Hi, I was diagnosed with breast cancer in 2008 & underwent mastectomy & axillary clearance, which showed spread to lymph nodes, so had the chemotherapy & radiation regime. I was proud of how well I managed, still holding down my job & not having many of the side effects. Though did go through a rough patch with Taxotere, which got changed to Taxol. No radiation burns thanks to Vegesorb (vegetable based sorbelene as normal stuff is petroleum based) & I am very fair, so again, happy. Continued on Tamoxifen. Then in 2015, went to my GP with a little wheeze, which I put down to adult onset asthma, being the only female in my entire family not to have suffered. But no, on a routine check up with the oncologist, lung cancer was found, multiple nodes. Fortunately was able to start a round of hormone tablets, then as it continued to grow, medication changed & Groselin injections added. All going good. Finally decided to take a holiday & tick something off the bucket list. Came back with a cough & was diagnosed with pneumonia & a virus. Cough continued despite all sorts of treatments & medications. Another scan, this time the cancer had grown & more areas in lungs. To be sure we weren't dealing with another type of cancer and still related to BRCA spread, more tests. Yay, low & behold I now have the starting of bone cancer.Am feeling a little woe-is-me at the moment & full of questions & self doubt & persecution.My oncologist & team is fantastic, but as this latest diagnosis is just days old, I am still digesting & processing.Is anyone else going through similar & how do you find your happy place again? I feel everytime I look forward, the cancer makes me stop again.I did read that there are specific exercise programs for bone cancer pts, does anyone know of anyone dealing with that in the Cairns FNQ region?Thanks for listening

Hi @bronmeg1Sorry to hear your news. Try to stay positive - bone mets are the best mets to have as they can be managed. I am sure your oncologist will put you on an appropriate treatment which as mentioned by the other ladies is likely to include a monthly injection of denosumab. I presume as they realised you have bone mets early on that there hasn't been deterioration of the bone structure, which means bone breaks are less likely. Although I don't have mets anywhere else, I have had bone mets for two years now. In that time, they have resolved and then come back again. But due to treatment they have not got worse in the 2 years and I haven't had further spread which makes me grateful. The cancer journey is definately one of many ups and more downs. I try to focus on knowing there will be another up at some stage, but it is hard and certainly some days I feel dreadful particularly knowing that treatment will never end! I think this is the biggest difference between us and the ladies who do not have metastatic disease. Even though they will feel unwell from radiation and chemo it is a relatively short period and we have to going on feeling unwell for the rest of our lives! I also have a 14 year old and an 11 year old which helps me focus on staying alive long enough to at least see them to adulthood. Good luck with your treatment and I look forward to hearin

Hi bronmeg , wishing you well in your treatment . I too have numerous bones mets. which were diagnosed almost 6 years ago. It is a bit of a pain knowing that you will be on treatment for the rest of your life, but it doesn't have to stop you from living and enjoying life. I make the most of my time enjoying coffee with friends, walks along the beach, shopping trips and being spoilt by my husband . Grandchildren also make life worthwhile. There are times when we get down, but if you can cope with the side effects and get out and enjoy life, then we will not let cancer win. I must say that the constipation can be a bit of a bummer at times.! All the best . Be thinking of you.

PS The roses are stunning. Great photo, makes me feel like they are sitting on my desk beside me. Thank you all so much. It is nice that there are people who share similar experiences, and can understand & relate to the emotional rollercoaster that is this journey. Friends, family & medical teams are good, but never quite the same as a shared experience. :) <3

Hi @bronmeg1. I am only new to bcna but have found the group wonderful so far. Like you, I have bone mets. It was my initial diagnosis 15 mths ago. I thought I had broken a rib or pulled a muscle after a nasty chest infection, but no, I had actually broken my spine due to tumors on it. Have primary in lefty and tumors in other places as well. Had a total knee replacement 3 mths before this so it was pretty overwhelming at the time. They did spinal fusion surgery to remove as much of the tumors as possible and stabilize the spine. I had radiation and am still on oxy for pain (also Tamoxifen,etc). Like you, have a wonderful team - Medical oncologist and Radiation oncologist - and am still on 3 monthly CT/MRI scans with a Bone scan coming up in 2 weeks to see were we are at. I absolutely agree that the "Not knowing" is one of the most difficult things. After surgery, I couldn't use my arms much - couldn't cut up food, comb hair, use keypad but the physio said the best thing of all was "the Pool" when I was able. Not necessarily swimming, but simply walking, stretching, using a pool noodle and any other types of things you feel like. They will devise a plan for you but just getting into the water makes you feel good. I believe it has helped me heaps. I am 56 and my girls are only 20/21 so I would like to be around for a bit longer too. Cry as much as you want to and feel as crap as you like, it will change tomorrow, hopefully for the better. Good luck, stay strong, do what feels good for you. Have some Love from Me XXXX

