I'm caroline, 39 and in the UK. July 2015 I was diagnosed with primary Her2 positive BC, had mastectomy, chemo, herceptin injections for 12 months, and radiotherapy, treatment ended Feb 2016 with NED. I had a bone scan just before lockdown here as I'd had the odd niggle of discomfort on my back left side and an off niggle left hip. Results came through during lockdown and it showed changes to those areas so sent for an urgent CT scan, took the call 4 days later and was told low grade cancer in 1 rid and left femur but also a small metastases to right lung and 'multiple' deposits to liver! Had to be told over phone due to covid restrictions, I nearly passed out with the news. Absolutely no symptoms of lung or liver so I was blown away.
Luckily my local private hospital gave the run of the place over to the nhs cancer centre and I'm safely able to go receive my treatment of 6 docetaxel, just had round 3 last week and started herceptin + perjeta which I will remain on as long as it's working.
I have been on the breast cancer haven site for a few years and knew to look on here when this new diagnosis came in. Just wanted to introduce myself here. Having up and down days as I'm sure you all are/do.
Would really love to hear any stories of hope with similar diagnosis. I told my oncologist I can't discuss prognosis at the moment, I think with the lockdown and shielding etc... I couldn't handle it so he just said ok that's something we can talk about further down the line. I'm hoping that's a very long line!
caslav, I'm glad you found this site although I'm sorry for the circumstances that brought you here. Receiving an MBC diagnosis can be exceptionally frightening, but you'll soon begin to see others with similar diagnoses living for many, many years with good quality of life.
If your mets are HER2+, HR- (and it's always a good thing to check via biopsy), your prognosis is the best of all subtypes due to recent advances in HER2-directed therapy. You're also receiving state-of-the-art treatment for HER2+ MBC via a taxane, Herceptin, and Perjeta, and I'm assuming you're also getting a bone-directed therapy such as Xgeva or Zometa for your femur.
If you're ever curious about approved treatments in the UK, Europe, Australia, and the US, along with cutting edge research, you're welcome to read my book, "The Insider's Guide to Metastatic Breast Cancer" which is also available as a complimentary .pdf. For information, please visit: insidersguidembc.com/about
Hi, thanks for your reply! I had a liver biopsy about 6 weeks ago to check for cancer status and it remains HER2 positive. The bone directed therapy you mention hasn't been discussed with me, should it have at this point? I'm taking prescription vitamin D and have been told I will be taking letrozole, I was on tamoxifen before.
I saw on another post that it would be beneficial to have genomic testing, would it be wise to discuss that with my oncologist sooner rather than later?
Apologies for a barrage of questions, I find comfort in resolution.
cazlav, if you have bone mets (as per femur), bone-directed therapy such as Xgeva (Denosumab/Prolia) or Zometa are standard of care. This is something you should pursue. Definitely Yes to testing for germline and tumor mutations, sooner rather than later!
Is your cancer triple positive? If you are HER2 positive, normally you would not be taking hormonal therapy unless your cancer is also hormone receptor positive. A bit confused as to why you would be taking letrozole unless your cancer is HER2+ and Hormone receptor positive.
It's nice to meet you. I have Mets to the lungs and am Her2- and Hormone positive. I am on Ibrance/Letrozole. There are many treatments available.
We all hope for a drug that can make cancer a chronic disease. It sounds like your oncologist has determined a treatment for you. We are all here to hold your hand while you navigate the ups and downs. We all have good and bad days. We worry when we have scans or when we have to change treatments. Please come back. Blessings Hannah
Thanks for your lovely reply, I will be here often I think from reading these positive and encouraging posts!
Caz — I’m sorry but glad you found this board. There are helpers everywhere.
The weeks after hearing this diagnosis are incredibly hard. My head pounded. I was frightened and so sad. Then, like many of the women here will tell you, I realized that I wasn’t dying right away. I’d received terrible news but not been told I had 6 months to live.
As odd as it sounds, once I realized that, my mood improved fairly quickly. I’m 2 years post diagnosis and Ibrance has worked so far. I regularly bicycle and do my usual things. I wound down my law practice in December as I was nearing that age anyway. I’d been cutting back on working for at least a year and haven’t regretted it at all.
We’ve traveled. If not for covid, we would’ve been in San Sebastián Spain in April.
