Anyone have cancer with unknown primary?

Hi @rita8898, welcome to Connect. I'd like to introduce you to @cindylb whose husband also has cancer of unknown primary. It can be such a frustrating diagnosis.

While we wait for others to join the conversation, can you tell us a bit more about your situation? Where is the cancer located? What treatments, if any, have you had?

Thanks for responding. Yes, I’ve finished radiation and chemo. As of now I’m not having immunotherapy as the last 2 PET scans showed no activity. I did chemo( cisplatin) and radiation at the same time. It really did a number on me so to speak. Unfortunately, I’m dealing with lymphedema in my hand and arm with pain on my chest and right side. Hopefully I’ll get relief soon!

@janiebill, I can understand your concern about finding the primary. You can have squamous cell carcinoma on any part of your body. Chemo and radiation together is standard treatment for metastatic SCC regardless of where it started.

Are you finished treatment? How are you doing?

My tumor is of questionable primary origin. Questionable in that Onc thinks it is yet Dermatologist says no. Nevertheless, squamous cells were found so treatment was necessary yet I can’t help but be concerned that a primary has yet to be located. This is for Metastatic cSSC. Chemo ( Cisplatin) and radiation together.

@tobydrake7, it can be disconcerting to have cancer with an unknown primary. It sounds like they are treating your cancer with a regimen typically used for stomach and/or colon cancer. What regimen are you on? How often and how are you doing?

I currently have cancer of unknown primary. Cancerous cells were found in my omentum. Started chemotherapy for gastric/colon cancer last week. Further genetic testing is being done, but no results that would point to a primary yet.

Hi Teresa,
I will briefly run through my history
I have been a career firefighter for 45 years. I retired 3 years ago and I am still involved with the fire dept as a certified fire and explosion investigator. I recognize this automatically puts me at a high rick for cancer.
In 2016 I had a mishapen mole on my left shoulder. PCP took a sample that came back + for melonoma. Sent to local "cancer" doc. Sentinal lymph node biopsy - took extended time for pathology to return -small spot, + melonoma. Believed to have been removed during LNB. The local doc wanter to remove lymph nodeds left side.
At that time I wanted a second opinion, I am familiar with the lasting effects of lymph node removal.
I am fortunate that I live an hour away from Fred Hutch and UW Medical Ctr
I meet with Dr. David Byrd and was told of large study of the simular type issue. Half had lymph nodes removed and half chose medical surveillance. He also indicated that lymph node removal was method of choice 5 years ago.
I chose Fred Hutch as my new provider and also chose medical surveillance.
For 5 and a half years I had multiple CT, ultra sounds and skin monitoring per year with decreasing frequency as time went on. Nothing ever showed up as out of the ordinary untill, on what was to be my last scan, something showed up on the CT scan in my liver. This was followed up with MRI, Biopsy. Biopsy came back as adenocarsonoma.
My oncologist believed this was not melonoma and also not the primary site of the cancer. Followed up with PET scan, endoscopy, sigmoidoscopy and additional MRI of left thigh(indicated on PET scan) I am awaiting results. From what I can read from the MRI is that nothing stands out. Strangely, it is seems counter intuotive to "want" something to show up. But I do.
I am waiting consult from last MRI. Prior the oncologist kind of charted a path toward chemo / raditaion. I will know more in a week.
As to your question, I have had no symptoms of anykind during this journey.
Not shuch a "brief" hx

Mike
Also, I am willing to share any/all of my reports.

UPDATE: I had my zoom call today with my Dr. All scans are clear outside my liver. Many areas have been eliminated. My care is being transferred to the UW / Fred Hutch Center for Advanced Minimally Invasive Liver Oncologic Therapy (CAMILOT) This group specifically deals with GI cancers. My melonoma issue is now considered complete. We are slowly peeling the onion to get to the source and deal with whatever comes next on my journey.
I will keep posting updates as they happen.
I wish all of you in the same situation the best of luck.
Seek the best of care possible. Don't take the "easy" route or settle for less than the best. As an example, I am 47 miles away from a top 10 cancer research center, it takes 3 hours travel time each way. ( Yes, I have come to hate Seattle traffic) I have local cancer resources (20 minutes away) and that is where I started. I want treatment at a research facility that sees thousands of patients, not hundreds. Always be an advocate for your care, ask questions, seek advice and even second opinions.