Living? with metastatic breast cancer of the lungs

[catalinawoman]

I am 69 years old. I was diagnosed with metastatic breast cancer of the lungs a year ago. Sometimes I feel all alone and that nobody in my circle understands the nature of my diagnosis.

[Hidden]

Dear catalinawoman,

I'm so sorry for what you're dealing with....

I see you just joined this group, so I'll say Welcome, I think you've found a great place to share information and find support.

I think you're far from alone, there are so many of us here in this community who feel the same way.

So many are dealing with fear, depression, and anxiety....which can be invisible but huge issues.

One thing I often read...and experience...is that we look fine, are carrying on, etc....And then people think we ARE fine, but we're not! We've got this awful disease but what we also are is strong and brave!

And so many seem not to understand what "Stage IV" or "metastatic" truly means. Even if we are in a period of stability, or even "NED", we've still got it...

Again, I'm glad you found this community. There are no doubt many others here who can relate to what you're dealing with.

Best,

Lynn

[Hidden]

No, like Lynn said, you're not alone feeling that way. It's here in the group where you'll find understanding and see that you're not alone.

Hugs!

Anja

[catalinawoman in reply to Hidden]

Thank you.

[catalinawoman]

I am on hormone blockers, Arimidex orally and Faslodex injections.

[Hidden in reply to catalinawoman]

catalinawoman, that sounds like a great combo of meds, so many people do well on that or similar for a long time! I hope it works well for you and gives you a long duration of good living!

Best, Lynn

[catalinawoman in reply to Hidden]

I took Arimidex when I was first diagnosis in 2010 for 6 years with no problem just like now. I also take Boniva for the osteoporosis.

[diamags in reply to catalinawoman]

I've been on this for 6 years! I hope it works for you as well as it has for me!

[catalinawoman]

I took Arimidex when I was first diagnosis in 2010 for 6 years with no problem just like now. I also take Boniva for the osteoporosis.

[Sunnydrinking]

Hi

Welcome to our group. We all understand how you feel.

I find this group invaluable, it’s so important to me. I’ve always been given so much helpful advice and feel the love and support.

We all have good and bad days. Living with MBC is like a full time job and very challenging at times and it is even more difficult during COVID with travel restrictions etc.

Take care

Jo xx

[Hidden]

Hi Regina,

Welcome to this group. I hope that the feelings of isolation will go as you engage more in this group. It is common for us to feel alone and misunderstood, as people are expected to receive treatment and then followed by the all clear.

The only other person I know with metastatic breast cancer is one of my oncology nurses. I’ve also found it hard as I was diagnosed de novo in 2018 in my 30s, so it felt like my life was ending before it had even begun. I don’t know anyone personally with this disease who is my age. All the women I’ve known with breast cancer were much older and they all had early stage cancer. So even hearing about their experiences hasn’t helped much. They can look back to a time when they thought their lives were hanging in the balance, but they are now disease free. They have put it all behind them. I have to live with this disease.

Please feel free to join in with discussions, to ask for help and support or to just vent. We all need an outlet where we can feel understood.

Sophie

[Hidden in reply to Hidden]

Hi Sophie! I’m not as young as you but I’m in my early 40s and have 2 young kids. I feel the same as you..being so young with this disease and not having anyone to relate to! If you ever need someone to chat with I’m here! Mandy

[Hidden in reply to Hidden]

Hi Mandy,

That's so kind of you to reach out to me! Thank you so much! I was 39 when I was diagnosed, and am 41 now so still similar in age to you. But I had probably been living with this disease for several years in my 30s, if not the whole decade, as this doesn't just develop overnight. Many people dread growing old, but it's something I long for! Do you ever get elder envy too?

How old are your children? Do they understand what you are going through?

When I first met my oncologist she asked if I had any children and if I wanted any. I don't have children, and had no plans to have any. So losing my fertility with this disease was not traumatic for me. I can't imagine what it must be like for women who long for children, but have that taken away from them by cancer.

Enjoy your day!

