Bugs me...surgeon that doesn't have much conversation...

Sharronoffaith

hi everyone,

I have a prior post regarding my concerns at having an APR, and am grateful for all the responses, regarding my fears of having this radical surgery.  i am really uncomfortable with the procedure, and maybe someone can give me some insight as to my main concerns.  

A little background:    

I have a very low, but small tumor about 1cm or a little further from the anal verge.  Underwent 28days of chemoradiation, and the tumor shrunk,,and even parts of it were expelled.  This is like 8 weeks later, and I had followup with the team, and then went to see the surgeon. Radiologist and chemo doc were still very upbeat and talking about LAR/TME being my surgery, and a follow-up to see if I would have more chemo. Cat scan confirmed shrinkage of tumor, and it is now called "a thickening."  Also, have had no issues of urgency or incontenance.  

The runaway surgeon:

i got to the surgeon, and he had even scheduled a surgery time prior to meeting me.  Before even looking, he says "I am just trying to save your bottom," but he goes on to say he believes I will need an APR.

On exam, he says how it has shrunk a great deal.  And,  then I am worried, concerned, as he is already pushing the radical surgery.  At one point, he seemed to say it could not be done.  But, then he said "you would need a diaper at night."  I tried to have a discussion, and to find acceptance of this about-face in my surgery options.  I wasn't crying, or argumentative, just floored, and clearly panicked.  I am still in the gown, and wanted to ask some questions.  So, he then makes a motion that I get dressed and then we will talk.  so, here I am, dressed and standing there,,and he doesn't come back.

i am led to the sppointment secretary, and now the surgeon is there and saying I need to see the "stoma nurse."  He then has her schedule a surgery time, and says I will probably need an APR.  SO...end of discussion.  No appointment is made prior, and I am not informed of the surgical procedure at all.  My only comfort is in knowing I don't HAVE to do this.  But, now I am afraid of just letting the cancer grow.  I have no delusion that I will go into surgery and not end up with APR.  

i know surgeons don't talk much, but this guy does 800 surgeries a year, and I have to wonder if I am not important enough to receive the intensive surgery it would take to perform this surgery.  I do believe it is possible, and I don't want to go into surgery not having any idea what I have gotten myself into.

 

thanks for any help,

I'm running for the exit!

sharron

 

 

neons356

APR

Hi Sharon,

               I don't understand why the surgeon said you'd have to wear a diaper. Unless I'm missing something, if your rectum is removed you'll end up having a colostomy,which is really no big deal once you get used to it. Maybe it's time to talk to another surgeon?

                                     Carl

HollyID

Hi Sharron

Sharron,

I wouldn't have a problem whatsoever seeking the advice of another surgeon.  One that won't talk to you or makes decisions about your surgery without including you in them is disrespectful and not worth your time.

If you're not sure where to find one, talk to your oncologist or primary care physician and ask them to recommend another surgeon.   

NewHere

If You Do Not Feel Like You Are Getting Paid Attention To

Make sure they really are paying attention when you question them.  Also make sure to get other opinions, at least one other if not more.

If you do not think you understand what they are telling you or want more details, just keep asking.  This is not getting a flu shot.  I had a great surgeon, head of department, and there is nothing I asked him or my oncologist (or any of my family asked them) where it was a problem for them.  (I did have an issue with a nurse on one conversation.  Just thinking about what she said gets me ticked right now.  I have not seen my doctors since the conversation, and was so furious I almost considered swtiching doctors becauase she was so nasty.)

vtspa6

Kinda sounds like what my

Kinda sounds like what my nephew had done?  Due to rectal cancer he ended up without a rectum and had a colostomy.  Then about a year later had surgery to make a new rectum and had the colostomy reversed.  It took him about a year to get used to his new rump (had to watch his diet and be by a bathroom).  He did say there are times when he wished he still had his colostomy.  You might want to call the surgeon and tell him you still have questions before going thru with this.  Sometimes doctors do not have good bedside manners.

John23

APR - ?

APR - ?

 

The operation (for those that don’t know) is explained in detail here:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2789508/

A more desirable surgery should provide a “sphincter-sparing operation” that will make sitting a bit more comfortable.

