Secondary breast cancer

There's a few ladies on here with secondary and hopefully they will be along soon to support you xx

Hiya Stig1984. It's lovely to meet you but I do wish it could have been in the pub or somewhere more pleasant than here.

I have secondaries in the liver, lymph nodes, original scar and bones. I have no idea which bones they are in  - this is a current big  bone of contention between me and my oncologist....but anyway. Similarly to you, I was initially diagnosed  at 32, had a mastectomy, no lymph involvement.  I was diagnosed with secondaries 19 months ago after an 18 month argument with the GP that something was wrong. 

I don't have any experience with ribcicoclib - I did chemo and now I'm doing Tamoxifen and waiting for Denusomab so whilst I can't help you with side effects, I can help with listening when you don't want to dump on your family. 

Your GP or nurse should be able to cough up something to help with the nausea and as for appetite, the little folder they gave me suggested a glass of wine before I'm due to eat. This sounded like the sort of advice I was more than happy to try and to my surprise and pleasure, it worked. It really did stimulate the appetite for me. Not much use for breakfast, I admit. (I also find that the smell of the bread machine going turns me into some sort of carb monster and I'm haunting the kitchen until it bleeps - do you have a smell you can't resist?)

Moocoo thank you for your reply i will have to try the wine thing i sometimes feel like im hitting a brick wall with the oncology doctors sometimes as dont feel like they listen to my symptoms im having and always feel like im getting pushed out the door with more pills to get rid of things then more things to get rid of the side affects from them of u know what i mean they have tried me on 2 different types of anti sickness pills but none have seemed to work so far .ive been on tamoxifen for the last six years but didnt work for me so on new hormone inhibitors now hopefully these will do the job hope tour doing ok on your treatment too and your right would of been much better to have met in a pub thank you so mich for the reply x

Hi I am a secondary too!

I take ribcicoclib also But don’t seem to have side-effects from this my side-effects seem to come from taking letrozole as all the other ladies on here described as feeling like a 90-year-old because of the pain and aching!

The cancer returned in my bones and liver and I also have a tumour at the bottom of my spine which before I was diagnosed for around a year eventually the GP suggested it was sciatica so after eventually getting an MRI scan done this confirmed it was cancer and not sciatica. I’d had trouble walking and the pain, numbness and tingling in my foot was so bad I’d taken to sleeping on the sofa just before I was diagnosed as I couldn’t get upstairs to bed.

sorry for the moan on here I feel let down by the GP and also the hospital tell you on your five year appointment with breast cancer that the cancer could return in your spine and I feel this should be mentioned straightaway on breast cancer diagnosis because my secondary cancer diagnosis Would not have been missed.

xxx

Hi Ladies

i joined the online community in 2016/7 I was diagnosed with breast cancer and had a lumpectomy with a 22mm lump removed lymph nodes were clear I had chemotherapy and radiotherapy I was prescribed Letrozole and I had Zoldronic acid . I coped ok with Letrozole but like many people I had aches and tiredness . Follow up scans were all clear then in March 2019 I went back to work I was a LSA in a primary school but went back as an after school helper , I had only been working for a few weeks when I had the most awful sciatica pain in my right buttock that went down my leg too I did exercises to release the pain they helped for a week but then the pain came back with a vengeance so much so it bought me to tears I also had physio therapy  then it spread to my hip I couldn’t lay on that side and the pain would wake me at night . I went to my doctor who asked “ what do you want me to do” they suggested paracetamol after a few weeks with the pain getting worse I went back “ take ibuprofen as well “ took that pain was just getting worse they booked a scan “ you’ve got hip Bursitis you need an injection to cut a very long and painful story short in October last year I was diagnosed with secondary breast cancer it had spread to my pelvis which resulted in a fracture . Not one health care professional even suggested it could be cancer cells that had spread to my bones but on looking up secondary cancer the pelvis is one of the places it goes to , had I not been so insistent that I couldn’t cope with the pain I’m not sure what would have happened. I had radiotherapy I’m on targeted therapy Denosumab injections and Fulvestrant injections monthly I now need to use a crutch to aid my walking I’m tired most of the time and suffer constant bouts of diarrhoea but that said my last scan showed no further spread and for that I count myself lucky I’m not sure how much longer this treatment will work I take each day as it comes .

Be strong ladies

Hi lovely ladies

I hope you are all safe and sound and ok today.

I cannot believe that health care professionals related to breast cancer services do not know to tell us that after having breast cancer that it may return in the bones, spine etc and what signs to look out for.

It seems they do not believe the pain we are actually in, as if paracetamol could help with it!! Even now having secondary breast cancer I feel that most people concerned with my treatment and care do not really care about how much pain I'm still in. It has taken me to do research on this forum after reading the struggles that you all go through to find a solution to something.

After this rant I wanted to let you know that by changing the brand of Letrozole the pain in my feet and legs is reducing. It still hasn't gone but it is a lot better :) I was taking Cipla and have swapped to Accord which has helped me.

I still have problems sleeping, having bad dreams but this is probably another side effect from meds.

My crohns disease is still ok - no problems as such here which is great.

I still get pain around the bottom of my spine/top of bum where I had radiotherapy but this is where a tumour is anyway.

After ranting on here (thank you for that) if you have any questions I'd love to help anyone if I can.

Take care xx