Hi my name is Donna. I am 63 and have just been diagnosed with invasive globular carcinoma with boney mets. I had a DCIS in the right breast in 2004 which proved non invasive post hookwire surgery and in 2008 another DCISin left breast which also proved negative of cancer cells. It has been a terrible shock to find now I have bone mets from breast cancer with the breast being the primary. Apparently 10% of cancers go undetected depite mammograms carried out regularly and unfortunately it is the lobular ones that go in that basket. I am now having radiation for the pain in my sternum and am going on Femera and having an injection once a month to strengthen my bones. Just started radium today for two weeks on my sternum which is the only area I have pain at the moment. Am on pain killers until that kicks in. I am happy to join this group and hopefully it will be a great support on my journey.

I am so sorry to hear you have breast cancer and bone mets but welcome to this network where you'll get lots of support. It would be such a shock after thinking you'd delt with DCIS twice.I've had bc twice.The first time was in 2003 when I had a lumpectomy,full node clearance and radiation.Then in 2010,I got it back again in the same spot so had to have a mastectomy and chemo. I am lucky in the fact that it was early breast cancer each time.But it does pull the rug from under you when it comes back.I'm not so confident now and often wonder if cancer cells have travelled elswhere- time will tell.It's just so hard to believe that 2 DCIS episodes can lead to bone mets.I can just imagine how gutted you'd feel.There are quite a few women on this website who are living with mets and keeping it under control with medication.They have their own group which you could join if you wish.There is an art/craft group as well called creative corner which I belong to.You don't always want to blog about cancer.But this is a wonderful site where you can get lots of information,support,friendship and the opportunity to vent your feelings - I think venting helps.Good luck with the radiation,hope it helps with the pain.Sending a hug - Tonya xx

Hi Donna, My name is Sam and I was diagnosed shockingly with bone and lung mets nearly 2 years aGO AFTER HAVING BREAST CANCER WAY BACK IN 2000 AND THINKING THAT IT WAS DONE AND DUSTED. i FOUND OUT THAT THE CONVENTIONAL TREATMENT DIDNT WORK FOR ME SO i HAVE HAPPILY USED ALTERNATIVE METHODS THIS TIME AND HAVE REVERSED ALL SIGNS OF DISEASE. sO YOU CAN IMAGINE THAT I AM A VERY HAPPY CHAPPY AND LOVE MY NEW LIFE FEELING PHYSICALLY BETTER THAN I HAVE IN YEARS......sorry just realised that I hit caps lock and I have a 5 and 8 year old hassling me for dinner so I will go but if you want some healthy recipes, ideas or just an ear to listen pleae feel free to vent! Take care, Sam

Hi Donna So sorry to read your story. Sounds similar to mine. My bone metatastes was discovered in my right sacral (pelvic bones) soon after my first breast cancer diagnosis. It was scary, having the bone deep biopsy, lying on my stomach while they took a sample. However, when I heard (this is going to sound weird to you!) that I had a small amount in the bone, after the first shock, I was actually glad! Because it's far mire damaging if you have it move to your organs, or bowels or digestive system. It has been there for nearly 2 years, and being controlled by Arimidex, it has remained the same size all that time and hasnt spread anywhere else. I've read (in my Hope and Hurdles), on the net, talking to Oncology etc, that it can remain in the bones like that for years, and not have any detrimental affect on us at all. I haven't had pain from it at all. You mentioned pain in the sternum-is that the location of your metatastes? Happy to talk further if you'd like to. Stay positive, and take good care. Hugs Kathleen xxx

