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Where do I start when diagnosed?
1 Posts
I am a caregiver to a newly diagnosed family member. So much info out there and I do t k is where to start. They found 3 secondary cancers, doing a bunch of tests looking for the primary. I just dont know where to start. I have my home set up for him so that part is good. Any advice would be great.
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2147 Posts

Hi @Munzie

I just saw your post and wanted to share with you. I too was diagnosed with Unknown Primary Cancer. It is very challenging to deal with because, as you already said they are looking for the primary while dealing with the metastatic cancer.

Normally cancer has a defined fingerprint under the microscope that makes identifying the type simple. Unknown primary has what I call a smudged fingerprint as it has mutated after moving through the body. Oncologists look at the location of the cancer(s) to give the best clues as to the origin. This along with the tumor markers found in the blood work provide the course of action toward the best treatment plan.

Was there a suggestion of doing a PET scan? This also provides information about any other potential cancer developing in the body toward treatment or assessing the origin.

My cancer is Stage IV Metastatic Adenocarcinoma of Unknown Primary Origin.

It was discovered in the left inguinal (groin) region, and based on all information likely started somewhere in the digestive tract, my immune system killed the primary, but the cancer had already moved through the lymph nodes to the groin.

A PET scan was done to see if there was any other cancer before a treatment plan was designed. I underwent chemo first to reduce the size of the tumor for surgery, as well as stop the spread further in the body. Then I underwent surgery to remove the tumor and all the infected lymph nodes. After healing, I underwent radiation as a clean up to kill any stray cells.

More cancer was found after a recurrence and I ended up with more scans (including PET) immunotherapy and another surgery.

Unknown Primary is a challenging cancer - and represents only 1 - 3 % of all known cancers. Oncologists have a lot of pre diagnosis and pre treatment work to do first - like a detective to design the best treatment path for us.

I hope this helps put things into perspective for you, and give you and your family member moving forward.

The link below is from the CCS website, and talks about Unknown Primary Cancer.


Feel free to contact me anytime if I can be of further assistance. It is hard to digest all this information thrown at us, and it is important to be able to understand what we are dealing with in order to move forward in support and dealing with the issues as a caregiver and patient.

Keep well and keep in touch.


1476 Posts

@Munzie Hello and welcome from BC! I am sorry to hear of your family member's diagnosis….it is so difficult for the entire family.

May I offer some easy to do ideas….you said your home is set up for him……terrific……"needed" things on same floor……ie bed side….needs are kleenex, water bottle, cell phone (?), meds, paper pen….lotion….crackers…..all within arms reach….perhaps create an “area” where he can be comfortable, when not in the bed…..ie lazyboy chair, or corner of couch, again, nearby….a blanket, small pillow, tv converter…..less getting up for him and less calling out to you. Perhaps set up same “area”, outside…..balcony? porch? a sturdy chair….getting fresh air is important….see people, wave hello, lifts spirits…again blanket, hat, sunscreen. Perhaps fill your freezer with favourite meals he enjoys…..if he needs lighter fare, start with that….stock up the pantry with crackers, soups, veggies/cans, water bottles, puddings….just easy to grab stuff, when you are tired etc.

Perhaps he would like a journal/pen, nearby too….when he is alone, and wishes to write his thoughts…..very healing.

Welcome again….keep sharing…..we are here to support you….and your loved one.


#Caregiver Kindness

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