hello ladies,

firstly I want to say how incredibly amazing you all are.

but please can I have some of your thoughts and opinions?…

My mum was diagnosed with breast cancer 5 months ago and since had a double MX. she recovered so well, she had 9 nymph nodes out with 3 infected.

We then went back for results of CT scan and bone scan to be told the most devastating news that she had secondary breast cancer that had moved to her lung.

When the oncologist told us of course we were devastated and since the last 10 days have been a rollercoaster of emotions.

Today mum (46 and the best mum in the world) took the 3rd phone call from the oncologist, the oncologist said that for the last 10 days she had been playing on her mind as she has now had an expert opinion that has said they don’t think she has secondary breast cancer. WHAT!!!

The oncologist has said they are now changing her treatment from temoxifen to chemo over Christmas to make sure they have diagnosed her correctly.

has anyone ever heard of anything like this before…thoughts/opinions, much appreciated!!

Love Liz xxXxx

How dreadfull for you and your mum!

It is quite rare but yes I have heard of wrong or uncertain diagnosis, there was a lady on here who was told she had secondaries and then that she didn’t.

It sounds to me as if they are now trying to be careful and chemo is being looked at as a better option, however I know that if it was me I’d be questioning how much faith I still had in the team. Obviously you will bed feeling a mixture of emotions CONFUSED, ANGRY, RELIEVED, WORIED …and you need answers, how did this misdiagnoses happen, are they sure now etc. I think you would be more than justified to ask for a second opinion and that’s probably what I would do, but thats just me.

I hope others will come along and give their thoufhts too. Whatever you decide I hope it all goes as well as possible. My thoughts are with you, please let us know how things go.
Best wishes, Julie x

Sorry to hear of your experience. Perhaps you could ask if there is a different scan they could perform that would give more information to you and mum.

My friend was told last year that they thought she had bone secondaries and was to get reviewed 6 months later where they said it wasn’t mets but just an area of inflammation. Unfortunately somethings can mimic cancers on scans and until there is a definitive test we have to rely on the scans doing their job and the professionals reading them correctly… However that still doesn’t account for anomalies which look Tumours or Tumours which look normal.

Anyway if you are concerned about your experience you can contact PALS the patient liaison service at your hosp to discuss it. In the meantime I hope your mum is reassured abd hope Chemo isn’t too difficult for her.

Lulu x

Hi Liz

Welcome to the BCC forums, in addition to the support you have here you may want to talk things through with one of our helpliners, you can contact the team on 0808 800 6000, weekdays 9-5 and Sat 9-2.

Take care

Thanks ladies its just such a shock and brings some hope with it too. The oncologist who diagnosed mum on the day told her she had secondary mets but said she would call her the following monday to decide a definate treatment plan, in the mean time she was on temoxifen. She said she wanted to go back to brighton to check the scans with her coleagues but mum had definately has secondary lung mets. That was 10 days ago-now she has said she wants to go straight onto chemo as her specialist colleague has a doubt. The oncologist has been so supportive aand kind but the emotions we are now going through is some what confusing. I just haven’t heard of anything like this before as we were just getting our heads around secondarys. She has booked us in for an emergency appointment thursday to discuss in more detail, thanks for your comments its refreshing to hear your stories of other cases xxx

The secondary diagnosis must have caused considerable anxiety.
I suspect the confusion occurred because hot-spots can show up on scans that are caused by things other than cancer. Really the only reliable way of establishing whether a hot-spot is cancerous or not, is to do a biopsy. However, NICE have advised doctors not to carry out biopsies on secondary tumours, unless the primary was never biopsied - and to be fair, some secondaries are in innaccessible positions.
At least in this case your Mum was not subjected to unneccessary treatment. For people who actually have secondary cancer, the failure to do a biopsy of secondaries can be quite serious, because cancer can, and does, change it’s receptor status. As a result people could receive inadequate treatment, or not get the treatment they require.
If I was your Mum I would be pressing for a biopsy to clarify what the hot-spot acually is.

Hi Liz

Sorry to hear about your mum. Unfortunately this whole cancer business isn’t an exact science (though you think it should be…)

The fact that they are switching her from Tamoxifen to chemo would suggest they are erring on the side of caution, but agree with Lulu that another scan (perhaps an ultrasound of lung - which is how my mets were diagnosed) or a PET-CT would be more definitive. Also, as Julie has suggested, it may give you more confidence to ask for a second opinion which lots of people do.

I know it’s a scary time for you all. Hang on in there.

Laurie x

Hi Liz,

I was initially diagnosed with secondaries in my lungs and spine. Shortly after this first appointment I was told that there were no secondaries in my lungs, but instead on my liver, and question marks around the area on my spine. The question marks arose because the area was where I had been suffering back pain for a number of years due to a fall down the stairs. They could not be sure whether what they were seeing on the scans was just an area of trauma from this accident, or cancer. A year on they have been able to confirm that it is indeed cancer on my spine, but only because of the way it responded positively to chemotherapy. They never really did explain why they had initially said it was on my lungs, and I think I was too shocked to really ask the right questions.
Just to reiterate what Laurie said really, it is not an exact science and they can’t always be sure. I don’t know if it helps or not to know that they make mistakes, but they do!
I really hope you get some answers tomorrow, as I find not knowing the hardest thing to cope with. sending you lots of positive thoughts.
Beachwalker X

Thanks so much for your responses, after our intial shock we have got our heads around things-JUST!!!
Mums going for chemo in the next couple of weeks and after xmas we should know where we stand! xx

Just bumping you up hun xxx

Just wanted to pitch in here I have been dx with primary and secondaries on both lungs, multiple lung mets, they told me that sometimes the scan results can show what looks like cancer but is actually scar tissue from previous infections or where the cancer was has left it looking inflamed this can also show up as a hot spot or fluid build-up on a ct scan, which might explain why they told your mum she had it on her lungs, whichever way you look at it they should of been 100% sure it was cancer before telling her about it , I am so glad that they were wrong, I wish they had got mine wrong but alas they did not and I still have it on my lungs although the chemo kicked ass and got rid of most of it leaving tiny nodules on the lungs.

Love and light
Sarahlousie xxx