I was diagnosed in October with Grade 3 breast cancer - full mastectomy and lymph node removal as 19/20 positive lymph nodes Her2+ and ER - had chemo and radiotherapy - was told on initial diagnosis thought I had cancer in chest lymph node - as it reacted to chemo they confirmed I had. Halfway through had a scan and it had shrunk by half so less than half an inch. Having herceptin and anastrozole as post menopausal even though only just 50. My oncologist was not going to do a scan after I had finished my treatments as she said I had had all the treatment. Have insisted so I am having a scan possibly later August/September and results when I return from holiday in Canada early October. Feel very anxious - can anyone tell me if they have been offered other treatments for this condition and what they are and I would like to hear from anyone who is a long term survivor. Any comments would be so welcome.
Busy Bee, My cancer had spread to my lungs and lymph nodes in chest 10 years after my Bi-lateral mastectomy. I had no lymph node involvement at initial diagnosis. I have had been here almost 11 years now with the cancer in lungs and chest lymph nodes. I have been on chemo therapy for the whole time. FF
Hi Busy Bee, I have a tumour in my right hilar lymph node which is one on the chest wall, as well as one in my right axilla (armpit) I have had a secondary diagnosis from this since July 2013. Prior to this I had a primary diagnosis in 1995 with all the treatment and 5 years on tamoxifen. 14 years later I had a local recurrence on the reconstruction scar. Had another round of treatments. 2 years later, another local recurrence and 2 years after that, my secondary diagnosis.
So I have had a lot of treatments! So far no further spread though. There is some debate about whether a nearby lymph node is a regional recurrence or a secondary. I was told it was inoperable and hence incurable, it’s a big shock but I have done well and there are many treatments to try…are you ER positive or negative?
depending on your hormone status there are hormonal treatments, chemo both IV and tablet, and newer targeted therapies.I think that if you read these forums you get so much knowledge and support, wishing you lots of luck xx
Hiya busy bee
Reading all the posts on the threads …I find it interesting that more scans are being done now which means any problems are being picked up quicker and dealt with.
In 2004 I had primary . .mammogram , lumpectomy etc etc and discharged after five years. My first ever ever scan was October 2015 with the hip problem so i think although a pain .the scans can save you a lot of trouble later on.
Xx
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Thought id also post this here as it may give us all a bit of cheer. When i saw my onc on Wed, i mentioned 'liquid biopsies ’ which he explained are actually blood samples from which an attempt is made to classify cancer cells within the circulating blood. I asked about this because I had heard about it on the Inspire website.
My onc had, at a previous appt explained that they thought my ca had changed its DNA(letrozole no longer worked, whilst id had a brilliant response some years earlier) so this week, I wanted to know if i was still oestrogen pos.
the onc said on Wed there was a trial being considered soon which would be looking at precisely that and I would be eligble for it, but that the planners were still trying to find the money.
apparently they hope to be able to look at the subsequent dna changes that happen and to then be able to target these and even eventually maybe predict which changes will happen so they can target those also.
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if this approach works then ethically, the NHS will have to make it available all over the UK, as I suspect it will soon be in the USA…as they seem to be trialling it already!
THis appears to be a radical new way of looking at cancer which could make great inroads into treatments, because I had already heard that ca cells metabolism uses specific proteins in order to grow and spread. Seems this new method could perhaps lead to them nipping these in the bud? As well as forgo the need for tissue biopsies, which of course are painful and traumatic and cannot always be done…some mets are far too small to be seen.
i think CANCER RESEARCH UK .is a good place to watch, for these new trials hopefully to be emerging shortly.
love and hugs
Moijan
So sorry I haven’t replied sooner to you all but I really do appreciate the time you have given for all the replies and your experiences - a big thank you to you all. You are all so inspirational and FF you are truly amazing - your postings have given me such hope - 11 years!
i still haven’t had my scan date but since original posting have experienced some tightness and intermittent pain in the right side of my chest - was trying to be hopeful and think that the radio and other treatments I have had may still be working not so sure now wondering if my tumour has grown - very scared but will call the onc as wasn’t due to see her until early October on my return from Canada when I was going to ask for scan results and discuss them with onc. Want to go to Canada as may be last long trip but scared once I tell the onc and have my scan at the treatments and my prognosis. Sometimes life isn’t too fair for us especially when we try so very hard. Sorry I think I’m turning into Harry Potter’s moaning myrtle! Love to all xxx
Hope yu dont mind me joining you ladies…i dont have chest lymph node mets (well not that i know of) but skin, pleural and bone.
Just wanted to wish busybee good luck with the scan…hoping you dont have to wait too long…this is always the worst.
Was really interested to see you post Moijan. I havent been on that website bt have read about tissue typing etc…
my cancer changed from er+ to tneg which has limited my treaement options so have been looking into anything i thought would be useful especially immunotherapy etc. However, when i saw a leading Dr recently he didnt give me much inspiration but i am now going to ask my regular onc what he knows about ‘liquid biopsies’ . If you learn any more about trials etc please let us know. x
Hi everyone
Really sorry I haven’t come back to you before - just to confirm my scan results were really positive. The chest node had shrunk with all the treatment I’ve had and is now slightly enlarged 7mm. I no longer have my original Oncologist but a locum who seems very nice but just seemed to shrug off any concerns saying wasn’t anything of concern now. Whilst clearly this is the best news I could have ever hoped even though they say they won’t scan me for about a year I feel quite shaky that I won’t know if it’s growing in the meantime so they can deal with it earlier. I know it must sound so silly and I do appreciate how lucky I am when so many of you have very serious concerns about your health and prognosis but I can’t stop thinking about it. Any assistance would be greatly appreciated. Xxxx
Hi Busy Bee, I haven’t posted for a while so I might have missed something but are you having any ongoing treatment now? A year is a long time to wait for another scan, I think that I would be speaking to your team and making a nuisance of myself. They must listen to your concerns so don’t be fobbed off!
I have secondary breast cancer although “only” a node in my armpit and a tumour in my hilar lymph node which is on my chest wall. This has grown smaller and larger depending on my treatment and my armpit node is no longer visible on CT scans. I have had continuous treatment though as my cancer developed from local recurrences since 2009 until the secondary diagnosis in 2013. I think that as you are obviously concerned I would want some further discussion as to ongoing treatment.Please don’t feel alarmed though, it’s only one person’s thoughts!! xx
Thank you Still and FF - i think you are absolutely right and I welcome your suggestion - a request for a six month scan is a great idea. Thank you ladies. I hope you are both well. xxxx