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

Donna_G
Member
13 years ago
Thanks Kathleen. Stay well
traxx65
Member
13 years ago
Hi Donna, if you are trying to join the Advanced Group I think you just click on the subscribe to blog tab. If all else fails, marls40 is in charge of the group and she may be able to sort any issues out for you. You should be able to type her name into the search bar and then be able to send a personal message to her. Hope this helps.

Take care.

Tracey
Donna_G
Member
13 years ago
Your a legend Tracey but then I guess you knew that!!! Thanks so much. I will give it a go. I am no IT expert but my kids think I am a "trendy Nannie" to be on facebook so I guess I can beat this one!!! Have a great day.
TonyaM
Member
13 years ago
I'm not that flash with IT either so you are not alone. If you click on anyone's "pink" name that immediately takes you to that person's blog site.Under their profile pic there is "send a message"and by clicking on that you are then able to type that person a private message.If you are now reading this then scroll down to the bottom of this page and you'll see on the left hand side(near the pink lady) the words"about us".Now look under that for "contact us"and click it. You can send a message to Daina(she runs the online)and ask her for help to join the secondary bc group.I'm not sure myself how to join that group.If you want to read the latest blogs (and you are reading this now) scroll to top right corner of this page and you'll see,in green,+network home.Click it and it takes you to recent blogs from women on this network. I fumbled my way around at first but got the hang of it- still stuff to learn though.Don't know if any of this has helped you or confused you! In anycase,Daina is your girl to contact. Good luck.

Tonya xx
Anne_Maree
Member
13 years ago
Hi Donna,

Great that Tracy could help you with regards to the joining the groups. Women Living with secondary Breast cancer is the more active site as apposed to Secondary Breast Cancer group. People use this site in different ways, most of the people who replied to your blog are people with secondary breast cancer . Some people do all their blogging just the way you are doing it now to open it up to people who dont have SBC. I know there is also a more active private Face Book group for secondary BC,you can apply to be a member once you are member of facebook. I dont belong to it as I dont do facebook. I just come on line mostly these days when someone sends a private message or I am on the site to keep updated. Basically if you have a question or want to share something just blog away either on your blogg or reply to others, or do your own blogg under Women living with Secondary Breast Cancer.

Take Care
traxx65
Member
13 years ago
Hi Donna, not a legend, just know how important it was to me to feel like I wasn't alone and somebody understood how I felt. Hope all is going along okay for you. Wishing you all the best.

Take care. Tracey xx
KathleenT
Member
13 years ago
Celeste-that's truly amazing! So glad you got some relief! It weird, isn't it..whilst we know that the more bone scans and cat scans we have to check on status of cancer in the bones gives us get more potentially dangerous radiation, if the oncologist tells us we need to wait longer for next check; it's good news and bad news at once! Hopefully no more will be found when I eventually get there, but it's always the way that I "imagine" little pains in other spots while waiting. Does anyone else experience this? Cheers to all-this is such a wonderfully supportive forum!
Donna_G
Member
13 years ago
Thats wonderful Celeste! I am soooooo happy for you. I am into the second week. Have only two weeks treatment. My pain presented in my sternum initially. That was the first and only symptom I presented with and this was the reason I had the bone scan which showed up some hot spots in my sternum some ribs lumbar and sacral spine and pelvis. Scattered spots. Not widespread. Fortunately all my organs are clear. Praise God! I am on Targin 5mgs twice a day (morphine derivitive) for relief with the sternum pain but have reduced that now to once a day because I want to get back to work on Thurs of this week. have been off for 6 weeks since the diagnosis and NEED to get back to work . I guess the pain medication Ihave been on is masking the radium effects but the oncologist (radiation one) said to keep taking them because the full effects of the radium may not kick in until a week after due to the accumalative nature of the doses. Heres hoping he is right. Thank you so much for your message. I just looooooove this site. So many brave inspirational supportive women. I am so happy to be part of it. I am still trying to work it out but am slowly getting there. Take care. Have a great day Celeste. Stay in touch. I love your profile picture and that beautiful scarf. x
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

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