Oncologist Cannot Find Primary Cancer

a close friend had fluid in her lung and had difficulty breathing.  when she went into the hospital, they removed the fluid and found that it had cancer cells in it.she has had several cat scans along with a pet scan and although they have found "hot" spots in her intestine, along with a few spots on her liver, the oncologist has been unable to determine where the primary cancer is.he has told my friend that this is not uncommon, however, i feel there must be other tests or options where the primary tumor or source of this cancer can be found.she is being treated with three different types of chemo.  there are four sessions sceduled.  her first session occurred on monday, may 7 and it lasted over 7 hours.  her next treatment is at the end of may.her oncologist says that since the primary cancer has not been found, the hots spots cannot be treated with radiation nor can they be removed.has anyone ever encountered this type of problem.  if you have, i would appreciate any advice you may have.

thank you

Hi there,

My husband was diagnosed with neuroendocrine cancer back in Oct 2005 and the doctors were not able to determine the primary site either, even after several different types of tests. It was 4 or 5 days after we were told he had cancer that they came back and said they could not determine the site of origin, and probably never would be able to. Of course by the time my husband was diagnosed he had a massive tumor in his abdominal area with metastases to his liver and some lesions on his bones. We were told right away that neither surgery nor radiation would ever be an option for him

It is very frustrating in this day and age to not be able to find out where it all started, what with all the technology we have. As a result he has been treated with all different types of chemo to try and see which will be most effective.  Fortunately he has remained "stable" since his original diagnosis and we remain hopeful that one of these treatments will help him feel better. There are so many different drugs and alternative treatments out there, so tell your friend to hang in there - hopefully she will respond well to the treatment she is receiving, and if not there is always something else they can try.

Take care, and best wishes to you both.

Jodi 

 

 

 

On 5/9/2007 Jodi1 wrote:

Hi there,

My husband was diagnosed with neuroendocrine cancer back in Oct 2005 and the doctors were not able to determine the primary site either, even after several different types of tests. It was 4 or 5 days after we were told he had cancer that they came back and said they could not determine the site of origin, and probably never would be able to. Of course by the time my husband was diagnosed he had a massive tumor in his abdominal area with metastases to his liver and some lesions on his bones. We were told right away that neither surgery nor radiation would ever be an option for him

It is very frustrating in this day and age to not be able to find out where it all started, what with all the technology we have. As a result he has been treated with all different types of chemo to try and see which will be most effective.  Fortunately he has remained "stable" since his original diagnosis and we remain hopeful that one of these treatments will help him feel better. There are so many different drugs and alternative treatments out there, so tell your friend to hang in there - hopefully she will respond well to the treatment she is receiving, and if not there is always something else they can try.

Take care, and best wishes to you both.

Jodi 

 

 

hi jodi,thank you so much for getting back to me.  we were unaware that a primary cancer source although undetected,  is not so uncommon.  i appreciate your feedback and will get back to my friend with your comments.  thank you and i pray your husband continues  to remain stable.jan

 

I think biopsies are what is needed from the hot spots. I think. And to repeat, yes the origins need to be found out. Even if it's a large tumor, they need to find the primary source where it came from. I didn't understand it at first either, So, they had to do many blood tests, smears (rectal smears), and scans before it could be determined where the cancer came from. I am sure the docs have a pretty good idea, it just must be comfirmed - BUT, it shouldn't take too long. God Bless

I am so sorry your friend. Your friend must be so worried. Besides receiving the devistating diagnosis of cancer to not know where to begin must be horrible.

I have just one question.  Was the fluid IN the lung or between the lung and the chest wall (pleural effusion)?

My dad was just diagnosed with mesothelioma, a rare form of cancer which often shows with a pleural effusion.  They were able to send the flud which was drained by a thoracentisis to a lab for testing.  The cells were cultured and he was diagnosis from this.  Maybe they should have the fluid sent to another lab for patholology to see what it shows!

Good luck.

At first glance my mother's oncologist thought her cancer might be lypmhoma then after a biopsy he determined it was lung cancer (she has always been a non smoker)  She had extensive radiation done to her.  We did some research and got her a new doctor, who performed more tests on that same biopsy and he came back with her cancer being peritoneal cancer!  Cancer of the outside lining of the stomack and uterus area, which effected her lungs with fluid and had to have her lungs drained also.   What your friend probably needs is a well respected cancer specialist, its made all the difference in the world she is a three year survivor-she never would have made it this long with those other doctors.  Nothing wrong with a second opinion.

It would be important to find out what type of cancer they found in the lungs.  If it is carcinoid - it is not unusual to not find the primary.  However if it is carcinoid - we have been told that chemo is not usually a drug of choice for treatment - but I am not a doctor by any means.  My husband does have carcinoid cancer that has spread to the liver and they primary has not been identified.  I suggest you research a good place to start is the Carciniod Foundation.  There are doctors that specialize in this type of cancer and we found it was important to get to one of these doctors due to the lack of knowledge generally about this type of cancer.  He is being treated by Dr. Eugene Woltering in Kenner LA at the Neuroendocrine Clinic.  He is scheduled for surgery this month.  It sounds like they did an Octreoscan based on your comments about "hot spots".  I can only suggest you research and educate yourself as much as possible in order to make informed decisions and use as a guideline for if you need to be seeking another opinion.  Hope this is helpful

Kay

 Hi, my name is Bill and was diagnosed with a 5 inch cancerous tumor in the tail of the pancreas in Apr 06. Since there were mets to the liver, removal was not an option, they told me at UCD in Sacramento. I was on chemo for 5.5 months, Gemzar, and Tarceva. A new oncologist referred me to Stanford in Dec. 06, by San Fr. and he told me the tumor was a neuro-endocrine tumor, and essentially the chemo and Tarceva did nothing for that kind of tumor. He said that type is rare, but normally slow growing and you can live a long time with this type. I did not ask him what a long time meant. He stated that he is treating 37 patients with this type of cancer. Since I feel great, no pain and run 3x per week still, he suggested I do nothing. I am at peace with that. I am a christian and have lots of support. This morning I had another scan at Stanford and will go back to Dr. Fisher next week for results.

 Bill,

Ripon, CA

 

 

My husband basically was told the same thing that surgery was not an option for him.  He has carcinoid ca with mets to the liver.  We were being treated in Houston.  Chemo was not recommended since this is not a drug of choice for this type of cancer, but they did want to do radiation.  We also being Christians were just really led to not do that.  We continued research on the internet and then scheduled an appt with Dr. Eugene Woltering in Kenner LA.  At our first visit the surgeon also looked at all of his records including CT scans and MRI - we were told that he was a candidate for surgery and they thought he would do well..  Long story short he had surgery two weeks ago the primary site was located in the small intestines and removed and the largest tumor in the liver removed. ( which was pressing on the bile ducts and hepatic artery)  We were told by our surgeon that probably one more surgery to the liver and my husband will be disease free.   SO PLEASE don;t stop with the answers that you are not a candidate for surgery or that nothing else can be done until you seek an opinion from a doctor that specializes in this type of cancer.   My prayers are with you - please visit the Carcinoid Foundation website - The doctors at the neuroendocrine clinic in Kenner LA  - were wonderful and his surgery was definitely a sucess.  

Kay

Just wondering - are you taking Sandostatin shots??