And as all those here have already suggested, you should get a “second opinion” (and a third and fourth if necessary) from a colorectal surgeon that is NOT of the same group or organization as your present physician. It is important that you do so before going further.

With rectal cancer, there appears to be an awful lot of recurrences. It’s been suggested that the problem is due to the stigma attached to having a stoma, where a complete removal would provide a better chance in living a longer life, the option of not removing it all is the choice the patient ends up making. Some surgeons realize that “leaving it to the patient” can end up killing the patient, and attempt to move ahead with what they feel is the best route to take.

Those of us that are living with an Ostomy can probably offer you the best advice: DO IT. It does not guarantee you a long life without a recurrence, nothing does, but it provides you with better odds, and with cancer… That’s all you can wish for!

Along with getting another opinion or three from a qualified colorectal surgeon, you should always have someone with you to take notes and listen carefully to what’s being said. I have a tiny recorder that I slip into an eyeglass holder on my belt; no one notices it. It was worth the $$ ! When we’re faced with any life-changing event, it’s not always easy to remember everything; we get caught up in the moment and end up missing some important dialog. It’s a normal reaction that does not improve with age or experience (trust me). I like the recorder, since my significant other (wife) can get upset with “bad news” as much or more than I, and miss some of the dialog. Surgeons are not noted for their expansive speaking talent. Good thing, probably. Imagine an Italian surgeon and the way we Italians “talk with our hands”… not the greatest habit during critical surgery, right? (“Oops… where’d that piece of liver go?”)

So please take the time to get another opinion from a colorectal surgeon, and make some arrangements to bring along a responsible person to take notes. Or Buy a tiny voice recorder that’s voice operated. Test it out in the store and make sure it works the way you need it to.

Oh…… And please try not to panic. You’re starting on a long trip. We’re all trying to be here for you, one way or the other. Many of us have gone through what you’re about to go through, and although results will vary, some comments will apply.. You’ll be OK. Just do not allow fear to be your decision maker.

My best wishes to you,

John

Trubrit

NewHere said:

If You Do Not Feel Like You Are Getting Paid Attention To

Make sure they really are paying attention when you question them.  Also make sure to get other opinions, at least one other if not more.

If you do not think you understand what they are telling you or want more details, just keep asking.  This is not getting a flu shot.  I had a great surgeon, head of department, and there is nothing I asked him or my oncologist (or any of my family asked them) where it was a problem for them.  (I did have an issue with a nurse on one conversation.  Just thinking about what she said gets me ticked right now.  I have not seen my doctors since the conversation, and was so furious I almost considered swtiching doctors becauase she was so nasty.)

I hope you reported her to her boss.  

No nurses or medical assistants (that's my job) or receptionist should be nasty or mean. There job is to serve you and be there for you.

Sue - Trubrit

NewHere

Trubrit said:

I hope you reported her to her boss.  

No nurses or medical assistants (that's my job) or receptionist should be nasty or mean. There job is to serve you and be there for you.

Sue - Trubrit

I Have Not Seen Them Since

I was going to call, but know I have to see the doctor shortly, so may do it face-to-face.  It was pretty bad. In fact just thinking about it again, three months after the fact, makes me want to find another oncologist.  Yeah, she was that much of a .... well put in the apporpriate word.   Condescending, patronizing [put in the words you like.]  Yeah, complete infuriating.

danker

vtspa6 said:

Kinda sounds like what my

Kinda sounds like what my nephew had done?  Due to rectal cancer he ended up without a rectum and had a colostomy.  Then about a year later had surgery to make a new rectum and had the colostomy reversed.  It took him about a year to get used to his new rump (had to watch his diet and be by a bathroom).  He did say there are times when he wished he still had his colostomy.  You might want to call the surgeon and tell him you still have questions before going thru with this.  Sometimes doctors do not have good bedside manners.

bedside manner

The  oncologist that was assigned to me was a real jerk.  So I fired him.! I went to my surgeon and asker her to refer me to anothr onc.  The new one, a lady, was a real gem.  She has taken great care of me these last six years.  Since we are paying the bills, we don't have to put up with inferior service!!!

lizard44

I agree

with the others.  If you  cannot get the surgeon to have a discussion with you,  answer your  questions or address your concerns,  definitley ask for a referral to  another surgeon in another group. This is your life and your body and you have a right to be comfortable with and confident in the people  to whom you have entrusted your medical care.

