Next steps after chemo: reversal, supplements

Please feel free to read, share your thoughts, your stories and connect with others!
Sunnycd
Posts: 61
Joined: Fri Feb 26, 2021 10:36 am

Next steps after chemo: reversal, supplements

Postby Sunnycd » Sat May 15, 2021 11:34 am

I still have one round of Xelox left and tentatively my last day of chemo is June 11, 2021. Fingers crossed. During my chemo I had bad HFS, but by following everyone’s input from this forum, it got better and was able to resume chemo. In this last round, I had very very bad neuropathy on the left arm, where I got the infusion. Again, after researching here, and on the net, it was tolerable and symptoms passed after a week (bio freeze helps!!) I am determined not to postpone my last round (my son’s high school graduation, college drop off, etc is coming up, mom, who is already fragile after my dad’s passing is coming and unaware her youngest has colon cancer). I am trying to hang on to my last threads of hair less out of vanity but because I do not want to look sick as I have not shared this w too many people. Sooo, my focus now is planning after chemo.

- In reading this forum, I am going to put a survivorship plan. I will ask my oncologist at MSK if they have such counselor, otherwise I will put one together. At a minimum, I will create a list of doctors because i really didn’t go to any doctors thinking I was healthy, except for lupus. I am also planning to look at the follow up plan, as I am reading studies that says intensive surveillance is not necessary and others say that intensive surveillance for stage 2 improved survival, with 51% being able to have recurrence removed vs 29% who underwent simple screening. My onc seems on the side of less is more to manage patient’s anxiety. I love her, but she is also very opposed to signatera, and while I understand, I don’t agree. I can deal with my anxiety, I can’t deal with uncertainty and wait and see.
- Lots of research on colostomy reversal. I need to meet w my surgeon to go over it, and understand my situation better because I really didn’t talk to her after the one follow up apt after surgery. She is a colorectal surgeon, but I wonder if I should ask my msk oncologist to refer me to someone and get 2 perspectives. I understand the wide range of experiences and after being depressed and worried about the worst outcomes, at this point, I want to focus on everything I can control and do for a successful outcome. I am making a list, checking it twice and searching this forum. If anyone has any pointers, it would be greatly appreciated. Specifically, I am focusing on this:
1. Doing lots of exercises, physical activity before the surgery. After surgery, lots of walking and meditation. Insight Timer app is a must in case you are interested.
2. Specific diet several weeks prior to? I know what I should eat or not eat after, but not sure before. Prebiotic, probiotic, supplements?
3. Got bidet, wet wipes, Imodium, miralax, metamucil, depends, squirt bottle, ointment calmoseptine

What else am I missing?
Last edited by Sunnycd on Wed Sep 08, 2021 10:18 am, edited 1 time in total.
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

User avatar
Green Tea
Posts: 421
Joined: Mon Oct 24, 2016 10:48 am

Re: Next steps after chemotherapy

Postby Green Tea » Sat May 15, 2021 3:45 pm

In February 2021, Sunnycd wrote:I was supposed to have my colostomy reversed “6 weeks” after the surgery. If I have the chemo, it will probably be more like a year or so after surgery. I know that the sooner I have it reversed, the less side effects from it I will have (incontinence, etc). Besides, I CANNOT bear having this bag, I have painful skin issues, and bleeding and sometimes, I’d rather spend hours in the bathroom to avoid the inevitable “pancaking”...

In March 2021, Sunnycd wrote:... I also asked about my colostomy reversal, which I plan on doing as soon as I can. After my previous experience, I almost feel that I wouldn’t have needed it had I been operated by someone at MSK. She said she could give me a name, but for reversals, I’m better off w the original because they know my physiology already. I agree with her. My surgeon seemed pretty good, though since it was an emergency surgery, I only saw her briefly when she was checking on me, and later to get my pathology report.

In May 2021, Sunnycd wrote:... Lots of research on colostomy reversal. I need to meet w my surgeon to go over it, and understand my situation better because I really didn’t talk to her after the one follow up apt after surgery. She is a colorectal surgeon, but I wonder if I should ask my msk oncologist to refer me to someone and get 2 perspectives. I understand the wide range of experiences and after being depressed and worried about the worst outcomes, at this point, I want to focus on everything I can control and do for a successful outcome. I am making a list, checking it twice and searching this forum. If anyone has any pointers, it would be greatly appreciated. Specifically, I am focusing on this:
1. Doing lots of exercises, physical activity before the surgery. After surgery, lots of walking and meditation. Insight Timer app is a must in case you are interested.
2. Specific diet several weeks prior to? I know what I should eat or not eat after, but not sure before. Prebiotic, probiotic, supplements?
3. Got bidet, wet wipes, Imodium, miralax, metamucil, depends, squirt bottle, ointment calmoseptine

What else am I missing?

