Second Opinion with cancer? My take on the matter.....

I recently read this posting on ACOR cancer site:
-- My husband was first diagnosed with carcinoid cancer > in 2000 . .......which revealed that > the cancer had metastatic to the liver. We were > told that he has non secreting tumor and that is why > the test result were normal. ... T... second opinion form the Cleveland Clinic.

This is a fundamental question and one which I had problems with at the beginning of my cancer. I tired to respond to the individual on the site which was too large for the site and never posted.....so I am posting it on this site. I hope it helps.....

Btw, I am listening to a webinarie by "An Evening With Bernie: Be Empowered Through The Holidays"...interesting but too be honest, I don;t believe much about "thinking about myself being cured and badda bing, done"! Maybe on Meyers Briggs personalility test I am rated as a strong "I S T J" (for those that know about this) and have a hard time with this type of thing...here's a quote from the webenaire "you are what you is you aren;t what you aren;t what you is" or something like that......sorry but it does not work for me.....black raspberries and pazopanib 800mg is "what it is" in delaying with the beast within....not a mantra and good thoughts....sorry sir....there are some good thoughts on the discussion--manage your disease! Some people will love this...I wish them luck and as he says "give it a chance"....

In any event, here is my response to the question on the lady about second opinion when cancer comes into your life:

Sue:

I hope this is not too long a message, probably is,
but you, and your status and question are where all
of have been sometime in our life......."you have
cancer and you have to do X right away!". It’s a
pretty horrible time in one’s life, and something we
will never forget!

I live in the midwest. Although Cleveland
Clinic does not get a lot of press relative to
carcinoid, it is an excellent hospital, especially
in the areas of surgery, specifically with kidney
surgery (they were one of the first to do nephron
sparing surgery). There are doctors that treat
carcinoid at the clinic, and surgeons who are very
good. That is very important in your fight! The MD
surgeon you are considering using, Dr Allan
Siperstein, is well known as an excellent liver
surgeon. He is a good choice Sue.

Relative to a second opinion, you should strongly
consider this in your case..... I am a firm
believer, a converted believer, in second, and third
opinions, even if you have a carcinoid
specialist....... TAKE RESPONSIBILITY FOR YOUR DISEASE, TREATMENT AND YOUR TEAM.....its part of good medical practice
and management of the disease and this should be supported by your MD’s.

In Ohio, there are a lot of people who see by Dr
Manisha Shah, an oncologist who works in James
Arthur Cancer Center in Columbus Ohio. She
specializes in carcinoid/NET tumors. She may be
someone you could visit prior to the surgery, just
to make sure the plan you currently have is
consistent, and aligns with her opinion (she may
send you to the OSU surgeon for further review).

Also, please note, I went to a carcinoid expert, and after 2 years and 2 surgeries, I
decided it was time to start getting second and
third opinions, when a third operation was suggested
3 months after the prior one.
This disease is very rare, and therefore, approaches and treatments
aren't as standardized as in other cancers. Also,when you go off for a second opinion, don't be surprised that you may get a different
approach/opinion, even from the carcinoid experts
themselves. At times, there are many different ways
to get at the "beast" in your body- surgery,
surgical techniques, systemic treatment, approaches,
etc, and you will receive different opinions, even
within the carcinoid circles themselves.

As an example, in my specific case, I went to four
of the top carcinoid MD's-- in 2004 for opinions. To
my surprise, I received, more or less, 4 different
options for the treatment/surgical for my
very rare renal carcinoid (to be clear, most of the
differences were in the area of surgical
techniques-- what to operate, how much, and use, or not to use, onco lab (some believe, some don't), Sando during surgery, use of neo probe during surgery (oh I wish they would have used this!) and lastly, whether to operate or not).
There was nothing wrong with different opinions, as all are experts, and have
specialties and techniques which have worked for their particular practice and experience in the past. However, to note, it can become very confusing, and terribly difficult, when you are trying to choose the right option.....The good part
about all this is, that you get options, which beat NO OPTIONS! But be prepared and bring notes and pre writteen questions- who what where when why and then ask again.....and maybe a third time....ask cacinoid questions to the surgeons (STUDY) to see how much they know--- for example, I asked the question "if the Octreoscan lights up, and nothing shows up on on CAT or MRI, how do you handle it???--> Dr in LSU was all over this and his response and procedure was very good, the MD someplace else needed to see something on CAT/MRI or they did nothing......(so that tells you "what"? Dr. in Nola knew carcinoid and tools, & the ones I was using not as much....therefor, my 2 surgeries were not as effective as they should have been, and I lost out on options and readings the Octreoscan was giving us.....DO YOU GET IT!?!?!---> STUDY AND DO YOU HOMEWORK, ASK QUESTIONS, ONCE YOUR SATISFIED WITH THE TEAM, THEN SUPPORT THEM AND LET THEM AT YOU!

What is 100% important, and something you have to verify, then revivify, is the quality, knowledge,experience and understanding of the surgeon(s) which
the carcinoid oncologist is sending you to for surgery (if they recommend surgery).
What you should be looking for is:
1) The experience with carcinoid surgery for the surgeon and his team?
2) Knowledge of carincoid surgery, and how they plan leverage the tools and scans during and before surgery (for example, do they know what an Octreoscan is?). Do they understand and work with an Octreoscan-- what if something lights up in the
Octrescan and does not show up in CAT or MRI (as what happened to me?)-- what are they going to do? Have they worked with tools such as neo- probe (sic?) during surgery, etc? Will they give you a Sando injection prior to the surgery?
3) What is the relationship between the carcinoid oncologist and the surgeon(s)? Do they communicate and how well? What you would love to see happen, is
to have them all talking your case in front of you, as a team, with the x-rays and pictures in front, and brainstorming back and forth in a collaborative
and supportive, team oriented manner (I saw this happen in Kenner and Columbus).

