Anyone have cancer with unknown primary?

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 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.

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'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.

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.

@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.

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

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 !!

Yes, - I have - after finding very big ganglions in both sides of the groin.
6 months later, I have not yet had treatment, and no side effects at all. To date the primary site has not been found. Per-CT scan confirmed that the Ganglion (inguinal lymph modes) and hepatic hilar has a tumor growth. Dont live on USA so options are limited. Will start treatment of Radiation then chemo after the ganglion biopsy has given origin of primary site. If it does not, what then?

I too have been diagnosed with unknown primary cancer. My cancer was detected in my lymph nodes in my pelvis. Its squamous cell. I have had over a dozen biopsies of the cervix, vaginal area, along with every scan scope possible with still no source. they removed a lymph node so further pathology cold be done at a specialized lab. Im currently in Chicago being treated at Northwestern Memorial. I finish 6 rounds of Chemo Cispltain with daily radiation of 6 weeks. Next step is to have more scans done to ensure no cancer has spread to other lymph nodes as the radiation was local. This will determine next path. This is what worries me the most, living with the fear that there may be still cancer traveling within my body. Anyone out there experiencing the same.