Yikes, another primary tumor?

[mamacze]

I had an appointment with my oncologist today and he is starting a hunt for another primary tumor unrelated to my metastatic breast cancer. Some recent oddball symptoms lead him to do a blood serum tumor marker test for neuroendocrine tumors (chromogranin A). Results came back 7 times greater than normal...I am having body scans all week (CAT and octreoscan)...they are suspecting either carcinoid or pheochromocytoma....is any one else dealing with a second primary tumor? What are your thoughts? My last scan is Friday; so I suspect I will get results toward the middle to end of next week. I am heading to upstate NY over the 4th to visit my 85 y.o. parents, so I can put this aside until next Friday. Any advice is appreciated while I wait with white knuckles...
Love Kim from CT

[Lani]

Not exactly answering your question, but info:

My father has a nonfunctional (producing polypeptides which are not known hormones) Islet cell tumor of the pancreas. His produces much more than 7 times as much chromogranin A than normal and there is a test for the polypeptide level in the blood too (his was around 7000X normal as I recall)

He also had a microadenoma of his pituitary diagnosed on a brain MRI. As these two things are usually part of a triad of something called MEA I--Multiple endocrine adenomatosis type I which is hereditary in a dominant fashion and as I had a CT which had some ?fuzziness in the area of the head of the pancreas, I underwent a whole panel of tests related to this. There is an expensive test to be done on my father to see if he does have MEA I so that others in the family could determine if they need to be screened, but he is in his late 80s and didn't want to do it (I was advised it was only 50% accurate anyway).

He was diagnosed in 2001(at age 81) and it has grown only ever so slightly since and is watched with MRIs and.or CTs and blood tests every six months. I read that are considered BENIGN until they metastasize to the liver at which point they are classified as malignant (this is because when looked at under the microscope one cannot tell benign from malignant0. This may be changing as they start looking for markers.

A few months ago while doing my reading on her2neu breast cancer I came upon an article discussing her2neu in neuroendocrine tumors including this one. If I find it I will post its link or abstract.

Those neuroendocrine tumors of the pancreas (rather than pheochromocytomas) can be functional--which is how they are usually classified--and then they cause symptoms (my dad's being nonfunctional produced no symptoms and was an incidental finding when he was being worked up for an obstruction)

Then they are called insulinomas, gastrinomas, VIPomas.

In 2001 when I researched this I communicated with the person at the NIH doing most of the research into Islet cell tumors of the pancreas, I believe his name was Johnson. He informed me the two best people in the country working on it were Jeffrey Norton, a surgeon now at Stanford and Joseph Pisegna, a gastroenterologist at UCLA, both of which my father has seen. There is a webcast online with Dr. Pisegna discussing islet cell tumors of the pancreas. He is also an expert on pheochromocytomas I believe. Fill in neruoendocrine tumors into PUBMED and/or google to get more info. Interestingly, it is a neuroendocrine tumor of the pancreas that Steve Jobs, head of Apple computer, had several years ago. HE made this public so that the stock price of his company would not go down--as many people think all tumors of the pancreas act the same (horribly) and these tumors although located in the same organ (different part) have an entirely different behavior. (SOUND FAMILIAR?)

PS My blood tests were normal and CT with special technique to look for neuroendocrine tumors of the pancreas was negative as well.

HOPE THIS HELPS!

[mamacze]

Lani,thank you for the information on your father. Also, if you happen to find the link on NET'S and her2 I would appreciate it. I find I do better when I have objective information that I can pursue and you certainly gave me a bucket full. Thank you this information and, clear thinking.
Love Kim

[Ann]

Kim,

I do not have any information for which you are seeking but I want you to know that you are in my thoughts. It doesn't seem fair that you are having to endure more tests, waiting, etc. with what you have been through. I guess that is the nature of this beast. I hope you are able to enjoy the extended weekend, 4th with your parents and the rest of your family and that you come back to test results that are in your favor. I have read many of your postings and find them to be very uplifting. Anyway, I hope I have been able to give you some comfort.

[Vicki]

Oh Kim, what a week you're having to go through. It's tough waiting for answers as we all know. Your amazing attitude will get you through this! Plus, I'm glad you'll be seeing your family as a short diversion. I'm also here for you every step of the way.

A few questions, first. What kind of oddball symptoms were you having?
What is an octreoscan, and a carcinoid and a pheochromocytoma? I'm not familiar with these terms.
"I am having body scans all week (CAT and octreoscan)...they are suspecting either carcinoid or pheochromocytoma...."