 

Sharronoffaith

lizard44 said:

I agree

with the others.  If you  cannot get the surgeon to have a discussion with you,  answer your  questions or address your concerns,  definitley ask for a referral to  another surgeon in another group. This is your life and your body and you have a right to be comfortable with and confident in the people  to whom you have entrusted your medical care.

 

Thanks...always great replys here

hey everyone,

thanks for the wonderful feedback.  I guess an in-depth discussion would not be comfortable for the surgeon or me.  I have read a great deal on local reoccurrenc, and found most journal articles say that distant matastasis is the primary issue.  I have some new lung nodules,, but they have said they are small and probably not cancer---we shall see.

I am keeping everyone here in my thoughts and prayers.  I am fairly new, but have felt very welcomed, and the amount of responses are heart warming.  I see over and over that this stupid colorectal cancer is the gift that keeps on giving--with liver and lung mets.  I am prayerful and hopeful for everyone on here that treatments advance and become more effective.  The sharing of information here is very important to me, and I am glad to hear of "barbie butt" and other issues with APR.  I am hoping on seeing the chief surgeon in colorectal surgery at the hospital I go to.  She has a special interest in rectal cancer, and I just want to make sure that APR is in my best interest.  I have had the neoadjuvant chemoradiation, and the tumor has shrunken quite a bit.  I have a tumor about 1cm in size now, but in a terrible location.  I am coming to terms with the thought of a colostomy.  It is not just the thought of the bag that bothers me, but rather the profound reality of changing my digestive system.  Darn, I am a bean eater for pete's sake...lol

 

thanks again for all the wonderful feedback,

 

I guess I'm here for the long haul...

 

Sharron

 

 

 

 

 

NewHere

Sharronoffaith said:

Thanks...always great replys here

hey everyone,

thanks for the wonderful feedback.  I guess an in-depth discussion would not be comfortable for the surgeon or me.  I have read a great deal on local reoccurrenc, and found most journal articles say that distant matastasis is the primary issue.  I have some new lung nodules,, but they have said they are small and probably not cancer---we shall see.

I am keeping everyone here in my thoughts and prayers.  I am fairly new, but have felt very welcomed, and the amount of responses are heart warming.  I see over and over that this stupid colorectal cancer is the gift that keeps on giving--with liver and lung mets.  I am prayerful and hopeful for everyone on here that treatments advance and become more effective.  The sharing of information here is very important to me, and I am glad to hear of "barbie butt" and other issues with APR.  I am hoping on seeing the chief surgeon in colorectal surgery at the hospital I go to.  She has a special interest in rectal cancer, and I just want to make sure that APR is in my best interest.  I have had the neoadjuvant chemoradiation, and the tumor has shrunken quite a bit.  I have a tumor about 1cm in size now, but in a terrible location.  I am coming to terms with the thought of a colostomy.  It is not just the thought of the bag that bothers me, but rather the profound reality of changing my digestive system.  Darn, I am a bean eater for pete's sake...lol

 

thanks again for all the wonderful feedback,

 

I guess I'm here for the long haul...

 

Sharron

 

 

 

 

 

I Am A New Yawker

I guess an in-depth discussion would not be comfortable for the surgeon or me.  

On the first part, ^@^$%& them, it is what they are to do.  Do not let them off the hook or allow them to duck.  Or find someone who will give a sense of doing right BY YOU.  (Emotionally and being there medically so you are comfortable)  

On the second part, it is tough.  And you look like you are getting up to speed.  To the extent it is uncomfortable for you, this all can be so tough on many levels.  Do not let that deter you at all in getting your answers or feeling as comfortable (not sure that is a good word for all this) as you can.  Hang here, we are all here for any discussion.  And to reassure you that it ain't you.  It is this &*&#(*&*&R(*  thing we have been dealt.  So people can either get on the train to help or they can just move the heck out of the way