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What do yous think of this? opinions please.

11 REPLIES 11
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Re: What do yous think of this? opinions please.

bumping

lucinda
Member

Re: What do yous think of this? opinions please.

hi
I was told when dx that I had exstensive bone mets,which I have,and areas of concern which were most probably lung mets.When I was scanned half way through chemo they decided the lung mets were in fact scar tissue,which I was very pleased about.Seems it is difficult sometimes to dx lung mets on scans.
If you are really concerned ask for a second opinion.

Lucinda xx

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Re: What do yous think of this? opinions please.

Hi was just reading everyones posts as was told i had lung mets after dx of breast cancer and bilatral mastectomy , was called back last thursday to be told my oncologist has had second opinion and that now it might not be lung mets, have also changed from tamoxifen to 6xfec with a veiw to be scaned after 3 .
So as you can imagine my emotions are all over the place (do i dont i ) this is my life and im not sure on anything anymore xxxbev

Lemongrove
Member

Re: What do yous think of this? opinions please.

Funnily enough when I was undergoing chemo at a teaching hospital, I happened to notice a sign on the doctors notice board which said something like: "Are you involved in reading scans? Then why not attend a course to learn how to interpret them". My immediately thought was, if a doctor is involved in interpreting scans, then surely they should be trained before they are let loose on patients - not afterwards.

pumpkin69
Member

Re: What do yous think of this? opinions please.

Hi Alex, That seems to be the same thing that was happening with me, different scans being done at different hospitals and interpreted by different radiologists, you would think by now they would know that as it is difficult enough to read scans that consistency is the key! Like your liver mets (suspected) i have had tiny spots on my lung which they cannot agree on, one scan said yes, second one done somewhere else said no. Problem is treatment decisions are made on the basis of these! The first ct which said i had progression also said i had progression in my bones, which turned out after bone scan and mri to be wrong, the activity they were reporting was actually response to treatment, not progression!

I know what you mean about the scanxiety! I hope you don't have to wait to long for results, it really messes with you head! any idea when you'll get them? please let me know how you get on.

I've just started weekly paclitaxol for twelve weeks along with herceptin, so instead of being finished with a treatment that was actually working,(docetaxol) i'm having to start all over again, so not happy about that but hopefully it'll do the trick and blast those damned mets to bits!

Pumpkin x

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Re: What do yous think of this? opinions please.

Hi pumpkin,

I can only imagine the anxiety that you must have felt. I am also on herceptin. I have been on it for nearly 3 years. I have liver and bone mets. I had an MRI scan in March this year and I was told that the small met at the edge of my liver was stable. On the back of this and with some help from Lemongrove, my scans were sent to Mount Vernon for assessment for cyberknife. The upshot was that due to irregularity of scans and because they had been done on different machines it was not possible to conclude that everything was stable. I had another MRI on Friday 26 August on the same MRI machine that was used in March. This is so they can make a proper comparison. I will now suffer from scan anxiety until I have the results.

I have not had my liver biopsied, and one of the radiologists let it slip that they are not sure if it is cancer. At diagnosis I did have two small areas, one has now completely disappeared, so I think that was cancer.

I think it is very wise to question, challenge and ask for second opinions to ensure that assessments are accurate so that effective treatment plans can be implemented.

What treatment are you on now?

pumpkin69
Member

Re: What do yous think of this? opinions please.

Exactly Lemongrove, these people are making decisions about our lives!
I have a copy of the scan which said i had progression and the name of the radiologist who signed it off (incidentaly it was performed by a trainee, then signed off by a consultant who spent exactly five minutes looking at it, i know this because the time stamp is on it) not much effort put in there eh? So in future i will asking for copies of my scans and asking for second opinions at every turn. So angry that i was almost taken of herceptin because of this which could be potentialy be the thing that makes a huge difference for me. If this hadn't been picked up things could have been very different for me now. Lesson well and truly learned!! question everything whether they like it or not! and it seems that quite a few others on this forum have had similar experiences with being told one thing then turns out to be not after a second opinion, it really is quite shocking! and then they think an apology is enough!

