Hi I finished treatment for my ER+ HER neg Breast cancer 2 and a half years ago (Mastectomy, 4 months of chemo, Anastrasole). 8 weeks ago I reported an annoying cough to GP and since then have been diagnosed with secondary BC that has spread to my lungs. Shocked that it should recurr so soon! I am going to start Ribociclib and Fulvesrant soon. Would like to hear from anyone else with similar experience. I live alone and am rather dreading the side effects but want to stay as active as I can and want to plan little trips away.
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Hello artygirl. I have secondary breast cancer which had spread to my adrenal gland and encased my kidney. I was diagnosed about a year and a half ago. My bc is triple negative so I’m not ok the sane treatment as you so can’t help with that but happy to help with anything you want to know. It’s a tough time being given this diagnosis I found.
A great group on Facebook is 2nds together run my Make 2nds count which I find very helpful too. https://www.facebook.com/share/g/1D9rQoYuo8/?mibextid=wwXIfr
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Hi,
I live alone too so understand the fear of not being able to look after yourself if you get sick.
I was told my cancer was back 4 years ago. Mine was to bones. My oncology team have been great at organising my treatment around holidays and i’m talking about skiing, scuba diving in isolated locations and general site seeing.
If you can plan holidays around the injections then thats great but they can delay a week to allow a holiday.
See what your side effects are and talk to your oncologist.
Thank you for reaching out to me Artycart! I am still having a job believing this is happening to me. I think I will feel better about it once I start treatment although that may be unpleasant. Thanks for the Facebook info. I will investigate!
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This is very encouraging Yorkshire Tyke! The thought of skiing and scuba diving is mind blowing! I will be very happy with short trips to Europe to visit friends. And enjoy good food and drink! I think my oncology team will be good too, it’s the same team as first time round which feels very friendly. My partner died last year and I really miss his support and being able to chew things over with him. But I do have some wonderful friends who will help if i need it. And 2 beautiful cats who definitely sense something is amiss and give me extra snuggles!
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Yes it definitely helps once you’ve started treatment and you know that something is being done. Seems like we might both be arty people. I find that helps me a lot because I’m always able to keep my brain and my hands occupied with some drawing or crochet or whatever craft or art I’m into. Pets do help too so I’m sure your cats are great. I have a little dachshund and she is great at giving cuddles. If you have a Maggie’s Centre near you I also found them to be great places to go for a sense of peace and for practical advice and psychological help too.
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Yes, I am an arty person and it is great to lose myself in painting. I also knit because I like my hands to be doing something. And I’m learning the ukulele! My cats are great company. And I’m sure your little dachshund is too. I haven’t heard of Maggie’s Centre, will look it up. In fact there is a lot of advice around once you start to look. I do hope your treatment is effective.
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Sorry you have found yourself in this new situation, in the beginning it is very hard to get your head around where you are now at. I have been a metastatic bc traveller for 3.5 years.
Join a Breast Cancer Now secondary group near you or Make Seconds Count depending on your location - both on line too. It helps to have lived experience, a new tribe to support you.
Ribociclib and Fulvestrant was my first line of treatment too, it takes awhile for your body and mind to adapt but it’s doable and side effects manageable.
Take care of you. Xx
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Hi @artygirl just butting in here to second the suggestion of finding a Maggie’s centre if you can, they are not specifically about BC but are absolutely brilliant in a range of ways.
To find out the nearest one to you, put your postcode in to this link https://www.maggies.org/our-centres/?postcode=W13+8EA&sort_by=sort_by_distance
I am can imagine your shock at the diagnosis but more and more women in this situation find that they are being treated with a chronic disease (one with a long duration) for many, many years, thanks to the amazing progress in treatment development. My best wishes to you.
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Thank you Tigress. That puts a positive slant on things, thinking of it as a chronic illness. No Maggies near me, I am in Devon, but there is great support from a local cancer charity. What I like about this forum is chatting to other women who are going through similar experiences and are here to tell their tale! So glad I took the plunge and joined in.
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Very interested to read this SMBW18. I will follow your suggestions about those specific support groups. You are the only person I know of who has been on the same drugs as I will be on. I may well pick your brains once I get started if that’s OK. It’s good to read that the side effects are manageable. I seem to be more worried about them than about the actual disease!
Hi artygirl 
how are you today? I hope you’re feeling well 
I’m very sorry you’ve had a recurance & to be told it’s secondary too is bloody tough to put it lightly & politely.
I was diagnosed in late February 25 with Lobular Breast Cancer, a couple of days after my 52nd birthday as I refused to go to the results appointment on my birthday. After many Breast Biopsies, CTs, MRIs, US Scans, Mammograms, I had a long wait for an appointment with somebody trained in doing CT guided Bone Biopsies. Let’s just say that I’d have to be put to sleep before having another of those! I waited 5 weeks for the results of that as apparently the sample had been crushed & wasn’t the easiest to get results from. Anyways results confirmed that the cancer had spread to a couple of areas of the spine, left & right pelvis & the top of my right thigh bone. They’re not sure for certain if it’s in my left clavicle without doing another bone biopsy (absolutely not! 
)
And so I take Letrozole 2.5mg p/d, Ribociclib 400mg p/d reduced from 600mg p/d, Adcal D3 & I also have a Denosumab Injection every 4 weeks.
It’s difficult to say really about side effects as we are all different. Personally I struggled on 600mg per day with really severe fatigue, awful brain fog, upset stomach etc. After about a year I had to reduce the dosage & I’m doing much better on the 400mg p/d thankfully. I still have fatigue & an awful memory but it’s not as intense now.
I really hope you manage well with your treatment cos as I said, we’re all different aren’t we & you may well be really amazing with any side effects.
As ladies have said earlier, try reaching out to groups that are going through the same as yourself. I find it really helps being able to talk to people who really understand.
Take care & I wish you all the very best for the future 
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Hi Loki, thank you for taking the time to write. It sounds like you have been through the mill. I am seeing the oncologist on Friday and I hope he doesn’t start me on a very big dose of Ribociclib, would prefer to get used to it gradually. But I guess we have to trust the experts who have seen lots of cases like ours. I had a lung biopsy, the build up was a bit scary but if I had to have one again I would be OK with it, it didn’t hurt, just a bit of a shock when the sprung loaded needle went in!! I m on maxium dose of Codeine and also oramorph when necessary for the pain in my shoulder and breast and to suppress the cough. The meds work well for suppresing the cough which was exhausting.
I don’t know anyone else who has had the BC spread to their lungs, would like to hear from someone who has been treated for this. I had a full body bone scan and luckily it hasn’t reached my bones. Im so sorry your bone biopsy was such an ordeal. Good luck with your ongoing treatment and all the best to you 
Hi everyone x
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Hi @sbee have been thinking of you. 
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Totally agree re: Maggie’s Centres. I attend the Royal Marsden one. With long delays between appointments, Maggie’s is a great place to decompress, have a brew, chat to other patients or staff, or just wander around the garden. It’s fabulous to have a non-clinical place to escape to
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