I was diagnosed with inflammatory breast cancer in October 2011 and was told it had spread to bones (spine and rib) we went to see the doctor yesterday and the good new was that the tumour had shrunk, the bad news was that my life expectancy is one to two years maybe 3. We were shown the extent of the cancer in the spine, which affected about 2 thirds of the vertebra. This news was shocking. The closing words from the doctor was “we all die eventually” which I think was very unprofessional.
My treatment will continue after the last chemo there will surgery to remove ovaries and the removal of the left breast but no reconstruction. Not really sure why this is so hopefully the surgeon will be more forth coming. This disease seems to be more like leukaemia cause it travels round in the blood, which is most frightening cause were will it land next. Sorry to burden everyone with this just needed to talk to someone.
Sunnychair
First things first - (((((HUGS)))))
So sorry you have been given this shocking news in such an insensitive way.
Check the bottom of your left foot. Is there an expiry date there? No? Exactly. No-one can predict life expectancy - there are just averages based on information that any given day is out of date.
Am assuming they are removing your ovaries so you can go onto an aromatase inhibitor? You’re ER/PR +ve?
I would ask for a second opinion, not because it will change the diagnosis but because it is always good to have more than one view. Also, I wonder how much faith you have in someone who has given you very little hope and who seems to have written you off.
My first onc sound like the person you have described. I have since transferred my care to another onc in one of the national cancer centres who only deals with secondary breast cancer. I now feel cared for and have faith that he and his team will fight my corner with me.
Please don’t feel you are a burden here. It’s what we are all here for, so feel free to vent. Hopefully there wil be someone else along who has experience of living with IBC. Have you checked the specific IBC thread? Might be useful.
Hang on in there. Please feel free to message me if you want to chat.
Laurie x
Hiya sunnychair
Sorry it wasn’t such good news 
But as Laurie says they cannot say how long you will live th can just give an average and often these figures are based on people who were diagnosed 10 years or more ago and things have improved dramatically since then especially for bone mets and also for inflammatory BC.
There is a dedicated section on here for IBC.
I think it’s worthwhile to get somebody else’s take on it.
Are you getting your ovaries removed because the cancer is genetic? I recall you saying you had a family history.
I had a hysterectomy and ovaries out 16 months ago.
Lulu x
Hello, Sunnychair,
I don’t really have anything to add to the good advice Laurie and Lulu have already given you, but just wanted to send hugs, strength and positive energy your way to counter the negativity of that onc. Stay strong and surround yourself with others who will bolster that strength, Angelfalls xx
Thank you all very very much for all your kind words. I am going to see by GP next, she is very kind and I know she will listing to how I feel and advise what to do next. Just need to get my act together just keep crying at the moment,don’t want to look silly. love to you all xx will try to find out about some of the questions you have asked…
I think my story might help reassure you. I was diagnosed with Breast Cancer in November 2009, and had a mastectomy and lymph node clearance in January 2010. During surgery it was discovered that 14 of 24 lymph nodes was infected, and that my cancer was so aggressive it had actually burst one of the lymph nodes in my neck. As a result I had a battery of scans and in February 2010, I was told the cancer had already spread to my bone (my skull). My then consultant told me that chemotherapy and radiotherapy would be pointless, that I would just receive palliative therapy (endocrine therapy and bisphosphonates), and that my life expectancy would be about 18-24 months. I asked the Oncologist if would I make it to three years, and he said that was highly unlikely.
I wasn’t happy with the treatment proposed, and voted with my feet. I went to a London teaching hospital, where I had 18 weeks of chemo followed by 25 sessions of conventional rads to the MX site,lymph nodes and neck, followed by 5 sessions of cyberknife stereotactic rads for the skull mets. It is now 27 months since diagnosis, and I am not only still alive, but at my last set of bone and CT scans (in October 2011), it was discovered the skull mets had not only disappeared, but had healed over with healthy tissue, and there is no evidencce of cancer anywhere else.