I ask, because for my entire adult life I had very severe hypoglycemia, which gradually got worse, and began raising flags when my annual blood tests kept showing glucose levels in the 30s (normal is around 70-100, I believe, when fasting). At age 50, in 2000, my endocrinologist ordered several blood tests, had someone perform an endoscopic ultrasound of the pancreas and gave me a starvation test for half a day in the hospital, when my blood sugar/glucose went down to a supervised 27 and I was immediately given glucose. It was determined that I had a benign insulinoma on the tail section of my pancreas. After I had a partial pancreatectomy in late 2000, my blood sugar became normal and has been fine since. But, turning 50 had its other side, too, as three years later that's when I found out I had bc. That's why I was interested in your symptoms. Is there some connection between bc and neuroendocrine tumors or troubles? Does your doctor think it's connected to your pancreas, thyroid or somewhere else? As an fyi, my former UCI endo., Dr. Murray Korc, is now back East at Dartmouth and runs the medical center there. He's an amazing clinician and I give him huge credit for diagnosing something rather unusual that I thought was simply low blood sugar. Insulinomas are quite rare (1 in 100,000), so it will be interesting to see what's going on with you, Kim.

I send my love and hugs to you. Let's do dinner again soon!

XO,

Vicki

[Becky]

Dear Kim


I am always thinking of you (and Vicki) and now you are having more troubles (which you suspected when we were together in the beginning of the month). Oddly, my mother (a bc survivor) has 2 adrenal (cortex) tumors which are considered benign (although one is very, very slowly growing). They are considered benign via various tests including PET (she can never have MRI due to a pacemaker). She also gets tests to ensure that it is still a non-functioning tumor (meaning it is not producing excess corticosteroids or estrogen). We thought it might be related to the bc. My mom had the typical non Her2 type that is 90% ER+ and 98% PR+. She was diagnosed while postmenopausal and was put on Arimidex (after a couple of years on tamoxifen) about 1 yr ago. This is when it was noticed that one was growing (they were discovered 4 yrs ago during a CT scan of the abdomen when she had to have colon resection due to a burst diverticuli). It was scanned yearly ever since and then grew (after the one yr on an AI - I am theorizing that the AI working on inhibiting the conversion of androgen to estrogen in the adrenal "excited" the tumor to grow - who knows. Her specialist says these things are hormonally (estrogen) related). And although I know that both you and Vicki are hormone negative, I still believe that estrogen plays a huge role in all bc (at least the formation of it even if the hormone receptors are later down regulated).

When I get my yearly scans, I always have them make sure to let me know what the pancreas and adrenals are doing.

I believe you may have some benign thing going on (a benign but functioning tumor?). I won't say I will keep you in my thoughts because you always are anyway.

Love, Becky

[Vicki]

Hi Kim,

I did a quick "Google" search using your terms and came up with these sites, if any of it helps:

http://www.angelfire.com/journal2/sadhelp/difd.htm


http://www.carcinoid.org/pcf/docs/OctreoScanMHanson.htm



http://www.carcinoid.org/pcf/glossary.shtml



http://www.carcinoidinfo.info/gulec.htm



http://www.carpapatient.se/articles/eng_carcinoidrwarner.asp

Love,

Vicki

[StephN]

those symptoms. They can go on and get added to until we are so confused we don't know what we have or where those symptoms are coming from.

Sounds like there are some VERY specific blood tests that can, when taken together, either give or rule out a diagnosis.

In one of Vicki's links there was mention of an "anaphalactic shock" type event and you described one of those to me a while back. A tipoff?

We will be waiting for the tests to be analyzed and some kind of non-scary conclusion that will need little or no dealing with. Just going through all these scans and tests is stressful, but the upside is that you are almost finished with them.

I, too, am in a waiting mode for my brain MRI results today. No phone call from the docs, so I take that as a GOOD sign that there is nothing new to contend with.
Take care, my friend.

[mamacze]

Ann, Thank you for your encouraging words; I am grateful for your thoughts; the wait is easier when we have each other to share the ups and downs with.

And Vicki and Becky; my Atlanta posse! Once again, you come through at the clutch!

Vicki, I appreciate the "gentle squeeze"; however soon I could use a few shots of the strong stuff!! Seriously though, it is interesting that you should mention being severly hypoglycemic and needing a pancreatomy. I remember at one point it was Al, I believe that talked about a connection between insulin resistance and her 2. You asked about my oddball symptoms; they were occasional episodes of shaking chills, (no fever) abdominal pain and diarrhea. Then what I thought was a severe anaphylactic reaction to nuts (I then found out I was not allergic to nuts). My docs theorize I was in fact having a carcinoid crisis. I can't believe what you went throught with the hypoglycemia...that can really be debilitating. And thank you for the links; the first one was especially informative. I have been too busy with my 11 y.o.'s broken foot this week to really do much research.

And Becky...I also believe that the high estrogen dose BC pills I was on in the 70's have played some role in these cancer issues I have going on now. You always amaze me in your understated way; my endocrinologist also is theorizing that it could be a benign adrenal tumor...( you missed your calling, it is still not to late to go to medical school)...

Steph, I want an email from you the second you get your brain MRI results back. There is no sense for any of us to go through these white knuckle moments alone; our collective thinking has proven to be pretty darn intuitive over time.

thank you for your encouraging words. I will post as soon as i get some definitive results.