CSN Login
Members Online: 8

no surgery

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

They fkund 3 more spots on left chest wall so will not operate. What a waste of time and money.

jen2012
Posts: 1229
Joined: Aug 2012

Damn!! Im sorry Jeff, I know you must be very disappointed. So whats the plan to get you to surgery?

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

There is no plan.

LindaK.
Posts: 323
Joined: Apr 2013

I'm so sorry you got this news today.  It's so disheartening to hear.  One more hurdle to get over.  I can only imagine how you are feeling. 

Linda

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

All I can think about right now is all of the time and money I wasted in the past three weeks.

jen2012
Posts: 1229
Joined: Aug 2012

No use looking back! It is what it is...one day at a time...and all of those other stupid things we say. Oh and cancer sucks!! Really really sucks. Someone who has fought this for as long as you have should get a break!

How have you tolerated folfox and folfiri in the past? When do you see the onc?

You know you have many prayers and positive thoughts coming from us.

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

Thry were both hard on me and I see the onc tuesday. I cant wait.

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

you have had so many emotional highs and lows here lately.

I do not know if another opinion is wise regarding surgery or if the general consensus will be that it is not in your best interest to do surgery on the lungs with evidence of systemic cancer elsewhere. But, perhaps you should continue to seek other opinions.

I assume that the suggestion will be to treat your cancer as a chronic condition with chemotherapy and get yourself into periods of remission while still enjoying a quality of life. Remember, the longer you can achieve this, the greater the chance new and different treatment options will become available to you.

You have spoken here of your faith which I know must be surely tested during a time such as this ... dig deep in your heart to what sustains you.  Hold on.

Peace. ~ Cynthia

annalexandria's picture
annalexandria
Posts: 2280
Joined: Oct 2011

I hardly know what to say.  F'ing cancer.  I can't imagine the emotions right now, esp with all the ups and downs of the last few weeks.

I guess all I would wonder is this...do you feel like you are in the most experienced hands possible?  Is there any chance a different surgeon might take a more aggressive approach?  I ask this because someone I know who was in a somewhat similar situation had to go to three surgeons before finding one who would operate on her.   And it was successful, at least in the sense that she is still here three years later, although still fighting this horrible disease.

I feel like chest wall mets must be "drop" mets, as opposed to systemic, so it seems like surgery would still make sense.  If they can take up to 100 tumors out of a person's lungs, why not remove these if they are accessible?  I don't get it.

I'm just so sorry.  I hope there can be some more hopeful news down the road.

 

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

I got six disc of the scans from the hospital to shop around for a surgeon. Any one have any agressive thry know of that might take me on.

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

what if you assembled: 1) a document detailing your diagnosis, history, general physical health, etc., 2) a statement of the surgical treatments you are potentially seeking, and 3) your most recent scans and sent it to every major NCI hospital colorectal surgeon department heads?  

You could get the names easily of the head of the departments by going online and then even make a phone call to the departments alerting them that you would be sending this information to Dr. X.  

You could emphasize that you have no time to waste and thus you would appreciate consideration at their earliest convenience.

Just an idea ... 

Peace. ~ Cynthia

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

jeff for this latest set back i dont post much but i am keeping up with your latest battle,just please keep the faith no matter where your journey takes you....Godbless...johnnybegood

Phil64's picture
Phil64
Posts: 480
Joined: Apr 2012

Jeff, I'm really saddened to read this update. JBG is right. No matter what keep the faith. And Cynthia offers some good ideas. Look for all options. Surgery and/or chemo are both possible options still. I certainly don't understand this horrible disease but I also believe my vision/perspective is limited. I believe that there is a bigger picture where the trials we endure today will be seen in a different light. Love, light, strength, peace are what I pray for you today. Blessings to you and your family. 

Sincerely,

Philip

annalexandria's picture
annalexandria
Posts: 2280
Joined: Oct 2011

is at Georgetown University Hospital, in Washington DC.  But I'm sure that he's not the only one who is willing to take on cases that are challenging.  I think you should put this up at the Colon Club.  There are a lot of east coasters there who may have some good ideas.

I believe it was Brownbagger over there who said you want a "cowboy" for your surgeon, someone who will recognize that the dice needs to be rolled while there is still time.

tanstaafl's picture
tanstaafl
Posts: 980
Joined: Oct 2010

That damned spot count and extrahepatic disease business for resection is treacherous but highly variable. This moment iswhere the fight true starts.  Our job is to find some Babe Ruth, perhaps only locally known, playing in Pittsburg, Europe, Asia, So America or where-ever if necessary.  Hopefully you can find a thoracic team like Rolle that can deftly handle more spots than your drs so far.

