Possibly unnecessary open liver surgery

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mpbser
Posts: 378
Joined: Wed Apr 19, 2017 11:52 am

Possibly unnecessary open liver surgery

Postby mpbser » Sun Jan 14, 2018 1:16 pm

My husband's words:

So the news from Mass General is not as great as we hoped it would be... at the same time, it was nowhere near as catastrophic as it could have been.

The Chemo did exactly what the oncologist wanted it to - arrested the growth of the existing spots on the liver, and prevented it from spreading elsewhere in the body. That is TWO MRIs in a row that show no new spots, and shrinkage in the main spot. Good news!

We are going to do surgery at the end of the month and remove the spots that remain. The confidence level of a CURE is extremely HIGH! So we are thrilled.

My words:

We got MRI results Friday. The MRI was done only a few hours before our appointment with the doctors. They did not have much time to analyze the results. I do not have the radiology report yet. According to the liver surgeon, the left lobe mass has "nearly disappeared" and is almost impossible to see. The right lobe mass's size remained essentially the same. The liver surgeon said that he wants to go ahead with open surgery to do the resection. He did not explain, this time around, how much will need to be removed. I have notes about that in my records from a previous visit.

We are home now. I have looked at the records and I notice that the left lobe mass is the one that the previous radiology report had an impression that this one was consistent with metastasis. The right lobe mass is the one that the radiologist identified as demonstrating features most consistent with a benign etiology such as a sclerosed hemangioma. This means, in my lay opinion, that the left lobe tumor, being cancerous with rapidly dividing cells, responded very well to the chemo. The right lobe mass, consisting not of rapidly dividing cells, did not respond to the chemo because it is not cancerous.

I tried to address this with the liver surgeon but he was of the opinion that it would be better to be safe and have it removed and to do so with open surgery. This is very strange to me because when my husband was undergoing the first attempt at the liver surgery, the plan was for laparoscopy. The reason it was aborted was the proximity of the left lobe mass to a blood vessel. There was no concern at the time about the location and morphological features of the right lobe mass. Then again, the surgeon did not get that far. Because there was the colectomy to be done at the same time, laparoscopically, the surgeons did not convert to open surgery to do both as it would just be too much on the body all at once.

I guess my confusion lies with the fact that when we last met, the plan was to see if chemo would shrink this left lobe mass to the point where it could be removed safely laparoscopically. Now that it has worked, why the surgeon recommends open surgery is a mystery to me. What the heck???
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 T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18

MissMolly
Posts: 487
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Possibly unnecessary open liver surgery

Postby MissMolly » Sun Jan 14, 2018 1:51 pm

One possibility . . . Many surgeons will not perform laparoscopic abdominal surgery if there has been a prior abdominal surgery. The limiting concern is the development of scar tissue and adhesions that are silently lurking - tethering to other organs, tethering to the abdominal wall, tethering to another segment of intestine.

Laparoscopic abdominal surgery involves “blowing” up the abdomen with carbon dioxide to give visibility. In “blowong” up the abdomen in the presence of tethering adhesion, the risk is real of damage to vital organs and blood vessels when the abdomen is expanded and the scar tissue/adhesions are placed on tension.

Your husband’s surgeon may be approaching the upcoming surgery with an utmost of caution by opting for an open surgery. A good thing.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

mpbser
Posts: 378
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly unnecessary open liver surgery

Postby mpbser » Sun Jan 14, 2018 1:56 pm

Thank you, Karen! Most helpful information. Much appreciated!!
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 T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18

mpbser
Posts: 378
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly unnecessary open liver surgery

Postby mpbser » Mon Jan 22, 2018 3:26 pm

Surgery is looming. We leave for Boston next Tuesday. I will drop off my husband very early Wednesday. I have requested a private room but the hospital does not guarantee he will have one. The cost is $483 per night out of pocket. That's quite a bit out of our budget but I am far more concerned about him resting up and healing. When we spoke about the possibility of getting a private room, he said that he doesn't want to spend the money. I will pay for it, if need be. However, he has to sign an agreement when he checks in the morning of surgery. Since I won't be with him, I need to alert him to this in case he objects to the paperwork. I will try discussing this again in a couple nights.

