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Cancer of unknown primary (CUP)

(33 Posts)
youarenotkiddingme Sun 04-Dec-16 17:36:11

Does anyone know anything about this or have experience? We are currently waiting for appointment with consultant to deals specifically with this type of cancer.

Cancer has been found in the lymph nodes in the neck via biopsy but CT/PET scans etc show no found primary.

What should we expect from next appointment and any suggestions what we should ask?

Should we be expecting treatment and possible remission or is this likely to be treatment but no cure at this stage?

TIA

Wolpertinger Sun 04-Dec-16 17:50:03

Sadly with CUP treatment is not curative as the cancer has already spread even though the primary cannot be found.

Assuming a biopsy has been possible, and the person with cancer is well enough for treatment, you are likely to be offered chemotherapy. They may have been able to identify what the primary was likely to be by the appearance of the biopsy, but if the cancer is very aggressive it can be impossible to tell and the chemotherapy is more of a 'best guess'.

As you can tell, not knowing the primary, makes chemotherapy much less successful as it can't be tailored as well to the cancer as it can be when the primary is known.

If you feel up to asking, you can ask for ideas about prognosis but this is highly variable in CUP and depending where the cancer is, the oncologist may think it is impossible to predict. A lot will depend on how much it has spread already, how well you are now and whether or not is responds to chemotherapy.

Hopefully they should have a CUP Specialist Nurse to support you and provide further information as well - if you don't meet one at the appointment, ask if there is one.

flowers to you and yours. Having met many people with CUP it's a difficult diagnosis to cope with - the first question anyone asks you is 'where is your cancer from' and it's so hard not knowing.

youarenotkiddingme Sun 04-Dec-16 21:44:06

Thank you.

It's not me with the cancer.

My fear was that it means it's already spread and it's an unknown process.

Person is actually well, says they feel fine, and still working FT ATM.

Wolpertinger Sun 04-Dec-16 22:38:09

Sorry to have confirmed your fears. CUP is highly unpredictable and if the person concerned is feeling well and working FT that's a positive sign - many people diagnosed with it won't be as well as that at diagnosis which skews any survival statistics. It's all about the individual person.

Badders123 Mon 05-Dec-16 11:01:11

My aunt survived 5 months after her cup dx but she pretty much gave up and took to her bed (she was 77)

youarenotkiddingme Tue 13-Dec-16 18:23:31

Thanks.

We now know they think the cancer is gynae in origin and they are starting chemo.
Also having BRCA test.

If test positive then I will have it.

It's so much to get my head around.

Wolpertinger Tue 13-Dec-16 18:34:07

It is good that they can identify a likely origin. Hopefully it will respond to chemo as they can direct it better now. flowers

youarenotkiddingme Tue 13-Dec-16 18:38:29

I hope so. They said the aim of this chemo is to produce remission.

I've no idea how they'll know someone with unidentified cancer is remission or not?

Whatabloodyidiot1 Tue 13-Dec-16 18:40:06

My mother was diagnosed with cup in august, tumour found in her spine, primary was never found but they hedged there bets it was gynae/bowel in origin. She died 3 weeks ago aged 60.

Whatabloodyidiot1 Tue 13-Dec-16 18:43:28

We were told by my mothers oncologist that there is no remission with cup, there would have been scanning and blood testing (looking for tumour markers) but essentially if the primary couldn't be found it would ultimately cause her death. The website 'jo's friends' is a good resource.

Wolpertinger Tue 13-Dec-16 18:44:25

Remission is a word open to interpretation. The aim will be to shrink it as much as possible, ideally to invisible on scan although that may not be possible. Progress on this will be monitored by a scan after a few cycles of chemo.

The idea is to shrink it as much as it will go and then hopefully control it at that small size for as long as possible. This would be what is meant by 'a remission'.

Whatabloodyidiot1 Tue 13-Dec-16 18:45:47

I should say you can live with cup but survival rates are very poor. Sorry to be the harbinger of doom, this has been my life (sadly) for several months, so many hours spent researching and hoping but all in vain.

desperatelyseekingcaffeine Tue 13-Dec-16 18:48:12

There can sometimes be curative treatment in cup cases but it is unusual. Prognosis is so difficult as the origin is unknown and it's best guess rather than a definite.

