Please can someone help. We have just been told my brother Bill has poorly differentiated carcinoma stage 4. He is 31 years old. He has no underlying health issues.
Bill’s wife took him to hospital after he complained on the 29th of Jan 2021 of neck pain. The hospital admitted him they first thought he had TB (obviously after ruling out Covid). Within 24hrs of being in hospital his neck from one side started swelling. They did a CT scan which showed them that his lymph nodes in his neck, lungs and liver were swollen. They also said he had two blood clots, one from his pancreas going to his liver and one in his neck. They started giving him steroids as he was finding it difficult to breathe and swallow. The steroids helped bring the swelling down so that he could swallow (he can still swallow today and is eating and drinking).
They did more bloods and took a biopsy of the lymph node in the neck on Thursday 4th Feb 2021.
On Friday the 5th they confirmed it was definitely not TB and that it was cancer. They said they know it has spread to his liver and lungs but they are still awaiting test to find the primary source.
They also said that that the steroids were a temporary fix and that they want to put a stent into his neck where the blood clot was (this is where the lymph node is as well). The reason for the stent we have been told is so that the vein stays open and his breathing does not get obstructed.
Today Monday 8th Feb they have told him he has Stage 4 poorly differentiated carcinoma. The only treatment they can offer him is chemotherapy. His prognosis :
Without chemotherapy he has days or a week.
With chemotherapy if he responds then it may be 2-3 months.
He has chosen to go with the chemotherapy. However they can’t start that until he has the stent. The stent was meant to be done this morning but there is no bed so he is still waiting.
Sorry for the long message but I wanted to explain it as best as I could so that you can understand how aggressive this cancer is and the fact that we have very very limited time.
Anyone gone through this experience ?
Any suggestions for any private places we can go to.
Anyone been through this type of cancer ?
I just want something anything just some direction is there something more than Chemo. He has a very young family and we are devastated any ideas suggestions please.
Reply # - February 9, 2021, 02:34 PM
Welcome to Grace. I'm so sorry your young brother is in this situation. It sounds like his health care team is working to get him stabilized which is what is needed. Carcinoma of unknown primary is a diagnosis given when doctors aren't able to locate where a cancer began also known as occult primary. They are fairly rare but it does happen.
You mention looking for a private cancer center. If you're in the U.S. a large public research hospital is where you're most likely to find an oncologist who has the best info, knows of or where to find the best options, and has the most experience. The best information about this can be found here and for me one of our most important articles.
When you have a rare diagnosis it can be difficult to find a doctor who has much experience treating it which makes looking into a 2nd opinion at a major cancer research center a good idea. With the right tests, it may be possible to find the primary or find a gene mutation that has a targeted treatment that can help with the dire prognosis the doctor, unfortunately, gave your brother.
Best of luck,
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.