TBT, she intimidates me a bit - when I want to get down to details, that is. I want more - and detailed - info and she just wants me to trust her and her many years of experience. (My first experience with a surgeon.)

My sigmoidoscopy on Monday was CLEAR! TUMOR is completely gone! That said, at last week's appt, she/surgeon described my MRI report language as "mushy" and I still have not seen the report myself (though surgeon read part of it to me and it was so very vague). Given my tumor already decreased "significantly" after just chemo (even before chemoradiation), I am eager to see what MRI shows. She mentioned something to my husband on Monday after the procedure about my uterine fibroid, so I guess that "may be" part of considerations somehow.

Tumor board meets this Friday to make recommendations (I'm hopeful W&W is an option to consider). Surgeon said it's possible the board may request another MRI (though I hope not, if only to save my hearing.... because I truly believe my tinnitus has gotten worse after having 3 of these this past year. I may buy those pricey earphones if/when I need to do any more MRIs).

I meet my surgeon again next Tuesday to discuss board's recommendations. (She warned me that if W&W is an option - there will be many discussions - with her and with my oncologist.) So, I won't know ahead of time what the exact discussion points will be and what I should have prepared. (Covering both W&W and specific surgical considerations would be a lot, but I don't even know if W&W will be an option - so I guess I need to be prepared to discuss all of it.) But this is very good info to add to my discussion list for this meeting or future ones before surgery (if I have to or choose to go that way).

She/surgeon did already say the surgery could be robotic OR open and said it would be up to me which I choose. I was surprised to hear it's up to me - but we weren't discussing the surgery at length that day so the topic was not pursued. (She's apparently been doing this a very long time.)

And after my sigmoidoscopy, she did mention to my husband (and to me, but I don't recall because I was still feeling sedation) that, after seeing exactly where my tumor site is/was, I can worry less about LAR than we previously discussed. (That doesn't put me at ease, given LARS runs a gamut and what she considers "less worrisome" may not be less worrisome to me).

Thanks again, O Stoma Mia. (ps. Hope you have many more travels planned!)
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Surgery Considerations

Postby lakeswim » Wed Jan 09, 2019 8:11 pm

.....one more thing, O Stoma Mia.... the most recent CT scan showed new small spots on my liver. (There was one spot they found during staging last May but after biopsy, it was found to be benign.) My surgeon insists that these new small spots are "Nothing!" She said this a few times. I don't know how she can be so sure? They are new, after all. Something else to add to the list...
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Surgery Considerations

Postby susie0915 » Thu Jan 10, 2019 9:43 am

This is great news that your tumor is gone. My sigmoidoscopy also showed no tumor after finishing chemo/radiation, only scar tissue. I was never offered wait and watch but was told I may not need to do chemo after depending on pathology after surgery. Pathology showed clear margins, no lymph nodes, but minimal residual cancer cells. So I did do 6 rounds of chemo for clean up but was considered cancer free after surgery. I did experience LARS after reversal of my ileostomy which was 5 weeks after my resection because I had a small bowel blockage and had to have surgery to remove scar tissue, so doing chemo without an ileo was difficult but made it through. I ended up going to a bowel control clinic at the university of Michigan to try and help my LARS. My tumor was 5 cm from anal verge so don't have much rectum left. The more rectum remaining the less symptoms of LARS. The bowel control clinic was so helpful. My issue was frequent small stools. I never had diarrhea or problems with control, just could be in the bathroom alot. The GI at the clinic did a couple tests, referred my to dietician and pelvic floor physical therapy. Both were very helpful. He recommended taking miralax or tap water enemas everyday to evacuate at one time. I chose to do the enemas which have given me freedom from the bathroom for 24 hours until I do again the next morning. Only takes about 30 minutes from start to finish. Since your tumor was higher up in the rectum, there is a good chance you will not experience many of the symptoms as others with lower tumors. But many do well controlling with diet, fiber, and Imodium. Just know there are solutions to LARS if you do end up having surgery. It does take some time to figure out what works best for you. Good luck with your upcoming appointments.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Indistinct fat plane

Postby lakeswim » Mon Jan 14, 2019 11:48 am

So, I was on a rollercoaster last week. Up and now down. (Note: I realize there's plenty of good news in here and I hate to sound greedy. I just made the mistake of picturing myself this next year doing Watch & Wait. And I feel so good right now! Having surgery and anticipating LARS for the rest of my life is devastating to me.)

After my sigmoidoscopy early last week, my surgeon told me the tumor was gone (she had done a digital rectal exam previous week and said same). She even used the "c" word (cured) after the flex sig. Watch and wait was brought up again - but she mentioned in passing that even though MRI showed tumor was gone - the MRI was "mushy". But the C word was exciting. I was thrilled.