If gynae origin I would be concerned that the nodes are in the neck. Lymph nodes in the local area can be radically treated and may be curative (though higher risk of recurrence) Lymph nodes so distant are unusual and unfortunately unlikely to be curable.

youarenotkiddingme Tue 13-Dec-16 18:53:49

Yeah I know this isn't curable.

The lymph nodes in the neck are where they found cells. Nothing showed up on PET CT.

youarenotkiddingme Tue 13-Dec-16 18:55:12

Whata flowers

Can I ask - was your mum I'll when they found it?
Mines not - purely found because of swollen lymph node which when biopsied showed cancerous cells.

Wolpertinger Tue 13-Dec-16 19:15:41

Not being ill at the start is a big positive. Many people diagnosed with CUP are already very sick and have more metastases than your relative.

youarenotkiddingme Tue 13-Dec-16 19:18:03

It's my Mum sad

She's fitter than me, works (in her 60's!) walks miles a day etc. Still is. Well it now as teaches so has to take time off whilst having chemo due to infection risk.
Primary kids are infested snotty little buggers grin

Yoarchie Tue 13-Dec-16 19:29:19

I'm sorry.
Her age might count in her favour as she is still strong but her body is old enough for the cancer to not spread as quickly as it might do in a younger person.
I do also know a lady of 64 whose primary was never found but she is quite happily and healthily walking about 10 years later (had chemo and radio to the secondary at that time). So whilst she isn't "cured" she is living happily.
If your mums cancer is gynae, she can presumably have a hysterectomy and/or mastectomy. My mum had both (cancer) and was pleased with these operations.

Whatabloodyidiot1 Tue 13-Dec-16 19:49:12

You are, no my mum wasn't ill, like yours it was found almost accidentally, she had a bad back but she had been a nurse for 35 years so put it down to wear and tear, an MRI scan showed up the tumour on the spine. She had a PET scan after that but still the primary couldn't be found, she had camera in the bowel, mammogram, camera down the throat but nothing. It's almost unbelievable that in 2016 a cancer can remain completely invisible.

Flumpsnlumpsnstuff Tue 13-Dec-16 20:03:56

I was about to say normally they will try a PET scan to see if they can locate the primary

youarenotkiddingme Tue 13-Dec-16 20:06:15

It is whata

The not knowing what and how is hard.

My friends Mum has breast cancer that could be removed and 1 lymph node if has spread to that was removed. She had chemo but that was more if the typical mop up iyswim?
She's being great and supportive but it's so hard trying to explain a cancer can be treatable but not curable and that there isn't a clear prognosis in these cases.

I'm trying to say with CUP there isn't a great 5 year survival rate, but that doesn't mean a year only.

As highlighted above you can survive a long time in a small number of cases - but yet people don't seem to get that if you survive it doesn't mean your cured. Unlike (say) someone who has a tumor fully removed.

I HATE this

youarenotkiddingme Tue 13-Dec-16 20:06:47

She's had PET etc.

Whatabloodyidiot1 Tue 13-Dec-16 20:15:21

I know you are, it is such a massive unknown area and whilst people mean well, to be frank, I didn't want to hear about great aunt Maud's neighbour who was 'riddled with it but lived til she was 95'.....
I took the optimistic but realistic approach, before this my mum hadn't been to the dr for 22 years, to be honest I don't think I quite believe she's gone, even though I was with her at the end.

youarenotkiddingme Tue 13-Dec-16 20:30:32

flowers

I empathise but from the other side you are ATM. I don't want to accept my Mum will die. Because as much as everyone dies i imagined me being her age when she did and dying of cancer is so different from other types of death.

The truth is my mum has cancer. She will always have cancer. What the future with that cancer looks like is as clear as a piece of black paper. sad

Whatabloodyidiot1 Tue 13-Dec-16 20:37:15

I was exactly the same as you, I'm only 39. I thought she would live to be 100. She had never been ill, She had more energy than anyone I knew, worked full time, was always going on holiday and out with her friends, she was an amazing nanny to my children and I just feel completely robbed and cheated.....if you ever want to pm me I'll hold your hand through this.

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