Secondary breast cancer in my bones.

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Hello, I'm Denora and I was diagnosed with Invasive Lobular Breast cancer 3 years ago and I had a right mastectomy and all lymph nodes removed. I had 8 very high strengths of chemotherapy and had Sepsis half way through and finally had 25 rounds of radiotherapy and then put on Letrozole for 10 years. I felt things were wrong in Autumn last year but my breast nurse said there's nothing to worry about and that was on 3 visits. In February I saw my Oncologist because the Letrozole was not agreeing with me. He saw something was wrong straight away and arranged an Isotope Bone scan. I was in total shock when my husband and I had the results. The cancer is in many parts of my bones starting from my shoulders, spine, hips, femur, knees and small areas throughout the body. I've just had surgery 5 weeks ago to put a metal rid in my femur and screws in my left hip to stop it snapping. I'm on 3 lots of treatment. 1 tablets 3 weeks on and week off and 2 injections. 1 is a bone strengthener and 1 is a hormone injection. The Letrozole did not work at all for me. I start radiotherapy next week on my hip, femur and spine. When I was told the news and he said it was terminal, he said I was looking at 2 to 3 years without treatment but 55 years with. I'm determined to fight that timeline. I'm 56 and only been married 5 years after being widowed and my 2nd granddaughter is due any day. I have too much to live for. 

Does anyone else feel the same?

  • Hello Denora, I am so sorry to hear what  you are going through. I also have secondaries. Double  masectomy  4 years ago an fo fir past 18 months none cancer in many places. I've Chemotherapy  every week and 1 week off. It is so difficult  , but it has to be dome. It is not curable  but thank god ii is treatable. , and while this is available I will go fo it. You have been through so much, don't give up   stay positive , take everyday as it comes. Listen to your team,  they will be a great help. New medication and clinical trials are ongoing. I know it is hard, but jeep going. Enjoy yor family x

    1. Hi Denora, I had Her2 positive grade III cancer 12 years ago and had mastectomy on left side and reconstruction. 3 years ago I was told I have secondary in my sternum. I had radiotherapy and was put on letrozole but that didn’t work for me either. Then put on Palbociclib which was horrid and that didn’t work so have now been on bone injections and capecitabine but my scan say my lymph nodes under my left collar bone have grown one centimetre since Feb so it looks like capecitabine isn’t working either. It’s very upsetting when your trying everything but the cancer is too strong. I feel your pain but we have to take one day at a time and live life to the full within our capabilities. It’s hard because the fear of dying is always there we’ve just got to try our best to surpress it and not let it spoil our time left. Look after you, sending you big hugs x
  • Hello Denora I know exactly what your going through my story is very similar you can read more of it on the breast cancer forum oncotype DX breast recurrence trial . Lobular right breast stage 2 , but only one node affected. 

    Diagnosed October 21 right breast removed but no chemotherapy on the basis of the above test .Radiotherapy only.  I though I'd got away with it !

    I began to feel differently in January that's the only way I can describe it . however the mammogram came back clear in February.  In April I saw an oncologist not my usual one, he said the pain I was feeling in my chest was caused by lympodema sent me to the breast care clinic. Very friendly but not helpful, still in pain I went back again on may the 11th at my daughters insistance with a now visable mass on my sternum . My GP guessed immediately that it was in my bones . Isotope bone scan confirmed it stage 4 in six different places.  I've decided not to go down the treatment route even though it might mean I die sooner . I too have grandchildren it hurts to think of all the milestones in thier lives that I wont see

    I'm 67 I plan to get as much joy out of my that is humanly possible. Pain relief is wonderful nowadays.  Cancer will take my body but not my spirit. Luckily I have a strong and supportive family.

     Yes it's hard not to be angry, no-one Deserves to get cancer,  but when you've never smoked, drink very little and exercised your entire life, it seems doubly unfair. I admire your determination to keep going, be strong be thankful for the small things and vent when you need to . Sending love x