Hello
I was first diagnosed in 2005 with breast cancer at the age of 36. I had two 5 cm lumps in my left breast and would need a mastectomy and the removal of some lymph nodes. I attended chemotherphy every 3 weeks for 6 months and completed 28 rounds of radiation which was given daily. I was given the all clear in July 2006 and started taken Tamoxifen daily.
At the regularly 3 monthly scan in 2008, a small spot about 1cm was found in T8 of my spine. Monthly Zometa was given intravenously for 24 months and the daily drug was changed to Femara.
Again, I was given the all clear in August 2010. I was living in Townsville @ this time and the treating oncologist believed that scans every three months was a bit excess and I as being treated in a Public Hospital I did not have any scans until I returned to Brisbane in January 2011.
Late 2010, I started to have some pain in my back. I put it down to old age as I was now 42 and it felt more like a muscular strain. I thought I was doing too much. I let my oncologist know about the pain when it got too much to handle and started to become a little hard to ignore and he suggested that scans would be a good idea, just to rule out the most obvious.
The results were not good. The cancer had spread to my liver and there was also another 8 spots in my spine. The ones that were causing the pain were 3 2 cms spots in my pelvis. So the circus started again.
I was given weekly chemo for 3 months to treat the cancer in the liver and the Zometa was changed to Bondronat. However, there was nothing more they could do for the cancer on the bone. Oxy-Contain was given for the pain. It started at 20mgs twice a day and is now at 120mgs twice a day. I was medical retired on 30th July this year as the pain has made it impossible to have a working life.
So now I am kinda stuck in limbo waiting for the cancer to get better or worst. I am also not sure if it getting worst is such a bad idea. Some days the pain rules the whole day and dictates what you can and can’t do. Sometimes all I can do is sleep all day in a hope to have some relief.
I am not even sure anymore if this is normal. I have a wonderful medical team, husband and family and a wide and varied support network but I don’t know how long this can go on. I spend all my time feeling like there is something missing, like I can’t breathe properly and with butterflies in my stomach. The journey has become very, very, very hard.
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Dear Leslie,
I am so sorry to hear your story, but welcome to the site. You will find much support and wisdom here, especially from the women living with advanced disease. While all our situations are different, there is much we have in common. I was first diagnosed in 2004, and reiagnosed early this year with mets in my bones and liver. Chemo has helped and now I am "stable".
I was wondering whether your bones were totally not affected by the chemo? Often there is a change from lytic to sclerotic, which is regarded as an improvement. Also I have heard many women say that radiation can really help with the pain from bone mets - have you discussed this at all?
For ABC women, the word "normal" changes - if sleeping all day is what you need, that is normal for you. The journey is hard indeed, and my heart goes out to you.
Best wishes..... Pam
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Hi Leslie,
It sounds like you have been through alot over the years! I hope you can use the online network to connect with others who know exactly what you are going through.
Just shout if you need a hand finding your way around or have any questions. Otherwise you may from the Help section of our website useful: http://www.bcna.org.au/node/476 and you also might want to connect in with the online support group 'Living with advanced breast cancer'
Good luck and keep us update,
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Thx u so much for ur reply I was hoping that reading and corresponding with women in the small situation would help me get some sort of place where I can feel a little less distant to the rest of the world
Thx for the tip on radiation, however, we did try this but received no pain relief
The mets in my bones that we already know about are stable, however, there are new growths every time we scan. I think I am up to 13 now. The cancer does respond to the Bonaparte but while it keeps the growths from getting bigger it is not stopping new ones growing
Anyway, here's hoping that I find some wisdom and new friends from here. I have also found some wonderful groups on Facebook if ur interested.
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Thx for the tips
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Hi Lesley, I'm so sorry things have been so difficult for you
. This path is a very, very challenging one indeed! I also have mets in my bones (and lungs). In an eight week period, I went from having no bone mets at all, to having very aggressive and widespread bone mets in my skull, ribs, spine (thoracic and lumbar), pelvis and hip (quite extensively in my hip apparently). They were going to put me on Zometa, but decided at the last minute to put me on a new drug called Denosumab (Xgeva) for my bones. Denosumab is a newer drug that is used for bone mets - it has taken over from Zometa apparently and works differently to Zometa. I'm pleased to say that Denosumab has stopped the spread of my bone mets in their tracks, and I have just found out that my scans are showing evidence of healing in the bones! I was told last week that this drug can actually reverse the damage done by bone mets...I couldn't believe it! Denosumab is a monthly injection under the skin (no veins needed), usually in the belly, and is very quick and easy to have. I wonder if this is an option for you Leslie? Perhaps you can ask about it? I have it as a public patient in a public hospital.I also had radiotherapy on my spine but for me it helped relieve the pain. I know you said the radiotherapy didnt help, but can you try it again in another area and see what happens? Is it worth another go?
Sending you lots of positive vibes Leslie, take care Celeste ?
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Hi Lesley, I'm so sorry things have been so difficult for you
. This path is a very, very challenging one indeed! I also have mets in my bones (and lungs). In an eight week period, I went from having no bone mets at all, to having very aggressive and widespread bone mets in my skull, ribs, spine (thoracic and lumbar), pelvis and hip (quite extensively in my hip apparently). They were going to put me on Zometa, but decided at the last minute to put me on a new drug called Denosumab (Xgeva) for my bones. Denosumab is a newer drug that is used for bone mets - it has taken over from Zometa apparently and works differently to Zometa. I'm pleased to say that Denosumab has stopped the spread of my bone mets in their tracks, and I have just found out that my scans are showing evidence of healing in the bones! I was told last week that this drug can actually reverse the damage done by bone mets...I couldn't believe it! Denosumab is a monthly injection under the skin (no veins needed), usually in the belly, and is very quick and easy to have. I wonder if this is an option for you Leslie? Perhaps you can ask about it? I have it as a public patient in a public hospital.I also had radiotherapy on my spine but for me it helped relieve the pain. I know you said the radiotherapy didnt help, but can you try it again in another area and see what happens? Is it worth another go?
Sending you lots of positive vibes Leslie, take care Celeste ?
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