My story

Posted by Donna G on 22 Oct 2012, 05:42PM

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.

Comments

Hi Donna

TonyaM's picture

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's picture

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

Metatastes

KathleenTaylor's picture

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

Donna G's picture

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's picture

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.

Metastases

KathleenTaylor's picture

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's picture

Thanks Kathleen.  Stay well

traxx65's picture

Hi Donna,

I have been living with advanced breast cancer for 7 years now.  I was diagnosed with a secondary in my sacrum.  I had radiation to it straight away and it hasn not given me any grief since.  Over the last two years I have had a couple of hiccups with nodes in my mediastinum.  I have also had a  pleurodesis back in January (Fluid in the chest cavity) and fluid taken off my abdomen back in July.  Currently I am on AC chemo and I have one more to go in November.  It all plays wonderful little minds games with you, but I think we just get on and do what we have to do.  Therre are still options available and each thing works differently for everyone.  Please feel free to have a vent and if we can help we will.  Take care.  Tracey

Donna G's picture

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.

Hi Donna

Anne Maree's picture

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's picture

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

Femara

Anne Maree's picture

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

 

Groups

Donna G's picture

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.

Blogging

Anne Maree's picture

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

 

 

Julie Bache's picture

Hi Donna.

Welcome to this site. I hope you find support and some reassurance from sharing. Cancer seems to treat every one of us a little differently so while we all have commonalities in our jouneys we all have our own unique experiences!

I was diagnosed with BC in 2001 and had a lumpectomy, nodal clearance and radiation. In 2006 I was given the magic 5 year handshake and supposedly the 'all clear'! Soon after that, having stopped my tamoxifen, (coincidence?) I started having hip and leg pain. For 12 months this was put down to back problems and treated with chiropractic sessions. It did not even enter my mind that there could or would be secondaries. Finally, when i could bear the pain no more I asked for a scan, just to rule it out. And to my shock and disbelief I was diagnosed with mets in sacrum, ribs, hips and the worst affected area, left femur.

I was first sent to an orthepaedic surgeon to have metal rod put in to stabilise the femur. Then radiotherapy and put on femara as well as monthly intravenous dose of zometa to strengthen and protect bones. Fortunately the BC is a hormone positive receptor so the theory is, strip the body of oestrogen and it has nothing to feed on! I am happy to say this seems to be working as consequent scans have shown very little uptake in this time.

My leg has been the subject of much drama and continues to be but i won't bore you withe all that as well! I am fortunate to have a wonderfully knowledgable and caring oncologist and, touch wood, no mets in organs, my worst nightmare! I have had several courses of radiation along the way but recently became aware that radiation can compromise the bones so am wary of rushing in to this again in the future.

I am pretty much pain free but do think our pain tolerance levels continue to rise. I try and keep busy and have a trip or something special always planned for the future. I love spending time with my first grand child, a gorgeous girl now 16 months.

Look forward to hearing more about your journey and hopefully lots of positive stories! Take care, be positive and stay happy. xx

Julie.

traxx65's picture

Hi Donna, I was never diagnosed with early breast cancer.  I was diagnosed with advanced in 2005.  I had radiation pretty much straight away and within a week I could notice a reduction in pain.  I think if I remember correctly, it keeps on working in your system for up to three weeks later.  I haven't been on pain killers for that side of it in 7 years.  I plod along and do what they tell me.  Hopefully you will feel some relief soon.  Wishing you all the best.  Take care.  Tracey xx

 

Joining the group

traxx65's picture

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's picture

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.

traxx65's picture

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

Hi Donna

TonyaM's picture

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

Celbird's picture

Hi Donna, just wanted to let you know that I had radiotherapy a little while ago on my lower back and felt immediate relief as soon as I got off the bed! I couldn't believe it...all pain gone! I was so surprised as I thought it'd take a while to work, but sure enough I had all pain relieved the moment I got off the bed and the pain hasn't returned either! Take care, Celeste ♥

Donna G's picture

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

Bone mets/back to work

KathleenTaylor's picture

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

Bony mets

KathleenTaylor's picture

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!

Julie Bache's picture

Hi Kathleen.

I hear you! I am waiting on scan results at present and every little tweak worries me. Seems to be more of these at night! I recently had  a couple of minor car accidents (not my fault!) within 6 weeks of each other and the second one, while barely a gentle nudge has caused me much discomfort in lower back. I'm now worried that damage to already compromised bones may have occurred. Fortunately, pain has eased so may be nothing long term.

After surgery to femur for a break, surgeon made a point of limiting radiotherapy and scans as he said radioactivity  compromises the repair of bone. I would now think twice before having anymore radiotherapy. Guess we need to way benefits against negatives.

Hope all news is good! Julie.x

 

 

Bone scans

KathleenTaylor's picture

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

Donna G's picture

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's picture

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's picture

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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