OK, there are a few people here who are either involved in the medical profession or might have been affected by cancer through their family. I wonder if someone can tell me the difference between primary and secondary cancers, particularly in relation to the treatment. I'll elaborate...

My Auntie, who's in her early 60s, started suffering extreme abdominal pains about 6 weeks ago and was rushed into hospital. After examination and tests, it was discovered that a large lump had developed in her ovaries, the consultants at the time thought it was likely benign but it was removed about 2 weeks later - basically they took away everything, so she had a hysterectomy. Luckily, they said the lump hadn't attached to her bowel - which can be quite common in these cases, apparently. So, we were quite relieved that it didn't appear to have spread to other organs and seemed to be contained within one area.

Two weeks later, they got the results back and the news wasn't fantastic. It was confirmed as ovarian cancer. However, they said that the tests had found that this lump was a secondary cancer and that the primary source wasn't known. So, more tests will follow in the next weeks and months to find the primary cancer. In the meantime, though, they say they can't give her any chemotherapy or radiation treatment until they find the primary source. Alarmingly, the consultant told her that sometimes they can never find the primary one and so treatment can never begin. She has no pain, or lumps, elsewhere so it's a bit of a mystery where the primary one is lurking.

And so, my questions...
• How do they know that a lump is a primary or secondary cancer? What's the difference?
• Why can't they give her chemotherapy to treat the secondary cancer, even if they can't find the primary cancer?
• How do they find where the primary cancer is, presumably without surgery. Full body scan? Something else?

And finally, she sees the Consultant/Oncologist this Friday again, we've told her to write down a list of questions to ask, as invariably your mind goes blank when sat in front of the consultant. So...
• What type of things should she be asking?

I'm sure everything that can be done, is being done. It's just happening so damn slowly, and in the meantime this primary cancer could be growing and spreading. It's a worrying time for my Auntie, Uncle and my cousin. My Uncle, in particular, has taken the news badly and is on some sort of tranquilisers to calm him down - he had a major panic attack on the day she was to see the consultant so he couldn't go - my mum went in to the consultant with her, which is probably a good thing as my Uncle was in no fit state to take it all in. My Auntie, on the other hand, seems to be coping remarkably well under the circumstances - she's recovering from the surgery well, it's just all this waiting to find out what the next stages of testing and treatment will be. It's been 6 weeks since the initial diagnosis, 4 weeks since surgery. I imagine it will be another 2 or 3 weeks before the next tests to try and find the primary source - it just seems to take so long between hospital visits.

Anyway, any advice gratefully received, as always.

First thing to say is I am not a GP/Medical doctor but have a fair knowledge.

Primary cancer is the first site of the tumour. Secondaries are where it has spread distant to the site with no connection, by the bloodstream or lymphatic system. Spreading is generally bad, as there is likely to be more than one secondary. Treating this alone without identifying the primary is not likely to be effective - chemo may help as it's often a drug which spreads through the body, but radiotherapy needs a target.

Ovarian cancer is cancer of the ovaries. Only two of them in the body, so it seems odd that they can't identify the source. A secondary ovarian cancer is no more likely to spread to the other ovary than anywhere else (probably less so). Perhaps the secondary was in the womb, hence the hysterectomy. That's one question which needs to be asked. Also were both ovaries taken out? If so, were they biopsied too? If not are they planning to remove or scan and target with radiotherapy.

The other thing is type of cancer, some are more "aggressive" and spread quicker and wider.

There's supposed to be a two week limit on the wait for cancer appointments. time is usually of the essence.

Firstly sorry to hear your news. I've had close contact with cancer.

Things she may want to ask:

What side affects will there be to the treatment short term and long term? - my Mum was greatly affected by it and still is many years later. At the time it even affected her sense of taste.
Will she need round the clock care? - by the sounds of it your Uncle may not be able to cope if she does

Look in to help from the McMillan nurses. They were a great help with my Dad was ill.

I can't think of anything else at the moment but if I do will let you know.

Thanks to both of you! All good advice, and do keep it coming if you think of anything else. I was under the impression that in a hysterectomy they take out both the ovaries as well as the womb - or did I got that wrong?

From what I was told by my mum, the doctors said that they were confident that the growth hadn't spread beyond the womb, as in these cases it often does attach itself to the lower bowel - in fact, the consent form she signed agreed to them removing part of the bowel if it had spread to there. However, as we're now told, the tumour in the womb was a secondary cancer so there's a real chance there could be other secondaries, like you suggested - as well as the main source too, of course.

I can understand why the primary site needs to be located, but you'd think they could start *some* sort of treatment, wouldn't you? I guess they're the experts though, so you've got to put your trust in their knowledge and experience.


Absolutely, the trouble is it's two weeks to see the consultant, then 2 weeks to get your results, then another 2 weeks to see the Oncologist, then another 2 weeks... etc. I do understand why it's that way, and of course there's other people waiting for appointments too, but it's frustrating for them all the same. Like you say, time is of the essence in these cases. I suppose we're all just worried that all these two weeks are going to add up and before you know it, it'll be 6 months down the line before we get any action - then it could be too late.


