Hi,
I’m considered to be a high risk of recourrance as I had 6 lymph nodes engaged and because of my age. I’m just wondering, does anyone know if there are specific tests to check for secondary cancer? If so, what are they and how often should I have them?
My oncologist says time will tell if the treatment has been successfull but surely, it can’t be just a case of me waiting to see what happens??
Lisa x
Hi Lisa,
I’m afraid that often it is. Some hospitals seem to do more scans & tests than others. My hospital will only scan if I have symptoms to suggest there may be secondaries.
But even if you have a scan, it will only show up tumours that are bigger than a centimeter or so. So you could have very small secondaries, but have a clear scan. Or you could have microscpic cancer cells lying dormant, waiting for some unknown future event to trigger them into action. There is no test that would find those. Sorry if this sounds depressing - but it is the way things are, and no-one knows for sure if they are cured. I have read that it makes no difference to the final outcome whether secondaries are found early or not - it just gives you longer to live with the knowledge. You may as well stay in blissfull ignorance.
None of us with a primary diagnosis knows what will happen in the future. You can have a poor outlook and live, or a good outlook and die. We all need to make the most of every day, and try not to worry too much. I know that’s easier said than done, but think of it this way. Say the worst happens and your BC comes back. Which would be better - that you had passed the intervening time worrying about it, or that you had lived life to the full and enjoyed every day?
On diagnosis I was given a liver scan, chest x-ray and a CAT scan - which is the norm in this area.I go back for regular checkups and will not be having any more scans etc unless I present myself with secondary BC symptoms.Good luck Lisa! I know its easy to say but don’t waste time worrying about what may never happen.
Too true. Look on the bright side - you could be run over by a bus tomorrow!!
Sharon
Hi Lisa
I totally agree with Roadrunner. I had a poor diagnosis at primary stage and went on to have nine and three quarters (!) of good remission before I was diagnosed with secondaries.
I think it’s about you being aware of the signs and symptoms of secondaries (if you want to know, not everyone wants to) so that you at least are aware if you do have to present to your GP with back pain, etc. then hopefully they’ll send you for further tests.
Hopefully you won’t have to - good luck and here’s to the rest of your life in remission.
Pinkdove
Thanks for the responses/info and well wishes ladies.
I had an appt with my onc yesterday and talked this through with her. Yes, you’re right, it seems if the bc returns in an area other than the breast then it isn’t considered to be urgent per ser as there is no ‘cure’ anyway. I just wanted to get this clear in my head as I’m due to return to work in Saudi in the next few months and the docs in saudi botched up my original diagnoses …ALOT! So I don’t have too much faith in them. I’m going to have another CT scan here in the UK before I return to Saudi just to be clear of where I stand right now. I too had a couple of scans just before I started my treatment here and the CT scan revealed a 2mm nodule on my lung you see.
For the most part, I feel like you’ve all described. I do want to get on with my life and to feel like I’m just waiting for something to happen is the most unhealthy mindset I can think of. I actually felt reasurred by my onc, in that, I am doing everything in my power and I’m not missing anything - dunno if that makes sense?
Anyway, thanks again - Lisa xx
Hi Lisa
I’m not sure whether some of our posts have been a bit misleading because I do feel that if cancer has spread to other parts of the body you are back in the system straight away regardless of whether it’s in the other breast or not. Although there is ‘no cure’ those of us with secondaries are living longer than we used to and have a good quality of life for a good part of this time. Some aren’t so lucky but unfortunately that’s the nature of this disease.
Good luck Lisa and hope everything turns out okay for you. Keep in touch with us.
Pinkdove
Hi Pinkdove,
Oh yeah, I would still be in the system if the cancer spread. After reading different posts here, I realise that even after being diagnosed with secondary, you can still live well and for a long time. I never realised that before. That’s one of the things I’ve felt reassured by. The impression I got from the onc was that there isn’t the sense of urgency that there is when treating primary bc. But I don’t think she meant I’d be written off if I got any secondaries - she just meant the treatment would be different…in that it wouldn’t be life saving.
I’m not sure how I came across in my last post but …I wasn’t meaning to discount or undermine secondaries. I’m sorry if it seemed that way though.
I’ll keep in touch and I wish you all the very best too x
Hi
No, you didn’t come across as discounting or undermining secondaries and maybe my post made you feel that?! Sorry if it did.
I was thinking back to my initial diagnosis (13 yrs ago) and I realised that my treatment following my primary diagnosis (was diagnosed on the Wednesday and surgery on the following Monday) to secondaries (diagnosed on the Thursday and treatment the following Wednesday) was no different. In fact, because my spine is affected I was sent for emergency radiotherapy within 2 days.
