hello.

hello everyone, i was told 3 weeks ago now i have seconday cancer it has spread to my lliver lung, lymhps around my neck , breast bone and i have a mass on my chest wall but they don’t know what that is oh and i have a blood clot on the lung also so all in all july has been a crap month for me and my family, just everybody seems to be going on a go slow at the hospital.i have 2 young children and i feel the sooner the better to start treatment to try and push the bugger back xxxx claire

Good grief Claire I have just read your profile and you have been through so much. It does make me so cross when we have to tell doctors something is wrong and they just don’t listen. We do indeed know our bodies. May I ask if you are triple neg? and are they checking to see if with your secondaries you are her2+? I was surprised to read that with your recurrence in August 2012 you had no further treatment then. I think it is quite common in August for everything to slow down at hospitals with so many on holidaysl but that doesn’t help when you must want to see things moving at top speed! Are you any where near knowing even what treatment you are going to be on? I hope you can find a lot of support through the forums as you find others going through similar treatments. My secondaries are all in my bones. I was first diagnosed with bc in 1990 and had several recurrences and know what it is like to have to keep on keeping on at oncs when you know things are wrong! My cancer spread to my bones in 2002 and were very extensive from the start but with good treatment have remained reasonably stable over the years. My major problem the last couple of years has been pain that is quite hard to get under control. Do let us know how you get on.
Dawn
xx

Dear Claire

I am sorry to read of your diagnosis. You will find a lot of support on here from other members.

You can also talk things over with one of our Helpliners. They can offer you information and support. They are open from 9-5 on weekdays and 10-2 on Saturdays. The number is 0808 800 6000.

You may also find our Secondary resource pack useful. Here is the link:

http://www2.breastcancercare.org.uk/sites/default/files/secondaryresourcepack\_web.pdf

Very best wishes

Janet

BCC Moderator

Dear Claire,

Sorry to hear about your difficult news. I faced the diagnosis of secondaries last year- first my bones then my liver. It is a big shock and found it much mor difficult and harder than the initial shock of the cancer diagnosis.
Make sure you get the best treatment. I had to ask for second opinion and eventually I transferred my care.
Look after yourself. Once you have a treatment plan and your treatment it gets more mangeable. Never easy… But life is still good despite having to live with the monster.
Hugs
Valia
x

Hi Clare, I’m so sorry you have to join us and after reading Dawn’s reply I read your profile. It’s just dreadful to read you were not listened to sooner. I was diagnosed with secondaries ten years ago, in my early 40’s. I also had a blood clot to the lung and had 6 months of Warfarin alongside my first treatment, Tamoxifen. I’m sure there is a way of dealing with your clot and starting chemo, even on hormonal treatment my bloods were checked constantly while I was on Warfarin.
We are a friendly, supportive bunch. It’s such a big shock to be told you have secondaries. Be kind to yourself, we all find a way to move forward with our diagnosis, it takes a while but we all get there…Love Belinda…x

Morning Ladies, yesterday I was told I have secondaries in the bones in my back and pelvis, I am so devastated don’t really know what to do, was given between 2 and 3 years life expectancy, not sure how accurate that is. Will commence on Tamoxifen today and an injection to help the bones in due course. Xx

Hi Coco, so sorry about your diagnosis.
I was diagnosed with mets to my hip and spine 2 years ago. I had a hip replacement and 3 short blasts of radiotherapy - two to the hip and one to collapsing vertebra. I am on hormone therapy, examestane originally and now letrozole, and bone strengthening treatment (denosumab). There has been some progression which was why my hormone treatment was changed, and I have recently had more scans because my tumour markers were raised. I have had pain on and off during the two years but always controllable with painkillers. The radiotherapy has also helped with pain, and I am generally OK at the moment - just the occasional twinge in back or hip. I could work (if anyone would give me a part time teaching assistant job - I used to be a teacher).
When I speak to the doctors they say that there are more treatments out there for me as the present ones start to fail. So I feel as if I am just some of the way along the path we are walking, without any delusions about where I am going. I don’t know your exact circumstances but hopefully there are a range of possible treatments for you too.
There is a thread on here called ‘Bone mets - please join in’. You might like to browse it to get to know some of the ladies who post regularly. They are a great bunch, very encouraging and empathetic.
Best wishes to you too Claire.

All the best
Ruth

thankyou everyone for your kind words. yes dawnhc i am triple negative now it is strange as the first two recurrances was slighty ER+ i did not dream that cancer can change that much went for a bone scan today and got my wonderful gp into action last night to chase things up for me as i felt i was in limbo with onc appointments. thanks to him i had a phone call early this morning from my onc sectary to assure me things have been put in place before he goes away for hoiday. And coco i know how you feel but i hope as everyday passes things in my head get alittle better to cope with Today i even surprised myself i made a joke and started to laugh with the nurses. i was getting ready for my bone scan and the nurse said hopefully we can see what the mass is on your chest wall and i said knowing my luck my surgeon left a glove in there after my mx with 2 fingers sticking up to me it took them by surprise but we had to chuckle xxxxxxx claire

Hello ladies

This is really the first time that I have surfed the site properly as I didnt know which one to comment on…I was due to start radiotheraphy last week but due to having my CT planning session it seems an abnormality showed up… resulting in 2 phone calls for me to have an emergency and fuller CT scan done… which resulted in an 8am phone call from my oncologist on Monday requesting I go and see her straight away. It seems this abnormality is a new cancer on my chest wall ( which appeared halfway through my chemo sessions and I mentioned it to the oncologist and she said it was a blood blister!!! ) I have been in extreme pain in right shoulder and down my arm and right breast…so now its back to square one with biopsies to detect what cancer it is…but if chemo didnt work first time around its not going to work again with a different chemo is it?.. i have hit the floor emotionally and my family are devastated by the news…Ive never cried so much over the last week and feel numb and lost…also abnormalities have been detected in my liver but was told last round of chemo could have attacked it…i really do not know who to believe anymore… all I am hearing from the professionals is “sorry”… sorry isnt going to help me…Im just lost at the moment :-(((

Dear Sandra,
Big hugs. Such a hard time for you. I am sure, once your medical team knows more and a have a plan for you things will improve. It is very tough now. Take the love from your family and let it shooth your wonds. I have been there- lost and in despair. It’s a rollercoaster…
Don’t give up.
Valia
x

Sandra, what a nightmare for you, I followed some of your posts on the chemo in February thread as I was having chemo too. There is so much for you to take in emotionally at the moment and I can understand your despair but as Valia has said hang on in there, once you have the full results from the recent tests and biopsies your oncologist will be able to put together a treatment plan, at least then you will know what you are dealing with. There are lots of treatments and different chemos available so don’t think that another chemo won’t work for you.
Try to stay positive, let us know how you get on.
best wishes
Smartie x