No more "Wait and See..." with Carcinoid...

Beware: I'm about to RANT...

I have made several posts in this forum noting that I have seen both Dr. Woltering and Dr. Warner, as well as several other local oncologists in my area. My point here is really only to spread the word... Both Dr. Warner and Dr. Woltering were AWESOME! However, I think I learned the most though from Warner...(he has been dealing with Carcinoid for over 40years). After not getting the answers I wanted from my local doctors, I just got fed up with it and made independent appointments with both specialists. The difference between seeing a specialist and general oncologist is HUGE. I can't express enough how this has changed my course of treatment. Of course, not all carcinoid cases are the same... that's why it's so important to see doctors who deal withs many carcnoid patients, not just one or two. From my expreince, I have found that the general gastro oncologists have a "wait and see" approach to managing carcoinid. Sure, I get it's an indolent disease (sometimes), but why wait until it gets worse to deal with it? It's like a fire in one room of your house... sure, when it's small and confined to that room, it's not so bad... but eventually, it will take over and engulf the whole house if you don't squash that fire! I've found that the specialists , like Warner,  advocate for an agressive approach to handling this disease. "waiting and seeing" is not their game... I guess my point here it to advocate for agressive management of not only carcinoid, but your own health care. When you don't get the answers you want, go someone where else... push your docs to test, explain those tests, and give you a copy of the report. If they don't call you back in a timely manner, pester them until they do. I just find it amazing how this system works, be it Carcinoid or any cancer! I find it frustrating to read so many posts by people unhappy by their doctors... it's frustrating because I have felt that way too... and it forced me to really act like a healthcare warrier. The system is indeed a mess... so, please stand up for yourself... and remember, there are a lot of ways to get the care you need even if you have limited or no insurance....There are state programs, payment plans, the American Cancer Society can often provide lodging if you seek care in a different area, etc... I'm 29 and want to live so I'm taking the bull by the horns... I'm happy to answer any questions from other patients, or just chat... note, I'm NOT a doctor, but I'm a patient who is getting really good about navigating the systems. So, hit me up if you have any questions, or, just want to vent! Good luck to you all! Best! -Like Genius. 

 

On 8/20/2009 like genius wrote:

Beware: I'm about to RANT...

I have made several posts in this
forum noting that
I have seen both Dr. Woltering and Dr. Warner, as well as several other
local oncologists in my area. My point here is really only to spread
the word... Both
Dr. Warner and Dr. Woltering were AWESOME! However, I think I learned
the most though from Warner...(he has been dealing with Carcinoid for
over 40years). After not getting the answers I wanted from my local
doctors,
I just got fed up with it and made independent appointments with both
specialists. The difference between seeing a specialist and general
oncologist is HUGE. I can't express enough how this has changed my
course of treatment. Of course, not all carcinoid cases are the same...
that's why it's so important to see doctors who deal withs many
carcnoid patients, not just one or two. From my expreince, I have found
that the general gastro oncologists have a "wait and see" approach to
managing carcoinid. Sure, I get it's an indolent disease (sometimes),
but why wait until it gets worse to deal with it? It's like a fire in
one room of your house... sure, when it's small and confined to that
room, it's not so bad... but eventually, it will take over and engulf
the whole house if you don't squash that fire! I've found that the
specialists , like Warner,  advocate for an agressive approach to
handling this disease. "waiting and seeing" is not their game... I
guess my point here it to advocate for agressive management of not only
carcinoid, but your own health care. When you don't get the answers you
want, go someone where else... push your docs to test, explain those
tests, and give you a copy of the report. If they don't call you back
in a timely manner, pester them until they do. I just find it amazing
how this system works, be it Carcinoid or any cancer! I find it
frustrating to read so many posts by people unhappy by their doctors...
it's frustrating because I have felt that way too... and it forced me
to really act like a healthcare warrier. The system is indeed a mess...
so, please stand up for yourself... and remember, there are a lot of
ways to get the care you need even if you have limited or no
insurance....There are state programs, payment plans, the American
Cancer Society can often provide lodging if you seek care in a
different area, etc... I'm 29 and want to live so I'm taking the bull
by the horns... I'm happy to answer any questions from other patients,
or just chat... note, I'm NOT a doctor, but I'm a patient who is
getting really good about navigating the systems. So, hit me up if you
have any questions, or, just want to vent! Good luck to you all! Best!
-Like Genius. 

Hi
like genius, i do have a question, i had  my appendex taken out
because of a carcinoid, it ws found accidently during  surgery
for  a hysterectemy. i had 4 inches of my colon removed as
precaution do i need to do anything else? Thanks so much. Patty L.

 

 

On 8/29/2009 PattyL. wrote:

 

On 8/20/2009 like genius wrote:

Beware: I'm about to RANT...

