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Cancer of Unknown Primary (CUP)

mzlisaj's picture
Posts: 14
Joined: May 2013

Well, the PET scan couldnt detect a primary origin for my moms cancer.  So here we are.  I have been afraid to ask the dr her prognosis, because she doesnt want to know.  So I googled and saw a prognosis of anywhere from 5 months to 7 months then the longest I saw was 9 - 12 months.  I'm so sad right now and I can't stop crying.  Does anyone here have any experience of dealing with a CUP?  

Posts: 765
Joined: Apr 2012

First, I'm sorry to hear about your mother.  But have you gotten a second opinion?  PET scans cannot pick up small cancer cells.  We were told this with my husband.  Have they done a CT scan with contrast?  What opinions in treatment are they offering?  There are so many questions.  And the main question is what does your mother want to do, since it is her choice.

And many doctors won't say how long because they don't know.  It is only a guess.  My husband was told that he was terminal in January but all of his doctors never said how long because they don't know.  Only the man upstairs knows.  His cancer had spread to his lung and had reoccurred at the cervical of his esophagus.  Only thing offered was chemo and he was told it wouldn't cure, only prolong and could possibly hasten.  He had already told me no more.  He has been fighting cancer for 3 years and undergone 70 rounds of radiation and 10 rounds of chemo. 

15 years ago we had a neighbor who was diagnosed with cancer, for which they never found out the primary.  He elected some chemo but then decided no more and turned his head to the wall and gave up.  He lasted 4 months but please remember that was 15 years ago and he elected to give up.  When his cancer was found in was in his pancreas(?) and at that time, there really wasn't much treatment for that type of cancer.  We all think that a few years earlier he had a melanoma (skin cancer) removed off his back and the doctor didn't offer any follow up treatment and we all know this is the worse type of skin cancer.  So we think this was his primary.

Also unless your mother gives the doctor permission to talk with you, they can't.  It is the privacy act. 

mzlisaj's picture
Posts: 14
Joined: May 2013

The Dr has permission to speak with me, in fact, my mom rarely even speaks to them, she has given me charge over all of this.  

She has had every biopsy, ultra sound, MRI and scan around.  They have searched from the top of her head to her toes.  Her dr says she will continue her on the Gem/Carbo chemo to shrink the tumors and kill the cells.

grandmafay's picture
Posts: 1639
Joined: Aug 2009

The literature on my husband's cancer, what was online and in articles, showed that the average survival time was 22 months. He lived for 6 years. I always tell people who say their dr gave them a certain amount of time to get another dr. None of us know how long we will be here. We are all terminal. My husband always said he wasn't dying from cancer. He was living with it. He endured countless chemo, radiation, and several surgeryies. He chose to buy as much time as possible. I now look back on those six years as a blessing and a gift from God. When he felt well enough we spent time with family and friends and made memories. He even got to know our fourth grandchild who was born during that time. We cherished what time we had. We laughed together and cried together. We had good days and bad ones. It's not easy, but try to lidaytime now. Take things one step at a time. Hang in there. My thoughts are with you and your mom. Fay 

mzlisaj's picture
Posts: 14
Joined: May 2013

Fay....I appreciate it

Tina Blondek's picture
Tina Blondek
Posts: 1566
Joined: Nov 2009

Hi Mzlisa

Welcome to you and your mom. I was a caregiver for my dad. He fought Esophageal cancer which went to his liver for 16 months. It was a blessing when he passed.

His quality of life during chemo and radiation was up and down. Some good days, some bad days. Every person reacts differently to treatment. Your mom will

make the choices she wants to make. It is a hard decision. No matter where the cancer started, it is here, and she has to make that decision to treat it or not.

Can she have surgery? Surgery is the best way to get rid of the tumor. Quality of life is key, not quanity. If I could relive my experience with my dad with cancer, I

would choose no treatment. I hope I have helped you. Stay positive, pray and pray some more! Ask a lot of questions, get the answers! When in doubt, Go with

your gut feelings. Keep in touch. Hugs to you both!

Tina in Va







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