Our reaction to this Dr No situation was to start a rolling barrage of visits, international emails, and opinions, SBRT (for us, but whatever possibilities) vs surgery.  Local 1st line of oncolgists were slavering over chemo even though they only expected a few months net benefit for a big para aortic mass; the first 3 surgeons were No, No and No.  Probably too big as CT imaged for fully destructive radiation, the locals were still interested IGRT - worse, the true size was a congomerated cluster twice as large as imaged.    

Step 1 Loaded wife to with immunochemo until as near to surgery as possible.  I found a number of Japanese papers to support 5FU based drugs immediately before/during/after CRC surgery for safety and net benefit.

Step 2. Find a surgeon willing to credit the possible anti-metastasis benefits of cimetidine, celecoxib, oral chemo, etc AND use it as close to surgery as possible.  Because of the location difference (lungs), wound risk and chemo timing may be a little different, but don't fooled by the ultraconservative cover-myself numbers like 3-6 weeks.

Step 3. get stamped for refusals on radiation and "their" chemo for surgeon's file (s/he was well informed and turned them down). 

Step 4. implement LEF (pre)surgery protocols including wound repair nutrition, remove excess vit E etc for bleed potential, get to satisfactory PT and PTT. 

Step 5.  Day after surgery my wife was fit enough for immuno oral chemo.  

The average doctors stay home and suck or break wind.  And that's ok, every one needs to honor their limits.  It's the hexing or discouragement that their best is everyone else's limit too, that boils my blood.

Cathleen Mary
Posts: 609
Joined: May 2011

Jeff, I am sorry that you have yet more to deal with....certainly isn't a fair disease. As others have said, because the doc doesn't have a plan doesn't mean that you can't. Getting 6 discs of scans is a great sign to me that you still heave plenty of fight and won't settle for a limited opinion. 

I have been treated at MGH. Although I have been lucky enough not to need a super aggressive approach, many I have met there have and have been quite pleased with the care and the willingness to look the through a wider lens. My care there is excellent.

Prayers and best wishes as you discern the next steps and for the boldness to move forward.

hugs,

Clare

Luckygirl2
Posts: 308
Joined: Mar 2012

Prayers coming your way.

 

Debbie

lp1964's picture
lp1964
Posts: 862
Joined: Jun 2013

Sorry to hear the disappointing news. I wish you to have the strength to go on and find the best possible solution for you.

Waiting to hear some better news from you,

Laz

serenity101's picture
serenity101
Posts: 81
Joined: May 2013

A last-minute "no" is the worst kind. I hope you find the doctors who can give you the best possible outcome.

alexinlv's picture
alexinlv
Posts: 194
Joined: Jul 2010

I am so sorry! I've been praying and hoping for the best for you! Keep up the good fight.  You are an inspiration.  My prayers are with you. 

lilacbrroller's picture
lilacbrroller
Posts: 308
Joined: Jun 2012

Geez. I'm so sorry for you. I've had less than stellar experiences with surgeons myself, and have come to the conclusion that they fall into two categories. There are those that believe that most Stage IVs are hopeless cases and aren't worth the time and effort because they believe the final outcome will be the same - these surgeons will only operate if they believe that their work will cure the patient (very rare cases) or will make them more comfortable if debulking is needed or to obstruct a blockage.  Then the other category believes in prolonging life in as many cases as would benefit, knowing full well that a complete cure is not likely but that extending a person's life through a series of interventions is still OK and worth trying. How do you find these people??

I had an experience where I was sitting in a surgeon's examining room and overhead his conversation with my oncologist, and I remember him saying the word "life prolonging" in a really sarcastic way, as if he couldn't understand why I would want this and why he should waste his time on it.  I gave  him an earful after I heard this, and his explanation was that the "data" (based on people 50 years and older, which I am not) showed low life expectancy for cases like mine, so why bother? (I was pissed, needless to say. What a total putz!) 

I totally understand the reality of my case, yet I read stories of people on this board and colon club who do find surgeons in the life prologing category who do perform piecemeal removal of their mets, in liver and lungs and other places, and these lucky souls have lived many extra years because of these staged interventions - combination of multiple surgeries, chemo, radiation, liver pumps, RFA, VATS, etc.  Cases worse than mine, cases better. I copy down names of doctors and clinics these lucky folks use and when my tumor load shrinks I'll be callin'. 

