I have recently been diagnosed with secondaries in my spine,hips and liver. My initital diagnosis was June 2006 so i was almost 5yrs.I have had back pain for a yr and was made to feel I was making a fuss by my GP so didn’t pursue conclusive tests.
I am struggling to take it all in, this is a fight I was pretty sure I had won.I have read some posts from other ladies who are living with similar levels of disease who seem to be living quite well. I have found these very comforting.
I have a 6 yr old daughter and am pretending that everything is normal and its not, I cannot begin to think about how to talk to her about this all.
I start radiotherapy next week and then chemo after that.
I would love to hear from anyone who is in the same place as me or who can offer any words of advice or just words!!
Hello dickle, I’m so sorry to hear you’ve been recently diagnosed with mets. Please don’t feel you somehow lost the fight. It can take a while to get your head around a secondary diagnosis…it’s a shock, be kind to yourself, take your time to adjust. I had bad days, many at first, I just went with the flow, you will get to the other side. And somehow you will find your own way of living with secondaries…it’s a new ‘normal’ and we all get there.
I know many who have had great responses to chemo, for liver and bone secondaries. I was diagnosed stage 4 from the start. My hip spontaneously fractured 8 years ago when I was in my early 40’s. I had a hip replacement and I’m here and feeling well thanks to various treatments.
This is a very supportive place and while I’m a Mum too my daughter has grown but others here have children younger and around the same age as your daughter…You take care, good luck and love, Belinda…xx
Thanks Belinda, it really helps to hear from people who are living with all this. I have been for my measuring for radiotherapy to my spine and hip which begins next week. I remember last time how much better I felt once the treatment had actually started so I am hoping that the same is true this time.
I seem to be going from one extreme to the other- up and down. Its a huge adjustment to make I don’t feel like I can make plans at the moment. I will get there its just tough, but everyone here knows that!
I was wondering if anyone had had experience of radiotherapy to their spine and if there were any side effects? How soon did the pain ease? I am having 5 days worth starting Monday.
I went nearly 11 years before mets so know what you mean about thinking you’d beaten it! It really is a huge blow and it will take time to get used to it, but you will find a way through. I’m now just over a year from dx and am in a much better place, thanks to this site and the wonderful women here.
My mets are bones, mainly ribs and spine. I had 5 days rads at the beginning, didn’t notice too much in terms of side effects, got a bit dry itchy and sensitive to the area but used lots of cream, also felt quite tired but not too bad.The pain actually got a bit worse initially but I think that is normal but about 6 weeks later I noticed a real improvement.
Hope all goes well for you, with every good wish, Julie x
Hi and I hope your radiotherapy is as successful as mine was last year. I have mets in spine liver and just diagnosed one in lung and am on chemo at the moment. My primary was 5 years ago but disease has been spreading since a year post diagnosis. I had five days radiotherapy for mets in base of spine this time last year and the relief from pain was very very quick, no side effects except one week post when I felt nauseous and dizzy and tired. Only lasted 1-2 days. Had radiotherapy (1 large dose) in Nov as new spot in thorax and again 1 week post, experienced the same - Now half way through FEC but can only have the EC cos of my liver, but again the pain in my spine has gone. Hope all goes well next week D
Thanks ladies, silly question but is your skin on your front or back effected? I presume they treat the spine from the front as thats where my tattoo is?
D x
I was lucky and didn’t get any itching or soreness. The tattoo is on your front and they line it up then they get the machine to swing round under you to give the dose
i had radiotherapy to my spine in Feb 2011 because the vertebra
had collapsed and was touching spinal cord.
they used the same tatoos they had used when I had primary treatment 5 years previously and which were on my front, but the radiotherapy was actually given from behind. It was the skin over both the entry and exit points which was slightly affected…my back became a little red and itchy and rough,this settled after a few days. Over the front I looked a little “sunburnt”. Hope this helps
pam
Sorry to hear your troubles. I was diagnosed this week with spine mets from a Rt side primary 11 years ago. Also just diagnosed with a new primary in Lt breast. The secondaries were a huge shock and I am still feeling numb and scared senseless. Not sure how they are going to treat it all but will find out next week.
I have 4 teenagers who are very understanding but don’t know the whole picture. I find it realy hard to tell people as they get so upset and I just hate to make them feel bad.
The info on radiotherapy has been realy helpfull.
hi dickie its such a shock when you get secondaries diagnosis,i had b/c 18yrs ago ,then had secondaries in lungs and liver 2 yrs ago ,wasb ab big shock to get secondaries 16ys after original,but i got through it ,lung and liver both well shrunk ,having a fab life.Then last wed had a seizure ,turns out lil buggers are in my brain now !! start radiotheraphy next wed ,here we go again!! But while they give me treatment ,i`lll get positive head on and fight it ,cos whats the alternative??gud luck dive deep within inside you ,luv Barb xxx
I don’t have bone mets, but was diagnosed with muliple liver mets in Jan 2010 - 2.5 years after primary diagnosis. The news was a crushing blow, especially since I had an excellent prognosis following my primary. I was very ill at the time, didn’t know if I’d make it to Easter… or the summer… mentally I went to hell and back, i was terrified but didn’t give up hope. But my treatent is working - 16 months on and my last scan at end of May showed no obvious tumour activity. I feel great and live life for now - every day is precious. It’ll take time to adjust, but try to hold on to hope. I looked at this forum a lot focussing on positive secondary posts, so hope my post will help a little.
Hi Everyone,
Im new to this but thought i would share my story Breast+Bone age 40 now.
I was diagnosed with tumours all over my spine,ribs and hips in May 2010, after suffering from back pain for many years.So a MRI scan was done on May 28th 2010 and that was the worst day of my life. My spine was in operable and was taken to catterbridge to have 3 weeks of radiotheraphy on my spine.because bone cancer was secondary they needed to find my primary which was weird cause id had lumps 5 months previous in my breast but biospys said it wasnt cancer, so i had a biospy on the bottom of my spine which showed it was breast, but a hormone breast cancer. So i actually havent had any treatment on my breast.So when i left clatterbridge i had 9 weeks of chemo, which was amazing cause i was able to walk round more and pain was loads better plus i wasnt that poorly.
I carried on having Herceptin and zometa(my bone juice i call it) to this day every 3 weeks plus lots of tabs, been on tamoxifen but they just changed them now cause its spread again slighty in my spine.
I know is hard to deal with being terminally ill, but i try and say really positive,active,and enjoying life to the full. Im not ready to go anywhere yet. i love planning fundraising and organising days out with family or friends for something to look forward too. i find that helps alot.
Take care x