Moral of the story? = only God knows when our time will be up, because nobody can predict with certainty how cancer will behave. My cancer could come back, and I could be dead by next Christmas, or it could come back but then grow very slowly, so that I die in twenty years time, or it might never come back. Alternatively I could have a heart attack or get run over by a bus.
Personally, I don’t think you should focus on whether the prognosis is right or wrong, but whether the fact that they made it says something about the Oncologists approach. The prognosis could just be a sign that your Oncologist takes a hard-nosed approach, or it could mark a defeatist attitude - and of course only you can decide which.
Hi Sunnychair
I was diagnosed March 2009 age 50,IBC with suspected liver spread. Had six sessions of tax, mastectomy and node clearence, 3 weeks of rads. LD recon in Nov. 2010.On herceptin indefinately. Was in remission until August last year when a six monthly scan (thank god for them) showed a bulky head on my pancreas, no symptoms what so ever. I’ve started weekly vinerolbine and herceptin (am on a trial so other tabs to take too), so far so good 3 weeks in and I’m still fit and well, a few mouth ulcers but I can deal with them! Not once has my consultant been anything other than positive, as far as I’m concerned that although I’ll probably have to have treatment from time to time and stay on herceptin continually I intend to be around for a long time. Oh and while all this has being going on I’ve had two lots of lipo on my new boob and a reduction and uplift on my other one. Infact I’m having my tatoo on Monday as first stage of new nipple!
I live life to the full with it alongside, it doesn’t rule me, I rule it by asking lots of questions and making sure that I always have copies sent of any letters to GP/other depts/consultants etc.arranging treatments and appts that fit with me - lunching and shopping!!! I do find that feeling in control is part of feeling positive.
Could you possibly ask for a second opinion, change consultant?
Lemongrove is an inspiration and gives a good example what can achieved.
I seem to have rambled a bit but just trying to say there is lots of treatment out there so please try and smile not cry and above all
don’t give up
Mandy xxx
Hi Sunnychair
I was diagnosed March 2009 age 50,IBC with suspected liver spread. Had six sessions of tax, mastectomy and node clearence, 3 weeks of rads. LD recon in Nov. 2010.On herceptin indefinately. Was in remission until August last year when a six monthly scan (thank god for them) showed a bulky head on my pancreas, no symptoms what so ever. I’ve started weekly vinerolbine and herceptin (am on a trial so other tabs to take too), so far so good 3 weeks in and I’m still fit and well, a few mouth ulcers but I can deal with them! Not once has my consultant been anything other than positive, as far as I’m concerned that although I’ll probably have to have treatment from time to time and stay on herceptin continually I intend to be around for a long time. Oh and while all this has being going on I’ve had two lots of lipo on my new boob and a reduction and uplift on my other one. Infact I’m having my tatoo on Monday as first stage of new nipple!
I live life to the full with it alongside, it doesn’t rule me, I rule it by asking lots of questions and making sure that I always have copies sent of any letters to GP/other depts/consultants etc.arranging treatments and appts that fit with me - lunching and shopping!!! I do find that feeling in control is part of feeling positive.
Could you possibly ask for a second opinion, change consultant?
Lemongrove is an inspiration and gives a good example what can achieved.
I seem to have rambled a bit but just trying to say there is lots of treatment out there so please try and smile not cry and above all
don’t give up
Mandy xxx
Sorry I’ve posted twice, I’ve tried deleteing one - I’ve done it before but do you think I can today!! Duh! x
Hi sunnychair
I am sorry to read of your diagnosis, it sounds like you’re having a pretty tough time at the moment. As well as the support you are receiving on here you might find it helpful to talk things through with a trained member of staff on the BCC helpline. Here you can share your concerns with someone who will offer you a listening ear as well as emotional support and practical information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 9 to 2pm.
Best wishes Sam, BCC Facilitator
Hi sunnychair
When I was diagnosed with liver & bone mets, I was told I’d have between six months & two years - that was in 2003. No one can predict how we’ll respond to our treatments, or how much impact our BC will have on us - do please talk to your GP about getting a second opinion, preferably from someone who doesn’t fob you off with “we all have to die sometime . . .”! Marilyn x