Sophie 🌷

[Hidden in reply to Hidden]

Sophie, I think I was stage 4 the whole time too. My initial tumor was closer to my armpit and they misdiagnosed It for a long time telling me it was just a cyst. When I finally found out it was invasive lobular it had already spread into my breast and into several lymph nodes. I turned down chemo and kind of regret it. I never felt well after they said I was in remission so was misdiagnosed again when I said I had back pain. They said it was arthritis. Now it’s all through my skeletal system. I had my ovaries removed too because I had all kinds of problems with the ovarian suppression shot and they found cancer in my ovaries and Fallopian tubes too. I’m on letrozole and my first month of ibrance, 100mg. I already have neutropenia and feel like a pincushion with constant blood draws. I feel like they should’ve just started me on the lowest dose.

My kids are 8 and 12 and they don’t know all the details. I don’t want them to live every day in fear like I do! I can’t do that to them. I guess I’m hoping for a miracle cure or for my supplements to I help put me in remission so I never have to tell them the horrible details of this disease. Maybe I’m living in a fantasy but I guess it’s good to think positively!!

What meds are you on? What was your original diagnosis?

[Hidden in reply to Hidden]

Hi Mandy,

I think younger women like us are at a disadvantage. Not only are mammograms not routinely offered to women in our age group, but when we do complain to our doctors about symptoms they are brushed off and not always taken seriously. I went backwards and forwards to the doctor's on a number of occasions with symptoms, but they never seemed to take me seriously. It wasn't until they heard the word "breast lump" that they took me seriously. Even then, I was examined and told to return in a month, as the lump may have been "hormonal" and just linked to my menstrual cycle. It was hormonal, but not what they thought!

I'm sorry to hear of how you were treated and ignored when you were clearly ill and in need of treatment. I wouldn't blame yourself for refusing chemotherapy. There is no way of knowing whether that affected your diagnosis or not. Many early stage cancer patients undergo chemotherapy and still end up with metastatic disease years later. You did the right thing having an oophorectomy. I have refused that so far, but if there is any spread to my ovaries I will have them removed in a heartbeat. Actually, I would want a full hysterectomy.

Can you ask for a lowering of your dosage? You must be feeling exhausted with the neutropenia and constant blood tests. Our medical team needs to look at us as a whole, not just a list of symptoms. We still need to function.

I don't think you are living in a fantasy at all! We have come a long way in metastatic breast cancer. Years ago, this was an automatic death sentence. Now we have the chance of living for many years. Some women have even achieved complete remission, so I wouldn't give up. I know I won't. I can certainly understand why you have not told your children all the details. It's the same with my dad. He knows I have breast cancer, but he doesn't know that it's metastatic. We lost my mum to non-Hodgkin's lymphoma in 2004, and it would devastate him if he knew everything. I don't think he would be able to cope, so I am shielding him.

I am ER/PR+ HER2- with the PIK3CA mutation. I have been stable for 24 months, since my first CT scan following the start of treatment. I'm on letrozole, zoladex and zometa, along with off-label drugs and supplements that my integrative doctor prescribes and recommends.

Sophie

[Hidden in reply to Hidden]

Sophie, I’m so sorry you lost your mom! I lost my dad to leukemia in 2012. I think after we lost him I feared cancer and thought about it way too much..and 5 years later I was diagnosed with lobular.

If I’m asking too many questions please tell me..but I’m also curious what supplements u take because I Also take a lot other than the letrozole and Ibrance. I take probiotics, omegas, liposomal vitamin c (3 times a week),turkey tail mushrooms, curcumin, green tea, and a couple others. I also take floressence (which is similar to essiac tea.

Do you have a significant other? Do you work full time? I’m now homeschooling my kids full time. They keep me going I’m so glad you understand why I’m shielding my kids. It’s also nice to hear you talk so positively about our diagnosis. I try to look at it like we are dealing with a “chronic illness” but sometimes my mind goes to dark places. My back pain is a constant reminder and lately I’ve been going in every week for a blood draw.

