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

three_tits
Member
8 years ago
Hi bronmeg, just read this today and sending you and others warm wishes . so far i have not hd toa deal with this however I can only imagine how it might be and want you to know I am thinking of you and wondering how you are doing .
Cate64
Member
8 years ago
@bronmeg1 I have bone mets & manage them very well by keeping active, I was a runner before diagnosis & despite treatments & the Onc telling me Xeloda would out an end to it.... it did not & I am happily still running 5km Saturday mornings @ parkrun & also competing in events such as The Gold Coast Marathon in June...

It is a rollercoaster ride of emotions but I find physical activity helps me heaps...
DCP
Member
8 years ago
Thanks Zoffiel, for the several years prior to finally getting diagnosed, I would keep a copy of every blood test result etc, and even now I have all of my original results from the diagnosis and every scan and letter from the Drs I could get my hands onto, they all pretty much know the drill lol, thank you for your helpful advice!
DCP
Member
8 years ago
Thankyou Kath, surprisingly I'm doing ok, which Im shocked about, I feel like I had the 2 years to prepare for a recurrence. Just taking it one day at a time for now, and for now I'm ok, tired and in pain but ok x
primek
Member
8 years ago
@DCP I'm do sorry of your diagnosis. It must be a very distressing time for you. We are here for you and will help where we can. Right now just sending a hug. Kath x
Zoffiel
Member
8 years ago
One thing off the ''to do list' @DCP
There are a few of us here who have some techniques for dealing with snarky cows. Some of these methods are decidedly not PC. Some are.
You are in for the long haul and it's unfortunate you've had to deal with a bitch so early. There are ways of managing these people.
Firstly, get yourself a collapsible folder and take it everywhere. Get a month a page diary and a note book. Put them in the folder. It doesn't matter where you go, take that folder. Get business cards from all your consultants. In the folder. Every single person you deal with, in the notebook. Xray, ultrasound, whatever, who, what and when. In the folder. Ask for copies of every single test. In the folder. Starting to get the picture?
You meet someone like that again, get out your trusty folder and document it. Ask their name. Write down what happened. They will either behave or steal the folder.
It's easy to get bamboozled, keep records. Best of luck. Marg xxx
DCP
Member
8 years ago
Thankyou so much for all the lovely advice, it’s very comforting to know that there are people out there to lean on and offer support and advice. Bone scan is all done, after an awful run in with a the CT nurse which lead me to walk out of the scan room in tears after some very hurtful comments. Now resting at home
Giovanna_BCNA
Member
8 years ago
Hello @DCP, @bronmeg1,

Sorry to hear your news. Please dont hesitate to contact our helpline on 1800 500 258 if you would like to speak with a cancer nurse for information or support. We are available Monday, Wednesday & Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.

There is some great information on our website that you may find helpful. BCNA also offer a free counselling service if you feel you would like some further support. It is a professional one-on-one counselling support to women and men with metastatic breast cancer, and their families.
This free and confidential service aims to help people diagnosed with metastatic breast cancer and their family members cope with a range of concerns they may be experiencing, including:
uncertainty about the future
concerns about their loved ones
issues related to financial pressures
communicating with family or health professionals.
The program is open to people in all states and territories. See the link below to further information.
https://www.bcna.org.au/metastatic-breast-cancer/metastatic-breast-cancer-telephone-counselling/

Wishing you both well in your treatment
wendy_h67
Member
8 years ago
Sorry to hear your news. I too have numerous bone mets but was diagnosed 6 years ago. with my initial breast cancer diagnosis 20yrs ago. Life has not been too bad even though I have been on different treatments. In the last 6yrs , I have still been able to get out and enjoy life. Coping with treatment just becomes a different way of life. Try not to let the cancer beat you. I love going out with friends for coffee or lunch. I live near the coast so enjoy w. alks along the beach . There are days when things get you down , and I think everyone get anxious when its time for scans. There are alot of different treatments available now so if one treatment starts to fail there is usually another drug available. Hope things go well for you.
wendy55
Member
8 years ago
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