Anyone have cancer with unknown primary?

I had tumor growth in the inguanal lymph nodes mentioned March 7th. After many many biopsies they never were able to detect the primary source. They were able to understand the type of cancer from the biopsies though. I just finished radiation with chemo (cisplatin) for 6 weeks. They did a scan and there was no cancer detected. I will have a scan every 3 months for the next year or so. So far so good. The treatment wasn't easy but definitely worth it. Feeling pretty good now !!

Hello cindylb, I apologize for not getting back to you sooner.

@cindylb and @sheridonaldson, how kind of you to wish to exchange emails. You'll notice that I removed your personal phone number. Connect is a public forum. We recommend sharing personal contact information using the secure private message function.

However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.

Sheri,
I've been super busy (aren't we all) and apologize for not being more in touch. If we start a conversation on here I think we can accomplish a lot....so please let me know how I can help. I will private message you and you can reply.

I'm sharing an update on my husband's cancer of unknown primary (CUP). Soon it will be year 8 of my husband being diagnosed with a small tumor in his lung and an 'angry' lymph node near his lung and heart. For two years the cancer stayed pretty much stagnant (no spread) but his health was poor. Looking back I believe that there were several reasons for his ill health - the cancer, an undiagnosed heart condition called SVT which caused fainting spells and has been fixed by an ablation, COPD, benign essential tremor, and pain from a serious accident that damaged his feet in his teens, which still continues to be one of his major sources of pain.
After two years the cancer spread to his hip, his spine (maybe his adrenal glands) and his blood tumor marker tests were 1000% over normal (how is that even possible). He opted for 3 types of radiation over the years - standard radiation, cyberknife and a third highly targeted radiation treatment. He also had 3 rounds of chemo (only 3) with Cisplatin and Keytruda Immonotherapy.
Something here worked! He has been free of active cancer now for just under a year. We continue with PET scans every 3-4 months and blood work. The CEA blood tests he has each quarter will rise significantly when the cancer has come back or is going to come back. For him it shows the circulating cancer in his system. We still don't know the cancer type but since the lymph node that was spreading the cancer has been all but destroyed, the cancer seems to be in remission (of sorts).
We are now focusing on all the other health issues he has and some that were caused or heightened by the treatment. During this 'quiet times' we try to get his body as strong as possible and address symptoms that may not be related to the cancer.
My husband was told he had 'months' to live at best and here he is years later. Due to this being CUP it's very hard to know what worked or what will happen, Each PET Scan is scary for us......but we hope that perhaps the cancer is gone, at least for a long time.

I have a close friend who was diagnosed with a low grade cancer. Last month they removed a mass from her stomach. They cannot find the source. In late April, she is scheduled for a 14 hour surgery. They are using what she called a new technique that involves a one time, large blast of chemo.
Apparently, they will be looking at all her organs in an attempt to locate the origin. She is very sketchy on details. They mentioned removing part of her stomach and intestines and the possibility of an ostomy bag. Has anyone every heard of this type of procedure? Thank you.

I was diagnosed with metastasis squamous carcinoma of unknown primary, at stage 4. The inguinal lymph modes had large ganglions. After many tests, I had a PER/CT scan. Cancer of the hepatic hilar , and traces in the ganglions were found. Enlarged heart and two other growths found. Final biopsy was requested to see , even though the tumor has nor been found, they could find the source. No operations at this this stage. Just daily radiation therapy for weeks, combined with chemo. What your friend is experiencing sounds scary. It seems after the vaxx more CUP cancer is popping up. Wish yr friend luck.

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?

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.

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