Hello dear ladies. My name is Saba and I’m here for my mom. She doesn’t speak English. First of all I’m really glad that I was able to find this website:),reading all of your ladies stories and posts give me strength to overcome my anxiety and panic attacks and be the best support for my mom. 4 months ago my mother was supposed to go back home after being in LA for almost 3 years. She was helping me out with my baby. She got her green card and we decided to get full check up before she leaves and boom de novo breast cancer with mets to lungs only. Initially we were told that it looks like stage 2 breast cancer ,she has 2 cm tumour in her right breast and that incidental nodule in her lung that popped up in her MRI doesn’t look like cancer. Her pathology showed grade 2 nonaggressive cancer with no lymphovascular invasion . I don’t understand how did it spread to her lungs when there is no lymphs involvement,not only lymphs but nipple,all breast muscles chest wall everything was clear. With the pathology report doctors were kind of sure that it should be the beginning.We were shocked! I was having extremely bad panic attacks and anxiety. Right now I’m taking Lexapro and it helps me a lot. Now I’m able to control my anxiety and trying to be the best support for her. I’m really scared for her. She is such a blessing. All her life she was taking care of everyone, helping out me and my sister a lot with our kids:((. She hasn’t seen my dad for 3 years now,because of me:(( I’m really scared for her but as I said your posts and your strength,the way you are ladies fighting with this disease change my attitude toward this illness. I’m stronger now for my mom. I’m trying not to google but it says that lung Mets have poor prognosis ,although her oncologist said that because her Mets are only in her lungs and the rest of body is clear,and the spots in her lungs are small her prognosis is fine. Her general health is ok, white blood cells dropped to 3.0 after first month of treatment, her CA-15 was 11 in March and then 18 in last month (still in normal range) . Her last blood work was ok. She is gonna have her next blood work on Friday. Anyway I’m so sorry for this long post just wanted to know if anyone else has lung Mets in this group and how long have you been on ibrance and letrozole ? Thank you 
Supporting my mom: Hello dear ladies... - SHARE Metastatic ...
Supporting my mom
I'm sorry to hear about your mom and I hope the meds will keep her stable for a long time to come.Don't Google symptoms but research scientific studies like PubMed or Elsevier or the Lancet . Those studies are based on facts. I learned that early on.
I have lung mets (pleural effusion) and also Mets to lymph nodes. All stable at the moment after a few lines of treatment failed. Currently I'm on Capecitabine and that seems to work ok in controlling growth....hopefully a long time.
Stay strong for your mom and I wish her full remission.
Anja
Thank you so much Anja❤️. Does pleural effusion different from nodules on the lungs?
Pleural effusion is cancerous fluid in the space lining of the lungs and is pretty serious. Mine is under control thanks to chemo!The lung nodules are different. I have done too and they shrunk also with chemo.
My mother has the same..mets in right lung (plureal effusion) and in lymp nodes.Currently on letrozole and ibrance.she is having shorntess of breath.could this be because of liquid accumulated in lungs.because it was drained before 4 months.
I had a similar diagnosis as your mother. Only I had many Mets in my lungs. I have been on ibrance and letrozole for 4 years 8 month. I also had my ovaries removed. Fatigue and joint pain are my daily struggle.
Hi:).thank you 😘 Wow almost 5 years on Ibrance. I hope you’ll get in fully remission❤️. My mom has 6 small nodules in her both lungs. I hope it will stay at least same for many years with no more spread. She has headaches on and off and also pain in her legs. Did your lung mets disappear or shrink with treatment?
All of them disappeared in scans except one that has shrunk and now stays the same in scans.
Oh my god so happy for you:). Are you following a specific diet? We are Persians and eat rice almost everyday . I can’t convince my mom about the importance of diet. I buy everything organic and make different fresh juices for her with carrots,beats,apples,celery. Whole wheat bread. Walking almost everyday with her for and hour. What do you think about vitamin C shots?I’ve heard it’s very helpful,also talked to alternative medicine doctor,but my mom refused to do that because she scares it’ll make her tumors to grow more. I’m sorry for asking so many questions:((
No special diet. My doctor is a everything in moderation type. He said to enjoy your family’s traditional foods on holidays and special occasions. I have been trying to do a low sodium, anti inflammatory diet lately and it seems to help with joint pain. I take a b complex, glucosamine, and probiotic daily. But they should be approved by the doctor.
Thank you😘😘And what about your blood work,were they normal all this time?
Did you cough or had symptoms of lung Mets ?