What I’m trying to tell you is to hang in there. This period is rough. But with good treatment and loving support — including the members on this board — you will learn to exhale.
I’m not naive. I realize what I’m up against. I hurt for other members who have progressed. But you WILL find a way. You will learn to embrace the good times ahead. You will find a way “to be present in this moment,” as trite as that can sound.
I take Xanax occasionally for anxious periods. Marijuana is legal here. I find the low CBD tincture — just a dropper under my tongue — helps if my mind races at nights.
I also found a counselor I speak with now and then. I can more openly share my concerns with her than loved ones.
Hi! I’ve been on Herceptin/Perjeta for 4 years today! Yea! Anyways I also know someone at my Center who has been on it 6 years. We’re both 1st line of treatment...😀...I guess what I’m trying to say is. Sorry you’re here...But at least this protocol is known to work long term. After the first year it just becomes a chronic illness ( pain in the butt😂)
Thanks for your reply. It's very reassuring to read of your post and you being 4 years on with the treatment I am receiving. I hope it continues to work for you.
I am a 15 year survivor of her2+ mbc, mets to liver. I have been in some type of chemotherapy most of that time. It been rough, no lie, but Gods grace is sufficient. I just finished up a clinical trial which held the Mets stable for one year. When growth was shown in March of this year via CAT scan, a new treatment had just emerged called Enhertu and I am on that now. You have a lot of treatment options and I pray you will respond quickly and get the report, "no evidence of metastatic disease".
Hi, thank you for replying. Wow 15 years, that's exactly what I need to hear at the moment! I will remind myself of your post when I'm feeling down. I wish you continued success.
Hi Caroline. I'm also fairly new to this forum. I was diagnosed MBC in February of this year. I was in a fog for months after the diagnosis. And much like someone else mentioned above, once I realized I wasn't "dying right away" I started to have some peace with my new normal. And seeing how the women on this board are thriving with this disease gives me so much hope for my future. Welcome to the group ❤️
Hello 😊 welcome and sorry you have had to join us. I’m on the haven site too but haven’t visited for a while. I think our paths may have crossed there.
I have bone mets and liver mets were found last august. I’m hormone positive and her negative but I’m having a liver biopsy next week to check the status of the cancer as it hasn’t been responding to treatment. And the oncologist thinks it may have changed it’s status.
I was treated in early 2016 for primary bc and mbc was diagnosed in early 2018. Hip pain and back ache was a cracked vertebrae caused by the mbc. I was told that the pain was arthritis but as it had taken my a year to get referred for the primary diagnosis I was a bit pusher with this one
It’s a horrible shock to learn that you have mbc but I hope you will be reassured by the ladies on this site and their wonderful support and breathe of knowledge. We all know what it’s like to have down days. It’s a great site for sharing the victories and defeats of this disease. 😊
Hi Caroline. My name is Caroline too and I was diagnosed with MBC Her2+ in March 2015. I initially was on Abraxane, Herceptin and Perjecta. The Abraxane was stopped after 7 months. It's been 5 years since my diagnosis and I am feeling good! PTL! I do receive Herceptin and Perjecta treatment every 3 weeks and I am so happy this treatment is working. Stay encouraged and positive!
Hi caroline, thank you for taking time to reply. I find your post very encouraging and I'm pleased to hear you are feeling well on your treatment. I hope in a year or so I will be able to say the same.
I’d like to echo the good information and hope you’ve received. It’s rough hearing all that over the phone. I might have passed out! You made the right choice not to go into stats over the phone. Everyone’s story is different, there are new drugs all the time, and it’s better to be face to face, heart to heart, with your doctor for those emotionally charged conversations. Hope you really like your doctor. All the best and keep us posted 💕
Welcome! Sorry for your recent news. Happy to have you join this great group. Take care!
Hi Caroline,
Welcome! I'm just sorry you are on here. None of us wants to be dealing with this disease, but this site helps make it more manageable as we can talk with others who are going through a similar situation. It must have come as such a shock to receive your diagnosis after you thought you were cancer-free. I was 39 when I was diagnosed with metastatic breast cancer in 2018, so we are similar in age. It is not something you expect in your 30s, is it? I always assumed it was older women who generally developed breast cancer. I hope you are able to manage well with your treatment and that it helps stabilise your disease for many years to come. I am hopeful that there will soon be a cure for us.
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