At the moment, apart from being a bit sore where she's had the operation, she feels OK in herself really. The wound is healing well, but it'll take a few weeks to get on the mend properly. Apart from the wound healing, she has no pain anywhere else, yet. So, at this stage at least, there's no real requirement for any care, other than rest - which she's getting at home. My Uncle seems to have good days and bad ones, I don't think he's on these pills every day, just when he feels the need to calm his nerves - my concern is that he could get dependent on these pills (I'm not exactly sure what they are). This is another worry for my cousin - not only has his mum had a major operation, but his dad keeps having panic attacks and shortness of breath. Not good, not good at all.

This is worth reading http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Unknownprimary/Unknownprimary.aspx

Thanks for that. That's helpful, as it's written in plain English, not medical jargon.

One other question to ask you knowledgeable people...

The consultant did say that sometimes they can never find the primary cancer site as it disappears all on its own (without any treatment) after it's spread to a secondary cancer. I do find this hard to believe, but guess it must be true. I suppose this just shows there's still a lot we don't yet fully understand about cancer and the way it develops and moves around the body, doesn't it?

Sorry to hear about your family. Sounds like they are going through a lot at the moment.

Am on piephone so limited responses.

As others have said, there is a primary and it has spread. Cancer can either spread locally eg bowel, bone etc or systemically eg lymph nodes or blood. If you don't know what you're trying to treat, giving a patient hemo will only end up giving them side effects. It may not be a cancer that responds to chemo.

A full body scan might not show up the primary cancer. You might never find it! Depends on what it was. A hysterectomy is just the womb. Ovaries can be left in, as can cervix. Depends on the procedure and the indiciations. You're aunt won't adequately heal for 6-8 weeks if they went in through the abdomen. Quicker if they went in through the vagina.

Finally, have a look on the macmillan website - lots of useful info.

Will post more when I get back from the hospital.

Gah! Didn't see the last two posts. Nm.

Steve I know you and your family are probably in the panic stages at the moment but your Aunt is getting cared for. These things do take time.

If it's any consolation my Dad survived cancer for 11 years before he sadly succumbed to the disease last year. One thing I will say is diet and outlook go a long way in fighting this disease. No matter how bad he was he never complained he had the best organic food. They live in the country so have easy access to farm shops but they also signed up for organic vegetable delivery service which only delivered produce in season. Might be worth thinking about.

Here's a couple of links

Riverford

Abel

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Hopefully gives you some direction to go in. We know what types of cancer cells develop in ovarian cancer so a biopsy can be used to determine whether the cancer originated in the ovary or not. The primary, as I said, is sometimes never found. They can give her chemo if they think it will respond. As I stated before, sometimes it's inappropriate. Sadly, sometimes cancer can spread to the point where all the chemo in the world can't do anything. This is the point where we change our approach from trying to tackle the cancer to trying to tackle with the symptoms.

Have a read through the links everyone has given. Think about what you would like to know and write it down. Then discuss it with your aunt. She might want to know everything there is to know. Or she may be content with what happens. In this situation, people often react differently to if it was something else or someone else who was affected.

I was going to give you some questions to ask but I realised I'd be coming from a medical approach so it's probably best to have a read around and think of your own questions. I appreciate you're anxious about the timing but the short answer is this: if it's a very aggressive cancer, she may well have a very short time left and the chemo would take up more of her time with no guarantee of any improvement or more time to live. If it's a slower cancer, then there's not going to be an issue in the wait (in terms of the cancer) - it just increases the anxiety. My own experience shows that what's important is how soon the cancer is picked up and the type of cancer, not so much as the type of treatment or when it starts.

I appreciate that it's a very difficult time for you and your family. Sounds like your uncle and cousin need all the support they can get and I think them knowing you're there with them will be very helpful.

Thanks for those links, I'll have a read this evening when I'm not at work. Everything you say makes perfect sense, I'm sure my Aunt and Uncle will be more relaxed once they know exactly what they're dealing with - especially with my Uncle, I'm sure it's more the uncertainty that's causing the panic attacks. Hopefully they'll subside once they have a clearer picture.

Thanks for all the advice so far.

The c word alone is enough to send most people into a blind panic. I remember how I felt when my Mum first told me she was ill so sympathies to you all.

My mum is having her first round of chemo tomorrow, anyone has any advice?
I just went to buy her loads of nibbles and I'm making soup for tomorrow night

My mum was too sick to even think about food after chemo. Just the smell made her feel like she was being ripped inside out. It was worse with every session. She just wanted to sleep, and cry.

That was a few years ago now. She has regular check-ups and there's been no serious problems, touch wood...

+1. The chemo can be very draining and she may not wish to do much or eat much. Just need to be as supportive as possible. Hope it all goes okay.