Topic: Had appt w/ Surgeon Today in Prep for SBRT

Hi Everyone,

I was at Memorial Sloan all day today.  Met with the surgeon and then had surgical pre-testing done.  An exhausting day!!!  Here's what's happening...

The radiation oncologist wants to have a "spacer" put in between my stomach and liver to prevent the SBRT from hitting my stomach and other clean organs.  I met with the surgeon today - Dr. Sam Yoon at Memorial Sloan.  He actually invented this procedure when he was at Mass General in Boston.  He came to Memorial Sloan last year.  The procedure involves putting this "spacer" - which is made from cadavers (ugh!) - in between my stomach and liver - it will also protect my bowel.  This is a relatively new procedure and has only been done on about 30 people - with good results in protecting the clean organs.  The "spacers" will stay in me even after I'm done with SBRT.

The radiation oncologist also wanted the surgeon to put gold seeds in the tumor at the same time (this would further help with hitting the tumor directly with the SBRT).  But the surgeon told me today he doesn't think he'll be able to get the seeds to do that.  He said he is capable of putting the gold seeds in but the interventional radiology area do not like the gold seeds leaving their area.  They like to put them in themselves in their area.  Supposedly, these seeds are very expensive and if they're inserted in the operating room then interventional radiology does not get reimbursed for them.  The surgeon said it's a lot of red tape - he didn't seem to be happy about it but doesn't seem to know any way around the bureaucracy.  So I will probably have to have a procedure to have the gold seeds put in after my surgery for the "spacer".

Anyway, I'm having the "spacer" put in on Monday, 3/25 and will have to stay in the hospital for a day or two.  The hope is to do it laproscopically but sometimes that's not possible if there is a lot of adhesions (which I have) from other tumors that have been radiated.  So it's possible he may have to make a larger cut to put the "spacer" in and then I may have to stay in the hospital a little longer.

I'm hoping this will help.  I'm doing pretty good right now with very little pain but I'm afraid something will happen with the surgery (like infection) and I'll be made worse. 

The surgeon said that he's seen the SBRT work with good results but their is a high significance of tumors showing up in other areas.  Didn't sound very optimistic but I'm trying to stay positive. 

Background for those who aren't familiar with my situation - I was diagnosed with adenocarcinoma - unknown primary in 8/2011.  Had 12 cycles of chemo - 5-FU, oxaliplatin and leucovorin from 10/2011 through 10/2012.  In between that I had 28 radiation treatments in Jan & Feb 2012 (no chemo while I was getting the radiation).  In 10/2012, my scan showed that the chemo wasn't helping any so they switched me to gemcitabine.  Started gemcitabine in 11/2012 and was scheduled to have it 3 straight weeks then off a week then back on again for 3 cycles.  Unfortunately, I was never able to get 3 straight weeks in because my counts would go so low.  They tried lowering the dose but my counts still plummeted.  Also, the tumor wasn't shrinking so this was stopped the end of January this year.  This is when they decided to try a different kind of radiation.  Since I already had traditional radiation, I wasn't a candidate for that because this tumor is too close to the tumor they radiation last year - so it would be too much overlap of the same area.  So now I'm hoping to start the SBRT soon after my surgery next week and hoping it will be successful!!!

Sorry for rambling but I think it helped me to put it all in perspective.

Mary

Re: Had appt w/ Surgeon Today in Prep for SBRT

addendum to my previous post...forgot to mention that I had MRI and PET scan on 2/14 and that is when they found my primary site in my bile duct and changed my diagnosis from adenocarcinoma - unknown primary to cholangiocarcinoma - Stage III

Mary

Re: Had appt w/ Surgeon Today in Prep for SBRT

Mary, the most important thing to remember is that this procedure is going to give you a much larger chance at survival especially since it has been successful before. Try not to worry about what may be, as there is nothing to be done about that now and you don't need to waste that energy. Ms. Smith (cadaver) will be so happy to take part in this and feel useful once again!  Mmmm your gold seeds must be different than what Teddy had for Cyber Knife, he was in and out the same day and it really was not a big deal. I will be sitting here on pins and needles to hear how everything went. Wishing you the very best and please try not to worry.I know, easier said then done!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Had appt w/ Surgeon Today in Prep for SBRT

Thanks Lainy.  I'm hoping to be emailing from my hospital room after the surgery on 3/25!!!  ;-)

Re: Had appt w/ Surgeon Today in Prep for SBRT

AND I am counting on that!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Had appt w/ Surgeon Today in Prep for SBRT

mcwgoat....thanks for keeping us up to date and please know that tons of good wishes are heading your way. 
SBRT - Stereotactic Radiation may be delivered by different devices, but basically all do the same in that focused radiation beams targeting a well-defined tumor. SBRT may be called:  Axesse, CyberKnife, Gamma Knife, Novalis, Primatom, Synergy, X-Knife, TomoTherapy or Trilogy.
The gold seeds you are describing (3 to 5) are implanted in the tumor as markers which are then vsisible by x-rays.  It is to track the tumor during radiosurgery.  Approximately 1 week after the seeds are placed, a custom mold holds the body in place during the radiosurgery.  The computer outlines the plan according the patients’ anatomy and the shape/location of the tumor.
From what I have learned organ damage is one of the major concerns with radiation hence the new approach of using the spacer sounds really promising.
Know that a tidal wave of good wishes is heading your way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Had appt w/ Surgeon Today in Prep for SBRT

Thanks for the details Marion.  I'm just hoping they can put the gold seeds in because if they don't I'm thinking the radiation won't be as well directed to the tumor.  I'm also concerned about infection and staying in the hospital after the surgery for the spacers.  So much to worry about.

