Not sure how to take comments from a general surgeon?

[stars9979]

***last paragraph has a movie spoiler for "the judge"***

So to give a little background... My mom has been in the hospital a lot lately with partial blockages and dehydration issues. We have been in the hospital pretty much after every one of the 7 FOLFOX rounds. So we haven't had uninterrupted treatment.

They were going to change from FOLFOX to FOLFIRI which really freaked me out for some reason...

The day we went in to get the first FOLFIRI round, the PA we see Inbetween the oncologist, stated she put a call into surgery to see what they'd say...

I started crying I was so happy, she told us they want to take out the main colon mass in the asending colon, an reverse the illeostomy, so the take down procedure. After which we would treat the liver mets. She also mentioned the liver mets are necrotic. Which means dying so that's a good thing.

Well, Friday we met with the surgeon who did the initial emergency illeostomy procedure so naturally they want him to take it down.

My mom has hemp brain so when he was examining her she asked if he was going to address the liver too. He let her sit back down and he said "I want to be clear this will not cure you. I don't know if anyone had told you, but most likely, ultimately you will die from this"

And he was acting as if there were mets all over the liver and we wouldn't be able to do anything.

No one has ever said that to us, and it reallllly upset the both of us. Eery single appointment, hospital stay, DR, etc I say the same thing.... "We know there is no guarantees, but this is aggressive treatment and we are going for curative intent, since we have 1 resectable section of liver affected"

He then saw how upset we were and he said "wow you two are very close huh" and my mom said "yeah all her life we have been" and I said "she's my best friend, and she's a single mom it's always been her and I, and my entire life the odds have been stacked up against us"

So once the appointment was over we cried for hours and I emailed her nurse and said what happened and I was really upset that a general surgeon even said anything like that he's not even a surgical oncologist.

She called me and said it wasn't his place and with cancer we take things one at a time, we need to be able to get through uninterrupted treatment etc. And surgeons tend to be direct and lack compassion and he's only been involved twice in her case. And she set an appointment with the oncologist for Tuesday.

I understand there's no guarantees, but she's never been labelled as terminal. She also has 1 section of liver affected that we are told is resectable etc.

I don't know. I told my mom we can't put a lot f weight into what he said because he's not the oncologist etc.


My fiancée also took me out last night for the very first time since diagnosis in April. We had dinner and both decided to see the movie "The Judge" and boy that was the worst idea... Little did either one of us know... The judge in the movie has advanced stage 4 colon cancer and dies (sorry for the spoiler) and I cried the moment it came ou he has colon cancer, and my fiancée tried to get me to leave but we didn't. It was close to home, lots of tears. Good movie but very hard for me to watch.

[Voxx66]

That is a bit rough. I think all medical personnel should keep those sort of opinions to themselves. The truth is - yes. If you have liver mets there is definitely a chance they will kill you. Depending on how bad and where they are located the odds may or may not be in your favor. But there is also a chance she might be cured or have long-term survival. Surgeons may always have opinions but they certainly aren't always right. Don't give up hope.

[Voxx66]

The caveat to my post is: unless you ask for their opinion. That is different. But him saying that served absolutely no useful purpose I can think of.

[canadiandaughter]

That is horrible!! I am sorry you had to listen to him. I don't mind honesty, but when they zap away all hope its pretty rough!! Especially when a person can still have hope.
I can relate to your movie crying, this summer we were at a music festival and my dh and I were listening to a talent contest and the one girl came out and sang "you can let go now daddy", well the tears poured. It was horrible.

[dianetavegia]

Now that makes me REALLY mad! My husband went and saw that by himself and keeps insisting I'd love it and we could go again. That would make me very ill. Thank you for sharing the spoiler because it would have really, really spoiled the week for me.

[dianetavegia]

Okay. I went and jumped on my husband for even suggesting I see that movie so NOW let's talk about your mom.

How many mets in her liver? How big are they? I know they're necrotic, but do you know those answers?

She still has cancer in her colon and that is still sending out cancer. That needs out NOW. Is there cancer anywhere else?

I don't care who this guy is, if he's not a liver surgeon, he needs to shut up. Your onc won't be much help because he's not a liver surgeon. My onc repeatedly gave me OLD stats so I printed out the new info (from 2006) and took it in to show him. Heck, I think in many situations, WE know more than they because we spend more time researching TODAYS info.

If your mom only has a couple of tumors in her liver then she is Stage IVb Oligo-metastatic. IF they can get out the colon tumor, they can remove the liver tumor(s) with curative intent. CURATIVE intent.

