CUP - Cancer Unknown Primary

Hi Cocoe and all,

 Here is the contact information for Dr. Greco -

He is at Tennessee Oncology/ Centennial Medical Center

Nashville, Tn -  phone number 615-320-5090

He has studied unknown primary for over 14 years and has done numerous clinical trials through the Sarah Cannon (Minnie Pearl) Cancer Institute - if you google him look for Frank Greco or F.A. Greco and you will find some of his studies and publishings. There is another doctor that works closely with him named John Hainsworth that is also well known with research on unknown primary.

I would recommend either of them to anyone with this type of cancer!

Best wishes!

Lori

Hi Cocoe

I found a lump in my right groin & went to a  GP at home who told me it was "nothing".

I sought a second opinion ( I'm a nurse) & within a week It was biopsied, diagnosed and life as I knew it totally changed. I had been working in Canada's north. The nurses and doctors still call & email me to see how I'm doing.

I went through chemo last winter after it was determined to be CUP. I still did not understand what it was until I did my own research and of course did not like what I read.

My Oncologist is great and available to answer questions almost every day. I'll be seeing her after the CT scan.

We are lucky here (in Canada ) because of our health care system.

It is difficult for caregivers but just be there for your mom.

Dianne

Hello,

My husband is 37 and was diagnosed this past Memorial day.  We've been through 6 biopsies and had pathologists from all over the country looking to determine the type with no success.  We were given the CUP diagnosis and began a carbo/taxol treatment.  We have now done 2 and we are due for a pet scan in 2 weeks to see if it is working.  It still drives me crazy they can't figure out the type.  I see you wrote that Dr. Greco mentioned DNA testing to determine, have you heard any more info on this?  Thanks for any info. you might have and keep fighting, my prayeres are with you and all others who have had to face this difficult journey!

Hi,

I talked to my doctor in Atlanta about the DNA testing and it was her feeling that “other than for curiosity sake” it wouldn’t be much benefit.  I am a little worried that if a real diagnosis came back different than the liver and lung diagnosis we are using my treatment may have to be changed (and it seems to be working).  You see drugs are only approved for certain diagnosis.  So at this moment I have decided to wait until I talk to Dr. Greco again.  I will see him in about one month.

I did however do some research.  It is actually called genetic profiling.  There are a couple companies that perform the test.  Agendia CUP Print is the one that I contacted and they said the test would cost about $2000.  Some insurance may pay for it.  http://usa.agendia.com/

I know that not knowing the source is frustrating but, the only thing that really matters is knowing that the medications are working.  I did taxol and carboplatin along with avastin.  We also monitored tumor markers.  Are you doing that too?

Shelley

Hi there

If the chemo is working you know they are on the right track.

I had the Taxol carbo combined with etoposide. I finished chemo six months ago and feel great.

CUP is what it is. I too was stressed over them not finding a primary. Thank goodness for Dr. Greco and his research. We all benefit.

Dianne

Hi Patti,

 My story sounds a lot like yours.  I have several tumors in my liver and lungs (and across my abdomen) found accidently.  My first two PET scans did show activity and I was on Taxol/Carboplatin and Avastin.  My tumor markers started out high and quickly went to normal.  By the third PET there was no activity and the tumors had stopped shrinking.  My two doctors couldn't decide if the tumors were dead or not.

Dr. Greco wanted to play it safe and changed me to Gemzar and Irinotecan with Avastin.  There as been a little improvement in tumor size but not much.  I have another PET next week and if that remains stable my doctor may want to put me on a BREAK too.  I am not sure if I want to do that.  Like you I am scared. 

 I talked to another doctor that told me some of his patients just stay on a low dose chemo because they are scared too.  I havent decided what I am going to do yet. 

Have your tumors shrunk or not?

Shelley

Hi!

Mine have Never shrunk, on anything. But they've not grown either - once they thought one did, but I guess they are debating that now too.

I'm off Xeloda as of last Thursday.  We stopped one cycle early because I'd not been feeling well and it just seemed like my body had had enough for a while. Nothing terrible, just gas, stomach ills, diarrhea, pain in my side, stuff and super super tired.

I'm feeling fine now, just got back from a picnic in the park actually! I'm hoping nothing will happen. I have another CT scan Dec 2nd and if that one is OK the next won't be for three more months. I'm ready for a break! 

Hope you're doing well -PLEASE keep me posted!

Hugs,

Patti 

Hi Dianne,

 Was your cancer only in that lymph node or had it progressed?  How long did you do chemo before you stopped?

Shelley

Hi Shelley

The only lymph node they biopsied was the right inguinal.The CT scan indicated that the left inguinal and retroperitoneal chain was also affected. I started chemo in early December 2007 and continued every 3 weeks till late March.

I've recently had some odd symptoms - night sweats, chest wall  and abdominal pain - I hope that it's nothing - like I'm now neurotic. I had a CT scan two weeks ago and see my oncologist next week.

I'm at that "OK now what? stage.

I find  it very frustrating.  I'm happy that I've reached the one year stage. I'd love to find more of us "CUP cakes"

Dianne

Hi Dianne,

 I am so happy that you are one year out!  I'll tell you hearing that really gives me hope. 

You sound so patient, waiting three weeks for your results.  I usually wait one or two days at the most and then go to Medical Records at the hospital and get the report myself.  My doctor has never read the results before me.  I know, I am VERY impatient. 

I do know what you mean about being neurotic about new symptoms.  Previously I ignored ailments and didn't go to the doctor for anything, I just knew it would eventually go away.  I wonder if I will be the same after this ordeal.

Good luck with your CT's.  I'll definately pray for you.

Shelley