Hi Sunnycd,

Thanks for providing the update. I see that you are now concerned mainly about your reversal, so I'll focus just on that topic for now.

Here are my thoughts, and also a few questions. If your chemo finishes in mid June, then the reversal would be done about 6 weeks or so after that, i.e., around mid or late July at the earliest.

They need to allow a month or so interval between the end of chemo and the reversal surgery in order to allow the body to recover from the chemo phase. When they are ready to consider the reversal, there are several things that need to be done in preparation. First they need to do an "anastomosis patency test" and then a "leak test" to make sure that the anastomosis junction in your bowel has healed well and is ready to handle stool on a regular basis. This procedure is described here:

Anastomosis latency test and leak test
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53593&p=426107#p426107

If these tests are successful, then they will book the operating room for a reversal surgery on another day.

The reversal surgery itself is not a major operation -- unless the patient has developed a parastomal hernia in the mean time that needs to be repaired. (A parastomal hernia is when a big cone-shaped bulge appears around the stoma, that indicates that a hernia has developed in the muscles underlying the stoma. If this is the case, then the surgery is more complex because it would involve both a hernia repair operation and the ileostomy reversal operation at the same time.)

I would imagine that it would be OK to have the reversal surgery done by the original surgeon, because she would know if she used any special surgical technique to set up the ileostomy in the first place. However, since the reversal operation wouldn't be done until July anyway, you have plenty of time to get a second opinion from a different surgeon from another hospital.

Since your tumor was in the sigmoid colon area, not in the rectum itself, it would seem that the anastomosis junction might have been made in the upper rectum. If that were the case, and if the surgeon followed good procedure in performing the surgery, then there should not be a lot of post-reversal bowel problems for you. This is because a surgery confined to the upper rectum and the recto-sigmoid junction area probably would not have damaged or removed any of the structures (muscles, nerves, blood vessels, etc.) in the mid or lower rectum that are so critical to bowel control. However, this is only a speculation on my part. It all depends on what the surgeon actually did while performing the emergency surgery, and this is what is not so clear.

There are still some things about the emergency surgery that need to be clarified, in my opinion. For example:

  • Why was this an emergency surgery? Was there a verified blockage? Was there a perforation?
  • If this was a T4a tumor, then where was the tumor intruding? In which direction? Close to which other organ ?
  • What kind of surgery was actually done? Sigmoidectomy? Left hemi-colectomy? Mesocolonic excision?
  • What type of surgical approach was used? Laparoscopic surgery? Robotic surgery? Open surgery?
  • At what height in the rectum was the anastomosis junction made? Upper rectum? Mid-rectum? Lower rectum?
  • Do you have any CT scans with contrast, or any MRIs that would show where, exactly, the anastomosis junction was placed?
  • Why did the surgeon install an ileostomy when the primary tumor was in the sigmoid colon, not in the rectum?
I guess it's the latter question that is so puzzling to me. In your surgeon's online profile it is mentioned that she has "expertise in colostomy avoidance." But if that were the case, then why did she set up an ileostomy for you when the tumor was far away from the anal verge? This is a bit puzzling to me. Maybe this is something you could bring up with the surgeon the next time you talk with her.

Meanwhile, just try to concentrate on finishing your CAPOX regimen by mid June. Take care, and keep safe !

Sunnycd
Posts: 61
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Sat May 15, 2021 11:38 pm

Green Tea wrote:There are still some things about the emergency surgery that need to be clarified, in my opinion. For example:

  • Why was this an emergency surgery? Was there a verified blockage? Was there a perforation?
  • If this was a T4a tumor, then where was the tumor intruding? In which direction? Close to which other organ ?
  • What kind of surgery was actually done? Sigmoidectomy? Left hemi-colectomy? Mesocolonic excision?
  • What type of surgical approach was used? Laparoscopic surgery? Robotic surgery? Open surgery?
  • At what height in the rectum was the anastomosis junction made? Upper rectum? Mid-rectum? Lower rectum?
  • Do you have any CT scans with contrast, or any MRIs that would show where, exactly, the anastomosis junction was placed?
  • Why did the surgeon install an ileostomy when the primary tumor was in the sigmoid colon, not in the rectum?
I guess it's the latter question that is so puzzling to me. In your surgeon's online profile it is mentioned that she has "expertise in colostomy avoidance." But if that were the case, then why did she set up an ileostomy for you when the tumor was far away from the anal verge? This is a bit puzzling to me. Maybe this is something you could bring up with the surgeon the next time you talk with her.

