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Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

24 REPLIES 24
StickiVicki
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

Great to have a bit more local knowledge Thumbie, thanks.

Thumbie
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

At the Haven in Hereford you can get 10 sessions of complementary therapy free of charge after an initial assessment. They run introduction days where you can find out about what they offer (typically some group sessions such as tai chi and some one to one such as shiatsu). You may not need to go all the way to Hereford for the introduction day, they sometimes do those in Birmingham. Information on their website.

You could also ask about Freshwinds Centre for Integrative Medicine, which is based in Selly Oak. They offer support for people with chronic, life-limiting and life-threatening illness. Again an initial assessment and various complementary therapies. I think you might need a referral from your doctor or BCN for that one. It's all free.

StickiVicki
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

see this link for Breast Cancer support groups in your area, but please check first if they are prepared to support someone with Metastatic Breast Cancer.  Some groups really are only for Early Stage BC and are not MBC friendly.  http://www.birminghamcancer.nhs.uk/patients/support-groups%20%20/breast-support

 

There is a Haven near you in Hereford (formerly the Breast Cancer Haven) which does have a MBC Support group and the next meeting is on 11 Oct, or the second Friday of the month, call reception on 01432 361061 if you would like to attend and there is also a booking form you can download, though that may be more for one off events.  They don't charge for support group meetings, but they seem to charge £5 - £7 for other things like Tai Chi and Meditation.

http://www.thehaven.org.uk/how-we-can-help-you/whats-calendar/2013-10/secondary-breast-cancer-suppor...

 

The Penny Brohn Cancer Care centre is just outside Bristol http://www.pennybrohncancercare.org/ and they do day and residential courses which are now free of charge.  Check them out if you think an Integrated Holistic approach would be of help to you.  Penny Brohn did die of Breast Cancer (they deal with all forms of cancer), but she did so 20 years after being told to go home and get her things in order.  http://www.pennybrohncancercare.org/who-was-penny-brohn

 

Vicki xxx

 

 

StickiVicki
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

Sounds typical ...

 

The huge lump disappearing sounds like good news.  Have they done a CT / MRI or bone scan because at the moment their diagnosis sounds a bit garbled to say the least.  The trouble is they are very reluctant to actually tell you what is going on ... that is fine if you don't want to know, but rubbish if you do.  I like to know, my self.

 

I was told I had six months to live in January 2008.  Still here, though I think I may be getting some progression of my bone mets, or it could be arthritis which is the family curse.  Like I say, they don't like to tell you what is going on which I find frustrating.

 

From experience I would say make sure you get the results of any test or X-ray, or if you don't want to know, that they have received the reports. 

 

Have you been told the status of your cancer?  Oestrogen + or -, Progesterone positive or negative, HER2 + or -, a combination or none, ie Triple Negative.  If you know that it will be easier for you to make an informed decision.  I am Oestrogen + HER2+ and Progesterone - and it seems to be very Oestrogen sensitive, or that is what the onc thinks because I have done so well on hormonal treatment over 5 years and 8 months.  I did research however and have cut certain things out of my diet, which I have been slipping up on recently hence the possible progression.  Some people are happy with only conventional treatment, chemo etc, but I have taken an Integrated approach with acupuncture, reflexology, Chinese Herbal Medicine, supplements etc.  You need to do what feels right to you and I would never say you should do the same as me.

 

I work part time though less hours than I was a couple of years ago, but that is partly because my employer had a review of my area and got rid of some jobs and the only one I felt I could apply for was with 30% less hours and less pay.  On the bright side I don't earn enough to pay Income Tax Woman LOL

 

Vicki xxx

Guest user
Not applicable

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

Thanks ladies

 

I am from Birmingham... and until 3 weeks ago I was about to start RADS when I showed my oncologist a big lump that had appeared halfway through chemo... she told me it was a blood blister.. so trusting the professional like  you do... I was referred by locum surgeon for urgent CT biopsy.. and it seems 1 lymph node got through...apparantl!!y it is now "controllable" because she also told me I had liver mets.. which I havent... so going from good to bad to worse news in 3 days didnt do much for me....informed my kids Im on a timescale...and not to tell me etc...due to see her 14th Oct..I am now having a new chemo.... gem carbo... the huge lump has dissapeared ..good or bad im not sure

