Anyone have cancer with unknown primary?

Hello,
I feel great! I have never had symptoms of my cancer. I workout up to 5 times weekly, pushing myself to remain strong. I eat a healthy diet including 3 fruited and 3 vegetables per day, and limit my sugar intake.
I started with carboplatin, Etoposide, and Atezomizalab for 4 months. genetic testing showed my cancer positive for the HERS2 receptor- apparently a first in large cell poorly differentiated NET. So I started Enhertu. This drug cleared my body and bones in 4 cycles! I remained on it another 6 cycles, then developed lung inflammation. Doctors took me off the drug, I missed a treatment cycle, then resumed with Traztuzamab for a short time. Scans revealed progression again. I underwent radiation of a few areas, then whole brain radiation therapy in May 2022. I began Traztuzamab/carboplatin/Capecitabine, had to drop back to a lower dose due to hand and foot syndrome and GI distress. Not fun! My hands are still recovering from the Capecitabine. When this treatment also failed, I had more radiation and started IpiNivo (Ipilumimab/Nivolumab) in October 22. In January this year doctors decided to rechallenge with Enhertu at a lower dose, which provided some regression but still progression in other areas. A new genetic test and a look back at my first test showed the presence of EGFR, so I started Tagrisso May 19. My next scan is the end of June.
In April I had a PET CT to see if my cancer may have somatistatins, and I do - another miracle in this mixed up cancer. This means Lutathera is an option for me.
I have learned that I must persevere through each of these. I take one therapy as long as I can knowing that gifted scientists and docs develop new treatments all along.
I have hard days, no doubt. 8 treatments in 27 months has been hard to reconcile. So I surrender to my faith.
I offer encouragement to everyone! Elli

My husband had been diagnosed with metastasized cancer on spine, hip, ribs, and shoulder. After biopsi, it was determined to be Adenocarcinoma type. That was in March. Since then, he has had a pet scan, endoscopy of
complete GI track, endoscope of neck/throat. Now they are getting ready to say it is CUP, and start some type
of "shotgun treatment". He was walking 5 miles a day back in November, but is tired and week. He only walks
one mile a day now, and can a little work for short periods. God has given him extra doses of patience
(not of his own) . He is going to MD Anderson in Gilbert Arizona. Any input from those who have experienced this? Thanks!

A fellow cancer patient. I have neuroendocrine cancer. Diagnosed 3 months ago, but like most it took years to put a name to all my symptoms

Hello @elliwiemers,

As someone with a history of NETs (three surgeries for NETs in the duodenal bulb), I would like to invite you to the NETs discussion on Connect. Here is a link to the many discussions you will find there.
--Neuroendocrine Tumors
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
You might be especially interested in this conversation,
--Lost with No Confirmation
https://connect.mayoclinic.org/discussion/lost-with-no-confirmation/
You mention many areas where NETs have been found. How are you feeling? Would you share what treatments you have had?

I do as well. Diagnosed March 2021 with Neuroendocrine cancer of unknown origin, bone, brain and lung metastases. Several wonky characteristics make my cancer a conundrum , however, I get wonderful treatment at Mayo in Rochester, MN and Fairmont, MN. I have been through many therapies, each with some success as my wonderful docs continue to research. I am in good hands.

@holdingon2abba, what treatment options were available for you?

My sister was just diagnosed with carcinoma of unknown primary. She started having symptoms the day after her 35th birthday. It took a month and a half to figure out what was going on (6 ER visits, primary care & pulmonologist). One ER told her she had gallstones, I took her to another the next day because I thought if she’s been in that much pain and sick for that long, her gallbladder should need to be removed quickly. Instead we were told she has a mass on her lung that was very concerning and could be cancer. Two different hospitals have tried to determine the primary with no luck so far. As of right now we know she has a spot on her lung, adrenal gland, thyroid, neck, spine, rib cage and hip bone. She had 2 weeks of radiation to try and help with some pain. She starts chemo Monday. We are also waiting for results from a Tempus test. I’ve been in contact with City of Hope (Cancer Centers of America) and we should be making a trip to them within the next two weeks.