Meanwhile, just try to concentrate on finishing your CAPOX regimen by mid June. Take care, and keep safe !


Thanks, Greentea! Yes, I am fully focused on finishing my CAPOX, and maintenance/surveillance plan afterwards. I also want to be more proactive this time and take charge of any future procedures I might need, which is most likely the reversal at this point. I read and reread the report of operation, but can’t quite answer your questions. And during my meeting, I really didn’t know what to ask because I was still in shock and going through the motions. The questions you raised are now in my notes, so that I can ask my surgeon.

Here is what I can answer from the report:
- I had a complete large bowel obstruction, sigmoid colon mass. The surgery report doesn’t mention a perforation, but the pathology report states Macroscopic Tumor Perforation: Present

- procedures performed were 1)exploratory laparotomy, 2)sigmoid resection w end colostomy; 3)appendectomy; 4) en block small bowel resection; 5) splenic flexors takedown; 6) right salpingectomy; 7) Omentectomy

- there is no mention as to relative location to the rectum, but it states that the mass was appreciated in the mid sigmoid colon, and there appeared to be two loops of small bowel that were densely adherent to the colon itself and the sigmoid colon was stuck down into the pelvis to the bladder and right adnexa. I don’t know how much of my colon was taken either, though the tumor was 4cm.
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

User avatar
Green Tea
Posts: 421
Joined: Mon Oct 24, 2016 10:48 am

Re: Next steps after chemotherapy

Postby Green Tea » Sun May 16, 2021 12:43 am

Thank you for providing all of the details about your surgery. This helps clarify a few things, but it also shows how complicated your surgery was.

You did in fact have a colostomy (not a loop ileostomy as I had originally thought), and it is what they call an "end colostomy". There is a big difference between the two:

https://www.medicinenet.com/is_a_loop_colostomy_permanent/article.htm#what_is_the_difference_between_an_end_colostomy_and_a_loop_colostomy

I am not very familiar with your type of "end colostomy", so I will have to do some more research before I can make sense out of your surgery. Apparently it is possible to reverse an end colostomy, but it is a more difficult operation than a simple loop ileostomy reversal.

It is still not clear to me what the surgeon actually removed during the surgery. Apparently she removed your appendix, but she also removed your sigmoid colon as well as your right Fallopian tube. But the appendix is on the right (proximal) end of the colon while the sigmoid colon is towards the left (distal) end of the colon. Then some part of the small intestine was apparently removed, too. So it's all very confusing to me. I'm going to try to find some other examples on the internet of surgeries that are this complex. Right now I don't understand the situation well enough to come to any firm conclusion, and some of the statements I made in my previous post are not quite relevant now. Please ignore my earlier May 15 post for now, because it was based on the erroneous assumption that you have a reversible ileostomy. I will post an update later after I have done some more research on end colostomies.

So, maybe in fact it would be a good idea for you to have a second opinion done by a surgeon from a different hospital who could give a detailed interpretation of your surgery report and put everything into proper perspective.

For now, I have a few more questions to ask:
  • How long did your surgery last? How many hours?
  • How long did you have to stay in the hospital after the surgery before they discharged you?
  • Did you have any difficulties during the recovery period, for example wound healing problems or wound infections?
  • Once you were discharged to go home did you ever have to be re-admitted to the hospital to take care of any post-surgery problems that developed?
  • Where is your colostomy located? Left side of abdomen or right side of abdomen?
  • How many scars from your surgery? How long was the longest one, and where was it located? Was it horizontal or vertical?
Thank you in advance for any additional information that you can provide.

Sunnycd
Posts: 61
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Sun May 16, 2021 11:02 am

Green Tea wrote:I am not very familiar with your type of "end colostomy", so I will have to do some more research before I can make sense out of your surgery. Apparently it is possible to reverse an end colostomy, but it is a more difficult operation than a simple loop ileostomy reversal.

