Metastatic breast cancer spread to femur

Hi,  think injection you are talking about is Fulvestrant, I have this every 4 weeks (1 in each side) been having this since February and it’s ok, can feel about sore afterwards but totally doable.   I’m also on zometa infusion every 4 weeks and ibrance tablets.  I’ve also,had hip replacement (11 weeks ago) after discovery of mets in my right hip, 

Hi maxmum, thank you for your reply, it is very reassuring that these injections are doable! I am just very terrified. I think I am terrified of a lot of things and this being the next imminent hurdle is what I am fixating over! I only seem to be able to read where you have put mets in your right hip? I don't know if you carry on from there, I'm such a technical idiot ha! Have you got mets anywhere else? Also how are you getting on with your hip replacement? You are a few weeks further on  than me. I feel my progress is so slow but my surgeon who I saw on Friday said my progress was great! 

Hi,   I was originally diagnosed with breast cancer in June 2017 at 50, have had double mastectomy,reconstruction, ovaries removed, chemo and herceptin.    Since about June last year I had groin, hip,back pain which was getting worse and was horrific at times, eventually paid to have orthopaedic consultation as was getting nowhere on NHS, he was immediately concerned and ordered a MRI which showed cancer had returned to right hip in December 2020.  Transferred back to NHS for treatment, my cancer is still E+ but now HER2- this was discovered after a bone biopsy.  After a dose of radiotherapy to help with pain, I started fulvestrant injections in February.  Injections are inter muscular so can leave you a bit bruised (i compare it to how my arm felt after COVID jab) . Had full hip replacement plus some extra screws and cement to stabilise my pelvis was carried out on 29th March, To begin with I thought my recovery was great, up and about next day (on zimmer) left hospital after 4 days on 2 walking sticks .  I’m very impatient so totally thought I was cured and would back walking within weeks!   I am now walking better but still need 1 stick outside and sometimes in house.   I am going to get physio after the results of my recent CT and bone scans are known, to hopefully improve my mobility.   I’m upset I’m unable to walk my dog .  Hip replacement has been really good in sense that it reduced my pain considerably, before surgery i was under palliative care doctor who thought oramorph or  oxycodin were needed as my pain was unbearable. I now only take paracetamol .  

I think you need to be patient with hip replacement, do your exercises and allow up to 12/weeks for recovery .

I also take Palbociclib targeted therapy tablets to hopefully keep cancer stable and stop it spreading.

You have had a huge shock diagnosis on top of major surgery so be kind to yourself.

I’m still trying to process that I’m only treatable not curable but grateful for any treatment I can get. 

Take care  xx

Hi maxmum, thank you again for all your info. I am still awaiting my bone biopsy result which I should get on Monday. I also have an MRI as a bone scan showed a teeny tiny something on my spine, i am hoping that is just age! I too am upset I cannot walk my dog, but I coujd just about walk her before all of this. She is the size of a small horse with no brain!!! Saying that back In Feb, she lunged at another dog and broke my finger as the lead was wrapped around my hand. As she lunged, I lunged for her and I think it was this that kicked my hip off. My husband tells me she saved me ha!

I am very up and down, mostly up and ok. However on Friday I saw a nurse for my pre treatment assessment and have literally not stopped crying since! I think she must have been off on the day they did communication skills, she was like a robot and I felt I was just a tick box exercise for her. Worse still she is probably be going to do the injection so I am hoping her injection technique makes up for her super bad communication skills! The majority of nurses and doctors have been lovely though and I am trying hard not to be a crank!! Can I ask do you have children and have you told them. Also do you work and if so how have work been? Thank you again x

I’m really happy to put your mind at rest, it sounds like we are in similar situations.

I have 2 nurses (not always same 2)

who do my injections, one each side simultaneously, to make it less painful .  The nurses are fantastic and I always leave the unit feeling better than when I went in.  But it’s quite a small unit and the same team, on the whole, who treated me during my primary.   I had quite a few issues with treatment during my primary, side effects, anaphylactic reactions etc so I’m remembered!

