Just wondered if anyone has had similar situation. Finished treatment end of 06, had ongoing and worsening pain in arm/shoulder/ribs. Had MRI recently, then PET scan which showed scar tissue/nerve damage from treatment - no cancer thankfully. Then they tell me it showed a hotspot(?) on right hip unexpectedly. New MRI booked for 22nd Aug, results on 29th. They said PET is sensitive, & not to worry as could be arthritis (am only 40!), or something innocent. I had ovaries removed last May, and have come off Tamoxifen (on it 2 yrs), just started Arimidex 6 wks ago. Could it be arthritis? I am worrying myself sick in case its cancer - even though i know this is not going to help, and its probably nothing. Anyone else had hotspot(s), or know what can cause them, or arthritis this age?
Would love to hear from you, as am quietly sending myself mad (again!!!). Thanks.
I am surprised they speak of ‘hot spot’ in relation to PET scan implying it is bone related (arthritis). I did not think PET showed up structural problems but I could be wrong. Has your onc talked of doing a bone scan? Hot spots of course can be an early indication of arthritis, previous injury etc. and of course bone mets. Taking the worst scenario - that of bone mets - this is so manageable. I have actually had very extensive bone mets for 6 years now which has been controlled with regular 3 weekly bisphosphonates. But if yours should be that they may not even consider at this stage treating it with drugs but just keep a watchful eye. If only doctors would understand the anguish they cause us when they casually toss out these terms without explaining them. Most of us are not sufficiently on the ball when presented with these facts to ask intelligent questions at that point! Hope the scan shows you have nothing to worry about - pointless saying try not to at this point isn’t it.
Thanks dawnhc - no - not mentioned bone scan - just MRI next week. I wonder if it was a PET/CT scan I had or just a PET scan - i read somewhere there is a difference, and PET/CT shows more - it did mention CT on the door, but I am not sure if it was another machine. I know I am being a bit overly anxious about this, don’t know why really - i think its a combination of already having had two scans, my sister died of cancer 6 weeks ago and i am just really emotionally drained at the moment (have BRCA2 gene and so much cancer going on in family - find it hard to be positive).
Really pleased to hear how well your bone mets are being controlled - that is such good news - long may it continue! You are right though, I kind of wish they had decided not to tell me or do further MRI at this stage - it’ll probably end up being a whole lot of expense for them, worry for me - all for nothing, but then I suppose they are just being thorough. Thanks for your advice.
I have no idea why I am having an MRI and not a bone scan - I am puzzled about this too. I also go to the Sutton Marsden, since 06 - my surgeon was Nikki Roche and I am under O’Brien’s team for hormone therapy etc. I don’t think they are overly concerned by my hotspot, which should really reassure me, but I just wasn’t expecting them to find anything, and you are right - I am a bit anxious generally at the moment. I have been very happy with my care and treatment from the Marsden, they have always been totally honest and very attentive, so no reason to think otherwise this time, but I will ask for a bit more info when i go next week. I don’t always think of questions until I get home from the hosp - my little grey cells are a bit slow!!. Glad you are doing well with the meds for your bone mets - the treatments are changing and improving all the time thankfully. (By the way, apparently the PET/CT scanner is quite new technology and gives the metabollic info from the PET but with more accurate location info of the CT - kind of fusing the info together from both PET/CT (read this on the internet today!). Take care. Sue X
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Just to say something similar happened to me. I was given a bone scan amongst others and told by bcn that it was ok and only showed normal wear and tear. I am 56 so would expect it at my age. Then saw surgeon who said it showed hot spots and I needed an MRI scan. I thought everything was clear and said bcn had said I was ok. I refused the MRI as I am extremely claustrophobic and heard horror stories from others about MRIs. I also visited GP who said bone scan would have shown it up if there had been bone mets. They certainly put us through it. I have been told they understand the anguish they cause us but I wonder. I am currently having chemo and hoping for the best. But am also realistic and know I have 70% chance of recurrence. I think we need to ask more questions which is difficult when you are so stressed. I have tried to do as much research as I can, asked lots of questions and taken what I feel is an informed risk. Like Dawn says if it were bone mets they may just decide to wait and see. The way I saw it I didnt want to know at this point in time if I did have bone mets. I need to feel I have hope of a brighter future.
Thanks for your replies. Starfish - hope you are tolerating your chemo well. It is just the waiting and uncertainty about the whole B.Cancer thing that I find so hard - sometimes you want accurate immediate answers - and it isn’t possible. I really need to focus on other things more. I will post back when I get results - meanwhile, thanks again and good luck with your treatment.
Sue (Revenue)
X
I am having taxotere (2 of 3 complete) and am having great pain in my back, hoping it is a side effect of the Tax. It’s day 12 and the pain is still there. if it was the tax surely the pain would be lessening. I was not offered a bone scan, is this normal? I am having real panic attacks that this has spread to by bones, kidneys, liver or everywhere( sorry I am really freaked this week). Any advice on how to live with the fear of this bloody awful disease???.
Just to say I’ve got several ‘hotspots’ on left hip and lower spine, but they said this was definitely arthritis and low grade oesteoporosis (as a result of Arimidex). I had bone scan as well as MRI. I have yearly bloodtests for bone problems (amongst others) and they always come back ok, i.e.no change since the original ones taking at dx. So I am not too worried. Good luck with your tests and hope it is nothing sinister.
Birgit
For Julie I had terrible back pain on one of my tax cycles.I had to call the GP out-it was agony and lasted over 2 weeks only gradually lessening with a combo of co codamol and Voltarol.The next tax was nothing like as painful.Good Luck to all of you.Vxx
Hi,
Finally had results of MRI to hip - unfortunately, it is small area of cancer - they were really surprised and so was i!! I am having a bone strengthening drug by IV drip 4 weekly, and review, re-scans etc from time to time. At least they have picked it up early, so am trying to be positive. I hope this doesn’t worry other people, as the doctors said they thought it would turn out to be arthritis, often the MRIs throw up false alarms - i was just unlucky. Take care.
Sue XX