I wish that clinics and doctors would be up-front as to their positions on curative surgery, before you pay for a consultation.  If they're in the former category, don't even bother talking to them.

Good luck shopping around. If you find a good surgeon who will take your case, please post !!

Karin Laughing

 

Chelsea71
Posts: 1170
Joined: Sep 2012

Oh no!  I'm so terribly sorry to read this.  You must be completely devastated.  I'm confident you will work out something.  Have I mentioned how much I freaking hate freaking cancer?

herdizziness's picture
herdizziness
Posts: 3453
Joined: Apr 2010

So it's going to be harder to find a new surgeon to do it, but not impossible.

I had a lot of cuss words springing to mind when I saw this because I understand the deflating of hope you get when they turn you down, and I'd been turnd down a few times, and the last minute no's are like being punchd in the gut.  I hate that they do this, that it happens.

I'm there with you In spirit, fighting alongside.

Winter Marie

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

Thanks Marie I have never been more devastated in my life and I have experienced some tragedies besides cancer. Especially to go from no to yes and back to NO after I had completed pre-op the day before surgery.

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

I don't have any additional suggestions but just know I am sending prayers and positive thoughts to you and your wife.

lp1964's picture
lp1964
Posts: 862
Joined: Jun 2013

I'm just curious how they found 3 more lesions right before the surgery, they did not find before?

Laz

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

They did a last minute full chest ct.

annalexandria's picture
annalexandria
Posts: 2280
Joined: Oct 2011

over at the Colon Club...that's awesome!

That clinical trial that Maia referenced is pretty much my cancer experience in a nutshell, although mine was more or less inadvertant.  I wish that was standard practice for all patients.

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

Maia is amazing. Th trial seems perfect for me. I was denied for the exact reason that they are trying to prove wrong in the trial. I already sent the contact person an email in as sort of resume format and will follow up with a phone call today. I have also received some aggressive thoracic an liver surgeon names for both MDA and MSCC which I am in the process of contacting. I see my oncologist tomorrow. I emailed him this morning on what I am up to and asked for an extended office visit so I can hopefully get him on board with me and discuss starting treatment.

This has become personal with me and a challange now. Ultimately it is about buying more time but I am also determined to prove my old fashioned close minded surgeon wrong.

He didn't hesitate to operate 3 times when it was a single location but now changed his tune when it is not potentially curative surgery. I am still operable and by his own admission in great shape and can tolorate another big operation.

I just don't understand these doctors playing God with our lives. It should be our decision.

Phil64's picture
Phil64
Posts: 480
Joined: Apr 2012

I'm praying for you Jeff. And I wanted to thank you for posting your updates.  I am sure that many will be challenged in similar ways and for sure you are forging a path/example for others to follow. I pray that you will find surgeons and doctors that will help explore every possible way to fight this disease!!!

Light and Love to you today.

Phil

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

Thank you Phil. Your prayers are appreciated.

mom_2_3's picture
mom_2_3
Posts: 939
Joined: Nov 2008

Jeff, 

I was heartbroken to read of your recurrence.  I was praying that surgery would be an option and was so disappointed when I read that your surgery was cancelled.  I am glad that you are in control of finding other surgeons and I have a feeling you will find one who will perform the surgery.  One thing I have learned at MSKCC is that they don't ever give up.  I had a friend (who used to post online here) who had so many surgeries over 5 years, even with multiple locations.  The oncologist, radiologists and surgeons always kept finding another way to return her to NED.  I hope that the doctors there or at MDA give you the same opportunity.  If you need any assistance with MSKCC (ride from airport perhaps?  You could stay in NJ and I could get you into the city), please let me know.

 

Best wishes, 

Amy

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

What a generous offer Amy. I live in va but grew up in nj so getting around up there isnt a problem for me. I am planning on contacting mskcc and johns hopkins tomorrow or seeing if my oncologist will. Either way they are on my list. I heard back from the surgical trial in co and they agreed to look at my scans so I have my foot in the door at one trial in co and mda so far.

 

maglets's picture
maglets
Posts: 2422
Joined: Jun 2006

oh Jeff how very disappointing and upsetting and uneverythingelse.  I have not been here because I had the chance to come to florida for a wee break and have not been on line.  Jeff I can hardly tell you how close you are to my heart......I have always felt we were bound on the such a close path.....my heart aches for you ........I pray you can find some path through this mess....sending hugs dear friend........mags

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

Thanks. Your hugs mean a lot to me. I am a fighter or shall I say a warrior. I have so many avenues that I am exploring. It has become a personal challange. I start chemo next week in the meantime. My oncologist is on board with my thinking and everything that I do. I have some irons in the fire and am planning to add a lot more until I get the answers that i want.

fatbob2010's picture
fatbob2010
Posts: 397
Joined: May 2012

Jeff

Let me tag onto Phil's comment.  