I have made several posts in this
forum noting that
I have seen both Dr. Woltering and Dr. Warner, as well as several other
local oncologists in my area. My point here is really only to spread
the word... Both
Dr. Warner and Dr. Woltering were AWESOME! However, I think I learned
the most though from Warner...(he has been dealing with Carcinoid for
over 40years). After not getting the answers I wanted from my local
doctors,
I just got fed up with it and made independent appointments with both
specialists. The difference between seeing a specialist and general
oncologist is HUGE. I can't express enough how this has changed my
course of treatment. Of course, not all carcinoid cases are the same...
that's why it's so important to see doctors who deal withs many
carcnoid patients, not just one or two. From my expreince, I have found
that the general gastro oncologists have a "wait and see" approach to
managing carcoinid. Sure, I get it's an indolent disease (sometimes),
but why wait until it gets worse to deal with it? It's like a fire in
one room of your house... sure, when it's small and confined to that
room, it's not so bad... but eventually, it will take over and engulf
the whole house if you don't squash that fire! I've found that the
specialists , like Warner,  advocate for an agressive approach to
handling this disease. "waiting and seeing" is not their game... I
guess my point here it to advocate for agressive management of not only
carcinoid, but your own health care. When you don't get the answers you
want, go someone where else... push your docs to test, explain those
tests, and give you a copy of the report. If they don't call you back
in a timely manner, pester them until they do. I just find it amazing
how this system works, be it Carcinoid or any cancer! I find it
frustrating to read so many posts by people unhappy by their doctors...
it's frustrating because I have felt that way too... and it forced me
to really act like a healthcare warrier. The system is indeed a mess...
so, please stand up for yourself... and remember, there are a lot of
ways to get the care you need even if you have limited or no
insurance....There are state programs, payment plans, the American
Cancer Society can often provide lodging if you seek care in a
different area, etc... I'm 29 and want to live so I'm taking the bull
by the horns... I'm happy to answer any questions from other patients,
or just chat... note, I'm NOT a doctor, but I'm a patient who is
getting really good about navigating the systems. So, hit me up if you
have any questions, or, just want to vent! Good luck to you all! Best!
-Like Genius. 

Hi
like genius, i do have a question, i had  my appendex taken out
because of a carcinoid, it ws found accidently during  surgery
for  a hysterectemy. i had 4 inches of my colon removed as
precaution do i need to do anything else? Thanks so much. Patty L.

 

Hi Patty L.,  I am a patient. It is important to find the Primary.  they can tell by the way the cells look.  I would have my Chromogranin A and Seritonin levels tested Periodically.  Have them tested at the same Lab every time.  This Cancer is a Neuroendocrine tumor.  It releases high doses of Seritonin into your blood stream to spread.  Most of the people I have met have Liver metastesizes.  I would have a CT Scan done just to make sure there are no Mets on your liver (or anywhere else).  The CGA (chromogranin A) is basically the "Markers" for Cancer.  Also see if you can get a Pancreostatin test done.  This is a much more precise (marker) test but it might be more expensive so check with your insurance.  I had my Primary found in my Cecum (next to the appendix) the size of a lemon, 7 lymph nodes removed, my liver resected, and 2 radio frequency ablations done on my liver.  I have to get Sandostatin injections so I had my gallbladder removed at the same time because the Sandostatin may cause gallstones.  I would talk to Dr. Warner in NYC or another Dr. that is knowledgeable in carcinoid.  Not Sloan Kettering for some reason they take the "Wait and See" approach and do nothing.  Go to Dr. Warner. I would also go to a cardiologist because high levels of seritoni can cause scarring of your heart valves and if not monitored you may end up having your heart valves replaced.  Thats what happened with a fellow "Noid" in my support group when he went to Sloan Kettering.  they may be great at treating other cancers but not Carcinoid. He is 45 by the way. Not doing further investigating may be a mistake.  I don't want to scare you but it is a very complex Cancer Un-like any other cancer known.  There are many different factors involved withthis disease.  but with the proper care and monitoring you can live with this very well.  It is not a death sentence like it is with other cancers.  You are your best advocate you may suffer with flushing, Diarhea, and pain.  but the Sandostatin can help relieve the symptoms and now there is proof that the Sandostatin can help prohibit tumor growth as well as shrink them so be very vigilant with tracking your symptoms.  there is no such thing as "Stages" with Carcinoid.  The main thing is to get the primary.  I wish you all the best and suggest you look into a support group it is so helpful to talk about your issues and ask questions about treatments.  Knowledge is powerful.  Best of Lick,  Katsen57   

 

Thank you for your informative letter concerning carcinoid syndrome.  It is  different than other cancers and I have learned to live with it thanks to Sandostatin shots.  I believe that I had this disease 10 years before I was dignosed and now since diagnosis this is my 7th year.  There is nothing that I cannot do and my doctor told me that I should not worry about my carcinoid cancer that I would probably die from something different.  But wait and see is not the right way to go. With Sandostatin  one can live a normal life. 

