RANT - surgery date and question

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pete305
Posts: 17
Joined: Mon Nov 23, 2015 8:02 am
Location: ohio

RANT - surgery date and question

Postby pete305 » Tue Oct 17, 2017 9:08 am

Original cancer surgery was 2 years ago and just in September a liver met was found after routine CEA and followup PET. Met with the liver surgeon on October 10 after the MRI confirmed the size and location of the single lesion. Options of resection vs ablation were discussed and surgeon recommended ablation due to it being a single lesion with a 3.9 x 3.8 size. Surgeon said the ablation procedure would be done "next week or week after. as soon as it can be scheduled" sent hubby to get the EKG to get it out of the way and speed things up. Well, the surgery finally got scheduled: NOVEMBER 16th. Is it usual for surgery to be almost 6 weeks after all testing has been done and over 2 months after initial met discovery? It there anything we should do? Very uncomfortable waiting this long - especially considering the size of the lesion.

UPDATE: went in to the oncologist today (10/19) and while he was not there his office informed us that the oncologist agreed to surgery first, chemo second when he communicated with the surgeon (on 10/11) believing that surgery was going to happen THE NEXT DAY. while we were told the oncologist has tried to contact the surgeon, we did not know if he succeeded or not. we were advised to contact the surgeon's office again. we did. we were told again that the surgeon was in surgery and the delay was due to operating room scheduling. this is totally unacceptable. we have dealt with cancer treatment at loma linda in california, at vanderbilt in tennessee, at small hospitals in between, and have never been pushed off the way we are here.
Last edited by pete305 on Thu Oct 19, 2017 1:35 pm, edited 3 times in total.
male, 78, no history of colon issues, zip, nada, zero, null set, empty..... a surprise finding!
pathology report said T3 N0 M0, but oncologist said a "deposit" found, so, T3 N1c M0 - Stage IIIb
sigmoid colon surgery 10/21/15, resection done
chemo (folfox) 12/28/15 to 4/16, 8 treatmts due to allergic reaction
also being treated with lupron for prostate cancer (dx 2005, proton 2006, lupron began 2008)
Low neutrophils @ 2nd treatment; began neupogen shots
liver met 9/17, RFA done 10/25/17

User avatar
O Stoma Mia
Posts: 871
Joined: Sat Jun 22, 2013 6:29 am

Re: RANT - surgery date and question

Postby O Stoma Mia » Tue Oct 17, 2017 9:55 am

Something you might do is to look into peri-operative use of Cimetidine, Celebrex and other products for minimizing problems surrounding surgery. There are some previous posts about that topic here.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=51564&p=400620#p400620
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=57693&p=454654#p454654
http://www.lifeextension.com/magazine/2002/7/cover_cimetidine/Page-01
Useful Links:

How to Create a Signature
https://coloncancersupport.colonclub.co ... 97#p421597

How to Find a Board-Certified Surgeon
viewtopic.php?f=1&t=52349&p=410280#p410280

How to interpret a Pathology Report
viewtopic.php?f=1&t=51436&p=399172#p399172

Understanding TNM Staging
http://www.cancer.net/cancer-types/colo ... cer/stages

pete305
Posts: 17
Joined: Mon Nov 23, 2015 8:02 am
Location: ohio

Re: RANT - surgery date and question

Postby pete305 » Tue Oct 17, 2017 11:52 am

thanks for the links. i had done a search before and all i ever found was what to do while waiting for initial surgery, not for a confirmed metastatis. the surgeon had recommended laparoscopic procedure but noted the lesion was just on the edge size wise - .1 larger and he wouldn't do it. that's why we can't understand the 2 month wait. also, a lot of what we read says the wait time isn't so important for slow growing cancers. well, there was no lesion and the CEA was not elevated 6 months ago, so i think we're not dealing with one of those slow growers. it doesn't make it easier just because this is the third cancer we have faced. our feeling is not to make waves, but we just can't understand how the surgeon in person said "next week or the week after", but when it is scheduled it's two months out.
male, 78, no history of colon issues, zip, nada, zero, null set, empty..... a surprise finding!
pathology report said T3 N0 M0, but oncologist said a "deposit" found, so, T3 N1c M0 - Stage IIIb
sigmoid colon surgery 10/21/15, resection done
chemo (folfox) 12/28/15 to 4/16, 8 treatmts due to allergic reaction
also being treated with lupron for prostate cancer (dx 2005, proton 2006, lupron began 2008)
Low neutrophils @ 2nd treatment; began neupogen shots
liver met 9/17, RFA done 10/25/17

