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I need the boards advice for a gallbladder polyp.

Helen321's picture
Helen321
Posts: 925
Joined: May 2012

Hi all, as some of you know, I'm currently 44 and I just spent two years dealing with rectal cancer.  One anal.rectal removal and permanent ostomy later, I'm currently NED.  I found out after my surgery and treatment that colon cancer, breast cancer and kidney cancer run in my father's family.  My 16 year old son was having pain in his kidney and ended up having surgery for something non cancer related (kidney defects also run in my father's family).  The scan happened to show a polyp on his gall bladder.  The doctor has said what they always say, he's 16, it's rarely cancer and at 16 even more rare.  I decided to check with my father's family.  My father's uncle died of gall bladder cancer at the age of 52.  The doctor thinks I'm overreacting for wanting my son's gall bladder out when there is no evidence of cancer, just a polyp.  He wants to monitor the polyp and not even seriously, just the ocassional check.  With gall bladder cancer, by the time they find the cancer, it's 4 out of 5 times too late and many die within weeks.  Only 1 in 5 find it early.  The only way to find out if the polyp is pre/cancerous is surgery.  Why take a chance?  I want the surgery.  That's my thing.  He's 16.  If we remove the gall bladder now, the chances of him getting cancer are then zero.  What if he grows up and doesn't follow up and it turns to cancer and at 42 is faced with cancer and death.  I can't do this for the next 25 year, I just can't.  The worry would eat me alive. Anyway, we all spend so much time dealing with this, I know it's not colon related but I value the opinion of those on this board.   I thought I'd ask even if it's a different part of the body.  I was thinking maybe I could ask my oncololgist to set up an appt. at Sloan to get the opinon of a cancer specialist.  I am losing so much sleep over this.  I wish the doctor would just do the surgery based on my desire but he won't.  Am I overreacting?  Would you remove your child's gall bladder if someone in your family died from gall bladder cancer considering how many in my father's family have died from various cancers?

RobinKaye
Posts: 93
Joined: Nov 2011

Helen, can you have genetic testing done on your son to see if he really is predisposed. Its likely he is due to genetics but it could have skipped him altogether.  A friend lost her mother to breast cancer at an early age.  My friend was tested 25 years ago and found she carries the gene which predisposes her to breast, pancreatic and colon cancer. She is one of the first women to have a preventative radical mastectomy.  She is checked yearly for pancreatic and colon cancers. 

I think you have every reason to be concerned but you have time to investigate this more thoroughly before removing an organ. I have four sons...if I found one of them in this situation and after investigating found a substantial risk there would be no doubt that I would proceed with preventative measures if it was feasible. 

Considering you are 44 with crc and an extensive family history you should be eligible for genetic testing. 

Best of luck through this, so scary when its your kid...

Robin

Helen321's picture
Helen321
Posts: 925
Joined: May 2012

I am going for genetic testing in April.  I don't know if my sons would qualify but now I'm going to ask and if my children do qualify, we're all getting it done.  It just makes sense.  My doctor told me that the problem is that some genes haven't been found yet so they can test what they know on me.  We have to start somewhere.  Thanks for the advice.  It's funny when it's you, it's one thing, your kids new heights!

herdizziness's picture
herdizziness
Posts: 3492
Joined: Apr 2010

What a terrible position to be in!  I can imagine the fear.  I would be feeling that too.  I think the thing to do (easier said then done) is take some deep breathes and relax for a few.  Then yes, contact another Oncologist for his opinion, and then one more.  Also, get yourself an appointment for him with at least two different surgeons for their thoughts.  Then weigh all of their opinions, your thoughts and fears and go on from there.  Try not to rush into anything, a few weeks in the case of it being a polyp isn't going to make a difference, but being better informed by more then one physician can. And Robin's advice is solid as well.

My heart absolutely goes out to you.

Winter Marie

ron50's picture
ron50
Posts: 1320
Joined: Nov 2001

     My doc removed my gb on suspicion. I had acute pancreatitis. He could see nothing on the ultra sound but he figured it had to be a little gallstone blocking off my pancreatic duct. He took it out laprisccopically. I can honestly say that I didn't notice any difference until I started to suffer bile salt mal-absorbtion. One sachet of questran lite of a morning and I am good as gold. My advice would be to find a doctor who is willing to look at the family history and take the thing out. Gall bladder cancer would have to be up there with the rarer forms of cancer. To have a family history of it and to have a son with a gall-bladder polyp well it is not rocket science. How many gi's finding a colon polyp would say lets wait and see. It would be gone long before you were advised off it. If it stays you and him will have a lot of sleepless nights....Not worth it...Hugs Ron.

