Member
Posts: 234
Registered: ‎30-03-2017

Re: Bone mets - please join in

Mrs timps, sorry you've had to join us but you will find this forum amazing. i can only tell you that when my scans are looked at and there is any progression at all my treatment is changed. Do you have a sympathetic gp or a breast nurse you can talk to?

big hugs

Ramade

Community Champion
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Registered: ‎01-05-2012

Re: Bone mets - please join in

Mrstimps, Some drs are more aggressive than others. They also go by how you feel. My oncologist will go and look at the scans herself if she isn't sure. If you aren't comfortable with this maybe a second opinion would be good. FF

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Registered: ‎02-05-2016

Re: Bone mets - please join in

Hi Ladies,
Myself and my mom read the forum alot, shes not confident on posting so i said i would for her. She has mets in her lungs and bones, been on letrozole for the last 2.5 years and her latest scan has shown some progression. What we cant get out heads round is her consultant isnt changing her treatment yet and scanning her again in 3 months. Has anyone else experienced this? We aren’t sure wether to push for another opinion or trust that the docs know what they are doing, any advice appreciated x
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Posts: 234
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Re: Bone mets - please join in

Hi Linda so pleased for you that is great news. last time we talked we had both started on e/e,didn't work for me but glad you had a fair time with it. i imagine taxol is chemo, i recognise the name as a heavy 6 month dose years ago after my primary.Hope things keep going in the right direction for you.

love and hugs

Ramade x

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Registered: ‎21-05-2014

Re: Bone mets - please join in

Yeyy fantastic news Linda!
Hugs Janette xx
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Re: Bone mets - please join in

Brilliant news Linda, so pleased for you.
Bon x
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Re: Bone mets - please join in

That's great news Linda! Very excited for you. Go celebrate! FF

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Registered: ‎06-08-2018

Re: Bone mets - please join in

Following a meeting wth the surgeon yesterday, it now seems that she would definitely like to do surgery in the New Year! Am currently gettng herceptin injections which are working very well, but she doesn't want to leave me undefended should I need to stop the herceptin for any reason. Surgeon and oncologist seem to have different opinions Smiley Frustrated

JWD
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Registered: ‎24-07-2018

Re: Bone mets - please join in

Great news Linda.🤗🤗
Community Champion
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Re: Bone mets - please join in

Wonderful news Linda. It makes the harsh SEs we have to put up with whilst on chemo all the more worth it doesn’t it? Thanks for sharing.

Nicky xx

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Posts: 505
Registered: ‎01-05-2012

Re: Bone mets - please join in

Hi everyone

Just thought I would post on the bone mets to let you know all know. Hospital rang yesterday regarding CT scan results. Liver tumour disappeared and bone is showing improvements. I am currently on weekly taxol. I have had 9 I down to havec12 in total.

I have not put much on here for a while with me being liver and bone mets now. Liver since last October.

Hope everyone is doing OK.

Linda

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Registered: ‎06-08-2018

Re: Bone mets - please join in

Thanks Nicky. That's very useful and also reassuring. From a 6cm tumour it has shrunk to where it's barely detectable so the chemo and subsequent herceptin seem to be working extremely well. Have to speak to the surgeon today who will likely give me the same answer. Its been great to read so many positive posts on here!
Community Champion
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Re: Bone mets - please join in

Hi Leigh

It is a lot to take in right now but we seem to learn and adjust along the way. In my own experience and after reading the experiences of many ladies on here over the years surgery is not given very often.

The reasoning behind this seems to be if you have a major operation, such as breast surgery, your immune system can be compromised which in turn can compromise your metastases. Most oncologists also like to have a reasonably time of stability, after initial treatment, to see how your particular BC, and SBC, reacts. If it is more aggressive they might not want to rock the boat so to speak. Their main aim is to prevent the mets spreading any further for as long as possible. By having chemo which will have been targeted to your type of BC it will have treated you systemically. Your original BC lump should have reacted to it as well. Also, from something that an oncologist said to me once, they can monitor the lump easier than bone mets etc which involve far more intrusive scans. My bone mets were found after a routine mammogram some 4-5 years after my primary. I had a local recurrence and was due a mastectomy but once the one mets were found it was straight into chemo nd then hormone treatments nd no surgery. I did ask over the years if I could have a biopsy or surgery and they said that on every CT scan I’d had there was no evidence of disease in the breast so it would have been pointless to have gone through surgery to have found nothing. By the way that was over 10 years ago and I’m still here! Over the years there’s been a lot of debate on this but there definitely doesn’t seem to be any pattern as to survival rates between those who didn’t have surgery for their primary (when they were diagnosed with secondaries at a similar time) to those that did, and very few (on the forum) have had the primary removed

Hope this helps or gives you some questions you may want to ask your oncologist.

Nicky x

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Re: Bone mets - please join in

Hi LeighL
I'm sorry you are having to join us. You're not stupid, there's such a lot to take in and you continue on a steep learning curve.
I don't have any experience of the question you are asking but if no-one else can help you I would talk to the BBC nurses who should be able to
Hugs Bon x
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Posts: 4
Registered: ‎06-08-2018

Re: Bone mets - please join in

Hi all, this is my first post so this is all new to me. Haven't read through all the posts and am a bit worried about sounding stupid! I was diagnosed in February and early on my oncologist had suspicions of a boney met in my sternum.  All along surgery had been discussed following initial chemotherapy.  However following chemotherapy there seems to be a turnaround where my onc. and the surgeon are both now thinking no surgery. Scans don't show any other secondaries bar the localised bone met. Any one else been in a similar situation and are wondering if it is best to get rid of the primary in the breast? Tks x

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Posts: 234
Registered: ‎30-03-2017

Re: Bone mets - please join in

Good luck Bon, thinking of you today and thanks for the info you've put on line, interesting.

ramade x

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Registered: ‎16-09-2018

Re: Bone mets - please join in

Hi Arem,

I’m sorry you find yourself here but we are all learning from each other n getting a lot of encouragement here. Take care and remember 1 step at a time.
JWD
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Posts: 195
Registered: ‎24-07-2018

Re: Bone mets - please join in

Hello Arem
Sorry that you find yourself on here but welcome..I'm sure you will find lots of friendly advice from the ladies on here. I'm sure there will be someone posting on here soon to help you.xxx
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Registered: ‎18-10-2018

Re: Bone mets - please join in

i am new diagnosed with metastatic breast cancer with bone mets. i am er positive her positive.
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Posts: 543
Registered: ‎15-04-2017

Re: Bone mets - please join in

Hi silver.
I’m doing well really. Apart from the pains which are not too bad, the flushes which are awful and the fatigue. 🙄
I get my first scan since starting treatment next month so will see if the side effects have been worth it.
I’m usually a sun seeker but have to admit I’m relieved the weather has cooled down. I’m sleeping much better without the unbearable heat.
It’s great that you have a pain consultant. I really hope they can help you. 🤞

Take care. Xxx