 

Just felt lost these following weeks...tried to boost myself reading inspirational stories cos Im sure as hell not ready to go anywere yet

Julesie
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

Hi Sandra

Sorry to read your news but I hope you will find some comfort from many of the positive stories on the various threads in the secondary section. It's horribly frightening when you are first diagnosed with mets but the ladies on this forum are very supportive. Xx
belinda
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

I'm sorry to read your news Sandra but do keep in touch. We have a wealth of experience and information between us here.

I was diagnosed stage 4 from the very beginning but this was ten years ago. Take care, it is such a shock to deal with at first.

Lucy_BCC
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

Dear Sandra
Please do call our helpliners for more support if you feel able, lines are open 9-5 during the week and 10-2 Saturdays on 0808 800 6000
Take care
Lucy BCC

StickiVicki
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

Where abouts do you live, approximately if you don't want to give an exact location ... or the hospital where you are being treated?

 

Where are you mets?

 

Vicki xxx

Guest user
Not applicable

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

Seems I now belong to this thread... dx with secondary 3 weeks ago...where to start or go to?

beanbob
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

Metastatic is better term than Secondary. The M word tells everyone it has spread. Secondary tells you nothing. It's can also be misunderstood out there as the second time you got BC or somehow less serious.

Good thread here.
StickiVicki
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

You can start a new thread if you like but I don't think what you are saying is 'off-topic' Belinda.

 

The layout here doesn't help and the fact that you have to read up the page, instead of following the thread down is strange as well.  It doesn't allow the conversation to flow, or make it feel like a letter that we are all contributing to.

 

As WeePixie says, using the term Metastatic Breast Cancer is in itself educational and raising awareness.  Most people don't understand the word Metastatic, and many just assume that if you haven't surcombed to cancer in a couple of months, or you don't look emaciated and have hair that it is done with and everything will be ok.  This message is being reinforce and encouraged by the whole Survivor thing.  Using the word secondary means that it goes unnoticed and doesn't make anyone think what it is that we are actually talking about.

 

I do realise BCC that you can't please all of the people all of the time, but please try to look at it from our point of view.  How many of those who work at BCC have Metastatic Breast Cancer themselves?  I would like to leave a legacy for those who will sadly follow me, and I don't want it to be one of exclusion and ignorance.  Globally over 400,000 people will die this year of breast cancer.  People I have spoken to have been genuinely shocked when they find out how little is done to fund research and support those with MBC. 

 

Sorry it is late and I am very tired.  I'm having a bad time at work at the moment and I just can't think any more today ... but tomorrow is promised to no one ... Vicki xxx

belinda
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

I don't use twitter or facebook but I hope BCC have noticed we have suddenly lost a huge number of mets ladies who used to post here. I was part of a group which broke away and used the site less in 2005. We were all stage 4 and sadly there's only 4 others left now. But something is amiss here as people do set up groups. Sorry I'm straying away from the original post Vicki but would it help if we had a private forum here?  Hi Lucinda is the site being set up on Facebook or Twitter?

 I can't really put my finger on why it's not working here but the new look boxes layout isn't helping, in my opinion.

I feel a little removed from everyone..anyone else? Vicki shall I shut up and start a new thread on this? Smiley Happy

I can soon do so..x

Guest user
Not applicable

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

I prefer to say I have metastatic breast cancer. I'm not comfortable with the term 'secondary' and even if people don't know the meaning of 'metastatic' at least they might ask or look it up and learn something. The ignorance surrounding metastatic BC is shocking and the whole pink=survivor thing really doesn't help us.  There is far too much emphasis on 'fighting' and 'beating' cancer and not enough on what it's like to live with it.

