Hi All
As you have probably seen on my other thread the bone scan showed no secondaries “just” arthritis in my spine - nowhere near the pain I was having in my hip - that bit was fine!
Anyway my onc had said from the beginning that he thought my pain was nothing sinister but I could have a bone scan “if I wanted to”. As usual me being me insisted on having it even though GP and onc were not worried.
When I went for results yesterday after 2 sleepless nights onc was in with another patient but had left a note with his secretary to say I had to go for further back xrays and bring them back down as scan had showed something up!!
As you all know only too well I felt physically sick. I was crying and nearly had to be dragged upstairs for x rays! I sat shaking and crying for half an hour planning how to tell my children I had cancer again and foolishly crying that my hair would all come out again just as its back.! I went to hell and back.
When I got in to see onc with xrays he said a “hotspot” had been seen on bone scan in my upper back - nowhere near where I had the pain! I was verging on hysterical by this time but when he looked at the xrays he said the hot spot was arthritis - nothing else - but xrays were needed to confirm this.
He said to me that this is what happens when you have scans that you have been told you dont really need - they bring up all sorts of things that you never knew you had and weren’t causing a problem and cause all this trauma!
Last night I lived a replay of the day I was diagnosed in 2005 ( albeit with a happier ending) but I realised it was me who had put myself through that .
I have decided now to take advice of onc and when he says I am OK I am going to believe him and not subject myself to more of these horrible tests.
Just a thought - what do others think?
Love to all
Alise x
Hi Alise,
What a horrid day you had, you poor dear - so glad that it ended well. Though it says something that we can categorise an arthritis diagnosis as ‘ending well’; I remember waiting with great nervousness to hear whether the pain in my hands and fingers was early arthritis and the depression when I was told that it was. But there we are.
As for the ‘calling for tests’ thing - if the suspense of the wait guts you like this, don’t do it again. You had to go through too much, by the sound of it. Though if a doc had taken that “see, what did I tell you?” tone with me he wouldn’t have done it again in a hurry, I can assure you. I would have made his own experience of dispensing thoughtless condescension towards people in our condition so thoroughly horrific, he’d sooner stick his finger in an electric socket than risk it again. I don’t hesitate to behave in thoroughly unacceptable ways when I feel less than satisfied with what’s going on. Loud bellows of rage have been heard from my consulting rooms. Better out than in, I say. The nerve of your git of an onc! As if there had never been medical error or misdiagnosis!!! As if we are being ‘silly women’ to want to put our minds at rest by having our aches and pains thoroughly explained.
But, you know, you would have continued to worry about your ‘sinister’ pain, if you hadn’t had it ‘officially’ cleared - so are you sure about your decision not to subject yourself to more of them if your kindly onc doesn’t recommend it?
Not me. I push for every test I hear of & push for seconds when my opinion of the tester or diagnostician is low. I have a question mark over my ovaries which MY onc says ‘not to worry about’ - but I took advantage of infection hospitalisation to have an ultra-sound & endometrium sample taken. The woman gyno was an incompetent butcher (first I’ve ever incountered in Finland). I told her so in no uncertain terms (loud bellows of rage) & I’ve told every medic I’ve encountered since, with humourous embroidery (may her name stink in the medical profession in Finland forever) - and I’m going to insist on the tests being done again at the cancer clinic.
I don’t find the waiting period so shattering, however, Alise. Tense, of course, but hell! if it’s there I want to know & I’m not scared to find out. I’d kick myself if I let something go because I couldn’t face diagnosis - & it’s my considered opinion that if it’s a ‘nasty’, it’s not going to get better by itself. I trust the Finnish medical system pretty well - but I don’t believe in human infallibility when it comes to diagnosis. I also feel I have insights about my own body and its ways that I am prepared to listen to over some pompous condescending a-hole with his “I told you so!”. And a profound respect for the therapeutic powers of rage expressed! MY rage, that is - lol.
Hope the sun shines for you today and you can put the experience quickly behind you.
M-L xx
Alise
I had CT scan, bone scan and chest x-ray after my surgery and I am quite sure they only agreed to humour me and yes I did panic about the results. When my onc said they were all clear a visibly melted in my chair with relief. I didn’t need the scans, they told me that, but I couldn’t get to grips with how they could be so sure.
Maybe they could have been a bit more sympathetic to you, after all they see this every day we dont. Its a bit like a tutting mid wife [I had one of those].
If there is a next time, which I sincerely hope there isn’t, you should have whatever YOU feel YOU need. How do you know if you hadn’t had them this time you wouldn’t still be eating yourself up with worry.
Really happy for you that it is “only” arthritis and here’s to your continued good health.
AJxxx
I agree with Emelle and AJ
It isn’t the tests that should be the worry to you, it is this doctor’s attitude. It sounds as though he was trying to teach you a lesson that you should trust him more. This is simply unacceptable arrogance on his part. Fortunately, I haven’t had to have many tests for my BC, but when my son had cancer as a baby, he had to have loads. I behaved in the way Emelle describes with his oncologist. I was so assertive when it came to being his advocate, nothing like I am with myself - I let doctors get away with things I would have killed them for if the did it to my son!! His oncologist was a real old dragon - very good at her job clinically, but a terrible attitude with parents if they dared to question her judgement. For most of the time, I trusted her judgement but there were times when I didnt agree with her and then there were fireworks to be seen. In the end, we developed a reasonable relationship. I began to trust her more and she knew not to mess me around - like yours did, leaving a note etc - that wouldn;t have happened.
