Hi everyone
I would really appreciate advice from anyone with bone mets. I have been reading all the valuable comments and hope that others can give me some reassurance regarding tests.
Basically I am 56 years young (!) very healthy (apart from the obvious) and thought I was being diagnosed with a primary dx on 6/2. Has mastectomy on 10/3. 3 out of 4 nodes involved. Booked for ANC on 18/4. IN the meantime ultrasound, chest x ray, and bone scans carried out. Didnt get results of any of these until one hour before I was due to leave for second op on 18/4. Op cancelled.
Told their was something suspicious on liver on ultrasound so CT needed. But bone scan and chest x rays clear.
Informed this week that liver clear but now need MRI of spine ? bone mets.
Does anyone know if CT shows up something bone scans dont. Why was I told bone scan clear apart from normal wear and tear. I have no pain in back.
I have refused MRI but been told onc keen for me to have it. They have said it will not affect my ANC now booked for 12/5 and can be done after.
But I am very very claustrophobic. I feel I have as much info as I want. Onc said only difference bone mets would make they would put me on bisphosphonates.
I am sorry to ramble on. But am at end of tether. Just when I think everything is sorted for next stage something else is not right.
Starfish x
I really wish I could help you Starfish - but I’m not sure what to say. If you have all the tests being offered and there is something going on then they’ll be able to start treatment asap - if there’s nothing wrong at leat you’ll have confidence going forward. There is nothing easy about all this!
Take care - Geraldine
Hi Starfish
Well the really good news is that your liver is clear and thats great,
I think you need to ask them for a clear answer about the MRI -are you actually having it ? as geraldine says if you have it you will have full confidence…have they explained to you very clearly why they want you to have it ?
My understanding is this bone scan better than CT for bones, but MRI is better, believe me if you need bisphonates (whatever!!) you should have them…they do wonders for bones. It sounds like they are just being extra careful but you need to talk to your onc.
talle care
cat
Hi Starfish,
I know that when I have had CTs they do see evidence of my bone disease on them. But obviously they have seen something and they want to be extra sure it is not a cause for concern. If you do have a bone problem that the MRI shows up - and it may not be cancer related then it is better known about and treated sooner than later. But I do you think you are justified in asking exactly what their concerns are. I have been living with extensive bone mets since 2002 and am fine on bisphosphonate treatment. I know many are anxious about the MRI ‘tunnel’ and I would say to you take a long hard look at it before you go in it. It is quite bright in there and you can see the other end if you look - it is open. As they scan your spine you are being moved slowly out of the tunnel though while you are lying down you may not realise this. You will be given something to hold and if you are anxious you press it to call them. You will also be able to talk to them while in there, and they can talk to you. Most units have music they will play through the headphones (there is a thread somewhere about some of the really inappropriate music some have had!) and you may well be able to take your own favourite CD in and have them play that for you.
dawnhc
Hi there,
You have received some good advice from the other ladies here. My only query is in what your onc says about the 'only difference"? Without wishing to scare you, if nothing shows on the MRI that is great but if something BC related shows, then they would probably classify you as stage 4 which is quite different to having BC confined to lymph nodes. Hopefully it will be nothing serious but if they want to check you further, it is in your own best interest to get anything checked sooner rather than later.
Good Luck,
Jenny
x
Hi Starfish
I know how you feel with the never ending developments at each appointment when all you want is to get cracking with your treatment. You’ve just got your head around one thing and then they present you with something else to worry about. Sometimes I think the consultants should have a few biospies and MRIs and CTs, wait a week for the results of each of them and see how they like it. Anyway, I digress…
My understanding is that the CT is good for soft tissue but the MRI is better for more detailed imaging (it’s newer technology) and is great for bones. I’m 40 and was dx in March with IDC and liver and lung mets from the off. I had a dreadful backache and was convinced I had bone mets too (which the onc said was the least of my problems as very treatable with biophosphates), so I had a bone scan which came back clear, but still had backache so had the spine MRI which was also clear. I started chemo and the backache has gone!
I think that given your node involvement they just want to be 100% sure there are no mets so that they can draw up the right treatment plan for you. So, they’ve eliminated the liver and lungs which are the most common places for mets (fab news), and are now trying to eliminate bone mets from the picture. Perhaps if they’ve seen some wear and tear they might just want a closer look to make sure. The MRI is a hell of a lot noisier than the CT, but I found a sleeping mask helped me forget about the space thing and I just kept thinking of a nice place where I’d rather be.
Good luck
x
Hi,
I hate MRI’s too, so when I must have them I ask the onc or GP to prescribe a mild tranquilliser something like ativan, works a treat for me.
kiwi
Dear Starfish,
You should definitely have the MRI. It is unpleasant and noisy, but there is no radiation, and it will give you a lot of information if looked at properly! Just close your eyes and imagine that you are in a place that you love and you will be fine. I wish you well.
Penny
Hi Starfish
I too am claustrophobic but have had 2 MRIs now - they do show up much more than the other scans and at least then your consultant will have all the info needed to decide on treatment.
I agree with comments above take a good look down the tunnel before you go in you can see the other end - so its not like you are totally enclosed - the staff are always really good if you tell them how you feel - you will get a button to press if you need them to come in (I did on my last scan as had a bit of a panic!) and thats reassuring knowing they are only the other side of the door - after that I was fine - as the others say close your eyes and imagine you are somewhere else - it really is over quite quickly.
Good luck!