NHMike
Posts: 545
Joined: Fri Jul 21, 2017 3:43 am

Re: RANT - surgery date and question

Postby NHMike » Tue Oct 17, 2017 2:32 pm

pete305 wrote:Original cancer surgery was 2 years ago and just in September a liver met was found after routine CEA and followup PET. Met with the liver surgeon on October 10 after the MRI confirmed the size and location of the single lesion. Options of resection vs ablation were discussed and surgeon recommended ablation due to it being a single lesion with a 3.9 x 3.8 size. Surgeon said the ablation procedure would be done "next week or week after. as soon as it can be scheduled" sent him to get the EKG to get it out of the way and speed things up. Well, the surgery finally got scheduled: NOVEMBER 16th. Is it usual for surgery to be almost 6 weeks after all testing has been done and over 2 months after initial met discovery? It there anything we should do? Very uncomfortable waiting this long - especially considering the size of the lesion.


I met with the surgeon last week and her assistant looked at her calendar and gave me a choice of two days, two weeks apart. The first date was less than a week later and the second was what I thought would be 8 weeks from the end of chemorad which was later than I expected. But it's in the standard range. My surgeon was mostly booked up the first week available and had a conference for most of the second week. I imagine that you have to deal with the schedule of your surgeon and the availability of their operating rooms and staff.

CRC cancer is supposedly slow to grow and move but I was pretty nervous waiting several weeks before treatment started (chemo and radiation) so I have a bit of an idea as to how you feel. If it were me, I'd want the thing out ASAP.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

pete305
Posts: 17
Joined: Mon Nov 23, 2015 8:02 am
Location: ohio

Re: RANT - surgery date and question

Postby pete305 » Tue Oct 17, 2017 3:38 pm

NHMike wrote:
pete305 wrote:
CRC cancer is supposedly slow to grow and move but I was pretty nervous waiting several weeks before treatment started (chemo and radiation) so I have a bit of an idea as to how you feel. If it were me, I'd want the thing out ASAP.


this is the third round of cancer treatments and we have never had to wait over 2 months. it's nerve wracking. i'm glad you understand. it seems the doctors themselves had their own time line and then bureaucracy stepped in with some kind of hold up. when the MRI confirmed the PET and CEA on a Friday, we followed up with the surgeon on a Monday - the next business day - at his request. the surgeon was the one to indicate "next week or the week after" due to the size of the lesion. he is the one who called the anesthesiologist and ordered the EKG done what very day to get it out of the way. the oncologist was consulted and he was part of the decision to hold off on chemo until after surgery - So you see, part of the anxiety has to do with the facts that they created a sense of urgency and now it's a waiting game.
male, 78, no history of colon issues, zip, nada, zero, null set, empty..... a surprise finding!
pathology report said T3 N0 M0, but oncologist said a "deposit" found, so, T3 N1c M0 - Stage IIIb
sigmoid colon surgery 10/21/15, resection done
chemo (folfox) 12/28/15 to 4/16, 8 treatmts due to allergic reaction
also being treated with lupron for prostate cancer (dx 2005, proton 2006, lupron began 2008)
Low neutrophils @ 2nd treatment; began neupogen shots
liver met 9/17, RFA done 10/25/17

Lee
Posts: 5258
Joined: Sun Apr 16, 2006 4:09 pm

Re: RANT - surgery date and question

Postby Lee » Tue Oct 17, 2017 3:57 pm

Who actually called you to set surgery up, a staffer? I would suggest calling the surgeon's office, explain what the surgeon said on last visit. 2 months, I agree seems a bit long.