Data went to tumor board.

She called end of last week and said that the "fat plane" between my rectum and uterus - which has been "indistinct" since my diagnosis - is still indistinct. And due to *just that one piece of data*, they can't consider me a complete response. She said she'd offer me another MRI in 2 weeks to see if anything changes but she doesn't expect it to change and we should assume surgery is in my near future.

I did some research and found a study (small and old, but still) that showed a majority of women have no distinct fat plane between their uterus and rectum. My question is - if the indistinct fat plane is the ONLY thing holding my cCR, then we need to make sure our assumptions are correct. Could it be that this is the fat plane I've always had (I believe I was told - back in my baby making days - that I had a tilted uterus - and it makes sense I'd have less of a fat plane if my uterus is tilted toward my rectum - right?)
https://www.ncbi.nlm.nih.gov/pubmed/2088583
(Normal variations of pelvic fat distribution implications on CT staging of pelvic tumors.)

Does anyone have any thoughts on this situation? I trust my team and that they know what they're doing but I also want to question the facts here and make sure the assumptions are correct.

Thanks.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Surgery Considerations

Postby lakeswim » Mon Jan 14, 2019 11:52 am

.....my husband is wondering whether a different scan (PET scan?) might show more?
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

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O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Surgery Considerations

Postby O Stoma Mia » Mon Jan 14, 2019 12:57 pm

lakeswim wrote:... I meet my surgeon again next Tuesday to discuss board's recommendations...

So, it looks to me like the tumor board has already met, and now it is almost Tuesday and time to meet with the surgeon.

I'm sorry you are having to go through all of this, and I wish you the best of luck in your session with the surgeon.

Is your husband going to be able to be there to take notes and assist you?

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Surgery Considerations

Postby lakeswim » Mon Jan 14, 2019 1:11 pm

O Stoma Mia wrote:
lakeswim wrote:... I meet my surgeon again next Tuesday to discuss board's recommendations...

So, it looks to me like the tumor board has already met, and now it is almost Tuesday and time to meet with the surgeon.

I'm sorry you are having to go through all of this, and I wish you the best of luck in your session with the surgeon.

Is your husband going to be able to be there to take notes and assist you?


Not sure we are meeting with her since she called me after the board meeting. Appt still on calendar but she mentioned cancelling it. I meet with Onc on Thursday. Still hoping for a chance - or at least some understanding/clarity,
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Surgery Considerations

Postby lakeswim » Tue Jan 15, 2019 10:25 am

O Stoma Mia wrote:
lakeswim wrote:... I meet my surgeon again next Tuesday to discuss board's recommendations...

So, it looks to me like the tumor board has already met, and now it is almost Tuesday and time to meet with the surgeon.

I'm sorry you are having to go through all of this, and I wish you the best of luck in your session with the surgeon.

Is your husband going to be able to be there to take notes and assist you?



Looks like we are still meeting with surgeon today, O Stoma Mia. And, yes, husband coming along.

Question: What does a PET Scan do? How is it different than MR/CT and would it be helpful in answering questions about my "indistinct fat plane"?

Thank you!
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Surgery Considerations

Postby O Stoma Mia » Tue Jan 15, 2019 3:18 pm

lakeswim wrote:...
Looks like we are still meeting with surgeon today, O Stoma Mia. And, yes, husband coming along.

Question: What does a PET Scan do? How is it different than MR/CT and would it be helpful in answering questions about my "indistinct fat plane"?

Thank you!

This reply may be too late for your meeting, but I will send it anyway.

A PET scan is actually a PET-CT scan. It is a combination of a CT scan (which outlines the bodily structures, such as the organs, vessels, bones, tumors,etc.) and a PET scan (which lights up any of these structures, such as a tumors or metastases, that are absorbing an unusual amount of the injected radioactive glucose).

An MRI gives very detailed 3-D images of the body structures, showing densities, shapes, homogeneity of regions, etc. It is particularly useful in identifying irregularities in the structures and helping localize where problems may be.

The PET component is often useful in distinguishing metastatic tissue from benign tissue, because most of the time the benign tissues will not absorb radioactive glucose and will not light up at all. However, in some cases, benign tissues (e.g., bladder) will glow very brightly especially if a lot of the radioactive glucose has settled in that area.

The literature shows that "brown adipose fat" is one type of tissue that can glow very brightly, even though it is benign. This often causes confusion and misinterpretation in PET scans.