Just the other day a nurse at my GP practice (who knows me well and has been dressing my rads burns for many weeks) said to me how nice it must be that my treatment was over now and the cancer was gone  Smiley Frustrated I have a work colleague who asks me every time I see her if I am in remission yet! I could go on and on. I feel that the majority of people have no concept of cancer that is not curable and that for us there is never an end to it (well apart from the obvious). BCC should educate and try to fairly represent people with all types of breast cancer. 

StickiVicki
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

Great to hear that BCC is taking an interest.  Anything you would like to contribute?

HelenL_BCC
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

Dear all

 

Just to acknowledge that we are reading and following the thread with interest.

 

Best wishes

Helen

geordiex
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

I think people just find it easier to get thier tongue around secondary cancer or stage to be honest it all means the same in the end xx

StickiVicki
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

Note the silence from BCC!

mrsblue
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

There is already a website, bcpals , with publicly viewable information pages written by women with bc, about many aspects of bc including metastatic and high-risk genes.  (The forum is private.)

 

Most of us want advice, especially when first diagnosed. 

Some of us are aware that our treatment options are now becoming fewer, despite much research, because of the wrong priorities of those in the UK who hold the NHS purse-strings.  We need a public group (possibly a new charity) to lobby Parliament etc.etc.

All of us need support at times - and we are keen to offer support to others undergoing treatment and everything else that is part of our ongoing cancer journey. 

All of us with mets have a shorter life expectancy than we would have had otherwise.... in our wiser moments we want to live life well, while it remains.

 

If the Facebook group(s) succeed in making more people in the UK aware of metastatic bc, this will help.

MaraUk
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

Hi would love to more about the site
Thanks Mara
Julesie
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

Hi Lucinda. Sounds great. Please send a pm when you know more. X
lucinda
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

Hi Juelsie

A group of secondary ladies are currently putting together a site for secondary ladies where people can go for advice( non medical) and help from ladies with the same dx. I don't think it is quite ready to go live but I will try to see how far forward things are. I will pm you with any news I can find.

 

L xx

Julesie
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

Hi Vicki

I definitely agree that Metastatic breast cancer doesn't get the focus it deserves, either from the main cancer charities or the press. There are a lot of knowIedgeable, well-informed people on this site and I wonder whether there is an opportunity to form a separate group who could pool resources and campaign for more awareness and focus on MBC, and tackle some of the really important issues like access to drugs etc etc. Any thoughts?
mrsblue
Member

Re: Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

Hi Vicki,

 

Good ideas!  -though I'm not sure if people in UK understand "Stage 4" - they would probably understand "advanced" and "incurable" - but do we want to be tagged by either of these labels?

 

I like the idea of a day outside Pink October (I would say "I'll second that", LOL!) A quick google tells me that on 4 April, Martin Luther King was assassinated... and it's the International Day for Landmine Awareness and Assistance... otherwise I've not spotted any major clashes. 

(And my mother died on 4 April, of cancer, but not breast cancer.)

StickiVicki
Member

Secondary Breast Cancer? Second to none, it is METASTATIC breast cancer

BCC insists on using the term 'secondary' breast cancer as though we come in second place to PRIMARY breast cancer.   A survey in the UK showed the 77% of those who responded had no idea that Metastatic, or Advanced, Breast Cancer cannot be cured http://www.medicalnewstoday.com/releases/262209.php

 

So what is BCC and other breast cancer charities in the UK doing about making us the focus of research and support?  I really am not sure.  MBC information is tucked away on the website and if you click on the Secondary Spotlight link you seem to go through to a separate site.  There are evidently about 30,500 people living with MBC in the UK so why are we covered in a cloak of Pink?  Why does MBC only get one day during BC Awareness Month?  And to add insult to injury they chose the 13th of the month which is associated with bad luck (and I can say this having been born on the 13th of a month).

 

So BCC how about campaigning for 4.4.2014 to be a Stage IV, Metastatic Breast Cancer day, just as the Triple Negative groups in the US are establishing the 3rd of the 3rd as TNBC day. 

 

Since we are lost in Pinktober, how about our own day right away from the whole Breast Cancer = Survivor thing?