Beansmama's passing has really shaken me up. I am so worried about this surgery, although I know he is in good surgeon's hands. I have so many questions and I am frustrated that I can't ask them. With the number of questions I have, the doctor would require a visit, something we don't have time for.

My little brother died January 5th in a fatal hit and run accident. He was like a son to me. I have a very high stakes, high stress meeting in Boston the day after husband's surgery (2/1). The only good thing about that is that I will happen to need to be in Boston that time anyway. I have depositions scheduled for February 7th, the last day possible per court order, for one of my cases. I don't know if my husband will be ready to journey home by then. I don't know if my life could get any more stressful. It's a nightmare!
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 T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18

mpbser
Posts: 378
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly unnecessary open liver surgery

Postby mpbser » Mon Jan 22, 2018 3:40 pm

I just gave my schedule some more thought. I think I will leave Boston Sunday 2/4, which is what we have reserved at the hotel, regardless of whether the hospital has discharged him or not. I would make sure that his doctor's team knows that they need to let me know the night before they want him to go so I can plan on driving back for the sole purpose of picking him up.

His discharge instructions the last time he was there did not contain vital information such as when to restart his regular medications. I found communication with his colon surgeon to be extraordinarily difficult. So far, however, his liver surgeon has been quite the opposite. He has phoned us many times when he didn't necessarily have to and I even have his cell phone number (if worse comes to worst). I will try to thwart any problems before they happen this time around.
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 T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18

mpbser
Posts: 378
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly unnecessary open liver surgery

Postby mpbser » Tue Jan 23, 2018 12:32 pm

Just when things could not get hectic enough, we just got a call from the surgeon who met with the team to discuss my husband's case. It is the consensus that before having the mass that looks benign surgically removed, husband should have a needle aspiration biopsy done by an interventional radiologist. It has been scheduled for tomorrow so we have to juggle our lives, work staff, and dog to get to Boston on the fly. We are OKAY with this if it means avoiding unnecessary surgery! There is also still the possibility of laparascopy for the other mass, which the surgeon has put back on the table.

To top off all the logistical stress, I have been on hold with Mass General's "Financial Access Unit" for nearly twenty minutes so far now to discuss prior authorizations. The hospital STILL has not initiated a prior authorization for next Wednesday's surgery. I also need to ask them for the "CPT code" for tomorrow's procedure too check with Blue Cross/Blue Shield if prior authorization is required. Fun times! ;)
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 T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18

User avatar
Robino1
Posts: 433
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Possibly unnecessary open liver surgery

Postby Robino1 » Tue Jan 23, 2018 12:41 pm

Sometimes you wonder about the ineptitude. Good thing you are on top of it!
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5
BRAF V600e

mpbser
Posts: 378
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly unnecessary open liver surgery

Postby mpbser » Tue Jan 23, 2018 12:48 pm

Thankfully it seems to only be the paperwork people and people discharging patients!
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 T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18

User avatar
LPL
Posts: 344
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Possibly unnecessary open liver surgery

Postby LPL » Tue Jan 23, 2018 12:56 pm

mbpser,
Oh wow soo much to handle at the same time :(
First, my deapest condolences for the loss of your young brother! :cry: I lost my best friend at the same time as my husband was diagnosed and it was like there wasn’t enough time for me to grieve properly... It was like my/the brain ‘shuts off’ to be able to get through what is just infront of you/most needed. AND I did not have an ongoing career like you have!
Hubby has never had an aspiration biopsi so I can’t comment on that other then that I have not heard of not having a liver surgery after chemo. But I hope someone else knows and will comment.
I just wanted to wish you good luck with the surgery (if there will be one?) and say that my DH experienced it as easier then his 2nd surgery (see my notes below).
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

mpbser
Posts: 378
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly unnecessary open liver surgery

Postby mpbser » Tue Jan 23, 2018 1:33 pm

Thanks, LPL.