I do and was diagnosed at Mayo Clinic Florida mid march this year.

I have been wondering for quite some time whether I have some rare or unusual cancer whose source cannot be located.

My symptoms have been going on for quite a while, and over time, have only increased in number and gotten worse. But my general feeling is that most doctors seem to assume that each symptom I’ve reported has a different, common condition underlying it. Yet over the past seven years, I’ve been tested, examined, re-tested and re-examined for many, many common conditions, all to no avail.

So, it seems to me that I need to see someone who specializes in uncommon diseases to get a diagnosis. But what I think I’ve found is that I can’t see one of those specialists without a diagnosis.

I am a white male in my mid-60s and on Medicare. In fall of 2021, I tested positive for the JAK2 V617F mutation and was given a diagnosis of essential thrombocythemia. But medical professionals have told me that ET most likely doesn’t explain any of the symptoms that most concern me.

Right now, I am waiting for another MRI, this one of my left thigh. If the MRI reveals/confirms a lump, I might get an appointment with an orthopedic oncologist at Mayo Phoenix. If not, then probably not. So, I don’t want to put all my eggs in that basket; meaning, I don’t want to hope that this test will finally provide an answer.

And so, I’m reaching out to this community to try to find some suggestions on what to do.

I believe an orthopedic oncologist is exactly the kind of specialist I need to see. But I also believe that my case needs a doctor with “Oz-ian” traits – a heart, brains and courage: One who will “think outside the box”, outside of the ordinary; one who would look at my case and say, “Wait a minute, this is not 20 common conditions causing these symptoms, this is a single serious illness”; one who will understand that this illness is also not common, but very likely is some unusual disease; and one who will then proceed to look for a diagnosis – an answer that cuts across and provides an explanation for most or all of these symptoms.

The symptoms that most concern me are the soft-tissue lumps or masses throughout my body. While it does not include all of my symptoms and concerns, here is a list of a number of those masses:

• A hard lump on the top left side of my head, persistent and growing larger and more tender. Nothing was noted in the report on an MRI in the fall of 2021. But in April 2022, a dermatologist said that the lump was, in her word, “bone”, and recommended a re-reading of the MRI.

• A large hard lump in one of the left front ribs, and a smaller lump near the end of that rib.

• Hard lumps near the joints nearest the fingernails of the right index and little fingers. The index finger is painful and tender. A lump between the right thumb and index finger. A lump in the knuckle between the left palm and little finger.

• A lump in the left thigh, above the knee and to the inside of the leg, which has been confirmed visually by four medical professionals. This is the mass to be examined in the MRI in May.

• A firm lump near the small toes of my right foot that appears to show up in an x-ray from July 2019. In June 2020, my PCP noted: “Plantar surface of the distal metatarsal of the right first and second is slightly more prominent than the left, and is tender to palpation.”

• A painful lump on my tongue; a small painful lump in my left groin; and a firm lump and hard lymph node in my lower right abdomen.

My focus on these symptoms is because they are physically, externally visible, which suggests to me that they should be visible on internal radiology exams as well.

Thank you for reading this message and for any comments, questions or suggestions you might have.

Welcome @marypaul, Your friend has a big surgery coming up. But as you said she is a bit sketchy on the details. It can be a lot to comprehend.

She may be referring to HIPEC which stands for hyperthermic intraperitoneal chemotherapy. HIPEC works by using high-dose chemotherapy to kill microscopic cancer cells inside the abdominal cavity. The procedure is performed in conjunction with cancer surgery. You can read more about here:
- Mayo Clinic Q and A: Unique chemotherapy for late-stage cancers https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-unique-chemotherapy-for-late-stage-cancers/

Do you accompany your friend to her appointments?