Sunnycd wrote:Well, my last round was delayed again because my onc felt I was too weak for chemo (low platelets, WBC, basal, etc). I was disappointed, as I wanted to be done and over with it, but this weekend temperatures in NJ dropped to 50F and now I am coming to see this as a blessing. I will get my infusion this Friday when temps are in the 90’s!
I got my appointment w Dr Pappou from MSK on June 15, and with my original surgeon on June 22. Still compiling the list of questions, so any suggestions, greatly appreciated.
I asked about the survivorship plan at MSK, and they said they will refer me to it after the 5 year milestone. Meanwhile, I am compiling a list of doctors that I plan to see on regular basis...should my primary care physician be an internal medicine dr, or obgyn. Right now, the default is my rheumatologist, only because he was the only doctor I saw consistently for 7 years because of my Lupus.
I'm sorry to hear about the two-week delay in your last CAPOX infusion, but I think this is probably the case for a number of patients around the 4th cycle due to the accumulated effects of the first three cycles. Just try to stay healthy and well-hydrated and I'm sure you'll make it through OK.
Since the temperatures in N.J. are predicted to be over 90 for the next week or so, be sure to keep your room clean and change the sheets and pillow-cases often in case the bedding becomes damp with sweat. Damp bedding can attract various fungi and dust mites
that can then cause allergies, skin problems, etc. You will want to stay healthy enough to be able to attend your two surgeon appointments in good form later in the month.
- For your appointment with the MSK surgeon on June 15, you will probably be on your last week of Xeloda. Do you have to travel very far to see him? Do you think that you will be fit enough to make the trip? **** See Note appended below ****
Before your appointment with him you could read the MSK and ASCO materials on Survivorship Planning. Please note that your Survivorship Plan should start as soon as you have finished your last treatment intervention. (The recommendation that you mentioned above to defer the Survivorship Care Plan until after the 5-year milestone doesn't make much sense to me. It's not clear who told you that. The planning needs to start now and needs to be in place by the time your reversal surgery is finished.)
In particular, your Treatment Summary (TS) needs to be completed before you lose contact with your oncologist and your surgeon. They are the ones who know all the details necessary for accurately summarizing your past treatment interventions.
Yes, you could essentially lose contact with your Oncologist and Surgeon over time. This is because oncologists are mainly interested in cancer, not in other things like fecal incontinence, chemo brain, dietary problems, etc. It's the same for surgeons I think. Surgeons are mainly interested in insuring that the latest surgery went well, or that there might be the possibility of another surgery, such as a hernia repair, but they're not particularly interested in counseling patients on post-therapy issues like fecal incontinence, long-term peripheral neuropathy, etc. They consider these issues to be the domain of other kinds of doctors, and they tend to distance themselves from patients who no longer actively need the services of oncology or surgery -- at least that was my experience during my 5-year followup period.
So, in my opinion, you are basically on your own after the reversal surgery except for the routine cancer-related periodic check-ups for CEA and scans. You need to put together a good team that will help you get through the next 5 years and that will help in all of the non-cancer areas related to long-term after-effects of treatment. I think it would work out OK to have your rheumatologist head the team since he knows you best. Just make sure that he has all of the information on your recent treatments and that he is in contact with the other members of your team and can get in contact with your oncologist in case there are questions with a recent scan or CEA test.
- For your June 22 appointment with your original surgeon you will probably already have finished chemo by then. I assume that you will be talking to her about reversal surgery planning in the event that you decide to go with her for the reversal surgery. In that case, the main questions would probably pertain to how and when that surgery would proceed. The main problem with the reversal surgery as I see it would be in dealing with the adhesions that probably developed after your original emergency surgery with the long vertical incision. According to several articles that I have read, it may take an hour to an hour-and-a-half for the surgeon to cut out all of the adhesions just to gain access to the rectal stump -- which may have receded into the bottom of the pelvic cavity over the past several months. The rectal stump needs to be fully accessible in order to proceed with the anastomosis connection.
For your information, your original laparotomy surgery was probably done under CPT Code 44143:
CPT 44143: Colectomy, partial; with end colostomy and closure of distal segment (Hartmann type procedure)For your upcoming reversal surgery, it looks like the surgery would be done under CPT Code 44626:
CPT 44626 Closure of enterostomy, large or small intestine; with resection and colorectal anastomosis (e.g., closure of Hartmann type procedure)
"...Finally, for CPT 44626, this procedure includes very similar work to what is described by CPT 44625, but in this procedure, the two structures anastomosed are the colon and the rectum (aka a colorectal anastomosis). This procedure may also involve resection of part of the remaining colon and part of the remaining rectum before creating that colorectal anastomosis. You will notice in the parentheses in the code description that CPT states this procedure may be coded for closure of a “Hartmann’s type procedure.” In a typical Hartmann’s procedure, one end of the colon is brought out to the abdominal wall as a colostomy while the remaining rectal “stump” is stapled closed. So in reversing a Hartmann’s, the surgeon would typically resect part of the colon that was attached to the abdominal wall and maybe “clean up” the end of the rectal stump and then perform a colorectal anastomosis. That’s why closing the ostomy created during a Hartmann’s procedure would typically fall under CPT 44626. It is important to note, though, that most but not all Hartmann procedure takedowns would be coded as 44626. In a modified Hartmann’s procedure, the surgeon will connect one end of the colon to the abdominal wall as a colostomy and then staple closed a “long Hartmann’s stump” that includes part of the sigmoid colon plus the rectum. If the surgeon closes the ostomy at a later date and the anastomosis created is between part of the colon that was connected to the abdominal wall as an ostomy and the sigmoid colon (rather than the rectum), you would code CPT 44625 (since the anastomosis would be colon to colon instead of colorectal). Small details here would make a difference in the coding..."
In summary, try to manage things now so that you don't have to cancel these appointments at the last minute.
I have some questions that could be added to your list, but it would help to know more about why you are having these meetings and just what you expect to achieve from them. Some of my questions are rather theoretical in nature and may not be of much interest to you, so I don't want to suggest ideas that are not going to be useful.
Right now, I think that the most important question to ask each surgeon would be: "How much time do I have for this particular appointment" so that you can quickly prioritize your list and be sure that the most important questions are dealt with before your time is up.
**** NOTE ****
From what I can determine from the various MSK websites, the MSK Bergen facility near you can do surgical consultations (like your June 15th consultation with the MSK surgeon) but it doesn't seem to offer surgery itself at this facility **
. This is one thing that you could check during your meeting on the 15th. If you are considering having the MSK surgeon do your reversal surgery, then it might have to be done in the main MSK surgery facility in NYC, but this might pose problems for you if you are planning to have your surgery done only in nearby Bergen County. Be sure to check this out. Since the MSK surgeon is certified to practice in New Jersey, he could contact your insurance company to see if they would exceptionally allow the surgery to be done in New York while all other surgery-related support would be done locally in his New Jersey office.
Services Offered at MSK Bergen (Montdale, New Jersey)
At MSK Bergen, residents of Bergen, Essex, Passaic, and Hudson counties in New Jersey, and those living in the lower New York counties of Orange and Rockland, have easier access to the following MSK services:
• surgical, medical, and radiation oncology consultations
• radiation treatment
• mammography, ultrasound, MRI, CT, and PET imaging
• clinical trials
• a cancer-specific retail pharmacy
• supportive services, including rehabilitation, lymphedema therapy, genetic counseling, social work, and nutrition
"...For patients requiring surgery, all of the pre-operative care and post-operative care can be done here at Bergen. They need to go into Manhattan for surgery. But other than that, everything else can be done here..."