mum may have secondary breast cancer in her back- bones

Hi everyone,

I’m new to this forum, but am desperately seeking some advice! My mum was diagnosed with breast cancer in 2003- it was quite aggressive (grade 3), and she had a masectomy.She underwent chemo and radiotherapy, and is currently on tamoxifen. After a few years she toyed with idea of having a reconstruction done, and after encouragement from her surgeon, had her date booked for her op in November this year. On the day of her op, she had an x-ray done, which showed shadowing in her lung. After a second x-ray, the x-ray was clear, so they went ahead with the op. However, as a precaution, she had a CT Scan done on the last day of her admission.
On Friday, she had a check-up with the surgeon, who told her that the CT scan showed that her lungs were clear, but that there was something showing in her back-bone. As I’m sure many of you are aware, its devastating to hear this. She now has to go for further tests to investigate. It should have been a happy day for us both, but we are both now so worried about it.
Sorry if this is a bit of a ramble-I was just looking for some advice really. I’m just so worried about this, and would hate my mum to suffer. She currently has no pain in her back at all, and I’m just hoping that this is a blessing in disguise, in that they have caught it early enough to contain it.
Any advice would be much appreciated.

Thanks everyone,

Nicola x

Hi Nicola

Welcome to the forums, I am sorry to read that you and your Mum are having such a difficult and worrying time at the moment, I am sure your fellow forum users will be along soon with support and information for you.

In addition, Breast Cancer Care can offer you support, information and advice through our helpline, you are welcome to call on 0808 800 6000 for a confidential talk with one of specialist nurses. The line is open Mon-Fri 9am-5pm and Sat 9am-2pm. For further support for yourself we also have a ‘Family, partners and friends’ room here on the forums where you may wish to also post as you can ‘chat’ to others who may have had a similar experience to you.

Best wishes

Lucy
Moderator
Breast Cancer Care

Hi Nicola, I was diagnosed with bone secondaries in 2003. There are lots of treatments available for your Mum if she does have secondaries. My first treatment was Tamoxifen, I’m now on Aromasin. I don’t know how old your Mum is but I have a jab every month to stop my periods and bone strengthening (bisphosphonates) tablets which are also available as infusions.
It is devastating to be told you have secondaries, it took me a while to get my head round it…but somehow life goes on. I still don’t have any pain at all, no pain killers. I wish your Mum all the best and hope all will be well…Love to you both…Belinda…xx

Hi Belinda,

Thanks for your post, and I’m so glad to hear that your doing great. My mum is 60, and I just worry so much for her, and if she can cope with further treatment. She had a really rough time with the chemo she had, but its a relief to know that there are other effective treatments out there, other than chemo. I’m just trying to research as much as I can, so I know all the available options for her.
Thanks so much for your post, it’s great to hear from you. I’m in awe by all the posts I have read, and especially from brave women like yourself. Much love, Nicola.x

Hi Nicola,

I just spotted my post i made soon after your first one never appeared!! Lost in the ether. I just wanted to say like Belinda there’s lots more they can do for your mum. I was diagnosed 17 years ago now - and I have had quite a lot of treatments but am still here to tell the tale. I have had bone secondaries for the last five years. At the time it seemed like the end of the world - I even thought I would be in a wheelchair cos my bones were in such a mess - but after first few weeks of treatment I was pain free and get around without much trouble. I have bisphosphonates as belinda does - but the infusion variety. And I am nearer your Mum’s age now at 62. So here’s hoping they can start on treatment soon and the news won’t be too bad.

love to you & Mum,
Dawnhc

Hi Dawn,

Thanks so much for your message- its fantastic to read that you are doing so well. It is so comforting to know about the treatments available, and how successful they are. I have read about bisphosphates, and about a drug called Bondronat? Apparently that is effective in the treatment of secondary bone mets, but I guess it depends on age, tumour size etc. just want to find out as much as possible. The waiting begins again- my mum is just waiting for a date for further tests. I just hope that the CT scan was a blessing in disguise. I will let you know how she gets on.
Thanks so much, love Nicola x

Hi Nicola - Just wanted to say that I am thinking of you and your mum. Of course I hope that this will not turn out to be something that needs further treatment. But reading your caring e-mail it shines through loud and clear that whatever the outcome you will be wonderful at helping get your mum through all that lies ahead. It can be very lonely if you have no one there for you, and I am sure your mum appreciates being able to share all her concerns with you, and the active interest you are taking in her treatment. Here’s to families everywhere who walk side by side us as we take this journey. Stand up and take a bow! Seabird xx

Thanks so much for that lovely e-mail Seabird, that means alot. I hope that you are currently well at the moment-this forum has been a god-send to me, and I’m sure my mum would find it too (she doesn’t have the internet at home unfortunately). Whetever happens, I just want to be prepared as much as I can, as my mum can get lost in medical jargon.