I was diagnosed with high grade aggressive breast cancer (invasive duct carcinoma) in September 2010. I was diagnosed with primary and secondaries at the same time. Secondary tumors included Right shoulder ( no movement and shoulder muscles paralysed). Also 2 liver mets. Each day things picked up speed and I had several rib mets and 2nd thoracic and 5th lumber mets. My cancer is Estrogen positive. HER neg, progesterone -ve. I suffered with severe insomnia unrelated to anxiety and pain from boney mets I underwent aggressive treatment with radiation to shoulder and spine, hormone treatment, chemo and bone strengthener all in the 1st 3 weeks. I responded well to treatment despite multiple hospital admissions. I regained 2/3 of shoulder movement and all power again. The other boney mets stabilised. 6 months later my liver mets were on the move again with new boney mets in thoracic spine and crest of pelvis. I completed another 6 months of chemo and then started femara in January this year. I am very thankful to be stable at this point 2 years into my journey. I continue with blood tests 6-8 weekly and scans 3 monthly. I embraced a whole food plant based diet which includes regular juicing.I also attended Gawler foundation in April this year to support this. My vitality with good foods is fantastic. I no longer have insomnia,pain or fatique. My quality of life is great. I attend regular counselling sessions with a psychologist and work on keeping my wellbeing as high as I can to optimise the immune system so it can deal with healing.Research shows doubled life expectancy for well-supported people with breast cancer. I do regular gentle exercise as research also shows people who exercise opposed to those who dont double their life expectancy. Just competed last weekend in 200 km ride to conquer cancer for Chris O'Brian Lifehouse which is scheduled to open next year. I get out in the sunlight regularly as it is good for endorphins and vitamin D. I generally try to seek pleasure where-ever possible as research shows white blood cells have receptor sites on them for endorphins which in turn makes them work faster. My tumours were in same location where a mammogram diagosed a cyst 5 yrs earlier and no further followup. All of us have our own journey, we all respond to treatment differently, we make different choices to deal with our cancer diagnosis. When we see that there are so many options out there to help ourselves this gives us hope. Kathleen and Tracey touched on bone mets can remain stable for many years. I hope that you get encouragement from this site.

My story | BCNA Online Network

27 Replies

KathleenT
Member
13 years ago
Hi Julie Yes the panicking at night thing happens a lot with me. Sorry about your accidents: glad that nothing untoward happened and your bones didn't deteriorate more. Hope the pain stays away. You're right, we do need to weigh up positives with negatives. So many of us survive through this and the treatments have moved along so much. Take care Regards Kathleen
KathleenT
Member
13 years ago
Hi Julie Yes the panicking at night thing happens a lot with me. Sorry about your accidents: glad that nothing untoward happened and your bones didn't deteriorate more. Hope the pain stays away. You're right, we do need to weigh up positives with negatives. So many of us survive through this and the treatments have moved along so much. Take care Regards Kathleen
KathleenT
Member
13 years ago
Dear Donna I am glad you're here on the site, as actually your mention of going back to work has hit a chord with me. I reckon I have just been giving in to the side effects and long term effects for long enough. I have made one positive change-moving closer to family. Going to visit them always gives me a lift-the children have so much positivity and life. Over the next few weeks I'm going to make more of a concerted effort to carry on without dwelling on things I can't do. I'm very glad your mets has not been found in any organs. That's a real blessing. Keep going and stay positive: and thanks for giving ME some inspiration! I love this site too- the best support! Take care Love from Kathleen x
Donna_G
Member
13 years ago
Hello everyone,

I have not bloged for a while. Have been busy starting a new job which I love. Manifestation of positivity brings positive things. This job landed on my lap. God has been so good to me. 5 mins from home and working with a great team. 2 more years until retirement and I could not have wished to see out 35 years of nursing in aged care in a better spot! What a great way to finish a crap year!! Never mind - I have been well thank God. Have been on Femera since diagnosis in the middle of Sept. Had my two weeks of radium for # sternum which was the initial painful spot that forced me to go to the Dr. Am having Denosamab injection monthly (2nd one this Wed) and go back and see my oncologist in a month. Blood tests before hand to see what the ole cancer markers are doing. I had a melt down this morning. Over the last few days of a night when I lie on my left side I get some pain in my left hip area. Not severe but discomfort. I have never had that before. It was not one of my "hot spots" with the boney mets. The right side was. Of course I thought "God this has spread!!" Then of course other areas felt worse than they were most probably I was thinking that rather than it being an actuality. This disease is so incidious. The deamon thoughts come into your head when the above happens and I try soooooo hard to think of positive things to get myself out of it. Most times i am very good at it but sometimes it takes a little longer. I guess that is OK. I am sure you have all felt the above feelings and we just have to be kind to ourselves and see it as normal. I have been for a bike ride today and a swim and this afternoon I fee back on track. Just wanted to connect with you guys because that makes me feel happy and very positive. Your all inspirational women and I draw from that. I have to get on here more often and say hello. Does not have to be for support just to connect and say Hi guys hope your all well and having fun. A dear friend who has had a bad year with illness (not cancer) sent me the following message today on an email. I would like to leave you on this note.

