I had breast cancer 11 years ago at the age of 64. It was caught very early by routine mammogram and the surgeon was just going to remove the very small lump. I said I would feel safer if I had a mastectomy, and he agreed to that.
Now the cancer has come back, this time as many small nodules scattered throughout both lungs. Unfortunately, because I am an asthmatic and blamed my increasing shortness of breath on that, the cancer was not picked up until I started getting bad chest pain, and already it was stage 4, and incurable. It had caused pleural effusion in the left lung, which made me feel like I was drowning, and had to be drained every 2 weeks. Oncologist gave me 1 - 2 years.
Oncologist started me on Ibrance and Anastrazole 4 months ago, and now I have gone 5 weeks with no need of a drain yet. yippee!!! I am feeling a lot better although Ibrance makes me tired.
I am glad I found this website as I don’t feel so alone now.
Best wishes to everyone.
Written by
TwinniesMum
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That’s amazing news! I’m sure your oncologist was giving you the facts but I’m not sure how I would have handled that!! You must be a strong lady
I’ve been on Ibrance and Femara since January 2020 and the huge lump underneath my collar bone has reduced considerably and my right arm has stopped causing me any discomfort or pain. Latest MRI shows stable/reduction with pesky ‘bits’ still showing in my liver and nodes - but I’ll take that! Due to low neutrophils- I was reduced to 75mg this year (I really didn’t want to reduce) but was told your body needs it.. however, this dose really agrees with me. I’m less tired and I don’t think about my condition as often as I used to and I’ve been having less pity parties! I’m hoping (and praying) to be a lucky one and remain on these meds for a while.
Glad you are improving. My pleural effusion has gone after a year on ibrance and letrizole. My MBC was picked up when lymph nodes pushed through chest wall. The cough and chest issues were attributed to a hiatus hernia. This is a great community.
Hello, TwinniesMum! I am so sorry that your earlier bout of cancer was not your last. But, since you ended up in the MBC club, I am so glad you found us on this site. When I was diagnosed de novo in July 2020 (with, so far, only bone mets), I was convinced I only had 2 years to live. I found this forum after I finished with 4 chemo infusions (that I never should have done, as my first oncologist intended to treat my cancer the same way regardless of stage and continued on with the plan despite my PET scan only days before my first scheduled infusion showing bone metastasis) and started with a second oncologist (right before my 4th infusion) who switched me to Ibrance and Letrozole -- which I started in late September. Given my experience with the first oncologist, I wasn't so trusting of my second one or hormonal treatment (which I knew nothing about). That is when my research went into high gear.
Around this time, I attended a free NYC Metastatic Breast Cancer conference online -- that I found out about THROUGH this site. That was the first time I was hearing about ANYONE with MBC living past that magical 5 year mark. And that is also what led to me finding a home within the HealthUnlocked forum. Once I got "here," it was the first time I was reading that many women are doing really well with treatment, and it was the very first time I started seeing people talking about 4, 6, 8, 10, 15, and even 18 years under their belts. Let's just say, I was filled with hope and optimism for the first time. And I would say I am in that positive headspace at least 95% of the time now. Other women on this forum will attest to the fact that I often talk about a "cure" ... meaning, I am counting on science to come up with answers in time for us. That conference I attended made me extremely hopeful, as the entire first day was focused on research and the pipeline of new drugs on the horizon. Soooo... beyond my focus on what is coming down the pike in terms of promising new therapies, etc., I seek out information, support and friendship in places like this -- every day. It has made ALL the difference for me.
I am sorry that Ibrance is making you tired. A lot of other women on (and off) this site contend with that as a side effect. Lucky for me, that isn't something I have needed to deal with. I've done great on Ibrance (and Letrozole and Zometa), with only minor side effects that do not affect my daily functioning (like earlier hair loss). (And all my scans since September show no progression.) So happy to hear that you haven't needed your lungs to be drained recently. I hope that continues for you! In the meantime, I wanted to welcome you.... and tell you that I "see you." Here if you need support or a virtual hug.
Hi MaryCosThank you for your welcoming and positive message. I am so glad you are doing so well. I try not to think about my estimated time left of only 1-2 years, and now that the pleural effusion seems to be drying up (6 weeks now since last lung drain, and I am feeling so much better and starting to take an interest in my hobbies again, I am aiming for many more years - who knows.
Ibrance is amazing! So happy you’re feeling better! And I think many here will agree with me that there is always hope that another fabulous drug will be found in 1 to 2 years....and who knows how accurate your oncologist’s estimate was....so many on this site are living many years after their diagnosis!!!
Welcome and glad you found us. This is an amazing forum to get information and support. Seems like you are doing well so that is great. I think you will make it way past 2 yrs.! And there are reports of new drugs on the horizon. Take care.
