just come across this thread, i am still on chemo an will be till june08 been on it since july o7 then gotta have rads, had grade 3 agressive cancer and lyph nodes removed although dont know how many, they said the lump was 11cm they gae me a lumpectomy and said if i wouldnt have found it i would have had a different prognosis by xmas gone, they said i have to be checked for ten years instead of five, but now i have read this what is secondries and what would the symtoms be?? rather worried now as i not up on alll this
Hi Tillie,
Sorry you have had to join us on this website.
We all need to be aware that this disease is incredibly unpredictable.
You are still going through the treatment stage which you must focus on and get through.
I have always wanted to know everything there is to know about breast cancer and have found this website invaluable.
We must all support each other and just hope that a breakthrough will happen that will prevent the disease returning or spreading.
I wish you all the very best in your treatment and outcome.
If you need any support for whatever reason ask the ladies here. I don’t know what I would have done without them.
Love Jugsy x
I have also recently found this site, and having been diagnosed two years running with bc am now very concerned about secondaries.
It has never been mentioned at any of my consultations. Does anyone know the statistics of how many women go on to get secondaries after being diagnosed and have had ‘successful’ treatment for bc?
There are no statistics at the moment on secondaries which is one of the areas that Breast Cancer Care have highlighted and was discussed at an event down in London in October which several of us attended. There are going to be two pilot studies on collating data though.
Try not to worry too much about statistics - as has been said before here, we’re all individuals and unique ones at that so the statistics might say one thing but you go on to prove the statistics wrong.
Having now gone almost 2 years from my original diagnosis and lumpectomy, I have had a reoccurance and had to have a mastectomy on the original breast. due to complications with the axially vein and a tumour on my lymph node scar I had a PET scan after it was authorised by the PCT. Unbelievably, it failed to show up a 7cm grade 3 tumour in the other breast and 24 malignant lymph nodes on the same side. It did however, show two 15mm tumours in the original breast, hence the first mastectomy. The jury is out for me now as to whether the scans are usual or not. I do believe CT scans for mets in the liver, etc are usual but how can anyone explain a 7cm tumour not being identified?
once again its down to the postcode lottery
At my hospital you automatically have a bone and ct scan before starting chemotherapy. This picked up my secondary spread a month after primary diagnose. I will be having scans on a yearly basis from now on but if i notice anything in between scans my oncologist is happy to refer me for a scan
Jools
Hi Jools
I’m sorry to hear that you were diagnosed with secondary spread so quickly and that’s also very worrying that it can happen like that. I had a bone scan and a CT scan and started chemo within 3 weeks of the results of those. Can the spread happen that quickly? When you were diagnosed with primary BC did they do the scans at the time and then repeat them before chemo?
I also had scans straight after my dx of bc. I was dx on July 16 last year and had an MRI Scan, Bone Scan and CT Scan within a week and unfortunately told 10 days later that had spread to my liver. I don’t know how long it has been there as had no symptoms and never felt ill, only had a dull lower back ache which I put down to my then 8 month old son!!
I agree with Jools that it sounds like a postcode lottery, as I had no idea why I was having scans and the onc did seem surprised with the results from the ct scan.
Am on herceptin now and seein onc next week, so will be asking how often I will have scans from now on?
Thanks for getting back to me. I’ve seen some of your posts and also am so sorry to hear about your secondary diagnosis so quickly - what a shock and also what you’ve been going through recently and my heart goes out to you so much. In fact this whole thing is so shocking.
I had scans etc straight after diagnosis like you did but not an MRI. In fact I think my consultant was quite surprised recently when he realised I hadn’t had an MRI scan initially but by that point I’d already had chemo etc so there was no point I guess. I just hope there is nothing sinister going on in my body right now as I have an extremely low white blood count (neutrophils of 0.4) and they’ve slowly been going down! I’ve been taken off herceptin until the cause is determined. In fact until my neurophils go up they won’t give me herceptin so I’ve been without it since 2nd Jan which is very worrying and making me very nervous.
I have to say my hospital were very good at organising the scans etc. On the day I got my positive results for BC my consultant had organised a bone scan for that afternoon and CT scan and blood test and further biopsies on other breast for the following week.
I’ll be thinking of you for your appointment with your oncologist next week and sending you good vibes.
Last week my oncologist asked if I would like a CT scan now and annual ones hereafter because of my triple negative status.I said no thankyou as I dont have worrying symptoms at the moment and I understand that a)scans are not totally reliable andb)early detection does not lengthen survival with mets.What can be done is the alleviation of symptoms and slowing of growth which is equally effective later as sooner.My oncologist said I was absolutely right and nothing under 1cm was likely to show up.[I’m amazed at your 7cm Bev].So I have the option of a scan whenever I want one and in the meantime I want to avoid the stress of tests and results for as log as possible.Love from horace the ostrich!
Hi all I had my 1st CT during chemo as originally DCIS -histology-H2+[as no lymph glands were sampled]This CT was OK just an ovarian cyst…When checking it
12mths later… liver mets 3 up to 5.5cms … no symptoms bloods fine … got on a drug trial for herceptin [already receiving this] and omnitarg so far so good tumours
reduced by 30% and stable
.
As a nurse I feel sure that if I had been diagnosed with symptoms I would have had ca in other places as the liver connects to all!
My thoughts are that treatment has moved on but ideas haven’t now we have an uncertain somewhat limited life span so it makes sense to look[CT] at least once after treatment
especially for those of us with aggressive tumours the old fashioned idea that it doesn’t make any difference - we are all ultimately terminal is pants! xJan