For now, I have a few more questions to ask:
  • How long did your surgery last? How many hours?
  • How long did you have to stay in the hospital after the surgery before they discharged you?
  • Did you have any difficulties during the recovery period, for example wound healing problems or wound infections?
  • Once you were discharged to go home did you ever have to be re-admitted to the hospital to take care of any post-surgery problems that developed?
  • Where is your colostomy located? Left side of abdomen or right side of abdomen?
  • How many scars from your surgery? How long was the longest one, and where was it located? Was it horizontal or vertical?
Thank you in advance for any additional information that you can provide.


I know that she seemed adamant that I could get a reversal within 6 weeks, even when I doubted it. Then when it was confirmed that it was cancer, she said “we will wait for the oncologist’s plan and schedule a reversal soon after.” There was no question or hesitation on her part about it, which seems odd given what I am now learning about end colostomy vs.loop colostomy. Seems end colostomy is more with the intent of being permanent?

Regarding your questions:
- no one told me how long the operation lasted and there are no records of the length that I can see;
- I had the surgery on 01/20, was discharged on 1/27; I could have been discharged on the 01/23, but I wanted to stay over the weekend because I was afraid of going home. On Monday, my surgeon stopped by and saw I was very bloated and kept me 2 extra days for antibiotics and laxatives. On the day of discharge, my surgeon said not to exercise for 6 weeks, but walk a lot, drink plenty of fluids and no dietary restrictions. I remember being surprised and asked, I can eat anything, no restrictions? It was a definite no restrictions as long as it is healthy and nutritious (remember, I had done no research, was totally ignorant and just followed doctors orders)
- no healing or infection issues after discharge, except that I had an obstruction 10 days later that landed me in ER with tubes up my nose to throat and severe nausea. Started research on food to eat with colostomy determined never to relive this experience
- colostomy on the left side
- it was a midline laparotomy, vertically right above my pubic area all the way up past my belly button. It’s a pretty butchy and significant scar, punctuated with lots of staple mark scars.

I am starting to wonder about the care in this particular hospital...had I stayed there for my cancer treatment instead of getting a second opinion from MSK, I would have been on a 6 month chemo vs 3 month. Though I was planning to have the same surgeon for reversal, the more I recall through the haziness of the post surgery days, shock of the diagnosis, etc, I will definitely look for second opinions.

Any recommendations for an excellent colorectal surgeon in NJ, greatly appreciated.
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

catstaff
Posts: 127
Joined: Wed Mar 03, 2021 11:37 am

Re: Next steps after chemotherapy

Postby catstaff » Sun May 16, 2021 4:34 pm

Please note, I am *not* a surgeon, but I do know that colostomies are fairly common for emergency surgeries with obstruction and/or perforation, presumably due to trauma to the colon. Not being a surgeon I cannot say why an end colostomy was chosen. If the rest of it wasn't removed they are reversible, but since the surgeon has to fish around for the disconnected end, it is a more complicated surgery than reversing a loop colostomy and may have to be an open as opposed to a laparoscopic procedure. There is something called a "double barrel" colostomy in which both ends are brought to the abdominal wall but I assume they'd have said so and its appearance may be obvious.

As to the appendix, I believe they must just routinely remove that now while they're in there, perhaps especially if it's an open surgery. My DH had an appendectomy during his surgery and it had nothing to do with the cancer.

My DH has never had any dietary restrictions and has had a colostomy for nearly a year and a half now (he had a different loop colostomy before the main surgery due to partial obstruction) and so far, knock wood, has never had a problem with food or obstruction. So it's not as likely as with an ileostomy--the diameter of the colon is much larger than that of the small intestine--though obviously not impossible.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

User avatar
Green Tea
Posts: 421
Joined: Mon Oct 24, 2016 10:48 am

Re: Next steps after chemotherapy

Postby Green Tea » Sun May 16, 2021 8:24 pm

      References for "End Colostomy"
  • Hartmann's Procedure with an End Colostomy

    "This operation was first described by Henri Hartmann, a French surgeon, in 1921.  It is a common emergency operation and is used when the surgeon does not want to rejoin the bowel.  Similarly to a left hemicolectomy or anterior resection, the pathology is in the descending or sigmoid colon or rectum (shown as red in diagram below).  The pathology is excised but then in this case the surgeon decides that they do not want to make an anastomosis usually because there is peritoneal contamination or the patient is particularly sick and there is a risk that the blood supply to any anastomosis would be compromised and unsafe.  Therefore the surgeon closes the distal resection margin (bold straight line at top of rectum below) leaving a rectal stump (see diagram below) and they bring out the proximal resection margin (upper bold straight line in diagram below) through the anterior abdominal wall to make an end colostomy (blue oval in diagram below).  If the patient recovers from this operation then there is a possibilty that they can have their colostomy rejoined on to their rectal stump at a later date and this is called Reversal of Hartmann's operation.  Reversal of Hartmann's procedure can be carried out in the open fashion via a large midline abdominal incision or in the modern laparoscopic fashion via small keyhole incisions."