Not trying to scare you, while a primary colon cancer can be slow growing, a met colon cancer has at times multiplied much faster. I'm not saying this is happening to you, butt to say follow up with the surgeon's office and stressed what surgeon said. Ask for an explanation on why the delay, and maybe go up the chain of command.

good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

pete305
Posts: 17
Joined: Mon Nov 23, 2015 8:02 am
Location: ohio

Re: RANT - surgery date and question

Postby pete305 » Tue Oct 17, 2017 9:42 pm

Lee wrote:Who actually called you to set surgery up, a staffer? I would suggest calling the surgeon's office, explain what the surgeon said on last visit. 2 months, I agree seems a bit long.


Thanks, Lee. we called the surgeon's office tues, thurs, and fri last week and was told each time they would call us when it was scheduled. they didn't call on monday so we called tuesday and that's when the surgeon's office assistant told us the november 16 date. they never called us. when we called the oncologist to give him the date, his assistant's reaction was "yikes". she said she would email the oncologist because he might want to find out what the hold up is.........
male, 78, no history of colon issues, zip, nada, zero, null set, empty..... a surprise finding!
pathology report said T3 N0 M0, but oncologist said a "deposit" found, so, T3 N1c M0 - Stage IIIb
sigmoid colon surgery 10/21/15, resection done
chemo (folfox) 12/28/15 to 4/16, 8 treatmts due to allergic reaction
also being treated with lupron for prostate cancer (dx 2005, proton 2006, lupron began 2008)
Low neutrophils @ 2nd treatment; began neupogen shots
liver met 9/17, RFA done 10/25/17

Lee
Posts: 5258
Joined: Sun Apr 16, 2006 4:09 pm

Re: RANT - surgery date and question

Postby Lee » Tue Oct 17, 2017 9:57 pm

pete305 wrote:
Thanks, Lee. we called the surgeon's office tues, thurs, and fri last week and was told each time they would call us when it was scheduled. they didn't call on monday so we called tuesday and that's when the surgeon's office assistant told us the november 16 date. they never called us. when we called the oncologist to give him the date, his assistant's reaction was "yikes". she said she would email the oncologist because he might want to find out what the hold up is.........


Good sounds like the Onc might "push" to bump up the date, stay on top of this. It's okay to create a stink sometimes. This is your life we are talking about here. If the surgeon said within 2 weeks, don't stop until you get answers you are satisfied with.

Keep us posted, and good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

mpbser
Posts: 304
Joined: Wed Apr 19, 2017 11:52 am

Re: RANT - surgery date and question

Postby mpbser » Wed Oct 18, 2017 6:32 am

Everyone has given good advice to which I can't add much except our experience. My husband's liver met increased in size rather rapidly in a period of six weeks or so between his MRI in June and his attempted liver surgery in August. In fact, it ended up being larger than could be removed laparoscopically so the procedure was aborted. The mass when detected in June was about 1.5 cm at it's widest and now is 2.5 cm wide (10/3 MRI). He's now doing chemo in the hope that the tumor will shrink and allow for a lap-resection in December or early January after 4 rounds of chemo, otherwise the surgeon will do open surgery.

Also, from what I have read and what our surgeon has told us, masses need to be smaller than 1 cm, preferably .5 cm, to be good candidates for ablation. Otherwise, physical removal by surgery is recommended.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

NHMike
Posts: 545
Joined: Fri Jul 21, 2017 3:43 am

Re: RANT - surgery date and question

Postby NHMike » Wed Oct 18, 2017 7:03 am

mpbser wrote:Everyone has given good advice to which I can't add much except our experience. My husband's liver met increased in size rather rapidly in a period of six weeks or so between his MRI in June and his attempted liver surgery in August. In fact, it ended up being larger than could be removed laparoscopically so the procedure was aborted. The mass when detected in June was about 1.5 cm at it's widest and now is 2.5 cm wide (10/3 MRI). He's now doing chemo in the hope that the tumor will shrink and allow for a lap-resection in December or early January after 4 rounds of chemo, otherwise the surgeon will do open surgery.