Pumpkin x

Lemongrove
Member

Re: What do yous think of this? opinions please.

There are good and bad in every profession, but unfortunately the incompetent doctors are not weeded out, because the medical profession tend to cover for them. Additionally, the general public prefer to look up to doctors, or lack the confidence to challenge them, so in most cases patients simply accept the excuses.
If planes were constantly crashing due to pilot error, and airlines tried to justify this by saying it is sometimes difficult for pilots to understand the instruments/controls, there would be a public outcry, and everyone would be demanding an improvement in training.
But doctors can make life or death decisions...

sheil
Member

Re: What do yous think of this? opinions please.

Hi
I had an MRI which confirmed the 2 spots already biopsied, MRI said these were 'suspicious'. Same MRI spotted another 'highly suspicious' area, and I was recommended bilateral mastectomy on this. But as nodes were clear I wanted this biopsied, and most board areas don't have the equipment, so had to travel hundreds of miles for this to be done. Turned out it wasn't cancer.

I don't know much about other tests but Susan Love's book was great on the weaknesses of MRI's. She explains how certain tests work better in certain circumstances. I was made very aware of the lack of 100% accuracy and it would be good if docs made us more aware of what we can expect as lots of people put so much more faith in these tests than is deserved.

Really happy to hear that you're news is good, but I can understand how you feel.

S

Guest user
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Re: What do yous think of this? opinions please.

oh my god that is dreadful all that anxiety and restarting treatment ... obviously pumpkin you are happy with this news but what a cock up .. good luck and hugs to you xxx

finty
Member

Re: What do yous think of this? opinions please.

This is really awful. Yes, I have also had problems with misreading scans - two bone tumours present at dx that were only picked up 15 months later when I noticed an anomaly in a written report. I collected all my scans together (from 3 different hospitals) and had them all reviewed by a new radiologists at a fourth hospital in Harley Street, who located the tumours. The problem in my case was the CT scan was looked at by a different radiologist from the bone scan, and they weren't marrying up the two images correctly. In my case I am very glad that they found the one bone tumour they thought I had at the time, which was tiny - just a couple mms - otherwise they would have missed my secondary diagnosis altogether, and I hate to think what the consequences of that might be. I always get a second opinion of scans now.

pumpkin69
Member

What do yous think of this? opinions please.

Hi all, I just wanted have a wee rant and get some support/opinions on my recent experience with treatment.
I had four treatments of deocetaxo/herceptin, then ct scan after four treatment said it hadn't worked and that there had been progression in my lung and bones, so i was pretty devastated about that.

I was then put forward for a trial of a new drug for which i had to have further ct scan and bone scan. The onco i saw who was running the trial said he doubted the accuracy of the original scan results and wasn't convinced it showed progression. As it turns out he was right! bone scan and new ct came back showing no indication of progression and that everytrhing was infact stable. While i'm relieved that this is good news as no progression, it means that i had a treatment that was actually working stopped for no reason, was almost taken off herceptin which is potentialy a life extending drug for me, and i'm now having to start all over with a new chemo regime because they think the four treatment i had would not be enough, so instead of being finished i'm back to square one.

Has anyone else experienced this problem with misenterpretation of scan results? I dread to think what would have happened if i hadn't met this other onc who was running trial. I would be sitting here now thinking things were worse when they're not!

My onc has been very appologetic for the distress this has caused and tried to explain it by saying that interpreting scans when people are actually on treatment can be very tricky and not always possible to get it 100% right and acknowledged the fact that she could understand me losing faith in my care team, So i think in future I shall be asking for second opinions on a more regular basis when it comes to scan results. Conflicting feelings of anger and relief!

Anyway sorry for the big rant but just wanted to share and get it off my chest.

Pumpkin x