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Second opinions

manwithnoname
Posts: 393
Joined: Jun 2012

People are often told that they aren't candidates for surgery; 2 months ago we reached a critical point, tumour causing blindness and more, our surgeon didn't want to even try, second opinion said just radiate for palliation, our original surgeon decided to try after pressure, alas he failed and caused severe memory loss and also 'missed' a tumour.

We went for a third opinion, it was a knife in the heart, he told us to 'stop chasing surgical rainbows' (exact words) and radiate what disease was left then 'enjoy the short time left'.

So we got a fourth opinion, the surgeon said he could remove everything (for a fee) so we borrowed a chunk of cash and flew 10,000 miles. The surgeon removed all the 'inoperable' tumours. 

We are still in the fight, bruised and battered and some hormone problems, but fighting.

I guess the moral is get an opinion you like and some surgeons are way better than others.

 

 

 

thxmiker's picture
thxmiker
Posts: 1224
Joined: Oct 2010

We are happy that you found a good surgeon, and are on the mend!  It can be a trial to find good doctors.

 

I had the top surgeon at MD Anderson tell me I had little hope and to get my affairs in line.  This is the Head of the Department and top Colon Surgeon at MD Anderson!  WOW   We went to see Dr. Lenz at USC.  He advised on getting the surgery through UCSD Dr. Lowey.  My surgery went well.  They did not get everything, but they were positive on my outcome.

 

What a difference between Docotrs that care and are really competent!

 

Best Always!  mike

manwithnoname
Posts: 393
Joined: Jun 2012

"What a difference between Docotrs that care and are really competent!" 

Yeah we never realised till we hit rock bottom, and after Australia we see how poor our care has been.

jen2012
Posts: 1206
Joined: Aug 2012

Thanks for the reminder. How is your boy? You are living my biggest nightmare....I sincerely hope this surgery did the trick. Where did he end up having surgery? Are you back home?

manwithnoname
Posts: 393
Joined: Jun 2012

Charlie Teo in Sydney did the op. check him out on youtube, the guy is a star! we are back home and making a plan for the other tumours. 

It really is a nightmare but after talking to some parents we actually feel lucky.

jen2012
Posts: 1206
Joined: Aug 2012

Just watched one of the youtube videos...curing the incurable. Very impressed....glad you found him. Not only is he a confident and amazing surgeon but also seems like a good guy who cares about his patients. I liked how he said that he typically removes himself while doing surgery but if it gets to be too much he thinks about who he is working on and keeps going. He seems humble about the fact that he can do what others wont try. He also has a sense of humor...which serms lacking in many surgeons. Amazing person!

annalexandria's picture
annalexandria
Posts: 2254
Joined: Oct 2011

The best advice I ever read was when someone on another forum said that when it comes to surgery, you want a surgeon with a certain attitude (he used the words "cocky" and "cowboy", I believe).  When you think about what a surgeon actually does, especially a brain surgeon, you can see why attitude is so important.  They have to possess a cool courage that is beyond most of us.

"Still in the fight"...some of the best words ever.

Hugs to you and your boy~AA

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

It seems that too often a surgeon may not know how to deal with something so then they tend to paint things with a very broad brush.

If there's a will there's a way. 

-phil

Annabelle41415's picture
Annabelle41415
Posts: 4262
Joined: Feb 2009

I'm so glad that you kept pushing on to get someone to help you.  Wishing the best for his further removals of the remaining tumors.  Hope his recovery is going well.

Kim

traci43's picture
traci43
Posts: 439
Joined: Jul 2007

That's good news.  Tumor removal is the best thing.  Congratulations.

tanstaafl's picture
tanstaafl
Posts: 969
Joined: Oct 2010

Rejected several times, practice, persistence and logic are key.   One surgeon who does it, or really can do it, beats a dozen pretenders that can't/won't. Our experience is that the surgeons are too self protective these days.  They are often far more worried about maintaining their  hospital privileges than even small risks on that borderline patient with some decent prospects. 

That said, an alert patient who "solves" 1-2 of their surgeon's concerns can get the worm.   In our case, these concerns were likely uncontrolled metastasis and possible involvement of the aorta (wrap around).  By quoting a radiologist that the encapsulation and aortic separation looked okay, that burden was taken off an overcautious surgeon.  As for mets, we could demonstrate by scans, massive bloodwork, prior immunotherapy results and cimetidine/PSK etc medical literature that mets were far less likely than usual.

Game on. 

-------------------

Thanks for letting us know what's up, Tony, and what it took to get there. 

manwithnoname
Posts: 393
Joined: Jun 2012

Op. 6 only happened because we agreed to RT (didn't do it) sometimes surgeons don't want to 'work' for nothing, need to walk them through the plan...

janderson1964's picture
janderson1964
Posts: 1613
Joined: Oct 2011

That is great Tony. I remember you telling me about the last surgery. I am so glad you kept fighting for your son. Your love for your son and percerverence is incredible.

manwithnoname
Posts: 393
Joined: Jun 2012

was a mistake, surgeon wasn't confident and it was botched, this surgeon was TOTALLY confident, still have tumors to deal with but at least we can breathe for a month Tongue Out

renw's picture
renw
Posts: 282
Joined: Jan 2013

Firstly congrats. I hope that it is a start down the right path.

My story with 4th opinions just happened today after I had all but given up. I had my eye on the relatively new ALPPS liver surgery. I was rejected by three surgeons, and all claimed I had no sufficiently big enough piece of  healthy liver to regrow from. Today after a series of chances and coincidences found a surgeon willing to do the procedure. Turns out he found a 7% chunk of healthy tissue in the left lobe close to an artery that he can work with, though in my case instead of a 2 stage procedure it will be 3 stage. I go under the knife in 12 days.

Makes me mad, because had I had this op few months back I would have been in much better physical condition and my chances of surviving the procedure would have been much improved. So yes moral of the story, most surgeons like to take the easy cases. Its rare to find someone good who is willing to go out on a limb for a patient. Others may just reject you without telling you that the true reason is that they are simply not comfortable pr familiar enough with a specific procedure.

tanstaafl's picture
tanstaafl
Posts: 969
Joined: Oct 2010

Thanks, Ren. (More dear readers about ALPPS and previous discussions here, from sdp and javiero)  I would still pack my PSK-cimetidine kit and try to get the surgeon to take preventable recurrences seriously.   Keep it coming on who/what.  I would hope that getting all that bad liver stuff out would mean that some immune and chemo therapies start to work again as well as a curative result.

My other big task for post-op is how to quietly arrange IV vitamin C soonest.   Once that starts, I don't worry about sepsis, MRSA, serum hepatitis, wound healing, morphine etc.  

traci43's picture
traci43
Posts: 439
Joined: Jul 2007

Ren - I hope this surgery really gets a handle on your mets.  Please keep us posted, we'll be thinking about you.  Very exciting!  Traci

Chelsea71
Posts: 1170
Joined: Sep 2012

Great news Ren.  Will be interested to hear all the details.  It is unfortunate that this was not available to you earlier, when you were feeling stronger.  Very exciting news. 

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