Hello, I would like to join in here too please and send love to everyone going through this.
My primary was found in January 2017 after finding a lump in my left breast. I had a mastectomy and was prescribed Anastrozole. I was very unlucky to have a chest wall recurrence on the same side later the same year.
After the lump was removed I then had five and a half weeks of radiotherapy during 2018.
Last year I had a chest x-ray as I'd had a cough for a few months and then after a Ct scan they discovered cancer in my lymph nodes and secondaries in my spine. I too was devastated to get this news and was unable to process it for quite a few weeks.
I am taking Palbociclib, Exemestrane and have Denosumab injections every four weeks. My PET-CT scan in January showed the cancer in the lymph nodes have reduced by almost half and the spine mets are stable.
The only side effects I have noticed has been loss of nose hair (!!) eyebrows and now my hair is thinning a lot. I have been able to continue working full-time and only feel tired on the fourth week of the cycle.
I feel so lucky to have been able to have the Palbociclib and hope it gives me many more years!
So glad that we all have each other on here for advice xx
Hi I would just like to send my love and echo all that has been said by the other ladies. It's horrible to start with. I found it hard to eat because of the shock and worry. I lost half a stone in afew weeks. But 4 mths on I am eating, sleeping, laughing ( I know I never thought I would again) and getting on with it. I'm scared of scan results but cope otherwise. Hope you can do the same. Lots of love jennie💕xx
Thanks so much for your post. Like the other ones they fill me with hope that I can do this!
Support means so much and knowing others understand what you are going through
Like you I’m fairly new to the group - I was diagnosed with secondaries in the bone, liver and lungs on the 7th Feb and started Docetaxel, Herceptin and Perjeta 12 days ago.
It’s certainly no walk in the park but I completely agree with all the other ladies who say you do settle down. I no longer cry at every opportunity (to start with I’d burst into tears every time I had to say the words out loud). I’m also able to sleep through the night and don’t wake up in the morning thinking I’m in the middle of a nightmare.
This site especially has given me a lot of strength. It’s easy to feel very isolated but you soon realise that so many of us are affected by this and so many are able to carry on with a relatively “normal” life whatever that is!
I hope it becomes easier for you too.
Best Wishes xxx
Thanks so much for your welcome and support! Starting to come to terms with diagnosis but it is such a mine field and hits me like a sledge hammer now and then!
Good to know that the forum is there for support
Hi Hillrunner, sorry you have had to join us but welcome.
I am sure you feel like you are in a horrible dream and disbelief at the moment but I promise you it doesn’t get easier live with!
Briefly, my primary was in 2007 grade 1 no need for chemo, fast forward to 2014 after complaining of hip pin mainly when walking (always done an evening walk) I was eventually sent for a CT and bone scan and discovered I had mets in hips, ribs and spine, totally go smacked......I didn’t even know you it could come back in your bones!!! Been stable for 6 years until January when the little uggers decided to pay my liver a visit too, so now on new meds, after the initial shock and tears I am now starting to get my head around it and getting back to some sort of normality.
Good luck with your new treatment plan, any worries or questions please feel free to ask, the ladies on here are lovely and there is usually always someone who can answer your questions,
Hi @hillrunner Thank you for your post and we are sorry to hear about your diagnosis. We welcome you to the Forum and hope you find the support and advice you need here.
Please know that our Breast Care Nurses are always here if you want to talk things through, ask any questions and find more support. You can call them on The Helpline free on 0808 800 6000 (open Monday to Friday — 9am to 4pm and Saturday — 9am to 1pm)
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Thanks so much Nicky! That sounds so similar! I thought it was as I'd pushed myself too hard. Couldn't believe the diagnosis!
Hoping to carry on normally and that the Zolendronic acid will help the hip pain so I can run without problems.
I had a look at the forum posts and there were so many women posting I felt as though I wasn't alone!
So glad there is support out there
Sorry you have to join us but we do all understand what you’re going through as we’ve all been there ourselves.
You story sounds very similar to mine when my mets were found 12 years ago. I had a local recurrence, and a bit of hip pain but only when I jogged so I put it down to bad technique! A subsequent CT and bone scan confirmed bone mets. It was a complete shock and totally unexpected as I had no actual symptoms other than when I did a short run. You need to give yourself time to adjust as it is something none of us expect to hear so we can’t even get our heads around it at the beginning. Statistics are completely out of date on the internet as well so if you start looking things up you get completely scared. However over time you do adjust and there’s no reason you can’t continue as you did before your diagnosis, I have done and most of us do.
If you look at, and join in, the bone mets please join in thread you’ll see there’s many ladies living with secondary BC. We have our ups and downs but it’s a great place for support and advice.
Thanks so much Lollypop - I really appreciate your post and support. I'm sorry to hear you are struggling too - it is so like being hit by a truck - suddenly life has changed completely! I hope it will get easier for us both!
