Questions About Carcinoid From A Worried Wife

My husband age 37, was recently diagnosed with Carcinoid in the, small intestine, spllen and liver. He had a chemoembolization in September on 1/2 of his liver (he had developed a large tumor on his liver causing him a lot of pain) . We recently met with his Oncologist for a follow up, he stated all of his labs looked good and thigns are going in the right direction, I was so excited with the news I had some questions for him that I forgot to ask. The Doc said my husband could potentially go another year without having another chemo treatment.  Wouldnt they be better off getting the existing cancer treated?? I understand Carcninoid is a slow growing cancer but I guess I dont understand why they are not going to treat the existing cancer until he starts to feel pain which would tell us another tumor is brewing. My husband is feeling great right now, no pain and felling pretty healthy, other than he is tired alot. The plan is to monitor him every three months with labs, a 24 hour urine catch and an MRI to follow his progress. The tumor he had has currently shrunk by 50% but I am also told this is a temporary fix. He is not a candidate for transplant as his cancer is all over his liver. I am told he will never be "Cancer Free" , and we understand that but it seems to me they should be moving on this quicker. Can anyone shed some light on this for me??? 

For the most current information on Carcinoid you can go to the www.carcinoid.org website. This site has the best information on the web for Carcinoid. Carcinoid patients and Carcinoid specialists don't agree with the 'wait and see' method of treatment (actually non-treamtent). There are chemo treatments that will help keep the tumors your husband currently has from growing. Xeloda is the one I am currently on and there has been no new growth in six months after having 2 chemembolizations.

 You should print off the info you find and take it with you to the next doctor's appointment. If he's not willing to work with you on this and still says 'do nothing' you should look into getting another doctor. Most doctors don't understand Carcinoid but you should be able to find a doctor that is willing to learn.

 Also, I've learned to write down my questions as I think of them or else I forget them by the time the doctor's appointment rolls around. Good luck!

Please go to see Dr Eugene Woltering, in Kenner Louisianna. He is a carcinoid specialist and works w/ a team of surgeons that are also specialists.

I'm not certain where you are located but, it is well worth the trip. I recently went to see Dr Woltering and he is recommending that I go to Switzerland for the y90 systemic radiation therapy. Sounds aggressive...it is. That is how they operate there... Even though this is said to be slow growing, you do not want it to get ahead of you.

There is also a specialist in Iowa, named Dr Thomas D'Orisio...also a carcinoid specialist.

They say, "The further you travel, the better your chances of getting well."

We'll see...Gayla, Ohio

thank you so much for your response, this is all still so new to us. Everything I have been reading is telling me the "wait and see method" is not a good one. I will definetley look into these two doctors.

 

Thank you so much!!!

 

 

I am a carcinoid patient as of 5/09/07 .  I would recommend you see or talk with Dr. Richard R. P. Warner.  He is the know all, be all, guru on carcinoid.  He works at Mount Sinia Hosp. in NYC.  He has made carcinoid his life's work.  I have been getting advised by him from day 1.  He was working out of his own office untill he started working at Mt. Sinia Hosp. in January '08.  He is now teaching the subject.  There is also a Symposium scheduled on April 13, 2008.  I would look up Susan Anderson's website.  most informative.  it will direct you to some great info. I would also look up Dr. Mickail Shafir also of Mt. Sinia Hosp.  He did my surgery. Briliant man!  He works with Dr. Warner.  You deffinitley want someone who knows carcinoid thoroughly.  There are many little details that you need to learn about this cancer. Does your husband take Sandostatin to suppress the serratonin levels?  You didn't mention this. I also see a cardiologist Dr. Jerome Zacks in NYC.  He is very informative on the effects carcinoid can have on your heart.  In fact I am seeing him today. 

I too was on the xeloda and also temador but to no avail.  My original tumor was in the Cecum of the large intestine.  It Metastesised on my liver where I had a Radio Frequency Ablation. but it had a few tumors peppered in.  My recent 1/08 CT showed it grew and multiplied. So I need to go on Folfox/Avastin but I have to get the Insurance to approve it still.  They keep Denying it.

I hope this helps you.  It is very important that you get someone who understands all the complexities of this condition.  It is very scary and confusing but you need to arm yourself with lots of info.  The more you know, the better you can communicate with your doctor. 

Good Luck, God Bless!  Katsen57

My husband is also a patient of Dr. Woltering in Kenner Louisiana.  His philosophy is very much in line with Dr. Warner.  They are two of the top Carcinoid specialists in the states - however I dont know Dr. Warner, but I know he is very active with the research and treatment.  I would recommend either of these, but Dr. Woltering was the closest for us.  My husband was told by local doctors that he was inoperable and there was not really anything they could do for him.  Please seek a second opinion - the wait and see method is not a good choice.  If your doctor is not being aggressive then you must - it is your life we are talking about.  If you need any other info please ask.  Go the the Carcinoid.org website- you will find alot of information.  God Bless

Hello,

I completely understand where you are coming from with the "wait and see approach."  I was 17 when I was diagnosed with a carcinoid tumor of the appendix.  I'm very lucky that it was found and it was in the location that it was in.  My original surgeon who removed my appendix because of appendicitis told my parents that I should go to see a surgeon immediately.  We went to children's hospital in Boston where I saw a pediatric oncologist and pediatric surgeon.  They were very kind, but they told me and my parents that they did not believe further surgery was necessary and the likelihood of the cancer reoccuring or metastisizing in my bowel would be unlikely.  Even at 17 I knew cancer keeps growing if there are still cells in there... So we got a second opinion... the surgeon and oncologist recommended a bowel resection.  It's been 7 years since.  (I still can tell you the months and days) Anyways, go with your gut and a second or third opinion.  I think I would be a complete mess if I had not had the surgery and decided to wait and see.  Get another opinion or even a third...or more until you and your husband are comfortable with what the doctors are saying.

 Best of luck.

On 2/8/2008 gunnys girl wrote:

thank you so much for your response, this is all still so new to us. Everything I have been reading is telling me the "wait and see method" is not a good one. I will definetley look into these two doctors.

 

Thank you so much!!!

 

 

 

My husband too has carcinoid cancer/diagnosed over 6 yrs. and probably had it 4 yrs. prior to that. He had 7 chemo-embolizations @ John Hopkins and now cannot have anymore. They probably want to hold off on giving your husband any more treatments unless there is more growth as they can only do so many treatments.