Hi
I’ve been a little worried this past few days, doing to the waiting for results of a biopsy…
I was thinking, can anybody share their positive story of survivorship? Time from MBC diagnosis, cure, type…or just few words of encouragement for the newly diagnoses?
I was diagnoses with liver and bone metastasis in April 2022… Still here…and hope to live way longer!!!
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Hi
Try not to overthink which is hard I know but there are lots of long term survivors they do happen !
I met 3 ladies yesterday in a support group
Lady 1 had breast cancer with lumpectomy anx radiotherapy in 1995 and no reoccurrence since
Lady 2 breast cancer with lumpectomy in 2001. Reoccurrence same breast 2021 she had a mastectomy & chemo and just had an annual check up all ok
Lady 3 breast cancer who chose double mastectomy in 2002 no reoccurrence
The waiting is unbelievably hard one day at a time
Good luck xx
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Hi @Amel
I haven’t posted on here for a very long time but your post caught my eye on the summary of posts this morning.
Mine is a long story. I was diagnosed denovo stage 4 MBC with spread to the bones & nodes in December 2012 so just over 11 years ago. I was told that I was ER+,PR+ & HER2 negative and ductal invasive breast cancer. No surgery to remove original breast tumour, it disappeared after a year with me on Tamoxifen & Denosumab & Zoladex. 2 years later liver metastases joined the party! At this point, a liver biopsy showed I had changed to HER2 positive (yes, it happens) so I was put on herceptin. 17 different hormone, radio, chemo, immuno & targeted therapies later, and a trial at the Marsden, I am still here & strangely enough, feeling the best in 11 years. I’ve lost my hair 4 times, changed back to HER2 negative and added lung mets. Thankfully though, I have been extremely tolerant of most of my treatments and not suffered too badly from side effects. I was 44 when diagnosed and now 56 in a month. I retired in 2017 from my lovely job as a school administrator thinking I wouldn’t have much of a retirement but still here. I don’t really do much different from when I didn’t have MBC but try & keep as 'healthy ’ as possible in the circumstances. I am very lucky to have amazing support from my husband, family & friends - not everyone has that. Last year I broke both my femurs, 7 weeks apart, and we (me & my onc) learnt that Denosumab should not be given for more than 6 years max. I had been on it for 10 years at that point & it was quietly working against me, making my bones brittle. There are no statistics on Denosumab; I had started it a month after it was licensed in the UK. We are still learning.
There, I said it was long! Hopefully you haven’t fallen asleep but have seen that there is indeed hope with MBC. Which treatments are you on at the moment? I hope it is not causing you side effects & any problems.
Please feel free to ask any questions. Take care of yourself & I wish you a long & happy life.
Helen x
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Thank you very much for your story, it was really needed! You are amazing and strog!!
I did ribociclib +letrozole in my first line of therapy, for bones and liver metastasis (I was completely full of metastasis). I had three collapsed vertebrae and mets all over bones and liver. I couldn’t move anymore, and stay at the hospital. 13 months after, my PET was complitely negative, the therapy worked really well! Unfortunately after few months afgain I had a liver recurrence and I’m am now on Capecitabine. I handle it really well, and fortunately is working on my liver. In April we will see from new PET if it is working on my bones as well. I’m having a bone biopsy to see all the mutations, in case I need a different therapy.
My original tumor was er+ Pr- Her2 negative, in 2018, age 34. I had recurrence in 2022.
Now I feel really well again, exercize, doing house work, swim…I’m back to normal life, with some back pain off course. But I’m happy because in 2022 I first though I would never walk again and die in a month!
But now I have to admit that every scan I’m so terrorized…
Your story give me such a good hope, and calm me down in a bad moment!
Also good to know about Denosumab,
I really didn’t know, and I think is a very important things to keep in mind. I also read a new study that suggest it every 3 months rather than monthly.
So thank you again, and best wishes for everything!
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Omg you are amazingly strong. You have given me a bit more hope ive got secondary breast cancer 66mm the cancer in my breast but has gone with 8 cycles of capecitabine. Im just on phesgo and denosumab, ive had radiotherapy and just had epidural in my spine for the pain.
I was diagnosed in November 2022 and thought that was it.
