I was diagnosed with breast cancer (I refuse to give it capitals, like it’s important enough!) in March 2005.
Following surgery (twice), reconstruction, chemo and radio I was on Tamoxifen for the first 2 years and now Arimidex. At the moment I feel fine.
I hope you don’t mind me asking but I can’t seem to find info anywhere on how I will know if anything is wrong. I find lots of info on treatment of, for instance bone mets, but how do I know it’s there to begin with? Do I have to wait until I am in pain?
I feel I’m becoming paranoid about any ache or pain, where I wouldn’t before. Is the headache a tumour? The tablets I take can cause joint stiffness but what if it isn’t the tablets? I can’t be running to my GP everytime I have a headache or pain.
I’m not explaining myself very well, but I wonder if anyone can tell me how they knew. Where you scanned regularly? Was it picked up by your Onc at a check up? Was it your gut instinct that something wasn’t right? My check ups seem to consist of them asking if I’m ok, me saying yes and them making an appointment for another year. (I have only had a bone density scan as a baseline because of taking Arimidex)
There is no one scenario for how secondaries are picked up.
Some people feel fine and its picked up by blood markers, although I think thats unusual, other report ongoing aches and pains and then they are checked out. I think if you are feeling fine you should concentrate on that because thats great. If you have an unexplained symptom that lasts more than two to three weeks I would get it checked out by your onc or GP. Some people say two weeks but i think three makes more sense…This rule works pretty well as most things that are benign should disappear within that time. I don’t know if anyone has anything to add to that !
I agree with what Cathy says here. 2-3 weeks seems a good measuring stick. I can only speak of bone mets because that is what I have. I was completely unaware at the time of anything wrong. When i did have a problem with sciatica my bone mets were found to be very extensive. But what disturbs me is the number of women I have heard mention their back problems, going to their GP and being treated for just that! I think with a history of breast cancer, at risk of being a ‘pain’ we do need to ask either our GPs or preferably the hospital team that cared for us, if the risk of bone mets can be ruled out. Hindsight is wonderful and looking back now there were clues but I didnt recognise them at the time. I had consirable tenderness of my skull, especially at night. I even went so far as to treat myself to the softest and most expensive down pillow I could find! I think something else we need to watch out for is the odd lymph node swelling - for me this was around my neck and collarbone.
I noticed that the skin on my breast had become ‘orange-peely’ but thought nothing of it as I was having a yearly breast xray and ultrasound which showed nothing wrong. More fool me. The scar from my lumpectomy was quite hard so I didn’t find a lump and it was only when it became hot and itchy that I eventually asked to see a breast specialist. He immediately ordered a biopsy - and voila! Then they scanned for secondaries and found them in lungs and liver. At no point did I have any symptoms - and still don’t in fact.
I suppose the lesson from this is don’t hesitate to push to have anything that wories you investigated. I agree with Cathy though that it’s worth waiting a few weeks to see how things develop, especially as Arimidex does give you some aches and pains. I often think when creakily getting up in the morning - well I may not live to be 90 but at least I know what it feels like!
PS I was living in France when first diagnosed and it was standard practice to give an annual chest x-ray as well as breast x rays and ultrasound as follow up. If they had done this in UK I would have found the lung mets much earlier.
I actually asked my onc this question:what am I looking for? he said “nothing”. I said so how do I know if I have secondaries, he said “you don’t, you must report any persistent symptom that worries you to your GP” and I said well now I am paranoid and will think everything is secondaries, how do I live a normal life again, and he said there is no one way to do this, you have to find your own way. So I guess there is no easy answer.
By the way I notice that Macmillan run a 6 session course on Living with Cancer (they do one in York, I am not sure about nationally) I think that may address issues like the one you (and I!) worry about
CazMc, your not alone, you explained how I feel exactly. I seem to worry about it every single day and to be honest I am totally fed up of it. For the last few months I have had a pain in my neck just above my collarbone on the opposite side to my mastectomy, ( I had a Hickman line in so I am sure its due to just scaring ), I also get breathless real easy too, (probably due to the fact that I am very unfit) but I also find that I worry about every ache and pain for fear of its return despite trying very hard not to think like this. I also suffer with real bouts of tiredness sometimes and I seem to go into a panic when I feel like that as tiredness was the only real symptom I had before I found the egg size lump in my lymph node.
I also feel that my check ups consist of ’ how do you feel, fine, good we will send you out your next appointment’. I do though have a yearly MRI scan of my good breast as I have an implant in it due to an unrelated ‘boob job’ so can not have a ‘normal scan’. Its now going on 9 weeks since my very overdue, yearly, MRI scan and still got no results despite starting to chase them so I am a little more frustrated than usual.
So your not alone I know exactly what you mean and I feel the same way too. I am so thankful for this forum.
Hugs
Neenie xx
P.S. I am still not using capitols since our last chat hehe.