    "To recap a Hartmann's operation always has a rectal stump made and it always has an end colostomy formation."

    Reference: http://www.sussexsurgery.com/trainee-info/medical-students/medical-education-articles/common-colorectal-operations

    Diagram of Hartmann's Procedure with an End Colostomy

    .
  • Hartmann's operation
    "Hartmann's operation or Hartmann's procedure is the surgical resection of the rectosigmoid colon with closure of the anorectal stump and formation of an end colostomy. It was used to treat colon cancer or inflammation (proctosigmoiditis, proctitis, diverticulitis, etc.). Currently, its use is limited to emergency surgery when immediate anastomosis is not possible, or more rarely it is used palliatively in patients with colorectal tumours."

    Reference:
    https://en.m.wikipedia.org/wiki/Hartmann%27s_operation

    Image
    Diagram of Hartmann's Operation on the Sigma Colon

    .

Sunnycd
Posts: 61
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Mon May 17, 2021 6:04 am

I am not gonna lie, I didn’t even know there were two types of colostomy and that I got the one that makes he reversal even trickier than normal. Once I knew the difference, I have to admit that I spent the weekend sad and angry and anxious. But it’s Monday, and I will shake this off, get up and proceed to get strong (I am doing kegels and I can feel my muscles down there are actually stronger than it has ever been!

I plan on calling my surgeon and make an appointment ASAP. I have questions! Any suggestions on what to ask (I have quite a few already...). Also, does anyone have any (hopefully a happy) experience with an end colostomy reversal?
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

User avatar
Green Tea
Posts: 421
Joined: Mon Oct 24, 2016 10:48 am

Re: Next steps after chemotherapy

Postby Green Tea » Mon May 17, 2021 8:35 am

Sunnycd wrote:...I plan on calling my surgeon and make an appointment ASAP. I have questions! Any suggestions on what to ask (I have quite a few already...)

Hi Sunnycd -

It's good that you are planinng to talk to your surgeon. This will give you a chance to review some areas that she never covered when you were first diagnosed.

Yes, I have some suggestions on what to ask, but I may have even more as time goes on. What would really help is to know when you need suggestions by so that I can plan on finalizing a list of suggestions in time for your meeting.

One thing I would ask the surgeon, for example, is how many centimeters of rectal stump still remain, because this will determine how difficult the re-connect operation will be and how much of the rectum will still be usable..

I would also suggest that you make an appointment with one of the pelvic health clinics in town, or with a proctologist. This is so that you can get a baseline measurement of your sphincter pressure using an ano-rectal manometer and find out just how much improvement you need to make before the the reversal operation takes place.

So, let us know how your appointment scheduling goes and whether this will be an in-person appointment or a telephone appointment.

Sunnycd
Posts: 61
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Mon May 17, 2021 9:31 am

Green Tea wrote:
Sunnycd wrote:...I plan on calling my surgeon and make an appointment ASAP. I have questions! Any suggestions on what to ask (I have quite a few already...)

Hi Sunnycd -

It's good that you are planinng to talk to your surgeon. This will give you a chance to review some areas that she never covered when you were first diagnosed.

Yes, I have some suggestions on what to ask, but I may have even more as time goes on. What would really help is to know when you need suggestions by so that I can plan on finalizing a list of suggestions in time for your meeting.

One thing I would ask the surgeon, for example, is how many centimeters of rectal stump still remain, because this will determine how difficult the re-connect operation will be and how much of the rectum will still be usable..

I would also suggest that you make an appointment with one of the pelvic health clinics in town, or with a proctologist. This is so that you can get a baseline measurement of your sphincter pressure using an ano-rectal manometer and find out just how much improvement you need to make before the the reversal operation takes place.

So, let us know how your appointment scheduling goes and whether this will be an in-person appointment or a telephone appointment.