 

On 9/3/2009 Katsen57 wrote:

 

On 8/29/2009 PattyL. wrote:

 

On 8/20/2009 like genius wrote:

Beware: I'm about to RANT...

I have made several posts in this
forum noting that
I have seen both Dr. Woltering and Dr. Warner, as well as several other
local oncologists in my area. My point here is really only to spread
the word... Both
Dr. Warner and Dr. Woltering were AWESOME! However, I think I learned
the most though from Warner...(he has been dealing with Carcinoid for
over 40years). After not getting the answers I wanted from my local
doctors,
I just got fed up with it and made independent appointments with both
specialists. The difference between seeing a specialist and general
oncologist is HUGE. I can't express enough how this has changed my
course of treatment. Of course, not all carcinoid cases are the same...
that's why it's so important to see doctors who deal withs many
carcnoid patients, not just one or two. From my expreince, I have found
that the general gastro oncologists have a "wait and see" approach to
managing carcoinid. Sure, I get it's an indolent disease (sometimes),
but why wait until it gets worse to deal with it? It's like a fire in
one room of your house... sure, when it's small and confined to that
room, it's not so bad... but eventually, it will take over and engulf
the whole house if you don't squash that fire! I've found that the
specialists , like Warner,  advocate for an agressive approach to
handling this disease. "waiting and seeing" is not their game... I
guess my point here it to advocate for agressive management of not only
carcinoid, but your own health care. When you don't get the answers you
want, go someone where else... push your docs to test, explain those
tests, and give you a copy of the report. If they don't call you back
in a timely manner, pester them until they do. I just find it amazing
how this system works, be it Carcinoid or any cancer! I find it
frustrating to read so many posts by people unhappy by their doctors...
it's frustrating because I have felt that way too... and it forced me
to really act like a healthcare warrier. The system is indeed a mess...
so, please stand up for yourself... and remember, there are a lot of
ways to get the care you need even if you have limited or no
insurance....There are state programs, payment plans, the American
Cancer Society can often provide lodging if you seek care in a
different area, etc... I'm 29 and want to live so I'm taking the bull
by the horns... I'm happy to answer any questions from other patients,
or just chat... note, I'm NOT a doctor, but I'm a patient who is
getting really good about navigating the systems. So, hit me up if you
have any questions, or, just want to vent! Good luck to you all! Best!
-Like Genius. 

Hi
like genius, i do have a question, i had  my appendex taken out
because of a carcinoid, it ws found accidently during  surgery
for  a hysterectemy. i had 4 inches of my colon removed as
precaution do i need to do anything else? Thanks so much. Patty L.

 

Hi
Patty L.,  I am a patient. It is important to find the
Primary.  they can tell by the way the cells look.  I would
have my Chromogranin A and Seritonin levels tested Periodically. 
Have them tested at the same Lab every time.  This Cancer is a
Neuroendocrine tumor.  It releases high doses of Seritonin into
your blood stream to spread.  Most of the people I have met have
Liver metastesizes.  I would have a CT Scan done just to make sure
there are no Mets on your liver (or anywhere else).  The CGA
(chromogranin A) is basically the "Markers" for Cancer.  Also see
if you can get a Pancreostatin test done.  This is a much more
precise (marker) test but it might be more expensive so check with
your insurance.  I had my Primary found in my Cecum (next to the
appendix) the size of a lemon, 7 lymph nodes removed, my liver
resected, and 2 radio frequency ablations done on my liver.  I
have to get Sandostatin injections so I had my gallbladder removed at
the same time because the Sandostatin may cause gallstones.  I
would talk to Dr. Warner in NYC or another Dr. that is knowledgeable in
carcinoid.  Not Sloan Kettering for some reason they take the
"Wait and See" approach and do nothing.  Go to Dr. Warner. I would
also go to a cardiologist because high levels of seritoni can cause
scarring of your heart valves and if not monitored you may end up
having your heart valves replaced.  Thats what happened with a
fellow "Noid" in my support group when he went to Sloan
Kettering.  they may be great at treating other cancers but not
Carcinoid. He is 45 by the way. Not doing further investigating
may be a mistake.  I don't want to scare you but it is a very
complex Cancer Un-like any other cancer known.  There are many
different factors involved withthis disease.  but with the proper
care and monitoring you can live with this very well.  It is not a
death sentence like it is with other cancers.  You are your best
advocate you may suffer with flushing, Diarhea, and pain.  but the
Sandostatin can help relieve the symptoms and now there is proof that
the Sandostatin can help prohibit tumor growth as well as shrink them
so be very vigilant with tracking your symptoms.  there is no such
thing as "Stages" with Carcinoid.  The main thing is to get the
primary.  I wish you all the best and suggest you look into a
support group it is so helpful to talk about your issues and ask
questions about treatments.  Knowledge is powerful.  Best of
Lick,  Katsen5 

Katsen57, I wish you the best also. Thank you for the all the information. Patty L. 

