Spoke with the surgeon yesterday...

[Tybear]

I called on Monday to make an appointment to re-book the one I missed while I was in the hospital last week. I was quite surprised when she called me back not 5 minutes later to cancel it - she said Dr.B wanted to speak with another doctor before he sees me. I was beginning to get really frustrated but then the doctor himself phoned later in the day to explain what was going on.
He said that this surgery is going to be much more invasive then he originally planned on. He wants to consult a vascular surgeon, a bone doctor (who deals with cancers in the spine to remove the tumor on my tailbone) and a plastic surgeon - apparently because of the new nodules lining my stomach, they may have to do some creative "cutting" and he wants someone there who can put me back together as nicely as possible. These new doctors are in addition to Dr.B (gyne surgeon) and Dr.F (urological surgeon) and possibly a GI doctor. 5 surgeons....
Now, the problem I'm having with all of this is...am I really that sick that I need 5 doctors to operate on me? Or is this doctor of mine just being really cautious and making sure I have the best available to me, should I need it? As he put it "I think you know that if you don't do surgery, you'll be in trouble. But, if you do do surgery you could also, potentially, be in trouble. We need to figure out which is the lesser of two evils".
He told me that he's almost certain I will need a permanent colostomy and that my nephrostomy bag will most likely be permanent as well. There could also be complications and a long recovery. That, if all goes well then maybe I could get another 5 years, if I'm lucky.
If he can get these other three surgeons on board then we'll be meeting next Tuesday to talk some more. Otherwise, this surgery won't happen.
I know nothings for sure yet, but it's given me much to think about. What if I did the surgery, and something horrific happened and I never made it out? What if I did it and I got another 5 years? What if I don't do it...what else can they offer me? I already know they don't have anything they think will actually work, so I'd just be back to guessing, with regards to chemo.
I guess what I'm really struggling with is the notion that I'm sick. I mean, I know I'm sick but I swear, if you saw me walking down the street you'd be none the wiser. I look just like everyone else...yet they're telling me I'm so full of cancer that I need this big surgery? It's just not all adding up....
Anyways, I'll let you all know if they call me in for an appointment next Tuesday - if so, then I guess I can pass all my questions along to this team of doctors. Ultimately though, I guess this decision rests on my shoulders...
Becky xx

[bmcd]

Becky,

Again, I'm am so sorry for what you are going through...I am fervently praying that whatever your decision is, that positive outcomes are the result.  

God Bless,
Bob

[gah_70]

Becky,

This is just so unfair!  No one should have to make a decision like this.  I think your doctor is being very cautious and wants to offer you the best possible outcome, and I, for one, am thankful.  I think about you daily, and like Bob, am praying hard.  If there is anything else we can do for you, please let us know.  Lot's of love is heading your way, as always.

Gail

[ChrisP2236]

I am so sorry you are dealing with this and agree that your dr has your best interest at heart. You have been through so much and my prayers are with you for a successful decision that gives you many more years.  Best wishes, Chris P

[TrudieC]

What a thorough and wonderful doctor.  He is even caring about your emotions by ensuring it looks good too.  Such heavy decisions and thoughts for someone so young.  Yes, looking at your photos you seem the picture of health.  Will be thinking and praying for you that this comes together well.

Hugs, Trudie

[Ramsay14]

Here's my two cents.  We're all pretty much buying time.  Think of what those five years could do for you!  There could be more treatment options discovered in that time, maybe even "The Cure".  I believe in my heart and soul that "The Cure" will come.  It's just a matter of when.  I pray daily that it will be soon, for all of our sakes.  It has to be soon!  

I think it's absolutely fantastic that this doctor wants the other surgeons present.  A team of specialists.  He sounds like someone I'd want doing surgery on me.  He sounds like a compassionate doctor as well.  He wants a plastic surgeon there!  The scar from my surgery looks like the doctor opened me up with a chainsaw.  Absolutely no respect for what I'd look like after, but I guess that's the least of my problems.  I just think that it is so kind of your surgeon to even think of the cosmetics.

[justscore]

Sounds like you are in good hands...........
I hope you get everything you deserve!  I pray for you all the time and hope that next week you get some good news.