I don't know how relevant this is to your case because I don 't know what kind of fat is involved in your "indistinct fat plane".

https://www.ajronline.org/doi/abs/10.2214/AJR.08.2081

http://radiologyassistant.nl/en/p56195b237699d/rectal-cancer-mr-staging-20.html


That's about all I know.

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O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Surgery Considerations

Postby O Stoma Mia » Sat Jan 19, 2019 3:25 pm

lakeswim -

With your surgery scheduled for sometime in the February time-frame, you could now take some time to update your signature and provide the missing details.

A suggested signature is given below. Keep in mind that the standard signature block is limited to 512 characters, so you might have to abbreviate or trim the text down a bit. Alternatively, if you want to display all the details of a long history, you could put your long history in a separate post elsewhere and then simply put a link to that post in your signature block.

    50 - F
    Mom to 2 teens
    RC - DX 3/18 at age 49
    Adenocarcinoma, grade G??, 10-11 cm frm anal verge ("large")
    T4bN0M0 - (Re-staged to Stage 3a by onc)
    Baseline CEA = ???
    MSI status = ???
    Start of TNT, May '18
    FOLFOX May -Sept '18 (8 rounds total chemo - but stopped Oxaly after severe reactions in Round 5 or 6)
    Capecetabine + Radiation - 28 sessions (Oct - Nov 2018) (Stopped Cap after 20 days due to intolerance)
    End of TNT, Nov '18
    Jan '19 - MRI and Flex Sig shows tumor "completely gone"
    Indistinct fat plane btwn uterus & rectum - the one thing in the way of a cCR - surgery next :(
    Pre-surgery baseline CEA=???
    Surgery planned, Feb '19 (rectal tumor&local lymph node resection; hysterectomy?, ileostomy)
    Start of 5-year followup period.
    Ileostomy reversal planned mm/dd/2019
    Expected onset of LARS syndrome phase mm/dd/2019

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Surgery Considerations

Postby lakeswim » Sun Jan 20, 2019 5:26 pm

O Stoma Mia wrote:lakeswim -

With your surgery scheduled for sometime in the February time-frame, you could now take some time to update your signature and provide the missing details.

A suggested signature is given below. Keep in mind that the standard signature block is limited to 512 characters, so you might have to abbreviate or trim the text down a bit. Alternatively, if you want to display all the details of a long history, you could put your long history in a separate post elsewhere and then simply put a link to that post in your signature block.

    50 - F
    Mom to 2 teens
    RC - DX 3/18 at age 49
    Adenocarcinoma, grade G??, 10-11 cm frm anal verge ("large")
    T4bN0M0 - (Re-staged to Stage 3a by onc)
    Baseline CEA = ???
    MSI status = ???
    Start of TNT, May '18
    FOLFOX May -Sept '18 (8 rounds total chemo - but stopped Oxaly after severe reactions in Round 5 or 6)
    Capecetabine + Radiation - 28 sessions (Oct - Nov 2018) (Stopped Cap after 20 days due to intolerance)
    End of TNT, Nov '18
    Jan '19 - MRI and Flex Sig shows tumor "completely gone"
    Indistinct fat plane btwn uterus & rectum - the one thing in the way of a cCR - surgery next :(
    Pre-surgery baseline CEA=???
    Surgery planned, Feb '19 (rectal tumor&local lymph node resection; hysterectomy?, ileostomy)
    Start of 5-year followup period.
    Ileostomy reversal planned mm/dd/2019
    Expected onset of LARS syndrome phase mm/dd/2019


Hi, O Stoma Mia. I will edit my signature. Apologies for the length. Thanks for bringing this to my attention.

My team and I agreed that we will do another MRI in mid Feb to see if another 4 weeks of radiation working can positively affect the indisinct fat plane. (Doctors don’t believe it will but worth a try. They suggested this plan.)

It was also suggested that I see someone at MSK — really, I believe, to confirm the situation so I am most comfortable moving forward.

My surgeon is former MSK so perhaps I should get another opinion elsewhere (but nobody else on East Coast really advocates W&W - so I guess MSK is it). I’m planning to get the next MRI @ MSK too, given the MRI read is “unclear” yet apparently has so much bearing on the tumor board’s decision.

So much positive news from surgeon prior to tumor board! Flex Sig was all clear (no tumor! my “big” tumor was gone!) and the C word (“cured”) was thrown around a few times too right after Flex Sig. I guess I began imagining myself on W&W. I was premature.

If next MRI remains same (and I think I have to assume it will - if only to avoid the crushing disappointment of last week), surgery will be 2 weeks after. I will update surgery date once I know it...
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*


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