 

You are so, so right. I am still furious with my mom's doctors, who removed a primary tumor in her lung (and the whole lug, actually) and then just thought they'd ignore the other spots, since it's so "slow-growing." It spread like wildfire through her whole body before they took notice again. My question is -- is it worth it to see a specialist now, when she is pretty much at her end? She has it taking over her remaining lung, and it's in all of her bones, and liver, and stomach, and -- just everywhere. She's had radiation and sandostatin, but now they want to put her on chemo. I wanted to take her to a specialist, get a second opinion, but she seems to think there's just no point. Actually I wanted her to do that when she got re-diagnosed two years ago, but she refused. I'm afraid she might be right, that there's not much more that they can do at this point. But if that's the case, is the chemo worth it? I keep reading about how it's only effective a small percentage of the time with carcinoid. Is that true? Will she just spend her last months in misery? Actually with bone metastases, it's misery either way, so what the heck.

If it were me in the same boat, I would go to a specialist to make sure I got the best chemo treatment for carcinoid/NETs!  Your local onco probably does not have much experience with this disease and the nationally known specialists keep up on all the latest and greatest treatments!  You can find a list of specialists at the Carcinoid Cancer Foundation website.  Just google it!  

Best of luck, Dianna

On Aug 20, 2009 12:00 AM like_genius wrote:

Beware: I'm about to RANT...

I have made several posts in this forum noting that I have seen both Dr. Woltering and Dr. Warner, as well as several other local oncologists in my area. My point here is really only to spread the word... Both Dr. Warner and Dr. Woltering were AWESOME! However, I think I learned the most though from Warner...(he has been dealing with Carcinoid for over 40years). After not getting the answers I wanted from my local doctors, I just got fed up with it and made independent appointments with both specialists. The difference between seeing a specialist and general oncologist is HUGE. I can't express enough how this has changed my course of treatment. Of course, not all carcinoid cases are the same... that's why it's so important to see doctors who deal withs many carcnoid patients, not just one or two. From my expreince, I have found that the general gastro oncologists have a "wait and see" approach to managing carcoinid. Sure, I get it's an indolent disease (sometimes), but why wait until it gets worse to deal with it? It's like a fire in one room of your house... sure, when it's small and confined to that room, it's not so bad... but eventually, it will take over and engulf the whole house if you don't squash that fire! I've found that the specialists , like Warner,  advocate for an agressive approach to handling this disease. "waiting and seeing" is not their game... I guess my point here it to advocate for agressive management of not only carcinoid, but your own health care. When you don't get the answers you want, go someone where else... push your docs to test, explain those tests, and give you a copy of the report. If they don't call you back in a timely manner, pester them until they do. I just find it amazing how this system works, be it Carcinoid or any cancer! I find it frustrating to read so many posts by people unhappy by their doctors... it's frustrating because I have felt that way too... and it forced me to really act like a healthcare warrier. The system is indeed a mess... so, please stand up for yourself... and remember, there are a lot of ways to get the care you need even if you have limited or no insurance....There are state programs, payment plans, the American Cancer Society can often provide lodging if you seek care in a different area, etc... I'm 29 and want to live so I'm taking the bull by the horns... I'm happy to answer any questions from other patients, or just chat... note, I'm NOT a doctor, but I'm a patient who is getting really good about navigating the systems. So, hit me up if you have any questions, or, just want to vent! Good luck to you all! Best! -Like Genius. 

 You need to I love it when you RANT - here's me - went for a colonoscopy - polyp turned into a carcinoid - my doctor told me not to get on the internet and get all mislead ??!! said he would refer me to a surgeon - have not met with surgeon yet as this was booked a month out - have done emense amounts of reading and questioning to both my primary care and endrocronologist - to whit all I have been told is wait till you see a surgeon. I am afraid to upset them if they find I am getting second opionions - and then my wait to have this thing removed will be even longer - I am writing to admire the fact and let you know I admire your I am not waiting !! I am unable to get the horns hooked here and needing some support 

Genius!

It's taking me 'several months' to find this place.  I just read your post and it was MOST refreshing!!!!   I too am so tired of the 'wait and see' approach!  I am preparing to go to Kenner to see Dr. Woltering.  It will be so refreshing to be in front of a physician that actually knows something about carcinoid!   Hope the last few months have been good for you!