Thank you, GreenTea. I called my surgeon to make an appointment to go over my original surgery, steps for reversal, complications, etc, but seems she will only be available to talk on June 22nd, which is like 2 weeks after my last chemo. So, I’m glad I am starting to line up the appointments now if I am aiming for a surgery at the 6 week mark (of course, assuming I am in good shape, etc, but you have to start with an end game). Oh, and thanks for the surgeon recommendation, but he is almost 3 hours away, and I hear the ride back from the hospital after a reversal can be brutal, so I am going to research for doctors within a 1 hour range (Bergen County, NJ). I emailed my oncologist for a referral to a surgeon, as I am determined to get second and third opinions and make a much more educated and deliberate decision. In looking at MSK, I see Dr. Pappou serves Montvale, NJ branch, so I plan on scheduling an appointment. The ideal would be to meet him after I meet my original surgeon and she answers key questions about my surgery, but I will take what I can.
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

User avatar
Green Tea
Posts: 421
Joined: Mon Oct 24, 2016 10:48 am

Re: Next steps after chemotherapy

Postby Green Tea » Mon May 17, 2021 11:31 pm

I have a question about your hospital. It has a patient portal where patients can log in and see some of their medical records.

Have you registered for this service? Do you know what kind of information you have access to?
https://mychart.englewoodhealth.org/MyChart/Authentication/Login?

Sunnycd
Posts: 61
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Tue May 18, 2021 9:42 am

Green Tea wrote:I have a question about your hospital. It has a patient portal where patients can log in and see some of their medical records.

Have you registered for this service? Do you know what kind of information you have access to?
https://mychart.englewoodhealth.org/MyChart/Authentication/Login?


Yes, I do have access to the patient portal, but the info there is a copy of the surgery report I have. So, no additional info beyond test results, vitals, appointment, etc. I also use it to send messages to the doctors, which I did yesterday to my surgeon w a few questions, which I hoped she could answer and not make me wait 6 weeks for it:
- based on my surgery, how likely is that my recovery will be in the successful end of the spectrum, meaning recovering full control of my bowels and not be incontinent (I do know that there is a wide range, I do know the first weeks, months will be hell, but when things settle, how likely am I in wearing diapers forever?). I understand it was an end colostomy vs. a loop colostomy which complicates things for a reversal
- given it is an end colostomy, will it be done by cutting me open again or can it be done laparoscopically
- how much of my colon was taken or how much of it do I have left?
- is my rectal stump intact or how many centimeters of it do I have left
- at what height in the rectum was the anastomosis junction made

I am thinking that the likelihood of a reply to my message is like 1%, but at least she will be aware of it by the time I see her.
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

Sunnycd
Posts: 61
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Tue May 18, 2021 12:50 pm

Well, she did reply, yay! However, she only partially addressed my questions...

“ The surgery will be done laparoscopically. You will have completely normal bowel habits after with normal control. There is no need for diapers, etc. You have about 20 cm left. The connection will heal as you are a healthy woman. I will explain everything to you when I see you.” :roll:

Not sure if I have 20 cm of sigmoid colon, or what part in particular...I like her confidence though, but it sounds like a wish and a prayer. I am hoping for the best but preparing for the worst.
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

User avatar
Green Tea
Posts: 421
Joined: Mon Oct 24, 2016 10:48 am

Re: Next steps after chemotherapy

Postby Green Tea » Wed May 19, 2021 6:31 am

Sunnycd wrote:... I will explain everything to you when I see you.” ... I like her confidence though, but it sounds like a wish and a prayer. I am hoping for the best but preparing for the worst.

Sunnycd wrote:...I called my surgeon to make an appointment to go over my original surgery, steps for reversal, complications, etc, but seems she will only be available to talk on June 22nd, which is like 2 weeks after my last chemo...

Hi Sunnycd -

Your surgeon said that she will explain "everything" to you on June 22nd. What do you suppose she means by "everything" ? What if "everything" doesn't include everything that you consider important?

In any event, I think that between now and June 22nd you should prioritize your list of questions, print the list out for use during the meeting, and do enough background research on each of your questions beforehand so that you will be able to speak with confidence about each issue that you want to bring up.

Also, I think it would be a good idea to see one or two other colorectal surgeons before your June 22nd meeting so that you can get medical perspectives on what the situation is.

How long do you expect the meeting to last? I think you said that her earlier meetings with you were very short.

catstaff
Posts: 127
Joined: Wed Mar 03, 2021 11:37 am

Re: Next steps after chemotherapy

Postby catstaff » Wed May 19, 2021 7:38 am

I think it's a pretty good assumption that the surgeon has done this before. Some info at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5958852/ According to that paper part of the reason it's "technically challenging" is a short rectal stump, which doesn't seem to be the case for you. Success was more likely in people with a younger age and few comorbidities.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Internal1 and 45 guests