UncleBuddy
Posts: 712
Joined: Aug 2013

I'd get a second and third opinion, do the genetic testing and go from there. Can't they just biopsy the polyp? 

Good luck and let us know how it goes.

Lin

Helen321's picture
Helen321
Posts: 925
Joined: May 2012

I wish, apparently with the gall bladder, biopsies are not simple.  I did ask though.  And then if it is pre/cancer, they have to open you twice and they won't do that. 

jen2012
Posts: 1252
Joined: Aug 2012

There are some gallbladder cancer posters  under "rare and other cancers"  maybe someone can point you in a good direction there.

 

Easy for the docs to say dont worry....we see it all here in our cancer underworld.  Try not to stress but keep on it til you are comfortable.  

janderson1964's picture
janderson1964
Posts: 1828
Joined: Oct 2011

I don't think you are over reacting. Especially since you can live a normal life without a gallbladder. I had mine out two years ago. Have you discussed this with your son to see how he feels about it.

Lovekitties's picture
Lovekitties
Posts: 2993
Joined: Jan 2010

I agree with Winter Marie...you need to get more opinions.

I hope that it all turns out to be a non-problem.

Please keep us updated on how things go.  Doesnt't matter that it is not CRC...once a member of the family here...always a member.

Hugs to you and son,

Marie who loves kitties

Helen321's picture
Helen321
Posts: 925
Joined: May 2012

Thanks to all.  My concern is that they will doing the testing as they did with me and tell me it's not genetic and then say but there are some genes we haven't found yet.  I would venture to say my cancer was genetic, I mean there is a chance that 4 of us having it is just environmental, there's always that chance.  I guess I'm putting the cart before the horse.  I should start with the genetic testing that does exist, great advice!  Thank you.  This is why I love this board.  Funny, when you're worried you just don't think straight.  It was one thing to be me with cancer, it's a whole different ball game when it's one of your kids.

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

issue and you have gotten such good advice already.  What I do have experience with is being a Mom and the ever present concerns for your children's well-being. My heart goes out to you and I understand why you want to be so vigilant. Please keep us informed as to how the situation unfolds. Best to you and your son. 

Peace. ~ Cynthia

Helen321's picture
Helen321
Posts: 925
Joined: May 2012

Thanks Cynthia.  I have a call in to my oncologist.  I refuse to let my children get cancer.  Prevention, prevention, prevention.  Without being too crazy.  I think a polyp warrants action.  I'll let you know once I get things rolling.  The advice is right on.

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

Hellen I can totally see why you feel this way... How much more can you deal with.. so sorry..

Getting another opinion is great... I hope they do as you desire... and all turns out well

 

Chelsea71
Posts: 1170
Joined: Sep 2012

Do what you have to do in order to get rid of the gallbladder.  Easy for the doctors to say, "Don't worry.  It's nothing".  I guarantee you if it were their son/daughter they would be doing a hell of a lot more than monitoring it occasionally.   I understand your worry.  I don't think it's cancer but it's best (with your family history) to be proactive.  Let us know how it goes.

 

Chelsea

curriewalla
Posts: 9
Joined: Apr 2012

Hello Helen321 -  I have a relative who is NED 3+ years after extensive surgery to remove the gallbladder (and other stuff).  He had follow up chemo.  He was 40 something when diagnosed and that is considered really young to have this cancer. 

I cannot give you information about polyps or whether some gallbladder cancers are genetic.  Also, I have no medical background.  But what I've learned from my relative's experience with this cancer is that it is aggressive and seeds (spreads) easily.  Where I live in the Great White North, laparoscopic removal of the gallbladder is contraindicated (not allowed) if gallbladder cancer is suspected before surgery; if cancer is suspected the gallbladder must be removed using the open method.   Therefore, if any surgery or biopsy is proposed, I recommend that you ask your doctors alot of questions about what method is being used and what risks are involved including the likelihood of spreading cancer (if it turns out to be cancerous).

I saw your post and thought I would respond here.  You could post on the 2014 for GBC (all stages) under Rare and Other Cancers.  Lily50 and Maudsie, who are perhaps the best informed posters, haven't been active lately. 

Take care, Curriewalla

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