To top it all off, my husband wants to add extra HOURS to our trip tomorrow so he can get Mac N Cheese at Quincy Market. When we were in Boston a couple weeks ago, we made the best of it since we were staying two nights. Dinner in the North End after lunch at Quincy Market. I hadn't seen my husband stuff his face so much like that in months. Plus, he has been drinking wine and whiskey... Anyway, he has expressed a tremendous desire to go to Quincy Market after tomorrow's procedure, which will be at the start of rush hour, just for Mac N Cheese. If we finish up at the hospital by 3:30, we could be out of there before rush hour. He wants to add HOURS to our busy day for FOOD.

We went to brunch Sunday and he gorged himself. He ate more than a normal person should eat in an entire week. He will be going back there with his buddies this Sunday, on a day when there is a catered event at the cigar lounge where he is a member. He will likely eat more than a normal person should eat in two weeks. I keep worrying he's going to make that tumor grow back before surgery so that laparoscopy will be totally off the table!

Sorry I wasn't very clear in my posts in this thread. I understand the surgery is necessary. I just didn't think the extent of it was as necessary as the surgeon reported to us on 1/12.
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 T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18

cbsmith
Posts: 56
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: Possibly unnecessary open liver surgery

Postby cbsmith » Tue Jan 23, 2018 2:49 pm

The Mac and Chese Place at the Quincy market is awesome! I would make a trip to get it if I was in Boston :D

I kind of understand the eating thing. Even the good days or week when I am on chemo I still don’t feel like my old normal. When I have had chemo breaks I feel back to normal and have an increased appetite and try to make up for lost time lol.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC colon cancer KRAS mutant, MSS
09/14-12 rounds of FOLFOX
04/15-ended FOLFOX
07/15-CT showed one para-aortic lymph node, onc thought inflammation and said wait 3 mths
10/15-DX Stage IV, CT showed lymph node tripled in size and 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin

mpbser
Posts: 378
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly unnecessary open liver surgery

Postby mpbser » Tue Jan 23, 2018 3:18 pm

I agree that it is the best Mac n Cheese. My husband got it with seafood and we were amazed at how much lobster etc. was in there. I DO understand the appeal. However, we will be sure to get some again when we are in town. I just want to avoid rush hour traffic as we should be able to do so long as his procedure doesn't take longer than an hour or so, which I don't think it will.
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 T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18

heiders33
Posts: 196
Joined: Sat Nov 04, 2017 11:08 am

Re: Possibly unnecessary open liver surgery

Postby heiders33 » Tue Jan 23, 2018 3:19 pm

I totally agree on the eating thing. We patients don’t get to eat normally a lot of the time, so when we have the chance we probably overdo it! Don’t worry, it won’t make the tumor grow back. :lol:
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges

mpbser
Posts: 378
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly unnecessary open liver surgery

Postby mpbser » Thu Jan 25, 2018 7:59 am

Yesterday went well. It was a CT guided aspiration, not ultrasound. They took a few samples of the mass they believe is benign. Husband had a bit of dull pain, more like discomfort, after the local anaestethic (sp?) wore off a few hours later. The process took a while because he had to lie on his side for a couple of hours afterwards so that the spot where they punctured the liver clotted. They also indicated that a two hour wait is protocol for all patients. They started the procedure late so we were there five and one half hours in total. At one point they lost my husband. They didn't remember where they had him waiting. We laughed about it afterwards but I am sure he wasn't too pleased at the time.

He ended up getting Mac N Cheese at Quincy Market. We got out of the hospital during rush hour and he was really hungry, not having eaten for ~22 hours at that point, so it made sense for us to drive the 5 minutes which wasn't out of the way after all. That's b/c the marketplace is close to the rush hour route Waze took us to get home. He was very happy about that although they were out of seafood Mac N Cheese so had to get plain. O well!
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 T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18

mpbser
Posts: 378
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly unnecessary open liver surgery

Postby mpbser » Thu Jan 25, 2018 8:35 am

On a completely different note, I was curious why the surgeon did not prescribe antibiotics pre-surgery. I asked his office about this via email and have not heard back. So, I just looked into it and apparently it may not be necessary. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3858909/ Interesting.
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 T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18


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