Just want to say hello and join your community

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Hello everyone.

 

I am very new to this site. I apologise if this is not the right place to post but there is so much information, groups and things to click on I am a bit overwhelmed.

 

I was diagnosed with breast cancer on 22nd May and was told it was totally treatable and all was positive then on 22 June was told it had spread to my liver. Devastated, shocked, unbelieving are just some of the reactions as I am sure all of you will know.

 

I am 41 and have two children, 6 and 2, who are my world and I am finding it hard to get my head around all that is happening.

 

I had my PICC line fitted today and am due to start docitaxel and herceptin on Friday. In many ways I am glad to get started to feel that I am doing something active to fight this rather than sitting around waiting for tests, results and clinics. However, the fear of the unknown is weighing on me. I know that once I get the first session under my belt I will feel mentally better but it feels like a mammoth task.

 

I have read some of the posts on here and am amazed at how supportive it is I hope to be able to use this forum to educate myself and gain the strength I will need to carry on.

 

Thank you.

 

 

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Hi Lynne and welcome to the last place I know you want to be but you will find a huge support network here amongst the various threads and many ladies in the same situation as you, I’m so sorry to hear your diagnosis Isn’t quite as you had initially believed but there are so many treatments available now and you will be well looked after, feel free to post where ever you please but there is a secondary cancer section where you will find some lovely ladies many many years past diagnosis living life to the full and having some fun on the forum which I’m sure will give you the lift you need right now Xx Jo 

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Lynnmcp.welcome to this surreal world .you will be able to read many positive things on here.the bone Mets section is used a lot by us…i have it in my liver bones and peritoneal area.
.the chemo is very daunting but as you said a positive move…i used the I’ve cap with docetaxol and didn’t lose my hair and side effects were doable just take any offers of help with shopping etc.because of tiredness…check all the sites out and gather information…all the best Sharon.:heart: x

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Hi Lynne I am so sorry that you got dealt the double whammy of secondary breast cancer.  I too got diagnosed with breast cancer on 6th May then secondary breast cancer to the bones on 13th May.  I felt like my whole world had collapsed.  I hadn’t had any symptoms.  I just went for my first ever routine mammogram and got hit with all this.  I have two children too.  It sounds like that I have got a treatment plan quickly worked out for you.  I had to wait what seemed like ages to get started.  You are obviously on chemo whereas I am on hormone treatment at the moment.  If you’d like to talk I would be very happy to do so.  But please keep strong, easier said than done sometimes I know only too well, but strong means to fight this wretched condition (I say condition because I will not refer to it as a disease).  It will not win and we will do all we can to fight it.  Love Debbie xx

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Hello Lynne
Your story sounds identical to mine . Diagnosed November 2013 . All seemed really positive , was told I was young fit and healthy and didn’t they didn’t see any reason why I shouldn’t get through it ! Then secondary diagnosis in January 2014
liver and bone .
I was devastated . But once you get your treatment plan in place it does get easier . Two and a half years down the line , I’m basically living the life I had before , if a little tired .
I haven’t had chemo yet I’m on my second hormone now - letrozole . I have zolodex / zometa monthly .
Be kind to yourself it will get easier. I never thought I would ever be able to say cancer is not the first thing I think about when I wake up each day .
X

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Hi Lynne

I am in a very similar situation to you, in that I was diagnosed with primary bc at end of March, and secondary in bones about 6 weeks later.  All terribly frightening, overwhelming and unbelievable.  I found this website and forum a couple of weeks ago and felt, immediately, that it was going to be a lifeline for me. There is so much good advice and support, from ladies who are going through the same thing - it feels a very lonely place being dx with secondaries, but somehow the many postings on here give you hope and strength to get through it.  

I would say, tho, that I am now 6 weeks on from secondary dx, and am feeling much calmer than I did during the first 2 or 3 weeks.  I try to ‘live in the moment’ and not think too far ahead - although easier said than done a lot of the time.  If you get a chance read up a little on the practise of Mindfulness - it’s been helping me.