I've got a couple of links for you, but find a liver surgeon tomorrow. I wish you lived near Atlanta. My liver surgeon is very well known for having a very high cure rate with The Whipple Procedure (pancreas) and has been written up in the AJC several times. LOVED him! He kicked me out the door, they sang and danced, had me ring the bell and he said he'd never see me again. Super attitude!

http://archsurg.ama-assn.org/cgi/conten ... /141/5/460

http://www2.mdanderson.org/depts/oncolo ... -11-2.html

Let me end with this from a study at MD Anderson: Present study shows an 80% 3-year survival rate (and a 71% 5-year survival rate) after HR and well-established data showing 10- and 20-year survivors after HR of solitary and multiple metastases, even without adjuvant chemotherapy.

(These numbers were not for small tumors. Small tumors have even better stats and this is from 2006)

[mstults]

I had a blockage when I had my colonoscopy. The colonoscopy was on Saturday and surgery the next day. The gastro arranged for the surgeon but he was the one on call that weekend. Since I had not had a CT they did that on Saturday afternoon. The surgeon had told me that if my liver could be operated on they would send me to a larger hospital that does liver surgery. I didn't hear from the CT so on Sunday morning when they came to get me for surgery the surgeon came too. I asked him if he'd got the CT results back. He said yes, your livers eaten up. They then wheeled me to the surgical holding room. Can you imagine how my mother felt? While waiting in the holding room the surgeon came in there. I said how does my pancreas look. He said you have enough in your liver. I haven't asked him any more questions. I think he was a good surgeon but his bedside manner left a lot to be desired. I happened to mention this to my family doctor a while later. He started asking me questions about the surgeon such as how ols was he, etc. he said I have never met him but when I need a surgery consult and I call and he's on duty I just tell them to forget it. He said I believe that's the most arrogant person I've ever talked to. My oncologist said don't worry about him. He said he's a surgeon and they think its hopeless if they can't cut it out.

[AngelaN]

I have to tell you I am so damn sick and tired of oncologists, surgeons, etc etc deciding who is going to live and who is going to die and who is "curable" and who is not. When you get a diagnosis of "stage 4" all you think about is not IF but WHEN am or or my loved one going to die? But remember Stage 4 is NOT a death sentence. This group is a testimony to the hundreds of patients taking it one day at a time. Getting chemo, having surgery. And all the while living their life. My DH was told he is on chemo for "palliative reasons" at a major medical center in Phila and he was not a surgical candidate. It took me about 3 days and I found a highly skilled liver surgeon in Pittsburgh and 3 days later he was telling us my husband was a great candidate for Colon and liver resection and let's get it scheduled. Hmmm. And I need to tell you this surgeon is the nicest guy. Surgeons do not need to be a**holes - I have found they are when they are not sure of their skills. So dump the surgeon, and go find someone who is on your team. (Our surgeon was Dr. David Geller at UPMC - Dr. David Medich was the CR surgeon).

[stars9979]

THANK YOU SO MUCH FOR ALL OF YOUR REPLIES!!!!

If it weren't for this board I probably would be committed no joke.

voxx- we did not ask him at all about prognosis, my mom had a chemo brain moment and asked him if he were to touch the liver in there, and he made her sit in a chair and said the whole "I want this to be clear this WILL NOT CURE YOU. Idk if anyone's told you but ultimately most likely you will die from this" etc.

Today (colon resection, main mass taken out, and illeo take down) he came into pre op and said "how's my favorite patient doing?" And then he said "I had a dream about you last night and it was fantastic" which is interesting, makes me feel like we finally hit a connection with him. He also in a round about way apologized and said that the oncologist called him saying "what did you say to them they are so upset", and that regardless people can live years with this and he's sorry for any miscommunication it's good we got that out. So much different experience today. He also spent a decent amount of time with me after the take down explaining the main mass was between and orange and a grapefruit so he had to open her up, and the incision is not closed it is packed with gauze etc. then we discussed pain management, and he said he would do a pump.... Which was a joke it took us two hours to get it.... A lot of paging the nurse and complaining and crying, talking to the floor manager because I was told it would be here and being lied to etc, we got it all squared away finally.

Sorry for the long explanation/rant, long day, needed to update you guys and say thank you so much. Sorry if I'm off track lol

Canadiandaughter-I find a lot of songs and movies can be such a trigger, and I completely agree with you. When the surgeon in his office after saying the "die" word, he saw us grab each other's hand and cry together he said "wow you guys are really close huh?" And I explained yes she's a single mom my best friend and our entire lives the odds have been stacked against us and I'm hoping this time we do what we always do and we fight through it. I wish more people had super loving relationships with their parents as I do with my mom.

Diane- it is a great movie, very good. However, they address he has advanced colon cancer and even go over his son seeing him after chemo getting sick and loosing his bowels and what not, and then ultimately passing away. It's not the 100% main focus of the movie.... But it was focused enough that I was a blubbering idiot. When he goes to prison they give him compassionate release and he just looks so sick from treatments and prison etc and then.... Yeah.... But the overall concept of the movie is great, well acted etc. just a little too close for home for me, I should have listened to my hubby as soon as they said he had colon cancer and left.

