Hasty decision for endonuclear tumors / carcinoids

On Oct 20, 2011 5:02 AM Katsen57 wrote:

My advice is to go to Dr. Woltering. He is by far a better choice for your father's situation. Sloan-Kettering is in it's infancy in treating this disease. If it wasn't for Dr. Reidi they still wouldn't be treating patients for Carcinoid. Dr. Warner is a Carcinoid specialist but he is a gastro Dr. not an oncologist. He has studied this disease since the late 1940's and has been instrumental in pioneering treatment for this cancer. He is a brilliant man but he is also in his 80's now so he only works as a consultant. He has worked @ Mt. Sinai in NYC since 1952. He teaches @ the hospital and has a team of Dr.s that work closely with him there. He also works closely with many other Dr.s from all over the world. I can truly say that Dr. Woltering would be your best bet for your father. Don't "wait & see", it is time to act. I wish you and your father all the best! Peace - katsen57

Thank you for your reply, SO much!  I see there are a few replies I must respond to.  One lady has compared breast cancer and that NETS are slow growing so they could take years to cause problems but that's a whole different issue then them spreading.  Slow growing, per tumor, has nothing to do with them spreading.  Thank you again! xo

On Oct 20, 2011 7:44 PM Windymoose50 wrote:

Hi Randijoy,

When you speak of other cancers, I had breast cancer first, Multiple Myeloma second and I had a carcinoid a little bigger than a plum removed with six inches of small intestine removed and they told I would need nothing more.  Did they explain to you that carcinoids are very slow growing and can be in there for decades before causing issues.  Mine caused an obstruction.  I have no info on docs treating this.  I had an onc surgeon and so far so good.  Steve Jobs had a carcinoid of the pancreas that was inoperable but he did get a new liver inspite of it. He lived for years with that tumor.  Good Luck to you and your hubby, hope they figure out what is best to do. Gayle

Hi Gayle, Thank you very much for your reply!  Unfortunetely, NETS are slow growing so they could take years to cause problems but that's a whole different issue then them spreading. Slow growing, per tumor, has nothing to do with them spreading :( As far as Steve Jobs, that's also unfortunte. He did DNA testing and didn't do some of the things he should of (bad doctor advice and he went to Stanford!)  He should of had it operated on. When you said it's inoperable....I'm not sure of the blood vessel involvement but people have their pancreases removed all the time! Pancreatitis is very common and, in many cases, they find carcinoids the doctors didn't even know were there. As you can see, I've done a ton of research.  I just wish the newspapaers would stop saying he died from pancreatic cancer :(  He had neuroendocrine cancer IN his pancreas.  Thank you again!

On Oct 20, 2011 8:26 PM marybuenrostro wrote:

HI my name is Mary I am 65 yrs old and have stomach cancer stage 1. I will be going for surgery oct 26th. I am so nervous ans scared. God Bless all of all with this cancer ordeal we are all going threw.

God bless you too Mary.  I'm sorry you're going through this too :(  Please just know that you have control over your treatment so educate yourself and remember that the doctors work for you.  Take care and please let me know how you're doing!!

On Oct 20, 2011 7:49 PM Windymoose50 wrote:

Randijoy!

Sorry I mistook your father for your husband.... Good old chemo brain!!  Gayle

 

That's OK, Gayle :) Hubby, dad.....still a family relation lol

On Oct 21, 2011 3:34 PM Jenholm25 wrote:

RandJoy,

I've heard great things about Dr. W at LSU.  Your dad will be in some of the best hands available there.

Unfortunately, it sounds like your dad's cancer is quite advanced.  And it is very possible that they won't do surgery.  Carcinoid cancer patients are at high risk for carcinoid crisis during surgery too.  I too am at an advanced stage of carcinoid cancer.  This cancer does not have a cure.  It does not go into remission.  Once you're at this stage of the game, you'll be fighting cancer for the rest of your life.  Tumors will continue to pop up. 

I'm sorry to hear your dad is going through this.  Many of us aren't diagnosed until it has spread to several spots in our bodies.  I'm sure Dr. W and his team will do everything they can for him to give him the longest life and quality of life possible.

My best,

Jen

Hi Jen, Thank you for your reply.  I'm sorry to hear you're going through this :(  I REALLY hope they will operate.  They go the aggressive route even when it's at this point.  It just depends on angigenisis (sp?)(blood vessels) & locations.  Each tumor has different characteristics and respond differently to the different therapies and this is one of the reasons they like to get a many out as posible so they can test their sensitivity to the different therapies.  They also do the testing on the blood vesels too.  Are you having any of the therapies?  Octreotide shots or any trials, chemo, etc....

