My story

Donna G
Donna G Member Posts: 20
edited October 2016 in Newly diagnosed

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.

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Comments

  • TonyaM
    TonyaM Member Posts: 2,835
    edited March 2015

    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

  • samaulton
    samaulton Member Posts: 21
    edited March 2015

    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

  • samaulton
    samaulton Member Posts: 21
    edited March 2015

    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

  • KathleenT
    KathleenT Member Posts: 116
    edited March 2015
    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
  • Anne Maree
    Anne Maree Member Posts: 173
    edited March 2015

    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.

     

     

  • Donna G
    Donna G Member Posts: 20
    edited March 2015

    Hi Kathleen,

    Thanks so much for your message.  I am so excited about this site.  I have had so many positive messages sent since I put the my story up a couple of days ago.  I had the flu about 7 weeks ago and then had pain in the back right side.  Took some antiinfammatories thinking it was muscular due to coughing.  Cut a long story short it then moved around to my upper sternum where it sat for a couple of weeks and just did not feel right.  Bone pain is a bit different from muscle pain I have decided!!  Anyway GP ordered a bone scan and that picked up that I had hot spot in the sternum (which also showed a fracture) parts of the ribs, spots in sacrum and lumbar area and pelvis.  Shock Horror!!!  CT scan followed and no invasion to the organs - thank God!  One positive!  Went to oncologist.  Bone biopsy and blood tests followed and the bone biopsy showed that the cancer was from the breast and it was OP and TP which was another positive.  Surprisingly to everyone due to both my previous experiences being DCIS in 2004 and 2008.  So I am currently having femera and injections once a month (first one in two weeks).  I am having radium for two weeks which started on Monday of this week to the sternum and then hopefully can get back to work post that.  I am feeling positive now after much reading and support from sites such as this re prognosis and I now know I do not have a death sentence.  It is treatable and I dont have to have chemo.  Another positive.  Did you have any radium or the injections to strengthen the bones.

    Please keep in touch.  Lovely to hear from you xx

  • Donna G
    Donna G Member Posts: 20
    edited March 2015

    Hi Tracey,

     

    Great to hear from you and thank you so much for your response to my story.  It is a wonderful site and I have had so many lovely positive messages.  After you radium did you get the pain relief straight away or did it take a couple of weeks.  I am currently on painkillers which i want to get off so I can go back to work.  Am on my third day of radium today and have 7 more treatments.  I have heard at the completion of the radium it takes about a week or so for the full effect to be felt and that I may have to stay on these pain killers until then and then I can reduce them.   Any comments re this I would appreciate.  Stay strong.  How long ago were you diagnosed with secondaries.  Stay well.

  • Donna G
    Donna G Member Posts: 20
    edited March 2015

    Hi Anne Maree,

     

    Wow!  What a journey and how amazing are you!  Wonderfully positive - I just love this site and all the positive comments and support I have had since joining 2 days ago.  Wonderful women - thank you. Withe Femera did you or are noticing any side effects since you have been on it.  I know everyone is an individual but it would be helpful to know.  I have only been on it for 2 weeks and have noticed anything dramatic at this point.  I really would be very interested in any comments or help with anything dietary that you would suggest I add.  I am working full time and energy levels can be low at times.  Anything that would boost that would be great.  We eat a healthy diet but if you have any tips I would be so grateful.  You have a great day Anne Maree and please stay in touch.  Cheers Donna x

  • Anne Maree
    Anne Maree Member Posts: 173
    edited March 2015

    Hi Donna,

    When I started femara I had just finished 6 months of chemo. The 1st 6 weeks my body struggled hormonally but then settled and my only ongoing symptom in stiffness of the fingers just on waking which goes away quickly. My oncologist says this is common.

    I also had mets in my sternum but chemo took care of it and the pain went away. Occaisionally when lying on my side I can pin point the tumor due to discomfort. I had radiation to shoulder and spine and was improving significantly within 6-8 weeks. I didnt get immediate pain relief but definitely long term.

    If you have some one to support you by making green juices +/- also carrot juices that is a good start.

    My regieme starts with a warm lemon juice 1 st thing on waking. This gets the bile flowing from the liver which is so important for detox. I then have a green juice ( mostly organic when I can source them-celery,cucumber, lettuce, kale,fennel,a little cabbage ).

    About 4 mornings a week I try to have green smoothies which I include kale, chia seeds soaked in some water, raspberries(frozen ones fine), cacao, splash flaxseed oil,dulse flakes and almond milk. I find these great but you have to acquire a taste for them. I chose not to put fruits that are sweet as it is recommended to keep them to minimum. Sam who sent you a message would happily give you some ideas.

    There are other plenty of other breaky ideas but it depends on your preferences.

    Hydration is very important and they recommend aim 3-4 litres filtered water daily. This impacts on energy levels.

    I will leave it there. 'Energise for Life' is a good website for looking at alkaline foods to get some ideas.They also email good recepies from time to time.

    My suggestion is start working on 1 meal at a time and breaky is certainly a good one to start with.

    Hope you find this useful

     

  • Donna G
    Donna G Member Posts: 20
    edited March 2015

    Hi Anne Maree,,

    Hope your well?  As you know I am a new member and I am not really good with working out this "blog thing!" I want to try and join a group of secondary breast cancer sufferers and I had a go at doing that with the "Join a group thing" that is on this blog.  Didn't work?I seem to be only sending private messages.  Can you give me any tips.  As much as I would lovel to hear every womans story I think at this point it is appropriate and will be beneficial for me to get in a group that has similiar diagnosis to myself.  Would appreciate any help with that.  many thanks and you have a great day.

  • Donna G
    Donna G Member Posts: 20
    edited March 2015

    Hi Kathleen,

     

    Are you having any biophosphanates for yours mets.  I have to have an injection monthly (start in two weeks) To strengthen my bones.  I am on Femera and have to have two weeks of radium on my sternum and have just completed one week of it.  No discomfort from the radium.  I have boney mets in the sternum on some ribs, spot on pelvis and some on the sacral and lumbar verterbra.  No pain anywhere except the sternum where I also have a pathological fracture.  That is all I presented with.  That is wonderful that you are 2 years and no problems.  Fantastic!  Stay well.  What state do you live in.  I live on the sunshine coast in Qld.

  • KathleenT
    KathleenT Member Posts: 116
    edited March 2015
    Hi Donna
    I am in Victoria. I haven't had any injections or radium so far. It doesn't usually cause any problems. I still get really tired though-it might be combination of Arimidex and cholesterol meds. Have begun taking some natal stuff to try and counteract that. Will keep you posted.
    Take care
    Kathleen xx
  • Donna G
    Donna G Member Posts: 20
    edited March 2015

    Thanks Kathleen.  Stay well

  • traxx65
    traxx65 Member Posts: 252
    edited March 2015

    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
    Donna G Member Posts: 20
    edited March 2015

    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.