Take care of yourself, be kind to yourself and good luck with everything.

Louise xx

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I would like to say hallo and join in. I had primary BC 7 years ago and knew lots of women who were still well years after treatment so thought I was one of them. But last summer, a few months after my breast surgeon said ‘You’re cured!’ bone irregularities were picked up during an investigation for something else. I have bone mets in my pelvis and something which may be SBC or may be menigioma in my skull and a tumour near my brain stem. I’m on exemestane which causes joint pain, fatigue, dizziness and insomnia. Sometimes I feel fine, other times not so good. I’m having an MRI scan on my head on Thursday to see if the tumour has grown and another bone scan next month. Today was a good day so I went swimming in the sea for the first time this year. I don’t feel cheated because I will be 70 quite soon so every day will be a bonus but I do worry about  what the days will bring.

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Hiya and welcome.
We all think we have beaten this thing …I went eleven years before the little tikes came back .
It’s all the waiting around for results that is the nightmare …once treatment is in place …you will b able to focus.
Feel free to post here …rant and rave …we all know how it feels .
Hugs xx

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Hello I was diagnosed with breast cancer last April had chemo mastectomy and radio in July this year it has come back to my bones, I am 47 years old with a lovely family if I can help in any way give me a shout, try to stay positive having the c dies not mean we won’t still be here in 10 years

Karen xx

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Hi Karen, sorry you find yourself here but welcome, I too was told I had bone mets (amongst others) and it was a joy to read your message. Please keep posting and let us know how you’re doing.xx

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Hi Karen, lovely to hear from you.  Glad you have a great family around you.

 

i have had bone mets for about three years to my knowledge, and am having Zometa for that.

 

good luck with everything. Keep posting, we love to hear from you,

Moijanxx

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Hi everyone

Wow I can’t believe how better I feel reading your messages and knowing I not on my own going through this journey, my McMillan nurse visited yesterday and could not believe the difference in me in just one week said I was like a different lady

So from the bottom of my heart thankyou I will be on here very often as it gives me so much reassurance

Lots love and hugs to you all

Karen xxccc

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Welcome Lynne and Karen

 Sorry you have had to join us but you will find lots of friends on here you will find most of us on the bone thread where alot of ladies like yourselves are in the same position. Also a lot of joyful banter to take your mind off the serious bits but lots of good advice see you there 

Love and ((((hugs))))  xxx

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Press Release from MET UP UK:

A new advocacy group is being set up to lobby for a better deal for people living with secondary breast cancer, a terminal disease that is responsible for around 12,000 deaths in the UK every year.

Headlines about the increase in breast cancer survival are common these days, thanks to earlier diagnosis and better treatments. Women know and recognise the need to get breast changes checked quickly and more and more women are living for longer after being treated for primary breast cancer.

But while primary or early-stage breast cancer is curable, secondary breast cancer is not. Secondary breast cancer occurs when the breast cancer cells spread from the first (primary) cancer in the breast through the lymphatic or blood system to other parts of the body(1). Those who survive their initial diagnosis of primary breast cancer live under the shadow of  it returning. The risk of recurrence can be lifelong.

In the UK, only 15 out of 100 women (15%) are alive five years after they are diagnosed with secondary breast cancer(2). Median survival for secondary breast cancer in developed countries is an estimated two to three years(3).

While we acknowledge the successes in the area of primary breast cancer, the time has come to take things forward. Education and awareness need to expand and focus on secondary breast cancer. UK charities are doing a good job in trying to raise awareness but more needs to be done. We want to push faster and harder for change.

Time is precious. Every minute of every hour counts. We need more research and better treatments. We don’t even have accurate data on how many people are living with secondary breast cancer in the UK. We do know that in the UK alone around 12,000 people a year die from this disease – 11,643 women and 73 men in 2012(4). One thousand families a month are affected and their lives will never be the same through losing a loved one. Some 1,430 worldwide die every single day.

This is shocking. It needs to STOP. Help us work towards this goal.

