I am so sorry to hear that you've been diagnosed with secondary cancer, but I do want to echo what Finty and Lemongrove have said, as what you mention (in relation to lymph node) may be officially termed secondary but may still respond well to treatment. I agree that your onc does sound very pessimistic - especially without the results of any bone/further ct scan. Three years ago I had a lymph node recurrence (in my pectoral muscle) 4 years after original dx which my onc said was classed as "secondary", but in reality was more like a regional recurrnce and they treated it aggressively.
Like Lemongrove says, the key tests are those which may show spresd to the other organs, I think. So although you may have "secondary" cancer it may not be as pessimistic an outlook as your onc seems to be saying.
I do wish you the very best of luck - and do ask your onc all the questions you want. Can you take someone with you to the appointment with the onc? Sometimes things can go out of our heads when we are in there - someone else present can really help.
Love, Mo xx
I've recieved my copy of Understanding Secondary Breast Cancer from Macmillan this morning so am reading through it. Getting a better understanding of the language which is all new to me. Big thankyou to the male nurse who I spoke on Thursday for getting this to me so quickly.
finty - I think you are right I need to speak with my oncologist again. From what I can remember of the conversation when he told me I had secondary he only wanted use chemo as a last resort treatment. I was very poorly on chemo the first time so maybe that is why I don't really know. The next time I see him I am going to be better informed and get my questions ready first. Apart from the obvious problems with knowing I've got an incurable cancer the not knowing enough about it compounds how I'm feeling.
ChoccieMuffin - Wish I'd come back sooner and wish my puddle head was working better and I'd read the post properly I could have phoned today. Nevermind.
Yvonne, the helpline is open on Saturdays 9 - 2 so you can call them today if you want to, you don't have to wait until Monday.
I do think you need to go back to your onc with a detailed list of questions and be as forceful as you can. You need a bone scan asap to check for spread to the bones and if possible to find the source of the arm pain, which may not be cancer related at all. Did the CT scan rule out lung and liver mets - and if not you need a scan of the entire torso. I would also query your oncs estimate of how long you have, and since you have had a grade 3 cancer under control for 10 years, he does seem unduly pessimistic. I would ask why you aren't being offered chemo and a more aggressive approach.
My oncologist has already confirmed that it is secondary breast cancer and told me that it cannot be cured but maybe slowed down. He has put me on Femara and I have to wait and see how that goes.
I think it's finally sinking in and this is why I am so upset.
Thanks Louise I will give the Helpline a ring on Monday.
It's understandable that you're feeling a little confused at the moment if you medical team haven't confirmed your full diagnosis.
If it helps to talk, you might find speaking to someone on our Helpline useful. They're great listeners and they will be able to offer support and information and maybe give a little clarity for you regarding the next steps.
They're open today 9-2 and weekdays 9-5.
The number is 0808 800 6000.
Hope this is helpful.
As Finty say's, just because you have been diagnosed with lymph node involvement, doesn't mean you have secondary cancer. Your medical team would need to do a number of scans, and possibly even biopsies before deciding that. When I was first diagnosed in November 2009, they thought I was stage 3 - even though I had 14 out of 23 lymph nodes involved, and my cancer was so aggressive that it had actually burst one of the lymph nodes in my neck/chest. It was only after they carried out numerous scans, that they changed the diagnosis to stage 4 (3 bone mets in the skull). So what I'm trying to say is that no matter how serious the lymph node involvement, it isn't stage 4 until cancer is shown to have got beyond the lymph nodes.
Thanks for your post
Sorry I didn’t make much clear, my head is still a bit shot.
I was diagnosed with primary breast cancer, grade 3, in 2001 and had a radical mastectomy followed by chemo and radiotherapy. As the years have gone by I have been having increasing problems with my arm and shoulder on the side of the original breast cancer so this year my oncologist sent me for a CT scan of my chest in February which as luck would have it picked up a couple of lymph nodes behind the top of my breast bone that were enlarged.
Three weeks ago the fine needle aspiration confirmed that it is secondary breast cancer. When I asked the oncologist how long I had got and he told me 6/18 months maybe 3/5 years.
He knew about the abnormal lymph nodes back in March but has only sent me for the fine needle aspiration and a biopsy to get a larger piece of the node, he hasn’t sent me for any other scans except a bone density one for a base line.
I’m feeling a bit lost and frustrated because I still don’t know where the secondary cancer is i.e. bone, liver or lungs. I don’t know what I should be asking or how to get the answers. It’s been dragging on since the middle of February when he thought cancer was back. I don’t like to cause a fuss but it’s driving me up the wall not knowing where it is.
So from reading through what you have written I have to ask for either a CT, MRI or PET scan to find out.
I'm not really sure from your post what stage you are at. Have you just been diagnosed with primary breast cancer and had a lymph node biopsy as well? If so, if it is the armpit lymph nodes it does not necessarily mean you have secondary cancer at all. Unless you have some very obvious symptoms, secondaries are diagnosed by scans - the standard for anyone with lymph node involvement would be to have a bone scan and CT scan, and then if necessary further imaging (MRI or PET scan). Scans can be organised quickly and the results take a week or so - although will vary from hospital to hospital - mine are pretty quick.
If it is a lymph node somewhere else, the situation is more serious - but the diagnostics would still be scans. Maybe you could give us some more background and we might be able to help you some more?
Suspected on 14th March this year and after a fine needle aspiration confirmed secondary breast cancer on 13th May. I have since had a biopsy so that they could get a bigger piece of the lymph node.
I am not due to see my oncologist again until the 20th June. Does anybody know if he will be able to tell me where the cancer is do you think.
My other question is how long have others here had to wait to be told where it is please. Shouldn’t I be having some sort of tests to find out.
I know I’m still rather shell shocked and not thinking too straight. I’m worried I might be over-reacting about the time frame but I want to know what I am fighting so I can find out the best way to.