Carcinoma of Unknown Primary

[Her0utdoors]

I'm struggling to know how to phrase my question.
My dm died shortly after being diagnosed with secondary metastasis . We were told there would be a slight chance of determining the type of primary tumour from a biopsy of one of these but dm decided that the risks involved, as well as the negative affect on the quality of her remaining life not to go ahead with this. She spent her last few hours at the local Hospice, it felt very rushed after she died with answer phone messages left asking when we we having the body moved ( she died at 6 am, messages by midday). I appreciate the pressures on the Hospice for bed space but I'd been told there was no rush...so the undertaker was engaged and her body was removed.
Shortly before her diagnosis my dh also received a cancer diagnosis and it took nearly two years to receive an acknowledgement that some basic information about his treatment had been accidentally omitted from what we had been told about his surgery. This has caused a good deal of distress for him, and also my self.
So, my question, should dm's body have been taken for tests to try and determine the type of primary cancer?
Yes, I have pursued this via the consultant at the hospital where dm was diagnosed and was sent a letter suggesting I look up CUP on line. Given how persistent we needed to be to get our questions answered after dh's illness I feel I may have been fobbed off.
I have lived with grief almost all my life, and am stricken by it most days. This, without a doubt contributes to uncertainty that I may not be behaving rationally .
Thank you for reading this, putting it in writing has lifted a weight.

[helpfulperson]

I can understand that you feel you don't have all the information but what benefit do you think you or the medics would get from knowing now what the primary cancer was. Would it really make you feel better to know if was breast rather than lung or viz versa? Your mother chose not to have the tests to establish this, for very good reasons, at a point where it may have influenced treatment

[Floralnomad]

Post mortems are generally only done on people who die unexpectedly , die within 24hrs of a hospital admission or die without a diagnosis . Your mum had a diagnosis metatstatic cancer and she chose not to undergo investigations so I would not have expected a PM in those circumstances . Sorry for your loss .

[CotswoldStrife]

It seems that over the last two years you've had some issues that you have found difficult to deal with - your mother's death (so sorry) and your husband's diagnosis (which happened so close to the loss of your mother).

I don't think you have been fobbed off over the death of your mother. It does not sound as if a PM should have been done (sadly, her death was expected) and you have to accept her decision about the tests she was offered.

I understand that we all deal with grief in different ways, anger is often felt by those left behind. You do seem to be carrying a burden of resentment which is directed towards the hospice and the medical staff that dealt with your mother though, and from what you've said on here that seems unfair. We don't always have all the answers we want.

I hope you are getting some help to ease that burden, and that your husband's treatment is going well.

[reallyanotherone]

What benefit would it bring to know? With respect, it's not going to change anything regarding your mums treatment or the outcome.

These tests are expensive for the nhs, and invasive for the patient, so they wouldn't be done unless it would change treatment while they are alive. It would not be done after they die as it benefits no one.

If you had wanted to know for your own reasons, you would have had to get a private PM.

[Hulder]

I am very sorry for your loss

There seem to be 2 issues over your DM's death so I am going to try to suggest answers to them separately.

Firstly asking you if you have an undertaker after the death. I'm sorry this felt rushed for you. It won't have been about bedspace at all but many hospices do not have a mortuary. It would be normal to ask you if you had chosen an undertaker the same day and for them to collect her body that day or the following day from the hospice cold room. It would be part of the standard questions you are asked and I'm sorry it felt rushed or pressured for you.

Secondly about cancer of unknown primary. Clearly your mother was too unwell for a biopsy but it sounds as if there was no obvious primary cancer either - generally if there is an obvious primary on scan, the doctors will say so and call it that.

Even with a biopsy, you may not get to the bottom of what the primary is. You may get something along the lines of 'looks of gynae or upper GI or whatever origin' but that isn't that precise - but is enough to give an oncologist a better guide on what chemotherapy to give someone that a complete guess. However with a really agressive cancer, even with the biopsy, it may not have any signs of the original primary at all.

So even with biopsy results it still stays as Cancer of Unknown Primary.

Cancer of Unknown Primary is thought to develop when the original cancer is really tiny - too small to be seen on a scan - but still some cells break off and metastasize. Or it grows in a disorganized fashion and the primary dies having not formed a blood supply but sadly after it has metastasized.

I hope this helps you. I don't think a post mortem would necessarily have told you more information about your mother's cancer and I can see that with what has happened to you since, information and lack of it are a big part of your grief.

[Her0utdoors]

Thank you all for your kind and informative replies. For those who ask what the benefit of knowing the type of primary tumors, it would be to know if it is hereditary (if that's the right term?). Dh's cancer is considered likely enough to occur in our children that the NHS- should it have survived- will offer them yearly screening from age 21. Dh is 'well' although living with the physical and emotional effects of his treatment is not always straight forward and he will continue to have yearly screening for the rest of his life.

[Hulder]

Unfortunately I just don't think you are going to get that kind of answer. It was your DM's decision as to what treatment she did or didn't have and as you discovered, a death certificate could be issued without needing a tissue diagnosis. She probably also wasn't well enough for more than she had, even if she had wanted it.

If it helps, your DM's situation would be different to your DH's as she developed cancer at a much older age so making it far less likely to be of interest to cancer geneticists. Having a type of cancer like your DH that results in screening for children is actually very unusual - for most people cancer is a common illness and they simply have it because it is common.