I have been getting treated for breast cancer for the past 18 months but just foun out on thursay it has gone to my spine the consultant said they think it must of already been there when I was first diagnosed.I am feeling pain walking and going to have a course of raiotherapy to help the pain, my treatment is to continue with my herceptin an tamoxifen and have been told only time will tell how long I may have but I need something clearer than this as my daughter is getting married next year and is wondering about bringing the wedding forward just incase.does anyone know what I can expect I would be really thankful for any advice
Posted on behalf of Terry
Kind regards
Lucy
Sizey, dont be scared lots of people here
XX
Dear Sizey
Welcome to the forums, I am sorry to read that you have recently been diagnosed with secondaries and just wanted to let you know of some of the support we can offer which may be helpful to you
We have a one hour secondary ‘Live chat’ on Tuesday evenings where you can ‘chat’ to others who are experiencing similar feelings and treatments so will have an understanding of any concerns you have. You are also welcome to contact our confidential helpline on 0808 800 6000 for a chat to one of our specialist nurses for one to one support, advice and information and a ‘listening ear’.
The following links will take you to booklets written by Breast Cancer Care which contain information about a secondary diagnosis, treatments and support available and one which is specifically about secondary bone cancer:
breastcancercare.org.uk/docs/sbc_sept_2007_web_final_0.pdf
breastcancercare.org.uk/docs/secondary_breast_cancer_in_the_bone_0.pdf
The helpline is open Mon-Fri 9am-5pm and Sat 9am-2pm.
Best wishes
Lucy
Sizey,
Many people live with bone mets for years, including spine mets. I take it there is no spread to vital organs such as liver or lungs?
That being the case, you probably have a good chance of being around for your daughter’s wedding.
You did not mention being on a bisphosphonate? These can be given by IV or orally. They all strengthen bones and relieve bone pain. Zometa even actively kills bone mets so is often given to those who have bad hotspots or considerable progression in the bones.
The reason oncologists don’t like to answer the question “How long had I got?” is because generally, they have no idea. Some last ages while others have rapid progression to vital organs and die fairly quickly. The evasive answers should not be intepreted as pessimism.
Holey
Hi Sizey,
Just to say I agree with everything Holey has told you - I have had BC for 18 years now and this is my 6th year with very extensive bone mets. I had radiotherapy to the more painful areas initially, and have been on bisphosphonates (pamidronate) for over 5 yrs now, and on herceptin for 4. I don’t need painkillers so long as i dont overdo anything. I would certainly talk to your oncologist and ask about bisphosphonates. More and more people today live reasonable well and long with ‘just’ bone mets. I too have a wedding to get excited about - our daughter gets married in 7 weeks now, but I do understand your anxiety about being there. I think I went through all those emotions when dx with secondaries but saw so many happy events I really didnt expect to. My OH & I became Senior Citizens (rofl), I celebrated of course my 60th birthday, our 40th Ruby wedding anniversary, and now our daughter’s forthcoming marriage.
I worry a little about Lucy recommending the LiveChat for Secondaries on Tuesday without warning you that there have been problems recently. The Moderators feel they have to restrict numbers in there and so the room is closed once they reach their set limit. If you get a notice saying the room is locked that is what has happened. (Unless of course they have decided to let us all in! and I havent spotted a post to that effect)
Dawnhc
Hi Sizey
I too have bone mets and was diagnosed in October after a bone scan. I like you had the problems before they found the lump from a mammogram. I had been to the doctors for the last year with pain in my pelvis and ribs and other places. The doctor sent me for physio which didnt help! They did not know about the bone cancer but I think I knew there was something wrong. I asked the question how long would I have and the consultant could not tell me. I think our bodies are all different and they cant give an exact date. I cant have chemo cos its gone too far. I am on tamoxifen and bisphosphonates. Ask about this. I gather that its expensive and so they don’t like to give it. My consultant said I was to have it on a regular basis but the nurse said I could only have it if it was helping me. So the answer was YES it is doing me good. You have to ask questions, and ask again. A friend told me you have to push and keep pushing for answers. I am not like that normally but when you have a terminal illness you have to do it if only for the sake of your husband and relatives.