So are u considered NED? How wonderful if so! I found out I do not have the pik3 mutation. Doesn’t that open up some other options for you as far as meds?

I’m glad I’ve found this forum and someone my age to talk to!

Have a nice evening! Mandy

[Hidden in reply to Hidden]

Hi Mandy,

I'm off to bed soon, so I'll get back to you tomorrow.

Have a good evening,

Sophie 🌷

[Hidden in reply to Hidden]

Hi Mandy,

Thank you! Sorry to hear about your dad too. It is devastating to lose a parent. I was afraid of cancer too, but I didn't think it would happen to me as I lived a fairly healthy lifestyle and didn't have any underlying health conditions like my mum did. She had high blood pressure, atrial fibrillation and she was also overweight.

You're not asking too many questions! I just hope I can answer them all. I'll private message you after I have sent this message letting you know what else I take in addition to the letrozole, zoladex and zometa.

I have been married for more than 18 years to my wonderful husband, Kim. I run my own pet sitting and dog walking business. I'm not full-time right now, as my business has taken a hit during this pandemic. One of my clients is a nurse at a local hospital, and she said there were positive cases in her ward, so I've stopped walking her dog for the time being. It's the same with some others. All my house/pet sits from March-June were cancelled, as people could no longer go away on holiday. So I was not required to stay over with their pets. But I have enough business to help keep things ticking over.

My oncologist is always so positive about my job and tells me it's the best job in the world and to keep going! I was tempted to throw in the towel when I was diagnosed as I didn't see the point of running a business if I didn't have long left to live. But I no longer feel that way. My job helps me feel normal and I can focus on something other than this disease.

Homeschooling your children must be so rewarding, but a challenge too I imagine. But getting to spend extra time with them must be lovely.

I also consider this disease to be a chronic illness. Not everyone feels the same way, but I find it fits my situation and it's what my oncologist calls it too. Give me "chronic" over "terminal" any day of the week!

I've never been told I am NED. Perhaps it's more accurate to say that there is no evidence of active disease, rather than no evidence of disease. It's still there, but it is stable and hasn't progressed in two years. A lot of it has shrunk. The breast tumour can no longer be easily seen on the screens (I couldn't see it either). Before I started treatment I could feel "activity" in my body and that scared me, as I was worried that the longer I waited to start treatment the worse off I would be. It took three months from the time I first went to see my GP until I started treatment, as I had to undergo so many tests and procedures (CT scans, MRI scans, PET CT scan, three biopsies on various parts of my body, blood tests, the list goes on).

With regard to the back pain, there are a few things you can do about that. Do you have metastases in your back? Bone strengthening exercises can help, along with other gentle exercises you are able to do. When I first asked my GP about safe exercises that would be gentle on my bones she suggested cycling and swimming. But I like to workout at home, on my cross trainer, and healthrider. I also walk for hours each day. I take Adcal D3 and vitamin D+K2 spray twice a day to help with my bone health, and I have zometa infusions every 12 weeks. I also had some radiotherapy to my spine in August 2018 which really helped with the back pain. I also add Epsom salts and essential oils to my bath every night, which will help soothe your aches and pains. I try to eat lots of cruciferous vegetables too (kale, cauliflower, broccoli).

When I had genomic testing back in January I was told I have the PIK3CA mutation, which means I am a candidate for piqray (alpelisib). But as my current treatment is working, my oncologist wants me to stick with that. I am happy with that decision, as I don't believe in switching when something is clearly working. I don't think I would be able to go back to this treatment if I stopped it.

Right, by now you are probably bored to tears! Sorry for the long message. I will go ahead and private message you so that I can answer some of your other questions.

Take care,

Sophie

[Phillipians4and6]

Welcome! We’re all in this unwanted sisterhood together. There are many positive stories on here and awesome women to help you cope. Sending positive vibes your way!!!

