Ladies who were diagnosed with primary breast cancer, then waited for results of a CT scan and were then diagnosed with bone mets: were other tests carried out straightaway? I want to compare the procedure I had with what other women had.
I was diagnosed with primary breast cancer and then around a week later was sent for pre op and mri. A few days after that I had CT scan and ultrasound (internally) in my womb as I had a lot of bleeding also. Diagnosed with multiple bone mets, cervical mass and spread to one ovary. Mx cancelled as no longer ‘curative’.
If you need more accurate timescales I can get back to you later. I am popping out just now.
I had a bone and CT scan after my WLE after so many nodes were found to be cancerous.
Doodlecat, have you got your chemo, etc. sorted out now?
Thanks to you and finty for replies. I was (mis) diagnosed with bone mets from the initial CT scan - I wonder whether I should have had more tests done to confirm it/not at that time. I will ask about this when I go to the ‘complaints’ meeting.
Jen.
I have asked for a second opinion. I just want an oncologist to actually look at my file. I have been told this will cause delays in my treatment. This is not acceptable. Seeing the breast surgeon this Friday. He has confirmed that oncology is short staffed. My breast is seriiously no longer a breast just a solid mis-shappen, hard lump.
jenanne, my primary was diagnosed from examination, mammogram and ultrasound, needle bopsies were done on the primary and lymph nodes and while results of those were awaited I had CT scan, isotope bone scan and MRI which confirmed there were also bone and liver mets. All this took place in the space of 3 weeks between my first breast clinic appointment and meeting my oncologist for the first time.
Hi Sarah. Hope you don’t mind but clicked on wrong thread and saw your news. GREAT news on being in remission, I’m sure this will be long term. FANTASTIC!
Angela x
Doodlecat - hope your future treatment have been sorted out properly now?
I have a meeting arranged for 28th August re. my concerns over bone mets/not diagnosis. I had a letter recently, from the chief exec. of the hospital, saying that the contents of my complaint letter have been shared with the consultants involved, who have provided information to the director of the cancer centre re. the points I’ve raised.
The letter stated that ‘the concerns you raise about your clinical diagnosis and care are complex’ so will be ‘discussed in detail’ and I will be provided with ‘a full explanation’.
I think I should ask for the information from consultants to be given to me now, before I meet later with professor, etc. at my complaints meeting?
Jen.
Hi Jen, yes I started Capecitebine on Tuesday. Saw breast surgeon a week ago and he agreed no improvement on the lump which is now a whole breast. Tumour markers up again so he recommended change and locum onc agreed. She opened the consultation with ‘you are the woman with the famous boobies everyone’s been talking about’. She was a breath of fresh air. Not good I only got a few months out of Letrozole but at least they are now trying chemo to see how that goes. I have been referred for second opinion - still think it would be useful fir my file to be independantly looked at.
I don’t see any harm in you asking for that information prior to the meeting. If they are saying that the concerns you raise are complex would it be relevant for you to be present at the meeting - or for you to have a face to face meeting to discuss their findings? Either way I hope you receive answers to all your points.
Take care.
June
Hiya June - hope the Capecitebine improves things a lot. I edited my post as I didn’t make it clear that the meeting I mentioned wasn’t between my consultants - it will be one where I will be present and will be discussing consultants’ views (my onc., radiography onc, surgeon) with the medical professor in charge, also consultant radiographer and the director of the cancer centre. To be able to see my consultants’ responses now would probably make for a better discussion, as I can see if they’ve added/changed anything they have said to me before.
Hi Jen, in that case yes you should ask to see their responses. Makes sense to be able to read what they have said prior to meeting. I see no reason why you would not be able to see this and surely it will make for a better meeting for everyone.
June
Jenanne tell them you wnt the meeting to be recorded. This will allow you to go back over the responses afterwards, and will avoid the subsequent - we didn’t say that- scenario.
Doodlecat, when your docs refused to offer you a mastectomy you should have gone elsewhere, because many hospitals do offer this to people with secondary BC (lots of evidence that it aids survival). Debating with them will get you nowhere, because they will just say it’'s out clinical opinion, and your opinions are irrelevent because you’re are not qualified.
