We thought it was myeloma...but it's even worse

[thornbury]

DH is 61 and had an MRI last month after physio wasn't leading to an improvement in a hip pain thay came on while running last Nov. The MRI showed bone marrow changes in his pelvis.

This week we got the CT results and it is metastatic poorly differentiated carcinoma. That means they can't tell where the primary is and it has already spread to his bones.

Next week he has a PET scan, endoscopy and colonoscopy as the oncologist thinks the GI tract is the most likely site of the primary, however they might not find it at all.

Has anyone any experience of stage 4 metastatic cancer being the first diagnosis? He has never had cancer before.

So sorry to hear this OP. Bumping for you as I cannot help with you question. Wishing you all the best.

My aunt had this, they never did find the primary and she was given a poor prognosis originally but as it turned out she lived almost 15 years on treatment, most of them in good health and pain free. Wishing you all the best

I'm sorry to hear this OP, what an awful worry. I don't have any experience but wanted to bump up your thread. X

My friend was diagnosed with metastatic cancer of unknown primary 9 years ago, in her pelvis.
She was told she could be treated but not cured.
9 years on she's still fit and well.

Thank you all, it's good to see a couple of positive stories here. We just know right now that it has been found in multiple areas of his pelvis and extends into the soft tissue on his left hip. He is in constant discomfort.

It's my birthday today and we went away for the weekend as planned. We have laughed, wept, wailed, talked endlessly, eaten lovely food, seen the sights, done some shopping and just made the most of the trip. I fear it might be the last time we spend my birthday together.

Am sorry x wishing all the best

Sending hugs at such a difficult time hun. Glad you got to spend time together on your birthday. Wishing you all the best xxx

Good luck with all the tests. They found my mum’s throat cancer only because it had spread to her jaw. She had an op to remove part of her jaw - terribly painful and horrible operation - but it was successful. She did eventually die but she had longer than they had originally given her.

Her brother had oesphageal cancer that they caught as it had spread to his bones. I’m not sure there is much they can do but I think it really depends where it started. Some of those places they can do something about (like a kidney) and some they can’t. Hopefully you’ll have a better idea of what is going on soon! The not knowing is awful.

I’m sorry to hear your news. That must be so difficult.
Has your husband had his PSA checked. I presume he will have but worth checking.The husband of a close friend of mine had cancer where the primary was unknown. It took too long to work out that it was prostatic in origin .

Yes his PSA is fine. We will see what the tests this week reveal.

Sending love, and hoping the tests were encouraging xx

Update...DH had more biopsies on malignant sites yesterday because they need more tissue for pathology and genetic testing. As part of this process, they were able to compare the appearance on the scan 4 weeks ago and now, and said that the area where the cancer has extended into the soft tissue at the iliac bone has doubled in size, as have the two affected lymph nodes.

The oncologist brought the appointment forward to today and said he must start chemotherapy on Monday at the latest, we cannot afford to wait for the genetic results to come back. He's having 5 sessions of palliative radiotherapy next week too, which aim to relieve the bone pain. It's scary how fast it's changing.

How scary @thornbury.Do they have any idea what it might be? I hope the treatment relieves his pain and I’m glad they are getting him in quickly.

@thornbury
Wising you DH all the best with his chemo and I hope you get the test results through quickly.
My DH had chemo for prostate cancer and he coped very well so I hope it goes well for your DH.
Some rare type of prostate cancer do not produce much PSA so it is possible it could be a prostate primary.

Have they found the primary yet? With my sister they only found it after doing a PET scan. Huge hugs to you both, CUPS out of the blue when you least expect it is the absolute worst. Sending love and best wishes to both of you

Thank you all...no, still no idea. He's had so many procedures, scans, lab tests and still no sign. Our only hope now is that the genetic testing indicates an origin, but it might not do. That's why they want to start chemo ASAP, they can't risk waiting only to find out they would have done the same treatment anyway.

Hey, how are you doing?

@Robogobthanks for checking in. Confirmed (if that's the right word) as Cancer of Unknown Primary. DH had palliative radiotherapy daily last week, alongside starting chemotherapy last Monday. Now it's the middle of week 2 so he's bouncing back a bit after being absolutely wiped out at the weekend.

He's had no end of tummy troubles so is reluctant to take pain meds that have constipation as a side effect. The last couple of days he's had a new pain at the top of his left thigh/groin so we're following that up. Every day is different.

He finally told his dad, brother, my parents and daughter. It's a relief to have it out in the open.

I also have Cup in the same area. Please get him to ask for movicol on a night then he can have the pain killers.

He has more laxatives in the bathroom than you can believe, and immodium in case it all goes wrong!

Thought I'd add an update. We are almost 5 months from diagnosis, which is a milestone some people with this cancer never see, yet we are acutely aware that 75% of these cases lead to death within 15 months of diagnosis.

After 3 cycles of chemotherapy, there was a really positive response shown on PET scan, with almost all of the lesions much less active than previously. That was really encouraging, and gave us all some hope. He had another cycle, then by agreement with the Dr we went back to UK to see family for a couple of weeks, which meant that the 5th cycle was going to be a week later than usual. We had a good time with friends and family and enjoyed the trip, but knew that he might not see most of these people again. Many of the people we met, even those that have been friends for more than 15 years, he chose not to tell about the cancer.

When we got back, he started to get increasingly unwell. There is a swollen, sore lymph node that we know is cancerous, and increasing fatigue, night sweats, loss of appetite, pain in groin, hip and back. Dr switched out one of the chemo meds as the genetic testing is still leaning more towards mesothelioma than anything else (but not confirmed, so will always be a mystery) and between the regimen change and checking out the lymph node, it was 6 weeks between cycles, hence the resurgence of symptoms. If it wasn't due to the delay, then it's due to resistance to chemotherapy, so not good news either way.

5 days on from the last infusion he's still super tired, very sore, taking morphine and oxycontin daily. The other issue he has is ultra sensitive, fragile skin and excessive bleeding. A teeny shaving cut or gentle head scratch leads to a constant trickle and a real challenge in healing. Yesterday morning he woke up to a pillowcase soaked in blood from the tiniest cut on his scalp. He's physically and emotionally exhausted, a bit snappy occasionally but I just let that go. I went back to work this week after 6 weeks off and I think he's struggling with being on his own again, too.

My friend had hip pain and they found mets in her hips. They did eventually locate the primary in her lung. Weirdly it was only the size of a 50 pence piece.

Sending love and strength to you. ❤️💪

I’m sorry to hear that he’s in so much pain. Sending you both strength and love.

How beautiful he’s got to see all those people he loves x