For the first time in the 5.5 weeks since diagnosis, I have been absolutely rocked to the core. I visited my oncologist on Thursday and saw her locum as she was on leave. At the end of the routine appoitnment she said, ooh here's a sealed envelope in your file - let's have a look. Long story short, it was my bone scan report showing two spots, one on my spine and one on my ribs. She was terribly embarassed however she explained, too quickly, that instead of having beat cancer, I now have cancer for life. I have now processed what little info I have and am going back next week with more questions however would love to hear from anyone in a similar situation? I have spent almost the past 48 hours on google and am yet to find an indicative prognosis, ie how long do I have? Can anyone help? Thanks so much. xxx

So very, very sorry to hear this. There is never a good way to find this out but very upsetting to hear it the way you did. I can only imagine what you are going through right now. But I do know that there are a few ladies on here who have been living well with secondaries for a number of years. If you do a search on Cellbird you will find that she has had very good results with her treatment so far and I am sure she is not the only one. There are a range of treatments that often work well for extended periods of time. Keep in touch. Will be thinking of you and hoping that you get some better information and answers next week. Take care. Deanne xxxxoooo

I have been living with bone mets for 7 years! Yes, there are challenges along the way but I go about my business as normally as I can. There are some great treatments that can keep things relatively stable. To some degree it does depend on type of bc you have but there seems to be alternate options as each drug stops doing its job. Hang in there and enjoy all the good days. xx

And Lisa, to find group of those living with secondary, go to 'my groups' on the right hand side and then you put in key words for options. I hope that works!!

Now they say it's in the spine! | BCNA Online Network

16 Replies

Annette_joycie
Member
12 years ago
I agree with your comments and those of the other ladies. There's a product I've been taking for years, called Percy's Powders. It has Magnesium, Potassium, Iron, Zinc and Manganese. I buy it on line but just be careful as different distributers charge different amounts. Take care. Cheers Annette Joycie
morry
Member
12 years ago
Hi Lisa I am now into my third year of Bone mets after sixteen years of breast cancer. I thought I just had a sore back and was shattered when the Doctor rang me back to tell me the bad news. I take Aromasin, Xgeva infusion and am pleased to say that I will be having it only every three months instead of monthly. I just want you to know there is always hope and new treatments being discovered. I get up in the morning push the clothes back, feet in my slippers get that welcome cup of tea and decide to get on with my day. You will find the strength also.
Mozzee
Member
12 years ago
So sorry to hear of your diagnosis...it sucks!! but you have come to a great place. I have to agree with the other ladies. I don't think Google is a good thing in this case. Questions are best left for your Oncologist. As well as finding BCNA I have found a great support group. I was diagnosed with bone mets 3 years ago after 15 years free. I have quite a few spots, both hips, thoracic spine, cervical, lumbar and scapular so originally I thought I was going to die. I have had very little change in 3 years so the Femara is working well. My Doc says that if this drug stops working there plenty more. Life is good and I am enjoying Dragon Boating. Sending you hugs and rainbows xo
Beery
Member
12 years ago
Good advice given in 'Hope & Hurdles' too Sue:-)
Lisa_BCNA
Member
12 years ago
Hi Lisa Jane,

It's Lisa from the BCNA Policy Team. I'm sorry to hear your news. BCNA has a range of supports that you may find helpful. Have you received a copy of the 'Hope and Hurdles' resource? It's our free resource for women living with secondary breast cancer and contains a lot of useful information about the range of treatment options, practical supports and other resources available.

You can find out more about 'Hope and Hurdles' here http://www.bcna.org.au/hope-hurdles-pack, and either order it online or by giving us a call on 1800 500 258.

Best wishes,
Lisa
Lisa_BCNA
Member
12 years ago
Hi Lisa Jane,

It's Lisa from the BCNA Policy Team. I'm sorry to hear your news. BCNA has a range of supports that you may find helpful. Have you received a copy of the 'Hope and Hurdles' resource? It's our free resource for women living with secondary breast cancer and contains a lot of useful information about the range of treatment options, practical supports and other resources available.

You can find out more about 'Hope and Hurdles' here http://www.bcna.org.au/hope-hurdles-pack, and either order it online or by giving us a call on 1800 500 258.

Best wishes,
Lisa
LisaT
Member
12 years ago
Hi Lisa Jane,

I agree with all the other ladies dr google can be misleading. A breast care nurse is also a good source of information. I was diagnosed just over 2 years ago with secondary in my bones and have been fortunate to be stable so far with monthly injections and daily tablets with all the lovely effects of menopause. However I have a good quality of life and I'm making the most of it. Wishing you all the best

Lisa
wendy_h67
Member
12 years ago
I am also sorry to hear your news, but as you will see there are plenty of pink sisters here to give you support & love. I found that it was not a good idea to look up google Dr. as it can be confusing & not always the right information. I have never asked my oncologist how long I have, as I think when you get to your use by date you would probably give up. Everybody is different and on different treatment & your oncologist will have the right information for you. Try to be strong enjoy the things you love doing. I am now passed my 2nd annivresary and feel well enough to go on for a long time yet.

Your pink sister Wendy
lisa256
Member
12 years ago
Hello Lisa Sorry about your results. Try to stay strong. xxx
JeanineG
Member
12 years ago
I'm so sorry to read about your diagnosis and the truly shocking way you have found out about it. There is no excuse for that Doctor's behaviour. I wish you well and hope that you find the right treatment, and a more sympathetic professional experience in the future. If you need to blow-off steam, this is the place to do it. Sending hugs, JeanineG Xxx