Heidi

[lvfrogs]

Wow, Becky, so much to think about. I agree with everyone else, your doctor is trying to give you the best surgeons available and give you time. So much can happen in 5 years.  I would write down all your questions because you know how it is when you get to the doctors office, I forget everything. I am sorry you have to make such a big decision but praying and hopeful for you. Hugs, Colleen

[JC145]

I agree with Ramsey.  Evidentally, you are in for bigger troubles if you don't have surgery.  I have a friend who went into surgery to remove 3 tumors that did not respond to any chemo.  It was a whole vertical surgery.  When they opened her, they found spots on her diaphram and a coating on her liver.  After about 6 weeks to heal from that surgery, she is being operated on again .. this time from right to left .. to fix the other problems and a gastro surgeon will be there, too.  Now she will have a hugh cross on her abdo.  I am so very impressed you will have the battery of surgeons there .. each able to do the specific surgery required .. at one time.  I wish you good luck and God's blessings.  Hopefully and prayerfully you will recover well and have those extra years with Tybear.  New chemos coming all of the time.  Think of you all of the time ... (( hugs )) Judy

[fungirl1011]

Wow Becky, they sure did put a lot on your shoulders.  I think  your doctor is just being very cautious and wants what is best for you.  I am so thankful that he is not just doing this surgery blind.  Please know that I am praying for you.  You are never far from my thoughts.  I know I am a very long way away, but if you ever just need someone to vent, please give me a call or text or e-mail me.  You have a great support system at  home, and a terrific one here.  We love you so much.  Please keep us posted.  Lots of hugs and love, Kasie

[ireneo]

More doctors make it sound even scarier yet it's good to know that only the best would be there for you. Not just one or two trying to do what they can. Having a specialist for each body part means you have the best outcome. Some tough decisions, a lot to think about but see what more you can find out at the next appointment. Have your questions ready. As always, you're in my heart and prayers.  
irene

[Burnzie]

Becky,
I read you latest thread and can't believe how much has been thrown at you.  I am thinking you must feel totally overwhelmed.  I have been feeling overwhelmed lately with my situation and it is not as complicated as this.  Whenever I can't make plans or see a future with enjoyment, then the doubt has time to creep into my head. I may be way off base here, but I think you may be so bogged down with unanswered questions right now that  its hard to get direction or  keep your positive focus.  Yesterday I got some clarity in the direction I'm going but it took weeks to get there.  My point is that if we can just take baby steps sometimes and let things unfold as they are going to, the future takes care of itself.  It is such an easy thing to say and so hard to do.  I have to be reminded  of this whenever new problems arise.  It sounds to me like your Dr really cares about you and wants to be very thorough in  consulting other surgeons about your case.  He is trying to make the best plan possible to attack the problem.  That, in itself, is a positive.  Sometimes we just have to trust our Drs and hand over the control to them.
When I was first diagnosed I remember my Dr telling me that they, the gyn-onc team would manage the "ship" in this voyage, meaning my body, and my job was to managing my "head".  I think you can apply this advice right now.  Your job is to manage your "head", the best way that works for you.  Its easy for our minds to think too far ahead to the "what ifs".  This takes so much energy.  Take that little boy of yours and do something fun for both of you today and put some joy in your brain. Nobody can take that opportunity away from you.

Karen xo

[jane65]

Dear Becky,
All I can add is my prayer for your strength in choosing the right medical decision for yourself.
God love you child, you've had to deal with so much in your young life.

healthy hugs,
Jane

[nyc lady]

Becky whatever decision you make will be the right one for you.  Let's hope that the doctors are able and willing to give you a choice.

My thoughts are with you!!!!  ALWAYS.

Love you.
Pam

[justscore]

Just wondering how you are feeling.......
Heidi

[crecco]

  Oh Becky, I know how hard this all has to be on you. So much pouring through your mind. 5 Drs? You should feel honored! It sounds to me like you have a wonderful Dr who wants to get you through this and by doing so will call in anyone that he thinks can help.
  Keep your thoughts positive that if you go through this surgery then it will work. I know that the thought of a bag is not pleasent but it is better than the alternative. And stop that thinking about something terrible happening. After all you will have 5 Drs there to make sure that nothing does happen. You and I have been through a lot together so I know that you will come through this just fine. Start thinking nothing but positive thoughts and know that we are all right there with you.
     Love Chris

[lactac1224]

My prayers are with you!  I am glad you have so many doctors there to help you.  I hope that there is a silver lining in this for you!

Laura  :)