The Inspiration for MET UP UK

American breast cancer activists frustrated at the lack of progress on secondary breast cancer created MET UP in the US in April 2015. MET UP (www.metup.org) are active on social media and made connections with UK-based breast cancer advocates. As a result of this relationship and with the support of MET UP, UK breast cancer advocate Jo Taylor decided to create MET UP UK. Jo, a 47-year old mother of two, lobbies for progress on secondary breast cancer and lives with the disease herself. Read more about Jo’s work on www.abcdiagnosis.co.uk, including her lobbying of parliament.

Secondary breast cancer can also be called metastatic (hence MET UP), advanced, late-stage or Stage IV.

MET UP UK’s objectives are to:

  • Educate and inform
  • Raise the profile of metastatic breast cancer nationally
  • Question where money raised through fundraising goes
  • Improve long term survival
  • Ensure everyone counts #datasaveslives

Sources

 

Contact: metupuk@abcdiagnosis.co.uk

Follow us on FB https://www.facebook.com/METUPUK/

Twitter @metupukorg

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I’m sure that your post is designed to galvanise some action but I’m sorry, I just feel angry at your insensitivity. Do you honestly think that the many ladies on this forum don’t know what it means to live with secondary breast cancer? Do we need statistics when every day is a struggle to keep positive and enjoying life? Do you assume that we do not know the facts and that they must be pointed out in a patronising way?

 

I don’t even think that your facts about there being no new treatment in the last 10 years is correct. There are many new types of treatment being trialled- kinase inhibitors, parp inhibitors, many types of immunotherapy, new drug combinations. These trials are still ongoing but I feel that real progress is being made, even in the last three years (my son is a cancer researcher) It is only through research that cancer will be beaten, maybe not in my lifetime but I firmly believe, in the next 30 years.

 

I hope that your post is viewed more positively by others.

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Hi

I completely agree and feel the message is a little insensitive,I am more than aware that I can not be cured but telling me that only 15 out of 100 people will die causes me great upset, I was only diagnosed in July with sbc and had just started to believe that I will be here for many more years and new medications are being developed and I need to know that to keep me going

Feel quite low now

Karen xxx

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Well said ladies.
We all know the challenges we are facing and I felt quite depressed reading this posting especially as a lot of you know I try to keep morale high with my postings .
Carolyn xxx

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Thank you carrot juice …at least I have one person that doesn’t think I’m a complete numpty !!!
Welcome …we like our ladies to post and join in …not lurk so stay with us …even go on the private forum and join in the word games ( my brain exercise every morning with my coffee) gardening club etc etc.
Carolyn xxxxx

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Hi Pleasant,
I fully appreciate the need for campaigning for more research for SBC. I’m sure many of us in the forum would be interested. However, your bedside manner is awful.
I agree with Stillhere,I’m afraid you seem to take us for simpletons. We know what secondary cancer is. We don’t need to be reminded of the realities of the disease as we have have seen plenty of our friends die of the disease. The truth is we are just ordinary people who have been dealt a very bad hand just trying to get by. Of course we all hope we’ll be one of the lucky ones who survives more than 5 years. What is wrong with that? We all need hope. That is a basic human need. I try not to spend every minute of the day reminding myself that I have a disease that’s going to kill me. If I did I might as well just stay in bed and wait for the end.

Why couldn’t you just say 12000 people die of this disease every year, lets do something about it instead of saying, as you have, stop kidding yourself - most of you are going to dead in 2 years.
Can I ask if you have secondary breast cancer?
Waffles

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Wow that was a harsh post to read! I don’t have secondaries but pop in and out of the thread and it’s lovely to see so many strong positive ladies supporting each other and have a good laugh along the way, you have to have hope and carry on believing you will be ok for a long while yet and it’s so important for newbies coming along to be able to see that, posts like this are of no help however well intended, you can be angry and bitter about the hand you have been dealt or you can make the most of every day! I hope this hasn’t unsettled your lovely little group too much Xx Jo