Metastatic bone cancer with unknown primary: Anyone else?

Hi, I have groin cancer lymph nodes with unknown primary.
I also start chemo tomorrow with a 3 month radiotherapy scheduled daily for 5 days a week, Monday to Friday.
I’m petrified that the chemo will damage my brain, & alter my cognitive functioning.
The radiotherapy is around the anus and groin and umbilical and I’m sure will burn my skin and
make toilet functioning extremely painful. 😰 and sleeping positioning
will be awkward.
I’m also concerned that other organs like my bladder and kidneys will also be affected by this treatment.
I’m continually asking myself why am I going to accept this treatment when I know the chemo will damage so many cells with its toxicity, and the radiotherapy will impinge greatly on my skin integrity?
Weighing the positives and negatives. Right now I’m feeling fit,
extremely well and healthy, have no cognitive problems and am a happy individual, eating and sleeping well after recovering from 5 herniated disks.
So many tests and drs. Appointments over the last two weeks since groin biopsy came back positive, but no primary located or seen on any scans.
I’ve asked could the biopsy results be incorrect. Stage 4? Metastatic cancer? But not showing anywhere else on scans except groin lymph nodes.
I had thought with the biopsy that the cell DNA would indicate where the primary originates from. But not the case.
So…unknown primary. And why have I agreed to the above listed treatment?
I think I will be doing so much more harm to my body. I’m really unsure that I’ve made the correct decision. Will it be life saving or life destroying?
Either way…decision made and tomorrow, I start on an unknown journey along with my unknown primary. I wish u well. Best of luck.

This sounds like a difficult and stressful situation. What would be the most helpful thing for you here? Do you need to hear from others in similar situations, or maybe get some support around the chemo and radiation? Do you have all the information you need, and are you comfortable talking to your doctors? Hopefully more folks will chime in to lend support.

I started out in that situation too, but they eventually figured out it was prostate cancer (even though nothing showed up in scans for the prostate itself). In my case, the lesion compressed my spine and left me paraplegic for a while.

It is frightening. But the good news is that I'm doing much better now, after some dark times, and I very much hope there's light ahead for you, too. Keep hoping, and keep pushing your care team to try yet more things, until they get the right answers for *you.*

@susan38 I wish you the best! Please keep us in posted.

@christinaclc, how are you doing on chemo and radiation? Was the bone metastasis found only in the arm or other parts of the body as well?

@mir123
Hello, I’m posting to update on stage 4 metastasised groin cancer. Still no primary located through PET or CT or ultra sound. Blood count prior to treatment did not show cancer, FBC and others requested, everything within correct range. Oncologist care team allure to this scc coming from the rectum, anus, vulva, or cervix. So whilst on chemo and radiation for these area, I’m Having surgery on Tuesday 11/11/25 for a closer inspection of the cervix. The pelvic region of my body, including my rear end is being radiated. I started with infusion chemo and have now moved onto tablets, 6 a day.
Have been ok with most of this treatment to date, but the nausea kicked in with vengeance yesterday, and hasn’t stopped. Two other issues I’m finding difficult are, the back of my neck is swelling and the pain is like a huge pressure moving upwards to behind my left ear. I feel like my head is going to explode. It’s settled a little today, but it was excruciatingly painful and severely swollen. The veins in my head felt like they were going to burst. I discussed this with both the oncologist and the radiotherapy team, as the oncologist thought it may have been the way my body had to be positioned/ twisted on the radiotherapy equipment. I do not believe this to be the case as last night the whole pattern repeated itself. My eyesight is blurring periodically, and occasionally unsteady on my feet. Today I’m resting in bed, as the nausea is relentless, even after taking an anti nausea tablet. I’m still questioning why I agreed to this treatment?
I guess I was finally convinced that if the cancer did spread from the groin into the blood system through the lymph nodes it could be more difficult to treat in the future.
I know everyone is trying to save my life for which I am grateful, but the fact is I still only have a small cancer nodule in my groin that I have been told is grade 4 metastatic cancer. For all I know the nodule may have been there for a long time, stable, not growing, not dispersing. Now with the stress and treatment it just might decide to do so.
In my mind I keep looking at the plants on our planet, trees that get damaged, cut, trimmed, poisoned etc. plants that heel themselves, and grow into beautiful evergreen healthy specimens. Nuisance Camphor laurels will re-sucker, root stock,& liquid ambers will, etc., as they want to preserve themselves, and this is a natural defence mechanism, and an energy diversion. Perhaps not the best example to give, but I can’t think of another. In reading what I’ve written now & perhaps none of it makes sense at all.

@susan38 So sorry for the situation you have & hope the treatments eventually help you feel better. Have you had an exploratory lap of your small bowel? Wondering if they could run the bowel & find the primary? Sending healing thoughts!

Thank u for ur kind thoughts. I was due for a colonoscopy on Tuesday as well as a colposcopy. Theatre times changed, as did radiotherapy schedule,
So no colonoscopy now. I think that would have covered some of the small bowel. Either way I’m resigned now to one thing at a time. And doubt whether a primary will be found.
The chemo infusions have stopped for the time being,
and,I’m taking 3000mg of chemo tablets plus nausea tablets a day. I will try to stick to this treatment till the end.

@susan38 Are the anti nausea tablets helping now? If not be sure and tell them, because there are a few different ones they can try if one is not working for you.

When I had proton beam radiation for my spine, it pretty much hit everything in my bowels. I was so sick from it for months after, with a total loss of appetite, nausea and diarrhea. I actually ended up doing better with an over the counter vs the prescribed pills, plain old short acting dramamine helped me best. I would take it shortly before meals and was able to keep the food down. It made me very tired but I would rather be tired and sleeping, than feeling nauseas and throwing up.

@christinaclc Did they do a biopsy of the bone lesions? I know it's not always 100% a pin point but usually they can narrow down what type of cells they are to have a better idea where to look for the source.

I was having a lot of bone pain for months before I was diagnosed. I never figured it was cancer, let along metastatic with lesions all over my skeleton. I didn't have insurance so went to the ER when I started with numbness in hands. I remarked how it was in all different areas of the back and the doctor said "that's odd, it's usually just one area" but shrugged it off. She did x-rays on the cervical and thoracic spine and sent me home with mild pain pills, muscle relaxers and a week of steroids. 2 weeks later I slipped and fell, it was excruciating and I mean the worst pain I ever felt, level 10+ pain in my back. I went back to the ER in an ambulance this time for fear I had a damaged spinal cord, because my legs were so weak. They did more x-rays, this time of lumbar spine. The radiologist noted lucency in L4 and recommended CT scan but the PA attending me shrugged that off and was trying to send me home again with a different muscle relaxer and lidocaine patches. The nurse who had just come on duty was asking me what was going on and seemed shocked that they were about to discharge me. I could hear her talking outside the door with the PA, telling him I had a fever and he needed to order blood work. Next thing I knew she came in with an IV to give me fluids. This kept me in there long enough for my family to convince them to do something more and they ordered the CT scan which of course came back with innumerable lytic lesions consistent with metastatic disease. They followed up with a biopsy on a larger lesion on my iliac bone which came back with results that it was some type of markers found in breast or bladder cancer. I had a lump in my breast that I thought nothing of because it had been there for years and I always had lumps come and go. So they figured it was breast origin, eventually they did further testing that showed all the markers for what type of breast cancer it is.

Part of my treatment is for my bones, I get monthly infusions of bisphosphonates and I take a calcium + vitamin d supplement daily. To help prevent them breaking easily because of all the damage that was done to them. I still need pain meds daily because they are very painful without.