success stories - real life accounts of women who have survived breast cancer and managed to put it behind them

This is exactly what I need right now, wannaliveforever I too see work as a big part of me, great to see your keeping on top x

Hi,

I am all over the place at the moment. I had Chemo (FEC) last year after TN breast cancer was found while I was breastfeeding 5 month old daughter. It had gone into lymph and I had 2 x 1cm cancer nodes on right lung and a 2.5 cm in liver. Lymph nodes sorted, lumpectomy and liver ablated. After radiotherapy to lymphs and breast, the lung was still unresolved, although Chemo had shrunk the nodes to just 'spots'. 

PET scan from October repeated last week and results show the cancer has grown in the lung and 3 lymph nodes in the centre of my chest are now cancerous. I am going back on Chemo and/or hoping to be 'eligible'for a trial. 

Can you offer any advice? What Chemo did they offer for the lung?

I was offered to be put in touch with palliative care (in the kindest, gentlest way) to help me begin to get a memory box together for my now 18 month old daughter. It's devasted me, but I am still clinging to a grain of hope, however small.

Thanks 

Rebecca x

Rebecca

you know there is hope, isn't it your own mother who defied the odds ?

I was at the NICE patient day last week talking about Kadcyla and there was a lady there from Pfizer, she said they have 4 drugs they're hoping to get clearance for for TNBC

She gave me her card and I emailed her, this is part of her response.

Thank you for taking the time to talk to me any time spent talking to patients in time well spent for us.

https://clinicaltrials.gov/

Here is the trail site I mentioned

Do what you need to do for your daughter, it's a great idea, we used to have scrap books and photo albums and my kids still love looking through them, we try and live our lives but really all we have are memories and those photo albums are key to sharing.

I rely on Facebook too much, I haven't shared loads of stuff with my kids that I really should have.

My ultrasound guy said my Her2+ breast cancer won't come back in my breast, it's going to come back somewhere else, I'll feel a bit ill and they'll scan me and find it, I didn't want to hear that but I feel better for him being honest, not every day, there are days when I curse him but mostly.

big hugs

Carolyn

xxxxx

Thanks so much xxx

I'd forgotten about this thread, some success stories !

xx

Hi Carolyn, I have just read your post from 23 January and I'm sure you can tell i'm not very computer literate.  I was diagnosed in October 2013 with IDC grade 2 stage 3 HER2+. ER+.  What I wanted to ask you was about the ultrasound guy and his comment about the cancer coming back somewhere other than the breast.  At one of my appointments with the Oncologist he said that the cancer would come back at some point. What I was wondering is how do they know this, is there something in our biopsies etc that tells them this is the case.

I am very inquisitive by nature and would be interested to know what you think or know.

Thanks

Chance 1960

hi Chance

how're you doing ?

billion dollar question

how do we know the cancer has returned ?

my team fixated on stray cells but I'm thinking it can be that or, perhaps more likely, the genetic flaw that presented itself to cause the first cancer, simply repeating the flaw at cell level.

The Royal Marsden has switched to a flexible follow up, or non follow up, which relies on you being vigilant. They offered me tips on spotting recurrence and spread.  Headaches equals brain mets, tummy ache equals liver mets, a dry cough equals lung mets and general achey bones equals bone mets.  The most common four. they didn't really mention other mets and I know for a fact cancer can land and cause trouble pretty much anywhere.

So not an exact science !

I said, but I didn't have symptoms for my primary and we know it was left un-diagnosed for 3 years, which is plenty of time to spot even mild symptoms ? So how am I going to decide if a mild headache is a brain met, or a bit of gas is actually a liver met ??

I had an itchy eye and a spot on my arm, not the classic symptoms ?

It's going to be really hard for me, isn't it ?

No, no they said, Mets are obvious

we, here, at Macmillan online, reading posts from people pretty much every day, say it's actually quite different, a lot of cancers have no symptoms, a lot of really quite advanced cancers have no symptoms. I read some days that someone has extensive lung mets and think you must have had a cough, and then I think back to my pre-diagnosis days and I had a cough, a really irritating need to clear my throat was what it actually was, but when I was waiting to find out the results of my staging scans I was resigned to the fact I was doomed.

Her2+ cancer is the sneakiest of them all, it just comes back unannounced

There is a new technology called liquid biopsies but it's not available yet.  It is designed to detect even single cancer cells from a blood test.  This is the kind of really exciting development that the vast amount of research brings. BUT you and me can't have it because it's too expensive.

Goldman Sachs are investing heavily and advising their investors to do likewise.

https://youtu.be/rmsYbLpMF8c

it's going to be worth billions

but for you and me, we have to work out for ourselves if that mild headache is actually something more sinister

the key will be as the good doctor who visited here for a day and bemoaned how difficult it was diagnosing by online forum

is it getting worse ? and is it persistent ?

Is it consistent, persistent and worsening ?

my 2nd tumour ticked all of those boxes, it was painful, the pain lasted four or five days (it actually lasted until the 2nd chemo), it didn't respond to paracetamol or co-codamol, it was always in the same place and it wasn't getting any better. 

consistent and persistent

if you eat something that disagrees with you it lasts 24 hours, not 3 days

For me though, now, this still isn't enough, if it hurts, it's probably too late, it means that it's not a cell, or even a thousand cells, it's going to be a collection of a million or more cells that have formed a tumour and that's too late for preventative medication

if we had liquid biopsies and immediate access to Herceptin you will stop these metastatic tumours forming, in the case of Her2+ breast cancer, other cancers will be a variation on the meds

sorry for the rant but it's still annoying me that this valuable technique is there but out of our reach

xx

Carolyn

Hi Carolyn,

I'm fine thanks.  My hospital has adopted the same follow up procedure as the Marsden re: be vigilant and contact them if I have any concerns.  However, they have not given me any guidance on what to look out for in the way of symptoms of possible recurrence. To be honest though I think an element of common sense would probably kick in and I would know if I should contact the hospital.  

I would say that when I was diagnosed for some reason I did not feel any fear and to be honest I still don't.  My attitude is what will be will be but I do know from reading posts on this forum that this is not the case for everyone and I would not underestimate the fear that some people experience in this situation.

I will look forward to reading your future posts I find them really interesting and informative.

Chance x