I have found this website very helpful people are really good here. If you have a question they will answer if they can. Its good to chat to people who are in a similar position to you. Nobody knows how you feel but people her can emphasise with you.
AneAnne
Hi Sizey
I too was diagnosed 18 months ago but only joined this forum last week! I have bone secondaries and am on hormone therapy (not tamoxifen) and IV bisphosphonates.
I hope I can understand your concern and, even more, I hope you will be able to look BACK to a wonderful wedding in a year or so’s time!! Our condition is treatable, controllable… but I personally don’t like the word “terminal” because it doesn’t apply if there are still treatments available.
Just one comment - what does your daughter feel about this? If she is pushing to have the wedding brought forward you might want to do that for her sake, but that is a different issue.
This is the first time I have attempted to give “advice” to someone on this Forum so please balance it against everything else you receive by way of support and input. One of the most encouraging things said to me after my secondary diagnosis was by my breast cancer nurse, “many people can manage it like a chronic disease”. That helped me realise I could be more positive about my future.
Hi Sizey,
I was diagnosed in October last year with bone mets and feel reassured sometimes and then panicky at other times. I agree with holeybones about Dr’s not actually knowing how long we have as everyone and every cancer seems to behave differently. When I was diagnosed i asked about life expectancy and was told that it would be years not months and that a patient was being treated ten years after being diagnosed with bone mets. Then I might read something on here about someone being given 2 years… 5 years… to live and feel all sweaty and frightened.
Definitely ask about bisphosphonates as holeybones and dawnhc recommend. I am on bisphos (zometa) and hormonal treatment (zoladex & letrezole) and my oncologist is very pleased with how things are going. If he is pleased, I am pleased.
Also I like to think of myself as incurable but treatable at present rather thean terminal. It might be my way of dealing with the inevitable, I don’t know. I am a photographer and have just agreed to photograph a wedding in December 2010 which is also the year my husband turns 40 so definitely want to be around for both of those.
Lots of good wishes to you
Angee xx
thankyou everyone for all your answers I will certainly ask my specialist about bisphosphonates.,you have all been of great help
Mrs blue just to let you know I talked to my daughter about her wedding and I think she may really want to get married this year as my husband passed away suddenly six months before I was diagnosed and then my mum a week before my operation so I think it may be really important to her.
dawnhc thanks for your advice and hope you enjoy your daughters wedding
A long time yet I am sure Sizzey, my wife is in much the same boat so to speak, she had extensive radiotherapy to the spine and skull at Christmas, despite the side effects to the skin she is now feeling great and in no pain at all! She used to take morphine, and a whole host of other things to keep the pain at bay. I read somewhere that radiotherapy can be 80-85% successful, give it 3 months to get full effect. I have also read that mets do not usually like returning to the same spot so once zapped you should feel a lot better!
Best of luck for treatment.
Dave
Hello Sizey, I’m so sorry you have had so much other sadness as well as your diagnosis.
I was diagnosed, with involvement in spine too, in 2003. Although I’d probably been living with cancer for much longer as I was diagnosed by a fracture.
I feel very well and bisphosphonates have helped strengthen my bones with no side effects.
There’s much support here. Oh and I had a long time on Tamoxifen, it worked very well.
Hello Mrs Blue…I’m so sorry you have to join us but just wanted to add my bone mets have been controlled all this time by hormonal treatments, (no chemo yet) they have worked well.
Belinda…xx
Hi Sizey and Mrs Blue
I am sorry that you have both joined us but your are very welcome. I don’t have bone mets but I have the ‘dreaded’ organ mets (liver mets) but I am still here 5 years after diagnosis - so there is hope for both bone and organ mets. Sizey - I know that you are in a scary place at the moment but it looks as if you have a supportive family and that is important. Your treatment regime will settle down and, as the others have said, you will improve and start to feel well again. All the best for the wedding, whenever it is.
Blondie