I did cough sometimes. When I think back or look back to the months prior to diagnosis the only signs I could think of was I struggled with carrying laundry baskets up the stairs. I also had fatigue. I’ve alway been into big around the house renovation remodeling projects. I would start them and run out of energy quickly. We had just made a big move with big changes in our lives so I had put off making yearly appointments. After the shock wears off and you settle into your doctor appointment and scan schedule. You just step into your new normal and go back to living your life the best you can. After five years I still get up every day shower, get dressed, walk the dog, go for a paddle in my kayak. I enjoy my 3 year old grandson. I use to host most of the holidays and family gatherings. Now I let my daughter or niece do it. I enjoy them more now. And yes there are days when I’m just too tired or my joints hurt to much. Usually at the end of an ibrance cycle. I just sleep in, watch tv or read a book. And that’s okay too. I’ve learned to ask for help and I’ve learned to say no, sorry I’m just not up to it today. Listen to what she needs and what she wants. Let her live her new normal.
Hi. Hope you are doing well:). Did your doctor suggest to remove your ovaries?
The Mayo Clinic reviewed my case. They recommended letrozole, ibrance and ovaries removed. Which I did about 8 months after diagnosis.
I see. May I ask how old were you at that time?
53 still having regular periods.
Wow. Do you get periods without ovaries?
No
Have you had your scan yet?
Hi AK57. So glad your mom has you to support her through this.
I was also diagnosed de novo where, at the start of my staging process, they said they expected it to be minimally stage II and at most stage III. Then they found the bone mets through a PET scan, days before I was slotted to start chemo for earlier stage cancer. I also have no lymph node involvement, so I thought I was in the clear for metastasis... and cried tears of relief when I got this news. But, like your mom, my cancer found its way through my bloodstream somehow.
I don't have mets anywhere but in my bones (so far), so I can't give you any insight on that end of things. But, after I actually DID start on chemo (when I shouldn't have at stage 4)... my second oncologist (yes, I ditched the first) started me on Ibrance and Letrozole. Have been on this treatment since the end of September 2020. Currently on my 9th cycle. I've been stable throughout. Had some things disappear or diminish from chemo and my early months on Ibrance/Letrozole... but now it seems it is keeping me progression free rather than reducing the cancer. Then again, I don't trust my current healthcare provider and will be moving my care to Johns Hopkins in November, when I can switch my insurance.
Many women do exceptionally well on these meds, and I consider myself one of them. I am able to tolerate the 125mg dosage of Ibrance, and my side effects have been minimal. In fact, I feel great.
Make sure to take care of yourself with all of this, along with supporting your mom. xo
Thank you so much 😘. Her biopsy showed no lymphovascular invasion which means lymphs and blood was clear. I don’t know. No family history of breast cancer. Negative for brca 1 and 2. She is ER and PR+ and Her2-.My mom had very obvious symptom which she was ignoring for 3 years. She has been having an inverted nipple for more than 3 years and didn’t pay much attention to that. And I’m really mad at myself for not seeing that. She never had mammogram in her life. She had her check ups every year,but not mammogram. Anyway I’m glad that her cancer is not aggressive and hope she will respond to treatment. I’m hypochondriac person myself and since I remember myself I’m at doctor offices every 6 months and now I have this fear about breast cancer. I’m 39 and had breast ultrasound last week and everything was normal.Right now taking antidepressants and it really helps me otherwise I wouldn’t be able to control my emotions,to work and taking care of my baby. My mom still very active and still helps a lot with my son:). She feels not bad. She is very strong woman. Her oncologist said don’t panic and think about it as a chronic disease. She has medical insurance so we don’t have much options with big cancer centers. I was trying to get an authorisation for City of Hope but her insurance didn’t approve it. She is 64 next year we’ll enrol her for Medicare and maybe with that insurance we will have access to more cancer centers. Her oncologist said her prognosis is fine. I hope in July her scan will show some improvement and we can travel to London and spend time with my sister and dad. That would be really great:).
I also have no family history of BC, and a blood test won't necessarily tell you that cancer is in your bloodstream (like, in my case with early blood work). (And her CA-15 certainly would not tell someone she has BC, as those numbers are LOW!! Good!) But when the lymph nodes are not involved, blood is how it travels to other parts of your body. Like your mom, I don't have those mutations (although I do have the PIK3 mutation)... and I also had an inverted/recessed nipple (along with a terribly deformed breast) --- which has RESOLVED through treatment! I am also ER/PR+ and HER2- ... and grade 2. I also did not see a doctor as soon as I should have, but that it another story.
I am glad that this has prompted you to make sure you are okay with regard to cancer, too. I am sorry that this is so hard that you need anti-depressants... but (as a Social Worker) I am glad you are taking care of yourself in this way. Learning everything you can about MBC helps a lot... so coming to this forum was a wise move on your part. Be gentle with yourself along the way. And don't forget to breathe.
Hang in there, sweetie.