[hdhonda]

Dear Cat,

You now have some more friends that will be here for you. Welcome to the family. People don't know what to say, so they say nothing, but it doesn't mean they don't care. Be honest with them. Let them know you need to talk. They will be there for you. Best wishes. Blessings Hannah

[Hidden]

Hi Cat

I'm not long on this board, April I was diagnosed with mets, I'm 39. I find this board a great source of comfort, it's like stepping into a room full of friends, you can say how you feel without being judged and someone, if not everyone understands how you are feeling.

I hope you find it as consoling here as I do.

Take care, Caroline.

[mariootsi]

Welcome! You will not feel alone here. We are here for each other. It is a Godsend for me... hope it will be the same for you.

[PJBinMI]

I sure understand that feeling that others really don't "get it." I'm a long timer with mbc, with mets from the time of initial diagnosis of cancer in 2004, One of my ways of coping was finding out all I could about BC and MBC. I went to Barnes and Noble right away and looked at all the books there about BC, looked at tables of contents and scanned a couple of pages of each book and bought three that just seemed to speak to me the most. One was Susan Love's Breast Book, which she updates regularly and is kinda the Bible of bc for many of us. The first few years I attended bc conferences whenever I could and met other women with mbc which was just wonderful! I also went thru the training program for bc patient advocates that the National BC Coalition puts on , about twice a year back then. Those of us who are older have an advantage as our body's cells tend to be less active than they were when we were younger. I was diagnosed the month of my 58th birthday and now I'm 74 and sometimes it's hard to know how much of my physical changes are cancer related and how much is just plain old aging! I'd rather blame cancer, LOL. About six months into treatment I learned that there was a small self led mbc group in the town I travel to in order to see my onc. That group was amazing! But the social worker who had been referring new members to it left and nobody picked up the reins on that so the group kinda fizzled out. It was really helpful to me, though, to meet other women with mbc. I've not heard of anyone being on Armidex and Faslodex at the same time. Those have been the first and second meds that those of us with hormone receptor positive mbc are prescribed since before I was first diagnosed, with Armidex and Femara (Letrozole) often being a favorite of most oncs and one or the other prescribed initially. They are very similar. If you haven't gotten a second opinion evaluation from a bc specialist onc, you might want to do that. The top tier of cancer centers are those that have been designated "Comprehensive Cancer Centers" by the National Cancer Institute. There is a link to a list of those on the homepage of this group, on the right side of the page under "resources." Those have very specialized oncs who both do research and see patients and they offer both treatment and second opinions and most insurance will cover that. Another suggestion.....if you have a family member or close friend that you could take to onc appts with you, that could be helpful in terms of having somebody who either "gets it" or is close to that and somebody that you can talk with about this cancer. My husband has gone to any appt with me when we expect anything new to come up. I joke that his first wife trained him to be a great caretaker as she had an aggressive form of MS. He was good to her and their two daughters and understands more than most what it means to be there for his wife. My daughter has gone to some appts too and I have invited my two grown step daughters but so far they have declined, though they have been supportive and we've not had step family drama, thankfully.

I will shut up now,, lol!

[AuntyJane]

Hello and welcome. We are very similar - I just turned 66 and also diagnosed with mets to lungs a year ago and now on Arimidex and Faslodex. Good luck to all of us...we are here for you and each other.

[catalinawoman in reply to AuntyJane]

Hi. I'm actually in Tucson, AZ. I used to live in Catalina, AZ hence the moniker.

I was starting to think I was the only person with this diagnosis and on these meds.

I was diagnosed in August of 2019 although i believe that I could have been diagnosed a year earlier.

When were you diagnosed? Do you have issues with your lungs at this time?

I have so many questions but don't really know where to start.

Always, Regina

[AuntyJane]

Hi Regina, My history is quite extensive -first diagnosed 26 years ago, reoccurance after 15 years then after another 10 years PET scan showed mets to lungs. Fortunately lung nodules are small and slow growing so I feel fine. However COVID being a respiratory virus is a big concern since it’s in my lungs. I had severe neutropenia on Ibrance so my doctor put me on Arimidex in May along with Faslodex which I started last July. Happy to answer any other questions. Thanks, Jane