Lemongrove, I have asked to be referred for a second opinion (after I lost the trust in them). I am awaiting this appointment at the moment. I had read about having the primary removed aids survival. I don’t really know why I didn’t question it earlier. Thanks for your advice and any more you can give will be most welcome.
Thanks Doodlecat and Lemongrove - I will ask for consultants’ reports on Monday and will get meeting recorded.
Doodlecat, yes, you need to have possibility of surgery looked at ASAP.
Dear All - I have a meeting this Friday 23rd. with the Director of Velindre Cancer Centre, Cardiff, and the Professor/Medical Director, plus a consultant radiologist - to discuss the findings from investigation into my case to date, and the responses from each clinical opinion in detail.
Oct. 2009: ‘There are spotty, sclerotic areas throughout the thoracic & lumbar spine & also in the pelvis…findings would be consistent with bony metastatic disease’.
Jan. 2013: 'She has multiple small, sclerotic lesions in the spine & pelvis which were identified on CT in Oct.'09, and have not changed significantly in that time. The bone scan is normal. Recent MRI of spine is largely normal. The area of abnormality in femur is fairly indeterminate. We have come to the conclusion that the evidence for bony metastatic disease in this patient is tenuous. The small unchanged sclerotic lesions could well be related to a benign bone dysplasia.
I’ve outline my concerns to them, the main issue being that I wasn’t informed or given opportunityto discuss uncertainty about mets/possible benign condition in Apr. 2011, when they first questioned it. From Nov. '12 I had m/x , 2nd lot of chemo (due to now HER2+, so herceptin needed), rads, change of AI - after 3 yrs. d/g with secondaries.
In recent letter from them they have put some responses from clinicians. It says that the consultant radiologist (who will go through imaging at the meeting) 'has highlighted that your case was not re-discussed at MDT until Oct.2012. Therefore the findings of the bone scan in March '11 & the CT in July ‘11 were not reviewed by the MDT, despite the concern raised in the reports regarding the diagnosis of bone metastases. She therefore does believe that there was a failure to discuss your case earlier at the MDT and this led to a delay in informing you of the doubt regarding the initial diagnosis’.
Any comments welcome!
so could sclerotic on a ct scanmean something else apart from bone mets ,if nothing shows on a bone scan ?x
Geordiex -
Breast cancer cells in bone can cause bone to break down (osteolytic lesions, or holes, can form) OR cause bone to build up/repair itself (osteoblastic/sclerotic lesions, or denser areas of bone). In metastatic BC in bones, you can get both lytic AND blastic/sclerotic lesions, due to the action of BC tumour cells on the bone. Sclerotic bone shows up on bone scans, but not always - and can be due to other things, like old injuries, aswell as bone mets. A CT scan will show sclerotic lesions too, which could be bone mets or something else. If you have a primary d/g then they will be checking for mets on CT scan - differential d/g based on images seen is crucial to what your BC d/g and treatment will be. Various factors will affect diagnosis of BC bone mets - best for a patient to ask their oncologist/radiologist re. their own d/g - I will be getting all my imaging examined & explained to me at forthcoming meeting!
Useful info: rad.washington.edu/academics/academic-sections/msk/teaching-materials/online-musculoskeletal-radiology-book/sclerotic-lesions-of-bone
emedicine.medscape.com/article/387840-overview
Jen.
Jenanne I have pm’d you. Pamx
thanks Jen onc was’nt overly concerned but I am having another ct and bone scan ,she said treatment wouldn’t change regarding my herceptin for Liver mets ,but possibly depending on scans may give something for bones the new ones of which the the name escapes me it begins with a ‘D’ and is an injection ,the sclerotic lesions showed up on ct but not on bone x
Re. tests for diagnosing bone mets right from the start - what tests SHOULD be carried out? Can a medical team go ahead with treatment for bone mets on just results from a CT scan, without carrying out a bone scan too?
I would like to know what the minimum tests would have to be, at the hospital responsible for my treatment, but I don’t know how to check on this.
Jen