My dog is big too, a 30 kilo Labrador/german shepherd cross who we got last March to keep up my exercise and fitness after  we lost our old dog in January.   Ironically I was walking him twice a day for 30 to 40 minutes and getting fitter/ losing weight, feeling much better but obviously aggravating cancer.  I haven’t walked him since my hip replacement (he’s very strong and isn’t best on a lead)  however we have employed a dog Walker to help us out.   It’s a bit like seeing your child building a relationship with a teacher or something him going off with Walker , but he’s super happy and as my husband sometimes works away from home, it means at moment I don’t have to thing of getting him rehomed.

I have 2 grown up boys. As I was diagnosed before Christmas and we didn’t know until January if cancer had spread or treatment plan , I decided not tell them and spoil what was going to be a strange Christmas anyway due to lockdown . Unfortunately with the COVID-19 restrictions I couldn’t even tell them face to face or hug them, which was incredibly hard and broke my heart.   I try to be very positive with them and tell them people live for years with secondary cancer, the mum in me wanting to protect them!  The boys both have their own houses but live quite close, I have no grandchildren yet and dearly hope to live to hold and love any that I get!  My youngest son gets married next year another goal I need to work towards.  

I do work, have been working from home since March 2020.  Just going back to work 2 days a week after hip replacement.  I’m still working from home. I actually wouldn’t be able to go back to office as i work in a city centre commuting by car and train plus half a mile walk to office, I just couldn’t do this at moment!  My employer is happy for me to continue to work from home if needed, even when restrictions ease.  My job is quite stressful and working from home full time is isolating but I need to keep working financially.  I have been in touch with Macmillan regarding benefits if I need to give up working but there is nothing for me other than possibly PIP. 
I do have a blue disability badge for car, which is brilliant for parking for hospital appointments etc, if you don’t have one I would look to apply.

My original CT scan showed a ‘lesion’  on my liver, my oncologist said these are quite common and he is fairly convinced it’s benign but it needs to be kept any eye on.   My next CT scan is tomorrow so I  am very anxious  and won’t get results till early July.   

Please feel free to contact me if you think i can be of any help.   I hope all goes well for you on Tuesday.

xxx

Thank you maxmum, you have been such a help and great reassurance and I want to wish you the best of luck for your scan tomorrow. 

I have been off work since I had the telephone call from my gp about my x-ray so mid April. I had a reconstruction just before Christmas, my body is like a patchwork quilt but looks a 100x better now in underwear! But I am coming to 6 months off soon and as I work for the nhs this will soon go to half pay. My friend told me to apply for pip which I have started, waiting for the forms and I will certainly apply for a blue badge, that would be very useful!! 

I havnt told my children yet although they are older they are all still my babies and they all still live at home. This does make things difficult at times because some days I just want to scream my head off!!! The time has just not been right yet so will have to think about this one. Can I also ask have you had any hair loss on this treatment? After my mastectomy I had 4 sessions of chemo wearing a cold cap. I did lose probably a third of my hair but that has come back. They tell me you get a thinning? Xxxx

Hi,  I lost all my long hair during chemo and it’s just back to pre cancer length.  The fulvestrant and palbociclib both cause thinning hair and I have noticed this, but I do have thick hair so it’s been ok so far and no too noticeable.
I have found there is very little financial support for secondary cancer.  I have spoken to benefits advisor at Macmillan who advised me other than PIP which is by no means guaranteed or indeed relevant to secondary cancer, I’m entitled to nothing, so have no choice but to stay in stressful job .   Macmillan advisor did help me fill in form as i would have filled it in completely wrongly as I think you have adapted your life and forget how long it takes you to do things and the things you can no longer do. X

Hi I have just been diagnosed with stage 4 breast cancer and feel like I have hit rock bottom and very lonely. 

Hi Norwich, it's a bugger! What treatment are you going to have, do you know yet?

Hi maxmum, hope your MRI went ok and best wishes for the best result. You were absolutely right about the fulvestrant it was 100% ok!!!! My daily fragmin hurts more!! So thank you for your reassurances xxx