Cancer - no primary source
Discussion
A friend of mine has cancerous growths in her chest (not breast) and her neck, and has been told that they are 'secondary' tumours and that they cannot identify where the primary source is/was. She has been through 6 rounds of hardcore chemo and 6 lots of radiotherapy, but the buggers have come back. Apparently, because they haven't found the primary source, it is harder to treat the secondary as they don't know what sort of cancer it is. Of course she is doing as much research on it as possible, but I wanted to throw it out to you people because sometimes, Pistonheads can provide some very good information and put you in touch with some remarkable people.
So if anybody has any experiences or knowledge of this, I would be very grateful to hear, as right now the doctors appear to be stumped and it's not looking good...
Thanks very much.
So if anybody has any experiences or knowledge of this, I would be very grateful to hear, as right now the doctors appear to be stumped and it's not looking good...
Thanks very much.
Well that's the thing isn't it! They did say it was a possibility that her body had somehoe 'cured itself' of the primary but that sounds like they are clutching at straws to me. They have done all the usual tests and she has had numerous scans, including the ones where they pump you full of radioactive stuff (PET scan?) and still only the two sites show. It's just horrible, because she feels as if she may have a ticking time bomb in her somewhere that they just can't find!
Thanks for the mail - will reply tonight.
Thanks for the mail - will reply tonight.
I can empathise. If it's cured itself, then why did it (secondary) come back? Unless the scans were done after the secondary was cured the second time. I suppose it is possible that the body sorted itself out. A change in internal conditions (ie to a more healthy state) and illnesses can pass without treatment. There's one place in America where they take patients that allopathic medicine has given up on (there's also a related place in Bristol but I cannot remember the name); involves stuff like radical diet changes.
The bugger with cancer is that cells start replicating and dividing uncontrollably. That's what gives you the cancer and the growths that normally go with it. As the cancer becomes more 'advanced' (or dysplastic) the cells start losing the special features that makes a skin cell a skin cell, a gut cell a gut cell and a lung cell a lung cell. Different types of cancer have different susceptibilities to different chemotherapy agents, so if you know what the primary is you can try to use the most appropriate chemo for the job. That's not to say that other chemos won't do anything though - the simple ones are all broadly similar in that they stop cells dividing in the body. The problem is that there is no point using some of the more advanced targeted therapies as you don't know what you are trying to treat.
Sounds tough for your friend - sorry that more can't be done. The PET scan is quite a good way of trying to look for cancers when other scans can't pick them up. Hope it all works out!
Sounds tough for your friend - sorry that more can't be done. The PET scan is quite a good way of trying to look for cancers when other scans can't pick them up. Hope it all works out!
Thanks dgb00 for your thoughts. The initial chemo did shrink both sites vastly, but like weeds they seem to have sprung back! so she does need more treatment, and like you say it's tough because they don't know how to target it. They are talking about all sorts, gene therapy even but I don't think they really know. I am not criticising the doctors, as I understand this is a very rare a nd difficult situation. She get's the results of her last PET scan next week, so we are just hoping it hasn't spread 
Of course I don't mind - it's almost cathartic for me to talk (type) about it! She is really amazingly strong, very determined, not the sort to wallow. An absolute inspiration. But I can see it in her eyes that she is now very very scared. When it was first diagnosed this time last year, and going through the chemo, she did it with a view of 'it's s
t now but it will get better' and now, as it is supposed to be getting better she has had this awful blow. I don't know if she will be able to go through it all again.
The trouble is she has always been very independent and private - she has a husband but no children, few close friends, and the husband is a complete wet blanket, so it's almost as though she is being strong for him which makes me so cross!
t now but it will get better' and now, as it is supposed to be getting better she has had this awful blow. I don't know if she will be able to go through it all again. The trouble is she has always been very independent and private - she has a husband but no children, few close friends, and the husband is a complete wet blanket, so it's almost as though she is being strong for him which makes me so cross!
Lippitt said:
Of course I don't mind - it's almost cathartic for me to talk (type) about it! She is really amazingly strong, very determined, not the sort to wallow. An absolute inspiration. But I can see it in her eyes that she is now very very scared. When it was first diagnosed this time last year, and going through the chemo, she did it with a view of 'it's st now but it will get better' and now, as it is supposed to be getting better she has had this awful blow. I don't know if she will be able to go through it all again.
The trouble is she has always been very independent and private - she has a husband but no children, few close friends, and the husband is a complete wet blanket, so it's almost as though she is being strong for him which makes me so cross!
having been through the husband's position this time last year with a head and neck, it is absolutely daunting to sit there and watch the person you love go through it. This lady might be 'beignns strong' for her hubby, it might just be hard for her to express her needs.t now but it will get better' and now, as it is supposed to be getting better she has had this awful blow. I don't know if she will be able to go through it all again. The trouble is she has always been very independent and private - she has a husband but no children, few close friends, and the husband is a complete wet blanket, so it's almost as though she is being strong for him which makes me so cross!
It's horrible. I could talk at great length about all of this - I posted at great length last year about our journey through this. If it would help in any way for her to talk to someone who has 'been there, done that', I would be more than happy to do so, to go and see them, what ever would help in any small way. PM me if it would help.
My lass had squamous cell carcinoma of the orthopharynx. She went through curative and hten palliative TPF chemo and radiotherapy, a traccy and way more besides. And I (think) I have come out of the process pretty sane. PM me if it you think it will help.
Russell
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