So I don’t think you should not ask for tests again - that would be unrealistic given that you have cancer. We are all going to need extra tests from time to time. As time goes on, you should be able to trust you oncologist more so when he says he doesnt think you need a test for something, you believe him. However, he should have explained in more detail why he thought your pain was not sinister and then it may have made more sense. Its no good doctors just saying “because I say so”, that does nothing to establish trust. He also needs to give you the respect you deserve and be far more tolerant and caring than he is. I suggest that Emelle, AJ and myself wait for him down a dark alley one night and sort him out for you!!!
Don’t be scared off having further tests but do make your oncologist explain things more to you.
Cathy
x
I have been offered scans etc and always refuse for the reasons you give alise.I call myself horace the ostrich.What do you gain from scans if you have no symptoms?Only worry.If scans show up mets can they cure them?No.If the said mets are very tiny do they treat them?No.The treatments for mets alleviate symptoms,can extend life and slow spread but waiting until you have symptoms does not reduce the efficacy of the treatments or reduce life expectancy.I have been told I can have a scan if ever I want one and my oncologist says he will advise me if symptoms indicate scanning.Why subject myself to all that extra radiation and panic for nothing?I will stay in my sand dune until circumstances force a change.I know I’m mad!!Love to all from horacexx
I am afraid Alise you are ‘damned if you do, damned if you don’t’! I think once we have a dx of cancer the query is always going to be there when we have an unfamiliar pain that we can’t related to something else. Sometimes even a pain we recognise will have sinister overtones. For myself I know that if it continues for any length of time I will need some sort of reassurance that it is not cancer related. That reassurance will not come in the soft tones of any oncologist telling me I have nothing to worry about. I have been down that route and guess what? either soft-toned oncologist was wrong wrong wrong! or I went on worrying. I think it goes with the territory as they say. But I have found that as time goes on (now 18 years since dx) it is for me more like taking control. I have this disease, I need to know at times that there aren’t further problems, and if there are I want to get on and deal with them. I once even went to so far as to go on Womans Hour to tell women if you are not reassured by your doctor/onc opinion then keep pushing until you are. If I had not done this I would not be here today.
dawnhc
Hi Alise
Sorry you had such an awful day, but thanks for your post, read it first thing. I had ultrasound this morning, turned out to be lots of little cysts. Cancer had been on the opposite side and was lobular and had worried about it not showing up on ultrasound and had thought of asking for MRI but reading your post I decided to go with trusting to docs at this time and not push for anything else.However, his does not mean I won’t in the future push for things.
Have a good day love Alicex
Hi Alise
Sorry you have had such a shocking time. I really really appreciate you posting this thread. I started one a week or 2 ago asking ‘has anyone has not had scans’ . I haven’t had any additional scans despite being 2cm, Grade 3, 1 node positive, Mast/recon, Chemo + Herceptin + Tamox and was wondering if I should push for further investigations. The responses I got were really helpful and made me realise that there are lots of people out there who haven’t and it made me realise how different each treatment centre approaches things. So far I feel that I can trust my Dr’s implicitly but there is always that little seed of doubt. Thanks for highlighting the downside of pushing for more tests.
Have a great Day
xx
Hi Alise , what a dilemma. I am currently swinging between the ostrich approach and trying to block it out of my mind , or full on lets get the scans and see. My oncologist says that the waiting and going through them creates a huge adrenaline rush whichih you probably could do without as well (in addition to the scan itself)
I will go for my first check ups in a couple of months and I’m dreading those. I suppose by nature we cant believe uinless we see the evidence.
Cally
Hi everyone
Thanks for your thoughts. I just wanted to add that I REALLY like and resprect my onc - he always goes the extra mile to reassure me and even rang me last night to say he had had x ray looked at by a consultant radiologist after I had gone to confirm his arthritis diagnosis. I think he discourages me from tests because he knows what they do to me mentally.
I think I have decided that I am going to follow his advice to - also I am scared of subjecting myself to any more radiation unless I have to.
Another thought - when I got home after being at hospital for 3 hours when I was supposed to be there for 20 mins and fell through the door explaining to my husband what had happened he said " Oh well as long as you are ok!!!"
They have no idea do they? Only someone who had gone through this living nightmare knows how scarey situations like yesterday were. I hate it when other people trivialise it.
On a positive note I lost 3 pounds in 2 days as I could not eat !!! ( I have made up for it today though)
Love to all
Alise x
HI Alise
I am pleased to hear you like your Oncologist - I thought from the sounds of your first posting that he was a bit arrogant, so that’s just me jumping to conclusions thinking he was like my son’s onc.!! In that case, I think you are so right to be guided by him and not to put yourself through the stress of tests. Like Horace says, there is no point in diagnosing something if you don’t what you are going to do with that information when you get it. You’ll just have something else to worry and fret about. I do think in some circumstances, ignorance is bliss.
Alise, i am so glad for you as I went through a similar experience with a bone scan a few weeks ago. I just wanted to defend your Onc as they are only human too and do their best (most of them) to help the hundreds of women that go through their clinics. A lot of the time its not a very rewarding specialty and it must be very hard for them to deal with everyone’s stress! And to prove I am not biased, i have recently changed hospitals where the oncs are fantastic, And, i€ am really angry with the Oncs at my last hospital as i have recently discovered they didn’t tell me everything on diagnosis.