Re: Had appt w/ Surgeon Today in Prep for SBRT

Hi Mary,

3/25 is a great day. My Dad's birthday!! My daughter, Lauren is having her big surgery on 3/26, so I will worry right along side you!. No, really I am hoping and praying all goes well for you. You have the surgeon that invented the procedure so that is very promising. I wish you nothing but the best.

Bless you,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Had appt w/ Surgeon Today in Prep for SBRT

Hi Mary,

Thanks for letting us know how everything went and for the SBRT. I wish you every success with this and will be keeping everything crossed for you as well. And of course, loads of positive thoughts are heading your way as well!

You have no need at all to apologise for rambling so you ramble away! And I am certainly looking forward to hearing you ramble from your hospital room on the 25!!! smile

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Had appt w/ Surgeon Today in Prep for SBRT

Pam and Gavin,

Thanks so much for your kind words.  It really does help to have people that know what I'm talking about.   All the info can get so confusing for me so I understand when I tell family and friends that they look a little dazed and confused!!!

The prognosis doesn't sound too good for intrahepatic cholangiocarcinoma - stage III.  The surgeon I met with yesterday said the SBRT is successful in killing the tumor but then there is a high significance of tumors popping up in other parts of the body.  That's really scary.  I guess, because I've been doing and feeling so well, I find it hard to believe it can get so bad.  I'm starting to lose the hope that I have, especially when I read some of the posts of how people decline so rapidly.

Pam,  I'll be thinking of you and Lauren on 3/26.  I hope the surgery goes well.  Please keep us informed.  Such a young girl to have to go through this.  My heart really breaks for you.  Stay strong!!!

Mary

Re: Had appt w/ Surgeon Today in Prep for SBRT

Mary, please remember that there are still options! Another opinion cannot hurt anything. We have had members who had the CC popping up in other places, changed Chemo and many pop ups disappeared. I know when you hear the term planting seeds you think you have become a garden! For Teddy it was actually no more than receiving an injection. He had said it was like getting a flu shot and like I said he was home right afterwards. Remember that no 2 people are exactly alike which means not all decline at a rapid pace. We even had someone on here (can't think of the name) who chose no treatment and the last I read had survived 4 years already by doing nothing! You have enough to deal with without worrying about time frames and etc. I prefer to think of it as being realistically optimistic. Wish I could come out there and take it all away!
                                         I asked for strength.
                     God gave me difficulties to make me strong.
                                         I asked for wisdom.
                              God gave me problems to solve.
                                        I asked for prosperity.
                         God gave me brawn and brain to work.
                                         I asked for courage.
                           God gave me dangers to overcome.
                                         I asked for patience.
            God placed me in situations where I was forced to wait.
                                         I asked for love.
                     God gave me troubled people to help.
                                         I asked for favors.
                               God gave me opportunities.
                               I received nothing I wanted.
                             I received everything I needed. By Aaron Hoopes

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Had appt w/ Surgeon Today in Prep for SBRT

Thanks Lainy.  I remember this poem from years ago.  Thanks for reminding me of it.  It brings peace to my heart.

I had three opinions back in 2011 when I was first diagnosed.  They were all pretty similar so I chose Memorial Sloan Kettering because of their reputation.  I believe I'm in the right place.  It's just when I'm presented with a new treatment, because the previous one isn't working, I start to lose my hope.  The radiation oncologist is hopeful that the SBRT will bring positive results.  The surgeon I met with yesterday was very cut and dry.  I think most surgeons are like that.  Just made me feel doubtful.

Mary

Re: Had appt w/ Surgeon Today in Prep for SBRT

mcwgoat...I have taken the approach to err on the side of "hope." Not everyone will have an infection and you might just want to count yourself in with that group of patients.  Your oncologist has reason to believe that it will work - stick to that.  You are doing everything right, mcwgoat and you have a great team of physicians working with you.  Now, how is that for "hope?"
Hugs are heading your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Had appt w/ Surgeon Today in Prep for SBRT

Mary, I see it also as optimistic. Just think about it. So many others cannot get treatment. Not because it won't work but the CC was discovered too late. This is an opportunity not afforded many and you are picked! And, you have one of the best  teams in the World! Plus all the love from this Board, I mean, REALLY girl, how can you miss. I know you didn't mean to, but you cracked me up with your remark about the surgeon being cut and dry! Atta champ, always leave them laughing. Sorry, I can find humor in the most weirdest of circumstances! And remember we are all with you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Had appt w/ Surgeon Today in Prep for SBRT

Lainy & Marion,

Thanks for such kind words - it really does lift my spirits to hear such warmth come through my computer!!!  ;-)

Lainy - sound like you have the same sense of humor as me and my daughter.  After we met with surgeon yesterday, and were waiting for out next appt, we sat there laughing about a few things the surgeon said to us.  He did not sugarcoat anything!!!  But we are straight shooter people to so we appreciated it.  Also funny how confident surgeons are.  But as my daughter said to me - would you want a surgeon who wasn't sure what he was doing???!!!  Have to keep the humor - that's what gets us through this all!!!