Your oncologist is right in that we are in ‘palliative’ care as we can’t be ‘cured’ (but then there isn’t a ‘cure’ for breast cancer anyway!) but hopefully we can have a good quality of life for x amount of years but we know we are life limited whereas with a primary diagnosis hopefully you’ll be in remission for the rest of your life!
Take care.
Pinkdove
x
Hello Pinkdove,
Not at all. I just wanted to be sure I hadn’t offended and to apologise if I had.
I see what you’re saying now, in that, the timeframe between diagnosis and treatment for primary and secondaries is just about the same.
The context of my discussion about secondaries was - I was asking the enc about what tests are performed to check for secondaries and how often should I have them (in Saudi I mean). That’s when she said the thing about diagnoses/tests not being as routine or urgent for secondaries and if I notice unusual pain, a cough that wont go away, headaches etc to bring that to the enc’s attention. I honestly thought there must be some blood test or something?? Or that there must be some test that I’m not aware of. However, it seems there isn’t.
Gyawd, I hope I am in remission also. Seeing as I’m such a high risk and the fact that I’m returning to Saudi after they misdiagnosed on more than one occasion, I just want to be as clear in my head as I can be.
thanks and you take care too - Lisa x
Hi Lisa
You’re right in that we’re not screened as primary ladies for secondaries and very often the first you know about it is a pain that won’t go away etc and then going to the GP.
Enjoy your life, especially in Saudi and if it happens deal with it then but try to enjoy yourself. It does get better as time goes by but takes a while to get back on an even keel and then, one day you wake up and it’s not the first thing on your mind. I think it took me about 2.5 years before I was in that position but I had a lot going on - my mum had died of breast cancer at the age of 46 (so there were triggers there for me) plus my aunt was diagnosed a month after me and she sadly didn’t live and I know that if it were to happen to her now (9 years down the road) her outlook would have been a lot better.
I think you’re doing the right thing - at least you have the awareness of signs and symptoms but don’t be too hard on yourself as we all get a bit paranoid about our body after something like this and it’s a very normal and natural thing feeling like that because our ‘normal’ markers of what might have happened to our body as we get older aren’t the same as for someone who hasn’t had breast cancer and we never know whether it’s the cancer or just normal wear and tear. Bit of a bummer really!!!
Pinkdove
x
Hello again Pindove,
Well, I’m goner give Saudi a go…it’s been my life now for a while before this started and I actually loved it very much. Going back now is going to be completely different so …it really is one step at a time - I haven’t got the energy, interest or will for anything more
Its going to be really hard to leave my mam - as much as I’m desperate to have my life back. Thing is, my dad passed away in January 2006. I’d never actually known someone close to me who had cancer or passed away because of it. It’s been an awfull couple of years, and I just hope the future is a little different …or …maybe alot different.
I went for an scan today. Something not usually performed unless the patient has irregular bleeding. At the time that I went to my GP to be referred I think I was so afraid I was quite pushy. Anyway, apparently, I have cysts on my right ovary - apparently nothing to worry about and we’ll see what the enc says etc. I didn’t expect the scan to find anything at all …it just zaps me and makes me think - wtf is going on with my body!!!
I’m having a bit of a down moment so please excuse the mood - Lisa x
Hi Lisa
Sorry to hear that you’re feeling down at the moment - there’s a lot you’ve got to face in the future, having to leave your mum, still getting over treatment, finding out at your cysts and still coming to terms with your dad dying.
My mum died (25 years ago now) when she was 46 and I was 27 and I found it so hard coming to terms with that as we were very close and I found it difficult to cope with and I would say it took me a good two years to start to feel as though I could even begin to feel happy again. I remember having a physical pain about losing her and now, all these years on, although I’m sad she never saw her grandchildren, I’m also pleased that I did have a close relationship with her because I know so many people who don’t with their parents.
Look after yourself.
Pinkdove
x
Hi girls, don’t want to ‘butt’ in, but just wanted to let you know how things are here in the South. Like elsewhere, you are not routinely scanned, but do have regular follow up appointments and yearly mammograms (if appropriate). They don’t tend to say ‘you are cured’, but that you are NED (no evidence of disease). In my case, because I’ve had a recurrence with wide spread to lymph nodes and vascular involvement, I have 3 monthly chek-ups and my GP arranges yearly bloodtests incl. LFT, full blood count, calcium levels , ESR and CA15-3 (which is the one test that might possibly indicate early secondaries). I had to ask for that test, but it is a good indicator of where I am at - it is slightly raised, but has not changed for the last two years, so no need to worry. I’ve also had several x-rays and a bone scan since dx because of back pain and liver ultrasound. I had all the normal scans when I had the recurrence, but these new ones have been arranged by my GP because of problems. I feel that I am in very safe hands. I know that the ‘outcome’ will be the same irrespective if they find thigs earlier rther than later, but I am the sort of person that would rather know - so quite happy to have xtra investigations etc.
Hope that helps and best of luck Lisa.