I'm 75 and have been dealing with MBC since the month of my 58th birthday. Learning as much as I can about bc and mbc has been my way of coping, lol. It's my impression that the 11 years between your early bc diagnosis and the lung mets diagnosis likely means that the cancer cells you are dealing with are not rip roaring fast growing aggressive cancer. I don't have lung mets but I have lung damage and one of the best things my pulmonologist has recommended to me was going to pulmonary rehab. It's alot like physical therapy but is staffed with RNs and had a doctor on site all the time. The PR place I went to was a very happy place and encouraged us to get to know one anther. There were tread mills and other exercise equipment, clear space for other exercise, lots of places to put oxygen tanks and breathing equipment. The patients there had a wide variety of lung conditions and some were even waiting for transplants. I don't know if that would be helpful to you b ut if it sounds at all appealing, ask your docs about it. I think alot of us, and too many oncs, find info about median survival statistics that makes us expect to not have much time left. But those averages include people with very aggressive cancer, people with cancers that don't respond to treatment, and people who for whatever reason just cannot follow a treatment plan. I suspect that if somebody got data about those of us that find both medical/scientific and support groups on line, that we probably average much longer than those who don't! We have the inner resources to be curious and seek information, and we have learned to use the internet. When I was new to MBC, after a few months on line, I heard of some 20 year survivors and now I am just under 3 years from that myself. One thing I do often suggest is seeing a bc specialist onc, for a second opinion if you are too far away to have one as primary onc. If you are in the US, the top tier of cancer centers here are those that have been designated "Comprehensive Cancer Centers." They are listed on the website of the National Cancer Institute and there is a link to that list on this page, on the right side closer to the top, under "useful resources." Those BC oncs are the ones who usually give presentations as major bc and other medical conferences and they see patients and do research. My own onc suggested I do that right after initial staging found bone mets. I didn't really feel a need to do it, but am glad that I did. My husband and grown daughter went with me and as that bc onc talked with us after examining me and reading all my scans and other records, I could feel their tension leaving the room! She was sooo reassuring. Not that I would be cured but that I had a long time left. And often we do. Being older helps! Our bodies have slowed down and that includes those pesky cancer cells, lol! Seriously! I hope you will be here for a long time! Sending love and prayers......
Welcome! Seems like the Ibrance and Anastrazole is working well for you! I’m on Ibrance too and have been doing well the last 14 months. I wish you continued success and glad you joined the group! Cindi
That sounds very positive ! Hopefully more good news from you in the future !
Welcome aboard. Sorry to hear that you had pleural effusions, not nice at all. I too had my lung drained when first diagnosed. It started to fill again but the Ibrance soon put a stop to that, and 24 cycles later, still no repeat of the effusion. I hope you find the fatigue settles after a few months too.Clare
Thank you for your very encouraging reply. After four months spent having lung drains every two weeks I’m starting to feel things are changing as it is now six weeks since the last one. I’m so happy that Ibrance is working so well for you and I really believe it will be the same for me.
Greetings: Sister, and yesssss warrior. No one can know when we will leave this physical earth. I was told in 2007 from a 33 year experienced Oncologist that I wouldn't live to see 2008.🙃 I have been NED for almost 14 years. I don't fear physical death. I continue to live each day with as much joy as I can muster, even during these challenging times😇 I thank GOD for overriding my Oncologist' diagnosis/prognosis. When it is my time I pray I will not have long suffering, and I pray I will be ushered into the Pearlie Gates of heaven. 😊 I hope/pray you will have way beyond 2 years to spend with your loved one's 😀 We have so many more drugs, and natural protocols available to us, to fight cancer every year.😊 GOD bless you sister, and yesssss warrior.
Thank you so much Sister. You have given me so much more hope. I too believe that it will be God’s decision about when my time on earth is to end, not the oncologists. The name warrior to describe all of us brave ladies fighting this horrible thing called cancer is so apt. Mine has been trying to drown me with all this fluid called pleural effusion - (sometimes as much as two litres in two weeks. Thanks to Ibrance and Anastrazole it seems to have stopped - I never knew that all these wonderful drugs existed, to enable us to have more time. I am trying to be happy and positive everyday, even though it’s hard getting used to living alone for the first time in my life (with my cat named Rainbow for company, since my dear husband of 56 years passed on ten months ago. He had been very ill for the past ten years and I was his carer. I miss him dreadfully - we met when I was only 16 and he was 22. Married when I was 19 and we were very happy all those years. I feel blessed to have had them. I wish you all the very best in your battle dear warrior Sister. 🌹🦋
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Memory books; letters to family for after I pass on (which I hope is a long time)!
Hoping the third time is the charm 