So i hope there is hope i have a 17yr old son who i want to see grow up. Ive just had the worst 3 day’s since this all started but today ive just changed and feel so much better and now reading your story makes me feel even better. Xx
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Hi Amel,
It is all scary isn’t it and I think it’s a good idea to hear positive stories.
After 10 years free of cancer after my primary dx I was dx with extensive bone mets way back in 2010. So I have been living with MBC for almost 14 years later this month 
I’ve had radiotherapy at the start and have been on letrozole and zometa for most of that time.
I hope that gives some of you a hopeful boost xx
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Wow 14 years! That’s amazing!!
Thank you very much for your story, yes I feel like it is good to ear some good stories, other than terrible statistics on google search!! I was just starting to get too bombed out…I needed some hope!
Best wishes for many many more years in front of you!
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Hi,
Its interesting that Letrozole has work for you for such a long time. I was told when I started it would at nest be effective for 2 years. My oncologist is not an upbeat person.
Anyway i’ve been on it for 16 months and last scan was reported as stable. CT scan as hospital doesn’t have a PET scanner, i’ll never be told its “inactive”.
The joys of living in the North of the country, less access to the latest technology, and no access to a center of cancer excellence.
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I’m glad it is working for you and pleased your scan was stable, it’s always an anxious time waiting isn’t it. I’ve never been given an expectation of how long letrozole would work and for me it has been my little wonder drug. I hope it will work for a long time for you too
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Hi to all of you. Yours stories have given me some hope. I’ve been treated for a chest wall secondary and bone mets for over a year now and get worried before each PET scan and particularly now as the last one showed a slight progression. My treatment is unchanged at the moment (palbociclib, denosumab and letrazole as well as Adcal). I’m feeling quite stressed but reading your stories has cheered me up. We are all on our own journey but wish you all good news at your scans and thanks for sharing.
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Hi everyone, thank you for sharing your journeys. Sometimes you have to read these stories to remember your not alone & treatments do work and can do for many years.
I have chest wall and lung mets since Sept/21. We may have downs from time to time, but there will be ups too. We should plan nice things and do things that make us happy. And importantly keep stress & negativity out of our mind.
Wishing you all the best xx
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Hi ashac93, I also have lung nodules, what treatment are you on?
Have your nodules resolved? I’m only nine months into this.
Hiya @Deb_M
When diagnosed I was on palbo & Letrozole and this was all helping keep lung mets stable. I even had some reduction. In the summer 2023 I had progression in the chest wall so had to then go onto oral chemo - Cape. I was on this for 3 months, it was again shrinking the lung nodules but not the chest. Since Jan this year I am on IV chemo.
Which treatment are you on?
@ashac93 I am on Enhertu and pertuzumab, it’s my first line. My PET scan in January showed all nodules had metabolically resolved.
Some nodes still show on the ct, I’m not sure if those are benign ones, I’ve never had a biopsy on the lung nodes.
@Deb_M That is AmaZing!!! I’ve never had a biopsy either on the lung nodes. Thanks for sharing, gives me hope.
I am ER-positive & HER-negative. Are you triple negative?
Will you continue the same treatment do you know? how are you finding it?
@ashac93 i’m HER2+ only. I am on a Destiny breast trial so I believe I stay on it as long as it is working.
It’s a lot of additional testing, ct scans every six weeks, echocardiogram and ECG every three months. I’m not sure how long that goes on for
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@ashac93 I find the treatment quite tolerable. I work full time, I’m more tired the week after treatment but I just go to bed earlier. Occasionally some stomach issues but nothing major.
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@helen44 …just came across your post as recently joined the forum.
Its interesting what you say about Denosumab. I had a similar discussion with my oncologist, asking how long i needed to be on it for as i had x3 pathological fractured ribs. Following this we discussed going from 4 weekly injections to 8 weekly with a view to 12 weekly. Since this, i have now fractured my ribs opposite side, but due to a fall this time. Think i need a chat with her about this again. Especially as we never, well i havent anyway, had any bone scans. Interesting, i definitely think this needs more research.
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Yes the Denosumab things was very useful, I think it is important to know, especially now that people live longer with new improved treatments
@Deb_M Hiya, you went on such a brilliant trial. I hope I can one day. I’ve stopped working now but do miss it. Glad to hear your side affects are minimal.