"Each day gives us another chance to dream

Look to the sky and never stop believing"

God bless and stay well xxxx
Anne_Maree
Member
13 years ago
Hi Donna,

Congratulations on your new job. It is great to work if it generates pleasure,

I still work as it fits into my wellness plan. When I feel things are out balance I pull back. I find it requires regular fine tuning.

New pains can scare us but it is important to be vigilent and ask ourselves what this pain could be. Normally a new tumour worsens steadily and doesnt go up and down in nature. If there is concern even after few days it is better to get a blood test done and see GP rather than be overwhelmed with the unknown. I have done this a few times and once I was right. This was good as my liver lesions got treated while still smaller rather than 7 weeks later and lot bigger.

I have been on Femara for almost 12 months and it can give bone pain as side effect in different areas of body. Also Denosamab has side effect of bone pain.

If I dont stay on my alkaline diet I get bone pain that can cause questions for me but I tighten up my regime for a few days and they settle down. I have learned over time how to test out new pains. It is good to pay attention to these pains.

Great to see you experiencing the benefit of exercise, I get great benefit from regular exercise. I like walking and cycling too. I recently rode in Ride to conquer cancer (200km) and when I started out training 8 weeks earlier I struggled to do 10 km. Now I endevour to ride and walk regularly.

Enjoyed reading your article recently in Inside story.

Take Care

Donna
Anne_Maree
Member
13 years ago
Hi Donna,

Congratulations on your new job. It is great to work if it generates pleasure,

I still work as it fits into my wellness plan. When I feel things are out balance I pull back. I find it requires regular fine tuning.

New pains can scare us but it is important to be vigilent and ask ourselves what this pain could be. Normally a new tumour worsens steadily and doesnt go up and down in nature. If there is concern even after few days it is better to get a blood test done and see GP rather than be overwhelmed with the unknown. I have done this a few times and once I was right. This was good as my liver lesions got treated while still smaller rather than 7 weeks later and lot bigger.

I have been on Femara for almost 12 months and it can give bone pain as side effect in different areas of body. Also Denosamab has side effect of bone pain.

If I dont stay on my alkaline diet I get bone pain that can cause questions for me but I tighten up my regime for a few days and they settle down. I have learned over time how to test out new pains. It is good to pay attention to these pains.

Great to see you experiencing the benefit of exercise, I get great benefit from regular exercise. I like walking and cycling too. I recently rode in Ride to conquer cancer (200km) and when I started out training 8 weeks earlier I struggled to do 10 km. Now I endevour to ride and walk regularly.

Enjoyed reading your article recently in Inside story.

Take Care

Donna
Donna_G
Member
13 years ago
Hi Anne Maree,

Lovely to hear from you. Glad you are feeling well and enjoying your exercise. Fantastic effort with your 200km ride. Amazing effort!! Well done. Thanks for the tip re the pain that you may feel from the Femera and the denosamab. That made me feel a little better and alleviated some of those worries when the "deamons" get in your head!!! I hate those bloody demons!

Stay well and have a wonderfully happy and peaceful Xmas with your loved ones and Ihope and pray that 2013 is a year of great things for you and most importantly continued good health

Love and light,

Donnax

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