Smartie
Hi to you All
Thank you for all your comments which I will take on board. They are still going ahead with the ANC they say on 12/5. I am still confused about why I need an MRI when 2 other consultants previously had said bone scan was ok. If whether or not I have bone mets affects chemo I need then I may have to have it. I have been told there is an open MRI scanner at Swindon hospital which I will probably go for if I have to. I am afraid I have heard some real horror stories about MRI scans. And the worry is what else will it show. I understand you have to sign a consent form before they do it. Is that right?
My case seems to be a fiasco. And everything is taking so long. Is that normal? Diagnosed on 6/2. Mastectomy on 10/3. ANC fixed for 18/4 then cancelled within one hour. Then ANC rebooked for 12/5. Surely if you have it in nodes and possible mets they should be acting quickly.
I do not have any bone pain only some after mastectomy op which has now gone.
Thank you once again to you all. Its really great to be able to ask others.
Dawnhc
A particular thank you to you! I understand you are lobular as well as I am and read your comments with much interest. You are a real support and inspiration.
Best wishes to you all
Starfish xxx
Hi Starfish
I had a bone scan following mastecomy and ANC in Feb 2005 as 16 out of 18 n odes were positive. the bone scan showed secondary deposit on 1 rib. I was commenced on biphosphonates as well as chemo. About a year later I had a repeat bone scan as I was having back pain and shoulder/armpain and it showed 2 areas on ribs and 1 area on spine and suspicious area on arm. as I was having pain Onc wanted to give me radiotherapy so I had an MRI of spine and shoulder/arm. thsi showed 2 areas on spine but area on arm unrelated. If they had gone only bymy bone scan then I would have had radio to only 1 area of spine instead of 2 and to arm when I didnt need it.
My spinal involvment has also showed up on CT scans I have had since but the MRI is much more sensitive than a bone scan and CT and shows bone involvement in more detail… I would strongly recomend having the MRI. as you say the outcome wont effect your further surgery. I think that the reason they stopped the original surgery was that if there was involment in lung or liver then there treatment may have been different.
As others have said the MRI isn’t too bad. Very noisy. If you have real problems they can sedate you.
Hope your surgery goes well.
Maddisn
Hi Maddison
Many thanks for your helpful comments. I am sure the MRI is more accurate. They havent rung today. I dread the phone ringing.
Anyway they have agreed to wait until after ANC on 12/5. Hopefully!? I never trust anything they say. It changes all the time.
Maybe hynotherapy might help! as someone else is considering for surgery I see.
I dont think they treat bone mets with chemo do they? I got the impression it would be biphosphonates if there is anything. Maybe radiotherapy as well.
Starfish x
Hi Starfish
No I think dont think they use chemo for bone mets. If there were mets they would treat with biphosphonates and if you became symptomatic then they can use radiotherapy. By having the MRI they can pinpoint exactly where they are.
Hope everything goeas well on 12th.
maddison
Hi all … i have been trawling this site for some consolation and information as I am totally confused.
Had an MRI last september BC diagnosed opted for mastectomy and WLE in remaining breast had recon implant in jan after having expander fitted.
also had bone scan which as clear last oct ,now in dreadful pain in mastectomy area…in armpit breast area and this feeling under my breast like something is crawling inside…went back to onc he has booked me in for another MRI 07 MAY …however when my appointment came thorough the MRI is on my neck !! I have no pain in my neck have called the breast nurse to clarify what the onc wanted but she hasnt got back to me as I have called 3 times the last month I dont want to call again as I fear that they may think I am an hypochondriac at present I am so stressed with it all I cant think straight my son and husband treat me as though I have had a toothache and wont discuss it so I have no one just this site sorry to go on but any advise would be gratefully received
Love Maz xxxx
Hi Maz
I’m sorry to read you’re so upset and confused at the moment. Please do phone the helpline and have a chat with the nurses here. The lines are open again in the morning at 9.00 a.m. until 5.00 p.m. on 0808 800 6000.
Kind regards,
Jo, Facilitator
Hi Maz
Phone the breast nurse again (thats what they are there for) and also phone your oncologists secretary to ensure they have got it right. You could also phone the MRI dept and explain to them. Sometimes scans cover a wider area than you think. e.g I had a CT of the thorax (chest) and rang MRI dept as it was my liver I was concerned with and they said it covered the liver. (hope that made sense).
You need to ensure they are scanning the right area as it is a waste of time and money.
Maddison
Hi Madison …called bcn again and left another message …didnt think to call the secretary or the MRI dept thnks for your suggestion will do that tomorrow .feel like my head is on the verge of exploding cos i cant sort it out will let you know how it goes .
Thank heavens for this site and the people on it Mazxx
Hi Maz
I hope you hear from BCN. I was sent for a CT of my liver only I thought. It then turned out they were doing everything including chest again for the 3rd time. Thankfully the liver was clear but I think it must have show something on spine? because now they have ordered an MRI on that even though they have already done a bone scan which I had previously been told only showed normal wear and tear.
As you will read from my other posts I think they are scan mad (well in Reading they seem to be). I guess I must be high risk!!!
Good luck
Starfish xx
hi all the BC nurse finally came back to me she confirmed the scan is if of my neck as my Onc seems to think that it is referred pain fron my breast !!Still no wiser anyway it is the day after tomorrow and usually results within a week so will just have to take a chill pill until I know the result cos cant do anything about it even if it is bad news cant help thinking that my daughter is getting married next year and I really want to be there to celebrate so all i can say is bring it on !!!
Im have already had an MRI and a bone scan so the midlands area really do offer the "silver service " it really does help to come on here and chat to others in the same “club”
Good luck and thanx for listening all of you xxx
Mazxxx