I too had a last minute PET scan within 48 hours of surgery to rule out odd matastasis that may have been missed in the CT process.  The PET, my first ever, was the lynch pin in the process.

This actually worked in my favor since there were spots we have been watching for years that did not light on the PET.  

Let me encourage you to continue your battle and never give up.

For me the greatest regret would be to not fight till the last.  Much as the Spartans engaging the Persians.  The battle for the homeland taking precedence over personal safety and comfort.

Sorry for the rant...

Hugs of comfort, strength, and commitment to the fight.

Art

Nana b's picture
Nana b
Posts: 2982
Joined: May 2009

Sorry to hear this, my ONC also told me no surgery to the 3 lung mets while I have a spot in my liver. But if the liver spot is gone he will do the lung surgery.    He told me that I was on chemo for the long haul and this was the first time he didn't look at me in the eye, ever.  Radiation of the lungs is also a possibility.  Hang in there

 

CT Scan today, CEA should be in soon, it went up 7 last time after coming down hundreds at a time, hopefully i's a fluke

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

I hope the ct goes well for you. I am contacting more hospitals everyday. In fact I got an appointment to see Dr.Tomoaki Kato at Columbia University Hospital in Manhatten on April 4th and they just called and he is trying to move it up to next Thursday. Google his name if you get a chance. He has done some ground breaking radical first time surgeries and is well decorated for his work.

I have now contacted 7 hospitals in total. The trial in colorado is looking at my scans today and should get back to me this week.

annalexandria's picture
annalexandria
Posts: 2280
Joined: Oct 2011

what a long way you have come in just a matter of days.  You're a fighter, no doubt about that.

herdizziness's picture
herdizziness
Posts: 3453
Joined: Apr 2010

I have to chime in and say the same thing, WOW, respect to you and way to go getting what you need!  I am indeed impressed!! Very impressed!

Keep on going forward!!

Winter Marie

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

I had a couple of set backs last night after I posted. The clinical trial in Colorado and UC Sandiego both contacted me and said to go on systemic chemo to hopefully stablize the disease before they would operate. Samething my surgeon said. So it is not a no but three hospitals are saying chemo first. I start chemo next Wednesday. and I still have the appointment with Dr. Kato at Columbia U.

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

I heard back from Georgetown University. They said they can do Cyberknife on ALL of the spots so I have an appointment with them on the 17th.

I did a consult with a local hsopital for radiation. They have a different machine call Synergy S. He said he could zap all of the spots but could only do 2 to 3 at a time and then would have to wait due to radiation exposure before he could do more. The other good thing is it won't interupt chemo which i start next Wednesday. I am going to see if Georgetown U can set up an appointment for me to see an inverventional radiologis when I am there on the 17th to discuss RFA as well.

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

I changed the appointment at Georgetown until the 18th. This way I can see the radiologist and interventional radiologist on the same day to discuss a combination of RFA and SBRT. I start chemo on Wednesday.  Xeliri plus Erbitux.

maglets's picture
maglets
Posts: 2422
Joined: Jun 2006

sounds good friend.....well done......you go.....all best luck with the chemo

mags

annalexandria's picture
annalexandria
Posts: 2280
Joined: Oct 2011

How did chemo go?  

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

I was supposed to do xeliri plus vctibix. I didnt get insurance approval for vectibix until after I was done with infusion so will do next time. Xelox pills didnt come in yet either. I did get the irinotecan which knocked me off my feet like it usually does.

annalexandria's picture
annalexandria
Posts: 2280
Joined: Oct 2011

Frown.

I'm always shocked when I hear about people who get through it with minimal side effects.  Seems like most of us get hammered.  Hope you can get through this crap soon and move on to your surgical options ASAP!

janderson1964's picture
janderson1964
Posts: 1715
Joined: Oct 2011

I am amazed when people get through treatments relatively easy as well. It is just aweful for me.

YoVita's picture
YoVita
Posts: 556
Joined: Mar 2010

So impressed with your fight.  I hope you find the solution that helps you and doctors willing to help with your fight.  

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

 

Jeff, sorry to hear this news. Some of us old timers are being taken to task! So that's the plan moving forward?  Think about you and sending some prayers your way. Peace.

Buster...

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network