Just wondering if there is anyone out there in a similar situation to me? I’m 37 and was diagnosed with bone mets (in my hip and pelvis) last November. I was first diagnosed with bc in 2003 and life had got pretty much back to normal. It was all the more shocking as I had been told it was not cancer but arthritis back in April. I underwent a total hip replacement just before Christmas and have just finished radiotherapy and am about to start chemo. I had a very active life before the op and am finding the whole debilitating experience completely frustrating. I feel particularly isolated being younger – along with all the other feelings we all experience – the utter fear and the anger. I would be keen to get in touch with anyone going through the same and share thoughts. Does anyone know of any support groups for younger women with secondary cancer in West London or Berkshire areas?
Sorry to hear your news. I’ve got spine, hip, pelvis and femur mets so can totally relate to your feelings of it being a debilitating experience - I was very fit and active before all this happened (original diagnosis in 1995) and used to ski twice a year, etc.
I’m not as young as you (was 40 when first diagnosed) and I set our support group up in 1996. The problem we now have is that there are 6 of us with secondaries (varying in age from 42 to 55) and we don’t have a specific secondary breast cancer support group. 5 of us have set up a very informal group and we meet to discuss what’s going on for us but it’s a ‘safe’ group as we’re all very similar minded. I think that’s quite important as we all need to protect ourselves, more so within a secondary group setting unless you’re lucky to have the services of a psychologist.
Have you thought about asking Macmillan if there is a specific group in your area - I’ve had a look in their directory but can’t see one.
Hi I am 36 and was diagnosed with Breast and Bone mets in my hip last May. Have had chemo and radiotherapy. I am in Basingstoke North Hampshire and would be interested in getting together with anyone with secondaries in the area. Got a car so can travel
Hello Jools
I would definately like to meet I tried to send a message but I seemed to lose it somewhere. I was thinking maybe somewhere in Reading might be in the middle
Hi, I’m in my 40’s and had a hip replacement in 2003, due to fracture, due to bone mets. It took a little while but my hip feels ‘normal’ and I don’t have to use a stick or anything.
Good Luck with your chemo.
Belinda.
Dear Humphr10, am so sorry to hear of your bone mets,how shocking it must have been for you.Did they just presume it was arthritis you had back in April,or did they miss something on a scan?Am not surprised you feel so angry. I have had primary breast cancer but just want to wish you all the best of luck in your ongoing treatment,let us know how you go on and I hope you find a support group that will help you,…D…xx
I started the support group back in 1996 as a primary b.c. group with just two of us and it grew from that plus the breast care nurses then asked if they could be part of it so the membership is probably now in excess of 100 although they don’t all come at the same time (thank goodness!)
Setting up a secondary support group is a bit different though as the nurses asked me if I was thinking of doing that. I decided not to but to meet informally with people who are similar minded - as I mentioned above.
Not sure whether it would be of any benefit mentioning it to your breast care nurse in that you would like to meet people who are similar (not just medically but in their outlook) and see whether they would be interested in meeting up. Sometimes things just evolve without you realising! It is so good thought to be able to talk to other people who have secondaries and who understand what you’re going through and the fears and concerns you have but we also have a lot of time for laughing as well.
I feel very much as you do regrding going from being active to not being able to do much on the excercise/movement front. I was dx in June last year with secondary mets in bones,liver and lymph glands. As someone who was so used to being on the go with work and running etc it was such a blow especially as I am only 34. I have sat extremely frustrated at times not being able to just go and do what I want when I want.
I have found that getting through chemo and now am on herceptin and zometa for my bones I feel ready to reassess what will be normal for me now - no more clambering around roofs at work and my hope to do a marathon before my 35th birthday is out of the window, But I have recently started swimming - very boring but Im trying to like it. Also my oncologist has signed a letter for me to do gentle excercises at the gym. Not what I am used to but…
It will take ages for you to get used to your “new” life but I hope you can find a way to get through it.
I can totally relate to what you’ve said. I was very fit before having spine and liver mets (used to go walking in the Lake District, ski-ing, gym etc) and now I do hardly anything which is totally alien to me. It’s weird though that my weight is still the same even though I don’t do the exercise I did before - I’m still around 9 stone (5’ 7") so can’t grumble in that way.
My physio and I went through all the things I used to do at the gym and it turned out that I can only now do one of them safely so not a lot of point paying £40+ a month to use the gym!!!
I was diagnosed initially in April 04 aged 36 and secondary diagnosis in bones came last October (hip/pelvis & spine). I was being treated by a rheumatologist for pain in my hip with a course of steroid injections and kept complaining of lower back pain but we were dealing with my hip first, then my back… To cut a long story short I went to see him and said I was in so much pain etc and had a bone scan and this showed mets. So, Humphr10, I kind of share your feelings re: believing it was one thing and then finding out it was cancer.
Like you I am finding my reduced mobility, energy, stamina very frustrating as I am only 39. I am very much a ‘doing’ person, very independent of others and used to driving myself all around the place and getting things done but am now reliant on others in a number of ways.
I would love to get together with younger women (no offence to older ladies) as it is very isolating being in this place at this age. I live in West Sussex on border with Surrey. I don’t know Reading very well but my former self shopped til she dropped in Reading a number of times so could find my way there if lovely cancer ladies were waiting for me!!
Have you joined the live secondary chat on Tuesday eve - its is a great source of support and the thing that struck me most was how young we all are.
I am (I am 39, just) Originally dieagnosed at 28. I am really interested in meeting other younger women with secondaries. I live near Portsmouth and have a car and can travel.
It is a long story but I was being treated for ashma and seeing a physio for restricted movement in my shoulder then found out it was secondary cancer to bone and lungs. I had been having symtoms since December and was not diagnosed until June, but enough of that…
I keep missing the chats on Tuesday night. I will try and make sure I make it next week if you will all be on there it will be great to chat.
I was also very active before diagnoses and have found it very frustrating.
Thought would jump in too. Am 39 (well actually hitting bit 40 very soon) with 2 little ones under 4!! Angee, I live right next to Lakeside shopping centre in Essex, you probably know it, and not that far from West Sussex/Surrey. So would be up for a meet. Actually, met up with some of the ladies on the Anyone with liver secondaries about 3 weeks ago now, which was great fun and nice to put faces to names etc.
Hope everyone good and Angee, hope your op goes well today.
I took part in the fashion show back in 2003. The way to find out is through Breast Cancer Care’s website - they’ve probably already got this year’s models sorted already for this coming October but around November time they will be looking for 2009 models.