I am at the hospital now after the main mass being removed and the illeo take down. I cannot remember all that info, BUT I am going to do everything I can to get that info. I know it is exclusive to the right side. She only has mets to liver. They said something about pelvic fluid but they haven't said there is Cancer there, just the liver and the colon, and the main mass is gone as of today.

Can I ask what type of qualities or experience should I be looking for in a liver surgeon? Should I personally look one up or try to get someone through md anderson cancer center referred to us by our oncologist? I'm just not sure how they would all work together on a plan if our oncologist doesn't refer the liver surgeon? I wishhhhh we could see yours. I dream about them singing and my mom ringing the hell out of a bell. I naturally would be crying my eyes out and booking an Alaskan cruise , newly found out she wants to see Alaska on an Alaskan cruise

The articles I haven't gotten a chance to read but we will be at the hospital for quite awhile so I am absolutely going to read them now. What really calmed me a few days after my post was your lasting quote about statistics, I didn't have time to reply with prepping for this surgery and leaky bag issues, but that saved me that day. Can you explain HR what that means, and 'even without adjuvant chemotherapy' that means chemo either before surgery or surgery after chemo right? Sorry for all the questions Im exhausted these past few weeks, days, and hours actually, have gotten me beat. Thank you so much again

Mstults-our oncologist stated that surgeons are more blunt and direct and tend to lack tact. I totally agree and am sorry you had an experience like my mom and I did.

[stars9979]

I have to tell you I am so damn sick and tired of oncologists, surgeons, etc etc deciding who is going to live and who is going to die and who is "curable" and who is not. When you get a diagnosis of "stage 4" all you think about is not IF but WHEN am or or my loved one going to die? But remember Stage 4 is NOT a death sentence. This group is a testimony to the hundreds of patients taking it one day at a time. Getting chemo, having surgery. And all the while living their life. My DH was told he is on chemo for "palliative reasons" at a major medical center in Phila and he was not a surgical candidate. It took me about 3 days and I found a highly skilled liver surgeon in Pittsburgh and 3 days later he was telling us my husband was a great candidate for Colon and liver resection and let's get it scheduled. Hmmm. And I need to tell you this surgeon is the nicest guy. Surgeons do not need to be a**holes - I have found they are when they are not sure of their skills. So dump the surgeon, and go find someone who is on your team. (Our surgeon was Dr. David Geller at UPMC - Dr. David Medich was the CR surgeon).

I 100% agree with you it's not his call and actually it's NO ONES CALL. Especially when its unsolicited.

I totally agree, it's not like they say its terminal there's no shots etc, because there are chances! A bunch of regulars have beaten it and or been beating it for well over 5 years.

Since my mom had her main mass out today (well yesterday, Monday) it'll be a month or so before we start chemo again, and I am wondering what skills or qualities did you look for in your liver surgeon as well if I may ask??? Thank you so much for your kind words and reply

[stars9979]

Okay. I went and jumped on my husband for even suggesting I see that movie so NOW let's talk about your mom.

How many mets in her liver? How big are they? I know they're necrotic, but do you know those answers?

She still has cancer in her colon and that is still sending out cancer. That needs out NOW. Is there cancer anywhere else?

I don't care who this guy is, if he's not a liver surgeon, he needs to shut up. Your onc won't be much help because he's not a liver surgeon. My onc repeatedly gave me OLD stats so I printed out the new info (from 2006) and took it in to show him. Heck, I think in many situations, WE know more than they because we spend more time researching TODAYS info.

If your mom only has a couple of tumors in her liver then she is Stage IVb Oligo-metastatic. IF they can get out the colon tumor, they can remove the liver tumor(s) with curative intent. CURATIVE intent.

I've got a couple of links for you, but find a liver surgeon tomorrow. I wish you lived near Atlanta. My liver surgeon is very well known for having a very high cure rate with The Whipple Procedure (pancreas) and has been written up in the AJC several times. LOVED him! He kicked me out the door, they sang and danced, had me ring the bell and he said he'd never see me again. Super attitude!

http://archsurg.ama-assn.org/cgi/conten ... /141/5/460

http://www2.mdanderson.org/depts/oncolo ... -11-2.html

Let me end with this from a study at MD Anderson: Present study shows an 80% 3-year survival rate (and a 71% 5-year survival rate) after HR and well-established data showing 10- and 20-year survivors after HR of solitary and multiple metastases, even without adjuvant chemotherapy.

(These numbers were not for small tumors. Small tumors have even better stats and this is from 2006)

Ignore my what does HR mean hepatic resection. The first article blew my mind and is EXACTLY a what I needed to see..... If you could share what you looked for in a skilled liver surgeon I will be forever in your debt Diane thank you for making my week!!!!