Brachial plexus

Living with secondary breast cancer Supporting each other and sharing experiences
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Had breast cancer 1999 .Have been in remission 18 years , such a shock it has returned…On Ibrance and letrolezole

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Hi Hannah,

Just to let you know my original breast cancer was in 1995 and I was diagnosed with secondaries in 2015 with no problems in between.  I also was very shocked, but it seems that this can happen.  I am on Anastrozole and Denosumab and am doing well.  Best wishes,

Windflower

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Hi Windflower thanks for reply , really thought I had beaten it .So glad you are doing well .Am having pet scan on 30th , just hope for good results fingers crossed x

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Thank you for reply it gives me hope x

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Hello Hanna and Windflower,
I too was diagnosed 1999 and extensive bone mets discovered Dec 2014. Been stable on Exemestane just awaiting new MRI and CT results. It’s such a shock after all those years. Are you both bone mets only?

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Hi Mermaid mine has come back in brachial plexus , which is just under collar bone .Also I have a few areas on chest wall .So it’s wrapped itself around nerves on brachial So inoperable.just Hoping these drugs can help

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Hi Mermaid , it’s good that medication is working really well for you .I started to feel pain in my upper arm last December.I knew something wasn’t right , but never thought cancer had returned. It took until May for it to be found .Apparently very unusual place .I am hoping that scan on 30th will indicate drugs are working

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Whoops the reply was meant. For windflower.

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hi all, i am so pleased to read this thread because i have secondaries in brachial plexus. i keep having mri’s because apparently the ct’s don’t show the spread in the soft tissue very well. i have been on a lot of different treatments, having a struggle to hold it back with me at the moment. 

love and hugs to you all

Ramade

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Hi Ramade Havnt come across many people with secondaries in brachial plexus. It took 6 months to find mine ,as you said scans miss it .Was devastated to find cancer had returned after 18 years ,but now on treatment, had a scan 2 weeks ago , results were promising, so am coping a bit better now ?

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Ramade Good Luck with your treatment and scans too

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Thanks Hannah. MRI showed same spread but because it is deep in the chest and neck he said it is difficult to see. on Tamoxifen now as i have never had it before. Been through several gruelling chemo’s and other treatments so i feel glad to have a bit of respite. Also quite extensive in bones. Hope you have a good appointment, am thinking of you.

Ramade xx

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Hi Ramade , Have also had the chemo radiotherapy,and have been on tamoxifen too. Where I’m at now , cancer still in plexus, on chest wall ,plus there is a tumour on sacrum .They don’t seem too concerned with sacrum , as no hot spots showed up on it .But am waiting for appointment to get it checked out .It took hospital, quite a while to find cancer in plexus, as it is unusual apparently. Apart from mouth ulcers and fatigue, am ok .You will be fine on Tamoxifen,I didn’t have side effects,what I can remember .Will keep taking the tablets and keep you posted, will look out for posts on your progress too ?

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Hi Ramade , am glad Ure not in so much pain now , I was exactly the same , just couldn’t sleep at night .Pain was in shoulder and shoulder blade , and all down arm .Its not so bad now , still waiting for scan on sacrum can u believe.My next pet scan isn’t until February, unless tumour markers go up considerably.My next appointment is on 25th if this month .Try not to worry Ramade , I know it’s hard ,but there are so many lovely and supportive people on this site , it really helps . Please let me know how your scan goes , will be keeping fingers crossed for you .?

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Dear Hannah22,

 

Hope you are doing fine.

I would like know more about why secondary at Brachial plexus is inoperable.

 

My wife cancer came back less than a year after treatment for stage 2B breast cancer at the left breast and nymph node. Now it has spread to left lung (1cm) and i heard there is quite a few at Brachial Plexus on the left. I’m currently not sure if it is operatable or not. Just want to get more insight on this condition before i suggest my in-law to get her to another doctor for 2nd opinion as she is in pain almost every night…

 

I not too aware of the lastest condition is also due to communication issue as she is a south korean and i am a singaporean. She also doesnt like to talk about her condition to me and my in-laws doesnt speak english.

 

Thanks in advance.

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Hello Providence, i hope it’s ok with you if i reply as i have cancer in the brachial plexus like H annah. There are not many of us. I have widespread cancer in bones aswell and a spread from the top spine across to shoulder where there is a big lump and right across chest.

We did ask about getting the lump removed but were told that there are whole bundles of nerves in the brachial plexus and it would be impossible.

However your wifw’s pain should be treated, i have a lot of pain killers because nerve pain is dreadful.

Hope this helps.

best wishes

Ramade

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Hi Ramade , we both replied at same time to Providencez .So that’s 3 of us now , with brachial plexus cancer .How are you doing , any appointments coming up .I have appointment Friday, checking out spinal tumour, been waiting awhile for this one .Am trying to remain positive, hopefully you can get on a trial , or different drugs .Keep Well xx

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hi Hannah,good luck on Friday i will be thinking of you. My mri is next Wednesday but unfortunately the pain has spread up my neck so they’ve brought the scan forward. doesn’t look like tamoxifen has worked at the moment. never been on ibrance, i’m told it’s not available for me on nhs.

ramade x

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Maybe you can get on a trial for Ibrance, good luck for Wednesday,will let u know how I get on Friday .Have you been on letrozole , you probably have told me .Cant remember anything these days ?

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Hi Saw consultant last week about spinal tumour, apparently it’s very large , and has to be removed, I have to have another scan to see if it’s cancer , either way it’s coming out .its on my sacrum.Dreading operation, I may have to stop cancer treatment, for a short time , which worries me My white cell count has to be normal , so that’s why .Am beginning to think , I may have faulty gene , as my son was born with a tumour on sacrum.So that’s being looked into .So feeling a little down today , just seems more bad news at the moment