Hi @DCP I am an old chook of 62, and have been on this medical merry go round that is metastatic breast cancer for nearly 5 years, like you I have many mets in and around my spine and lower back area,there are also a couple of nasties in my liver as well, anyway, this is about you not me, so, my dear what can I say to you, first things first, as Zoffiel has said this will be a long haul for you,have the bone biopsy on Friday, hopefully you will get the results very early next week, unfortunately these things take time and we all have to play the waiting game, then there will be a visit to your oncologist to decide on what treatment plan is best for you,. will hubby be able to come with you, this is one time that you really need a second pair of ears as there will be a lot of information to process, my partner took a notebook and wrote things down because you will not remember everything, its very early days and you must be thinking so many things,can I suggest ringing the 1800 no, here at bcna the cancer nurses are there till 9.00pm this evening, so perhaps after your kids have gone to bed and things are a bit quieter give them a call and speak to one of them, and ask away, there are a lot of support services available you just have to know how to access them, when you get a treatment plan up and running please let us know how you are, know that we ARE all here for you, you can come here anytime, ask questions, vent, whatever and someone will always answer you, you are not alone in this,try and take it one day at a time, one hour at a time if need be, you will get there, sending you a big hug,wendy55

Further Spread | BCNA Online Network

35 Replies

bronmeg1
Member
8 years ago
PS The roses are stunning. Great photo, makes me feel like they are sitting on my desk beside me. Thank you all so much. It is nice that there are people who share similar experiences, and can understand & relate to the emotional rollercoaster that is this journey. Friends, family & medical teams are good, but never quite the same as a shared experience. :) <3
bronmeg1
Member
8 years ago
Thank you everyone for your words & support. You all make my cry
Payne
Member
8 years ago
Oh, thank you @SoldierCrab. The bouquet is exactly what I had in mind. Clever girl. I hope @Lisa1407 sees them. x
SoldierCrab
Member
8 years ago

A Stunning bouquet of yellow roses on behalf of @Payne
Payne
Member
8 years ago
Well put @Lisa1407. I am humbled by your comment on the difference between those with mets and those (as yet) without. I'll keep it in mid especially when I have my down times. If I knew how to post pics, I would send you a stunning bouquet of yellow roses.
Lisa1407
Member
8 years ago
Hi @bronmeg1
Sorry to hear your news. Try to stay positive - bone mets are the best mets to have as they can be managed. I am sure your oncologist will put you on an appropriate treatment which as mentioned by the other ladies is likely to include a monthly injection of denosumab. I presume as they realised you have bone mets early on that there hasn't been deterioration of the bone structure, which means bone breaks are less likely. Although I don't have mets anywhere else, I have had bone mets for two years now. In that time, they have resolved and then come back again. But due to treatment they have not got worse in the 2 years and I haven't had further spread which makes me grateful. The cancer journey is definately one of many ups and more downs. I try to focus on knowing there will be another up at some stage, but it is hard and certainly some days I feel dreadful particularly knowing that treatment will never end! I think this is the biggest difference between us and the ladies who do not have metastatic disease. Even though they will feel unwell from radiation and chemo it is a relatively short period and we have to going on feeling unwell for the rest of our lives! I also have a 14 year old and an 11 year old which helps me focus on staying alive long enough to at least see them to adulthood. Good luck with your treatment and I look forward to hearin
Zoffiel
Member
8 years ago
'Feeling a little woe is me'. No shit, @bronmeg1. BC does good job of toughening us up, but that would have to be one of the greatest understatements of all time. You must be bloody frantic with stress, you are in the middle of the thing we all dread.

My cancer returned in 2016, but it was classed as a local recurrence as it was in my armpit and hasn't, as far as I am aware, gone on holidays anywhere else. Yet. Realistically it is only a matter of time, but until then I've done all I can and am now playing the waiting game.

It sucks to be that far down the track (I was 10 years NED) and then have this filthy disease rear it's pug ugly head again. I so feel for you. Good luck. Marg xxx
SoldierCrab
Member
8 years ago
@bronmeg1 I have sent you an inbox message.
jennyss
Member
8 years ago
Dear @bronmeg1, No experience to add, but best wishes from me in Western NSW
SoldierCrab
Member
8 years ago
hi @bronmeg1
I shared a room with a lady from cairns at BCNA Summit last year, who is active with the cancer council in cairns they have a phone support line, she had talked about it with me while we were together. I will get some information for you and post it here tomorrow.
Soldier Crab

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Further Spread

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