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

Zoffiel
Member
8 years ago
Ah @DCP that is rotton news. Family living a long way away can make things even tougher.
There is a closed group for young women, give them a tap and they will let you in--sadly, there are a number of people in your situation.
About the only advice I can give you is try to organise any family visits so they are staggered and everyone doesn't arrive at once. This will be a long haul for you and will need support once you get going with your treatment. People's natural instinct is to rush to help as soon as they can; its good to have someone who arrives a bit later when the dust has settled a bit.
Good luck in the coming weeks Mxxx
DCP
Member
8 years ago
Hi Ladies, ive just been reading over this thread as I was just diagnosed with multiple mets in my bones, at the ripe age of 32. Its been found in my cervical vertebrae in my neck, lumbar vertebrae, mid spine, 4 ribs, throughout hips and other bones in that area. Im waiting to have a bone biopsy on friday. Im looking for any info that could help as we are a young family will children aged 7 and 10, with my husband being the bread winner and all family that live 9 hours away
Zoffiel
Member
8 years ago
Oh, that sucks @Etta This really is a shit of a disease. Marg xxx
Etta
Member
8 years ago
Hi @bronmeg1. I first had BC in 2013. Recently been told I have mets in multiple bones, liver & lungs. I am beyond despair. I'm 45. All I can offer you is virtual hugs and for you to know there's others out there like you. I'm on Zoladex & Letrozole & start Palbociclib & Denosumab (spelling??!) next Thursday. Let's all stick together. It is very easy to think you're the only one suffering like this. Love and strength, Etta ❤️Xxx
Patzy
Member
8 years ago
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
bronmeg1
Member
8 years ago
No truer words were spoken @Brenda5. Doubts & fears do hit, but we generally learn to rise above to fight again. I shouldn't grumble as I really have had easier than some & I have had nearly 10yrs (so far). It is good to have a reality check every now & again, so thank you
Brenda5
Member
8 years ago
You just have to get on with living your life. Let your doctors sort out treatments as that's what they are paid for. It's not just one doctor calling all the shots either. Mine gets into online conferences with other doctors and they discuss each others patients and that treatments to follow on with. Many heads are better than one.
Jlb
Member
8 years ago
I was also diagnosed in 2008 at age 50. Coped well with treatment but mets in bones, lungs and liver in 2012. Stopped paid work to focus on my health

Been on a number of treatments over the last 5 years and have lived a good life.

Currently on Eribulin and feeling well. Unfortunately have to change due to neuropathy side effects.

Willing to use my super tp try palbociclib or Ribociclib but oncologist says they will not work for me as I have had metastatic disease for too long.

I am sure your oncologist will find a treatment to help you.

Let us hope new and better treatments are found soon and quickly put on the pbs.

I appreciate the support and lobbying bcna provides.
Lisa1407
Member
8 years ago
Thank you @Payne and @SoldierCrab for your thoughts and kindness! I just love yellow roses. They are my absolute favourite. Something about their colour that makes me happy!
wendy_h67
Member
8 years ago
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.

Forum Discussion

Further Spread

35 Replies

Recent Discussions

New kisqali packaging

💛 Help Shape a New Text Message Support Program for People Living with Metastatic Breast Cancer

Complete Metabolic Response De Novo TNBC

Xgeva and tooth extractions

Enhertu working