secondary breast cancer in bone.

Hi Siobhanc,

Sorry to hear you were diagnosed so young and now also have bone secondaries. I was diagnosed at 37 with positive nodes also but thankfully, am clear of any further spread so far. I am a single mum to a 4 year old son so I can understand your heartbreak as you look at your young daughter and worry you will not be around to see her grow up.

What is the bone drug you mention called? Have they spoken to you about chemo for your bone mets yet? I visit several cancer support websites and people are saying that bone mets treatment has come a long way in recent years and people are achieving 'stable' status and living way beyond what was previously expected. I will try and list a couple of forums that might be helpful to you at the bottom of this post.

Have you ever had genetic testing done to see if you have a genetic mutation such as BrCa1 or BrCa2? I think you mentioned that your cousin has also been diagnosed? This, and the fact that you are so young would make me wonder if you are positive for one.

Regards,

Flo.

http://community.breastcancer.org/forum/8
http://www.whatnow.org.uk/forum
http://www.cancer.org/docroot/CRI/content/CRI_2_4_4X_Systemic_Treatment…

hi flo, siobhan here, thanks very much for your message. the bone drug is called zometa.. they not put me on it yet as bone dammage is not wide spread, it just one area, will not be on chemo for it either, thank god.. i;m on herceptin, as i tested possitive for her2..so that just doing same job a chemo, but not as harsh..it has been recommended i get tested for that gene, just waiting on word, there is a vast family history of breast cancer in my family, in last 7 years , its affected two first cousins, two aunts, my mams aunt( who was 96 at the time and mam cousin, who did not survive. i am the younest out of that group of 7.. i try very hard to be possitive, gp tried to reasure me that one ever died from bone mets,, but not easy to believe..then you have fear of it spreading to an organ,, fingers crossed that wont be the case..i am managing well, just love to get pain under control, so hopefully next batch of radio therapy will do the trick.. and waitin on appointment to see pain management team or pallitive care, scary words, so prefare to call it pain management.. thanks so much for the information you sent, will try them out.. would like to keep you posted on how i get on if that ok with you.. siobhanc

Hi Siobhan,

I wrote a long response to your last post and then found my session had timed out and it got lost!! Grr :-)

Would like to keep in touch. You can contact me at

flohoward at eircom dot net

if you would like to. Just remove the spaces and put in @ etc.

Take care,

Flo.

hi flo. thanks for responce.. will be in touch. when i hear any news.. take care. siobhanc.

Dear Siobhan

Thank you for your post.

The Irish Cancer Society is dedicated to improving the lives of those living with cancer and intends to develop services for women living with secondary breast cancer who currently do not have a support system to address their unique needs.

If you would like to take part in this focus group which takes place on the 8th of May at the Irish Cancer Society building , please contact the specialist nurses on 1800 30 90 40.

If you are unable to join the focus group, keep an eye on our website for further details on this group.

Best wishes

Breast Cancer Information Nurse

hi siobhan, so sorry to hear about you recent diagnosis. my story is similiar to yours.i was diagnosed with breast cancer 4 years ago. the cancer i had was her2 neg, oestrogen receptor positive. in feb last year i found out the cancer had spread to my bones also. im 28 years old and also have a little girl, shes 10 now. the cancer is in my spine in two areas and also my hip. i had to have surgery on my lumbar spine because the tumour had fractured my bone and they collapsed. i had steel rods inserted to rebuild my lower back followed by radiotherapy for pain relief. i started taking the bone strengthing drug zometa at that time and am still on it. i also take arimidex and zolodex. like you my biggest fear is it spreading to my organs. once it remains in the bone i can deal with it ( just about) the fear of what will happen to my daughter is the worst because i am a single parent and am all she has. but the reason i am writing to you is to let you know that a year has now passed, i am doing well, the cancer has not spread anywhere else since my inital scans last year and i am having ct scans every 3 months to monitor it. i returned to work in jan this year. pain wise it is under control with regular medication. i am feeling good and am trying to stay positive. so even though you hear that you have secondaries it really can be controlled so keep the chin up and focus on getting on with your life. you cant let it take over. i suppose its like any chronic illness. from time to time there will be a flare up and when that happens just deal with it in baby steps. will be thinking of you, take care from lucy

hi to lucy, thanks so much for your kind message, like oyu i have just started zometa yesterday, so hopefully it will help. also seeing pallitive care team, they checking to see if hip replacement op would be of any benefit to me.. glad to hear you are doingwell, its gives me some possitive feeling, something io have been lacking of late.. i look at my daughter aslo called lucy and i know how hard it is with children involved, but i have to say she my ray of sunshine and makes life worth living and fighting for.. take care and also wiil be thinking of you..keep up the good work, I,m sure your child is very proud of you, your a strong brave young woman.. take care