Thanks so much for your kind words, and I sincerely hope you are well yourself. Thinking of you also. Nicolaxx

Hi Nicola

Just want to add my thoughts which are exactly the same as above. I was diagnosed with spine secondaries in 2004 and have had both the tablet form and I.V. and my bones are so much better now. Like Dawn, I thought I was going to end up in a wheelchair (which I did last year but that wasn’t because of my bones) but the amount of people who are amazed that I look so well and don’t really believe what’s going on in my body!

Good luck to both you and your mum - she’s lucky to have you.

Love Pinkdove
xxx

Hi Pinkdove,

Thanks so much for your comments- it’s so positive to hear from everyone and gives me great hope for the future, whatever the results are. If you don’t mind, can I ask what tests you had to diagnose your spine secondaries? Its fantastic to hear that you are doing so well also.

Thanks so much for your post, Nicola xx

Thanks for your posting back Nicola. I am new to all this - was just diagnosed with BC two weeks ago, and had surgery a few days ago. Waiting to hear what comes next - definitely radiotherapy and probably chemo. This site is just brilliant though, and I know will be a great support to me, and thousands like me. Will be thinking of you and your mum. Love Sarah

Hi Nicola

It was the MRI scan that really diagnosed my spine secondaries but I’d been having real problems with pain in my spine for months beforehand. I used to be really fit (walking, dancing, ski-ing, the gym, etc) and put it down to pulling a muscle - how wrong I was!!!

They did a bone scan as well but the MRI scan was really the one that confirmed it. I think they did my bloods at the time as well (can’t remember but they must have) to check bone involvement but I’m not sure whether that in itself would have been an indicator.

Off to Leeds tomorrow shopping which I wouldn’t have been able to do even a year ago (as my liver started to misbehave!).

Good luck Nicola to both you and your mum. It makes such a difference having someone close to you share what you’re going through,

Love Pinkdove
xxx

Hi Sarah and Pinkdove,

Thanks so much again for your replies.

Sarah- so sorry to hear of your recent diagnosis, I’m thinking of you. I can remember the shock I was in when my mum was first diagnosed (it does’nt run in our family at all, and I guess you think it will never happen to you or your loved ones) I wish you all the best in your treatment- if its any consolation, my mum found the radiotherapy a walk in the park! let me know how you get on.x

Pinkdove-thanks for that. Just wasn’t sure what tests my mum will get, I just hope the CT Scan is wrong (they said it could be nothing-they have to investigate to make sure) Its just the waiting now. So glad to hear that you are having a day shopping, and that you are doing well. You are both an inspiration! Hope you buy yourself something nice tomorrow.

Thanks again-I’m thinking of you both also,

Nicola xx

Hi Nicola

Fingers crossed for your mum that the CT scan doesn’t show anything up.

I’m hoping to get a coat (know exactly what I want which normally means that I won’t be able to find it!!) plus meeting up with my son who’s at uni there so really looking forward to it.

Love Pinkdove
x

Hello Nicola,
just wanted to let you know that my mum (61 yrs) has secondaries in her backbone in quite a big way - also in her liver, lungs, bones : (
& she is not in pain.
I have been living with her for the last 5 months & it was the area that concerned the oncologists most when she was diagnosed in July. She gets back ache now & then & has Sopaldol (spelling?) which works.
If anything it is her lungs that limit her but she starts another chemo tomorrow so hopefully some relief coming (vinelrobine).
I hope you are both doing alright - secondaries is a really hard diagnosis but I have found life really does go on & you have a good time. My mum has been terrified at every step (and me!) but as she crosses each hurdle she has surprised herself that you can still crack a joke.
This website as you said is a good place (I am an internet junkie & it’s the best I’ve found). I ask Nurses & Drs a lot of questions but reading people’s experiences puts you in a different league of understanding. Thank you posters!!
I read my mum some of the things I come across & it helps her not feel alone or terrified of a passing symptom.

When you feel blue remember that you are probably the medicine that makes her feel best.
x