On Oct 21, 2011 4:12 PM jarsclay wrote:

No, you did not jump too fast. My Dad was diagnosed last August and because of insurance restrictions he could NOT see someone at MD Anderson, which has one of the top docs in this type of cancer. Because of that, his cancer was misdiagnosed as high grade neuroendocrine and he unnecessarily went through chemo and it was 8 full months before he was able to get to MD Anderson (after an insurance switch). Since being there, he's been treated much more aggressively and recently just had SirsSpheres treatment. But, so much went downhill in the year that it took to get him that treatment - I often wonder how things would have gone if he'd been with a specialist from the beginning.

Get your Dad the best most specialized treatment that you can - doctors that deal with this all the time. And don't let anyone else tell you otherwise!

Thanks for you reply!  I'm so sorry to hear about your dad's cancer :(  Insurance situations like this, and so many other insurance battles make me livid!

The crazy thing is, just becaue a doctor is considered a "specialist" in this field doesn't mean they really are.  We've learned the hard way.  The doctor he's seeing now is the Chief of encology at a prominent hospital and has some experience with pancreatic cancer only :(  He doesn't fit the criteria of "specialist"  The ISI website has a consenses on what make a doc a specialist.  If you call them, they'll even send you books to give to less experienced doctors to help treat the patients with better guidlines (blood markers, scans, etc...)

Good luck to you and your dad and don't stop believing. There are lots of trials in phase 3 that are working good!

I'm onoctreotide/sandostatin shots every 21 days plus rescue shots when I need them.  I take CREON which is replacement pancreas enzymes.  And Metformin to help conteol my blood sugar.  80% of us who have carcinoid syndrome develop pancreatic insufficiency and type 2 diabetes.  It's also effected my heart and blood pressure, so I'm on meds for that.

I currently have mets in many of my mediastinal lymph nodes.  Which basically means in the central upper chest area.  They are still fairly small.  We're keeping an eye on it for now.  They aren't easy places to get to without being really invasive.  So, scans every 3 months.

Most of the time I feel like I have the stomch flu.  But, I'm hanging in there.  :)  Have plans to go to a halloween party tonight.  Saving my energy up for that today.

On Oct 22, 2011 6:10 PM Jenholm25 wrote:

I'm onoctreotide/sandostatin shots every 21 days plus rescue shots when I need them.  I take CREON which is replacement pancreas enzymes.  And Metformin to help conteol my blood sugar.  80% of us who have carcinoid syndrome develop pancreatic insufficiency and type 2 diabetes.  It's also effected my heart and blood pressure, so I'm on meds for that.

I currently have mets in many of my mediastinal lymph nodes.  Which basically means in the central upper chest area.  They are still fairly small.  We're keeping an eye on it for now.  They aren't easy places to get to without being really invasive.  So, scans every 3 months.

Most of the time I feel like I have the stomch flu.  But, I'm hanging in there.  :)  Have plans to go to a halloween party tonight.  Saving my energy up for that today.

What are rescue shots?  That's good you're getting the shots that frequently.  Are the 30mg?  I know Dr. Woltering says the octrotide blood levels should be over 5,000 which requires 30mg 2x monthly & ideally blood levels should be well over 5,000.  My dad just had his first shot and he's only going to be getting the shots every 30 days :(  What doctor/clinic are you being seen at?

The rescue shots are more sandostatin for when I have breakthrough carcinoid syndrome symptoms.  I give them to myself whenever I need to.  A little frustrating at times as they don't travel well and need to be refirgerated.  Yes, my 21 day shots are the 30 mg dose.  I see Dr. O'Dorisio at the University of Iowa Hospitals.  He's been specializing in NET cancers for over 38 years.  His wife works with pediatric NET cancers.  I see him every 6 months on a consulting basis.  And I see a local oncologist every 3 months.

My carcinoid actually acts like a bit of an odd-ball, even amongst carcinoids.  My seritonin levels often read as being too low, and calcitonin too high.  My thyroid levels are messed up too (T3 too high, T4 too low).  I am 1 of 3 of Dr. O'Dorisio's patients who's body acts this way.  I guess my cancer overproduces seritonin in more of a cyclical way, and my body metabolizes it very quickly.

Anyway...  :)

My partner takes the rescue doses of sandostatin as well, it de creases the symptom (diarhea), but it does not resolve it. We have learned a lot about this disease since we became part of Cancer Compass. I heard about other treatments, doctors and other ways that the disease can be presented. However, I firmly believe that besides a Dr. being an expert, he/she needs to be very humane and kind.