Welcome to the site you’ll find lots of support and advice on here, all the ladies are lovely! Sorry to hear about your diagnoses it’s the news none of us wanted to hear. I also have secondaries in my bones ( spine ) it’s a tough thing to get your head around but I’ve been told in time we all will and it gets easier, which I hope is true as I am really struggling at the moment, I’m only 35. Please feel free to ask any questions xxx
I've not posted before just joined tonight! I had DCIS and a mastectomy in 2006 and fine till last year in February (2019) when small recurrence treated with surgery, radiotherapy and letrozole. Since october (2019) had a sore hip - I'm a runner so thought it was that. Found out in January it was a secondary breast cancer lesion on my right iliac crest, with a wee nodule in my lung and a suspicious node in my chest. Still in shock - thought I was going to die - I'm 60 - I was so afraid. Saw the oncologist on 7th Feb and started zolendronic acid and Fulvestrant last week. had a bone biopsy and so will start Palbociclib soon. Not sure what to expect - afraid I won't be able to lead a normal life again and still getting over the diagnosis of secondary breast cancer. Trying to be positive and live for each day! 🙂
Thanks Anniej, I’ve discussed it with my Oncologist several times and believe I can have it when I need to change treatments as it’s now available for second line. I was just asking because I didn’t think it had been approved by NICE for three years. Kate x
I started Letrozole in October 2017, and my Onco got me on Palbociclib at the same time as first line treatment. I hadn’t been on anything else so was accepted for treatment. The Palbo strengthens the Letrozole, I’ve been told so you get better results. X
I’m three years in on Palbo and Letrozole and NOT going anywhere. Mets in lungs stable, nothing else anywhere else. 🤞 Occasional blips with high temps when snotty grandchildren breathe on me, but, hey ho, it could be a damn sight worse. Thank god for NHS . Here’s to long and successful treatments for us all. 😘
Fantastic news. You must be so relieved that things are going in the right direction. I'm on my third cycle of similar meds with lung and liver mets. I really hope to have good results too. Take care. It's so good to hear good news. Love 💕jennie x
Hi,I was absolutely terrified when I found out I had breast cancer again!First in 2002 then in August 2019.I had surgery to remove the lump and lymph glands,radiotherapy and Tamoxifen the first time round and was discharged 5 yrs later,it was a great relief.Then to my horror a lump in the same place,same breast.The original plan was to remove the breast entirely which I could live with no problem.But then I had a CT scan,petscan,mri and EBUS which showed mets in the lungs.It was such a shock,I thought that’s that then,I’m going to die.Then the thinking takes hold,not seeing my grandkids grow up,no future etc etc.That was in October.I have been on 4 cycles of Ibrance and Letrozole and had my first CT scan last Monday and my Oncologist is pleased with my results.The mets in my lungs and breast have shrunk already so I’m not going anywhere just yet.
Hi I don't have a definite date yet. I have an appointment on the 28th after this cycle the scan after next cycle so end of March probably. I'm hoping they are happier with my lung and li at still at least stable. Xx
The positivity comes and goes a lot during the day...I’m sure it will settle down in time. I hope we can have a long time on the meds. When Is your scan to see how things are going? Xx
Hi good to hear you're sounding more positive about your new normal. I'm on cycle no. 3 now and living life pretty much as I dI'd before. It is scary still especially when scan day comes around. But hopefully we will all cope on new meds for a very long time. Take care 💕jennie xx
Thank you all for your lovely replies, I’m sure once I get into the swing of the treatment and I get good results (hopefully) I will feel better. I need to try and get my head around my new diagnoses and my new “normal “ but god it’s hard isn’t it. Xx
It is only natural to be nervous when starting a new treatment. I was panicking when I took my first doses of Abemaciclib (same sort as Ribociclib) and panicked before having denosumab and fulvestrant jabs but I feel fine most of the time, just some stomach upsets from Abemaciclib) and carry on pretty much as normal, out and about, shopping, socialising and generally getting on with life. It is surprising how quickly you get used to the new routine of bloods, jabs, pills etc and just take it in your stride. If you have problems they can tinker around with the dose and give you side effect medications. My last scans were stable so it seems to be working for me. Good luck with it xx
Hi completely understand your worries. I'm 2 years into target therapy treatment palbociclib which is similar to ribociclibband letrozole and was on denusomab now in zometa which is similar bone protector but less expensive than denusomab . Had secondary diagnosis in feb2018 with 6 tumours 1 in each lung 1 breast 1 in base of spine and 1 in each side of pelvis scan after 3 months showed 4 of 6 tumours smaller and ongoing scans show things stable. Minimal side effects and managing to be fairly active. Hope treatment goes well for you Liz x
thank you for replying, yes the nurses at my unit are lovely I saw them all when I had my 5 rounds of chemo! I’m starting, ribociclib letrozole, denosumab and I’ve had my first zoladex jab last week. I’m so nervous and had such bad luck so far I have no faith this will work xx
It's totally understandable to be anxious about starting your treatment, be kind to yourself and try and think that it's the first positive step in your journey to 'living well' with your SBC. Have you got someone to go with you to the chemo unit? The first visit is a bit scary but in my 7 years experience of living with bone & liver mets, it just becomes part of your life & a new routine to deal with. Chemo nurses are usually really lovely and you can build up a good relationship with them. They will allay any fears you may have. Which treatment are you starting? All the very best.
i got a call from my chemo unit today and I’m starting treatment a week Thursday...I’m not sure how I feel about it if that makes sense. I’m relieved in one way that I will be on meds but the other part of me it’s really scared and anxious for some reason. I’ve been around like family all weekend and just come home and I feel so anxious. It’s just me and my boys I don’t have a partner here, I’ve been fine all weekend and I feel like it’s just hit me all over again. I hope I pick up again, sorry to ramble on xx