Sue, you will want the experienced carcinoid oncologist working in "lock step" with the surgeons and his team in all areas, and they’re somewhat aligned on procedure, scan and test data, and have addressed what they will do. To note, in some
cases, you won’t get all the answers as the surgeons may have to "open you up" and get in there to see exactly what is needed. In the end, it's the surgeon
who has the “r” for you, once you go under, but, you would like to see good, effective teamwork between them and the carcinoid oncologist.
4) Finally, after surgery, what are plans to be seen going forward? You need to have a carcinoid oncologist who will be seeing you long term.....I believe this relationship is very important and will probably become a lifelong one (be prepared to buy them a friendship ring or bracelet or something...:). Make sure that once the tumors are addressed via surgery, you then have a very, very good carcinoid
expert working with you going forward--- he will then take over and play point on pathology interpretation, lab tests, set up on-going exams and markers, other scans, additional surgeries and systemic treatments options, etc. You will become
joined at the hip with the MD.

Final thoughts on a second opinion (I promise!), there are some oncologists that will do a second opinion remotely-via mail and PC- you send them your
scans, reports, everything, and they will call you with their opinion (and your surgeon). Dr.Warner in New York, does this (did it for me). Many others do
it also. Also, make sure the carcinoid MD that you eventually select and use, will work with your regular local oncologist. I live in Ohio and we do not have any carcinoid experts in the city. People around here mainly drive to Columbus
and see Dr Shah. I have seen her also. I am currently on an experimental treatment, and travel to Houston, Texas MDAnderson CC monthly, and work with Dr , and locally with Dr. With this disease, traveling becomes part of your
life, and part of the "cash burning" which comes with it. (btw, I am preparing a "bail out" funding plan which I want to present to congress to see if I
(we) can get some type of relief for our disease treatments....the money spent monthly in battling this disease is large……and our government seems to
be handing out cash to folks in need--- so, just imagine, if I (and others) cannot continue treatment and travel due to cash problems- what happens to the
airlines, airports, rental carts, hotels, hospitals,scan and lab techs, nurses, MD's, pharmacy companies, etc, etc, the list goes on……mind boggling. So I, and many others, should be due something, I think to ask for relief and help from the US Government!
If you decide on seeing Dr Shah, I understand she will work with your local oncologist on a going basis, so seeing her prior to surgery would be a prudent thing to do. If she and her team are aligned with the surgical option and approach, I
think the surgeon at Cleveland Clinic (Siperstein)is an excellent choice, you can ask her..

This decision and procedure you are about to undertake is one of the most important decisions you will ever make (#1 is your choice of a spouse, I believe!, or is it the purchase of a flat screen TV?!?!?:)).

If you have carcinoid, you have time, so use it to get that second opinion from someone on the top of the carcinoid list of (e.g. Dr Woltering, Dr Shah, Dr Warner, etc). Tell Dr Siverstein and your local MD what you are doing ahead of time. The surgeon and MD should be very supportive. He and the oncologist you are working with (or plan to work with) should then communicate during and after your appointment,
as to surgery, procedure and next steps-- especially if something is “funky” – e.g., on the Octrescan, and not seen on MRI and CAT, with the second opinion doc.

You also noted "you are willing to travel anywhere",so in my humble opinion, you should get in contact with Dr Woltering in the Kenner LA and have him and
his team look at your files, records, scans and serum studies and get an opinion and action plan from him and his team. He would be the one of the best options, especially if they can see you between now and Jan 5, 2009. He is a great choice 1) because his office in New Orleans and the food is terrific) 2) his background
is a surgeon so you get 2 for 1) 3) He (and Dr Anthony in his office) are one of the best in the NET/carcinoid area and works with some top surgeons in his office.

Once the surgery is over, you can then convert him, and his office mates, into your primary carcinoid team (albeit long distance, but everything is travelable, unless you are going to Cuba- which one day I want to visit the place of my youth, and also
investigate this scorpion venom treatment...!, or North Korea, which I would also love to visit, but afraid that I may get shot if I walk down the wrong beach, innocently betraying the "Great Leader's" trust in staying on the appointed tourist trail....)

Dr Woltering, and a number of other carcinoid experts (Dr Shah included), should work with your Buffalo area oncologist going forward.

Finally, take care and try to relax (I hope you are not in pain)..... I went through the same thing when it happened to me....we heard we have to operate right away, no time to waste, I needed to operate right now, no time to waste "ahora mismo", I was
told......... It was a very nerve wracking, unsettling and I was lost and confused, and I didn’t even know I had cancer then. I never got a second opinion, and I should have, I made a big mistake.

Sue, one of the best things you have done is you and your husband have found the ACOR site, in addition there are a number of carincoid foundation web sites
(link on my blog), which you should start getting in to and reading and learning about this thing right away. You have a found a site (ACOR) which immediately gives have access to 800 or more friends and supporters, to help your battle ahead (some are battle hardened, "experienced", veterans a lot of experience and input with this disease). You will make it.........and you started off right by asking the right questions and have a game plan. I did not have this option when I started.

Best of luck and sorry for the long write up......finally, and BTW, your local area
professional football team (Bills) has really taken a dive........! What happened???

Steve Murrah
http://renalcarcinoid.blogspot.com/