Also, from what I have read and what our surgeon has told us, masses need to be smaller than 1 cm, preferably .5 cm, to be good candidates for ablation. Otherwise, physical removal by surgery is recommended.


I think that my oncologist and radiologist were a bit puzzled by how eager I was to start treatment. My tumor was quite large (100 cm^3) and it was causing a lot of discomfort. I've read about others where it's even bigger and causing pain. They offered pain medication which wasn't what I was looking for. Fortunately it started shrinking after treatment but I was worried about the rate of size increase vs the rate of shrinkage with chemo and radiation.

My feeling (as it relates to doctors, treatment and urgency) is that they haven't had cancer and they aren't as motivated as we are to get the problem solved or stop it from getting worse.

Thanks for the information on what can be done on removal related to size. This board is quite the education on the limits of modern procedures.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

mpbser
Posts: 304
Joined: Wed Apr 19, 2017 11:52 am

Re: RANT - surgery date and question

Postby mpbser » Thu Oct 19, 2017 5:37 am

NHMike,

Just for clarification, in terms of the size of husband's tumor and type of removal. The reason the size of this particular mass is important is its proximity to a blood vessel, not the size itself. At 2.5 cm it's too close to the hepatic vein or artery (I forget which it's near) to be chipped/wedged with laparascopy, but if it shrinks back to 1.5 then it can be done that way based on the safe distance.

I don't know if there are size limits to tumors that can be removed laparoscopically if there are no distance to blood vessel issues.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

pete305
Posts: 17
Joined: Mon Nov 23, 2015 8:02 am
Location: ohio

Re: RANT - surgery date and question

Postby pete305 » Thu Oct 19, 2017 11:44 am

Lee wrote:
pete305 wrote:


Good sounds like the Onc might "push" to bump up the date, stay on top of this. It's okay to create a stink sometimes. This is your life we are talking about here. If the surgeon said within 2 weeks, don't stop until you get answers you are satisfied with.


lee, read the update we posted above.
male, 78, no history of colon issues, zip, nada, zero, null set, empty..... a surprise finding!
pathology report said T3 N0 M0, but oncologist said a "deposit" found, so, T3 N1c M0 - Stage IIIb
sigmoid colon surgery 10/21/15, resection done
chemo (folfox) 12/28/15 to 4/16, 8 treatmts due to allergic reaction
also being treated with lupron for prostate cancer (dx 2005, proton 2006, lupron began 2008)
Low neutrophils @ 2nd treatment; began neupogen shots
liver met 9/17, RFA done 10/25/17

Lee
Posts: 5258
Joined: Sun Apr 16, 2006 4:09 pm

Re: RANT - surgery date and question

Postby Lee » Thu Oct 19, 2017 3:30 pm

pete305 wrote:UPDATE: went in to the oncologist today (10/19) and while he was not there his office informed us that the oncologist agreed to surgery first, chemo second when he communicated with the surgeon (on 10/11) believing that surgery was going to happen THE NEXT DAY. while we were told the oncologist has tried to contact the surgeon, we did not know if he succeeded or not. we were advised to contact the surgeon's office again. we did. we were told again that the surgeon was in surgery and the delay was due to operating room scheduling. this is totally unacceptable. we have dealt with cancer treatment at loma linda in california, at vanderbilt in tennessee, at small hospitals in between, and have never been pushed off the way we are here.


Contact the Onc office and see if the Onc can push this surgery earlier. When I was getting my last FOLFOX infusion, I was loosing my hearing (chemo related, rare butt can happen). Onc office set me up with an ear specialist. To see this Dr in 48 hrs. I called that Dr. office the next day to see if I could reschedule for later in week as I knew I would be sick. I was told if I did not keep that appt, the next available would be 3 months out. This appt was one of those special Dr to Dr appointments.

Is there any other hospitals this surgeon is associated with? I agree, this is so wrong.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!


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