Cos
xoxo
❤️
Sorry to bother you again,I forgot to ask. What type of insurance do you have?
You are not bothering me in the least! I was insured through the Affordable Care Act (ACA), but, with the pandemic and being on unemployment... I qualified for Medicaid. So, currently, that is my insurance. Has been since November.
Is it the same as Madical?
Are you in California? Cause I am in Maryland. They don't have Medi-Cal here. medi-cal.ca.gov/ Instead, I qualify for Medicaid under Maryland's ACA system. That means, I actually stayed with my initial insurance provider (Kaiser), who is also my healthcare provider. Meaning, all my doctors and other services are provided through Kaiser. They are a Managed Health Organization, which is who is responsible for my care whether I was a regular ACA insurance carrier or Medicaid. Services are SUPPOSED to be identical, but I did get more when I had regular insurance (where I qualified for an ACA subsidy). Is your mom on Medi-Cal?
We are in Los Angeles and yes,she is on Medical. Thank God they cover all the medications but I’d like to be with cancers centres rather than haematology oncologist. That’s what Medical provides. Maybe with Medicare there are more options…
I don't blame you for feeling that way. I'll be moving to Johns Hopkins for my treatment when my insurance is up for renewal. At least in Maryland, being on Medicaid does not restrict who treats me. (And Hopkins is #1 in Maryland for breast cancer, #4 in the nation.) With Kaiser, I have never met a MBC specialist, and I requested a consult with one through Hopkins ....which Kaiser denied, saying I have everything I need. NO, I don't. I need to see a MBC medical oncologist. And so does your mom. Please don't give up on this. You are not supposed to get second-rate care just because of your income level. I encourage you to talk to a Social Worker to see if you have options that you are currently unaware of.
Hi Cos, hope you are doing well:). You mentioned that you have PIK3CA mutation. What does it mean? My mom hasn’t got checked for that mutation? Does it affect the treatment?
My second oncologist lined me up with a research study where they tested my (stored/preserved) biopsy tissue for its molecular make-up. This is different than genetic testing through a blood test, which I had done during staging, that shows whether you have a gene that makes you higher risk for a certain type of cancer. I have no genetic reason for any type of cancer. With the genome/molecular end, they are looking more deeply at your cancer makeup itself. I have two mutations, one of which does not have a treatment specifically for it. The other is the PIK3... which DOES have a medication developed for this mutation: Piqray.
Basically, finding out if you have a mutation (from the start) will dictate what treatments are apt to work best for you. In my case, knowing that I have the PIK3 mutation, I know that we will move to Piqray when my current treatment stops working for me. Doesn't mean that other things might not work too, but it is good to know that I have this one available to me as well.
I was part of the STRATA study. I am sorry that I can't find anything more specific for you to share with your mom and her oncologist... but... here is a starting point: unclineberger.org/octr/our-...
I'd definitely recommend you folks pursue this or a similar study in order to get this info.
Cos
xo
PS: Participating in this and other studies does not cost the patient anything.
I will pray for your mom, and 😇you, as you fight to help your mom fight this disease🙏. May the right treatment be her saving grace.🙏
Thank you so much 😘😘😘❤️❤️❤️
I'm so sorry that your mom has this lousy cancer. My mother died from lung cancer (not bc with lung mets but primary lung cancer) in 1985 when she was 69. I live about 1200 miles from where she lived but got to spend quite a bit of time with her. Her cancer was more emotionally devastating to me than my own mbc! Our mothers are such key people in our lives! I'm a long timer with mbc, 17 years, and have bone mets and not lung mets. Letrozole was my first med, and I got almost five years from it, then over nine years on Faslodex and now over 3 1/2 years on Exemestane. Have also been on Rx meds for my bones. My main way of coping with this mbc has been to learn as much about it as I can. I've attended several bc conferences and a week long intensive program for bc advocates. Your mother has a lot going for her, in terms of this cancer. That it is "nonaggressive" is wonderful! People with aggressive bc pull survival statistics down alot. Also the E+ P+ her2neu negative bc tends to be less aggressive and has alot of treatments available. Being older is a plus when it comes to having mbc, too! About insurance, I don't know if this will be an option for your mother, but I have always heard good things about the Medicare Supplement insurance that AARP offers it's members. I don't think there are citizenship issues with it. If you haven't already done this, you might call City of Hope to ask what they would charge your mother for a second opinion evaluation. And there may be a top notch cancer center that her insurance would cover for a second opinion.
I know there is alot of info on line about bc and some of it doesn't have scientific back up. The long termers I've met often just do what their oncs recommend. And the first long termer I met face to face has lung mets only! She lived with MBC for 13 years and likely died when she did because her grown daughter died suddenly and unexpectedly about a year earlier. She lost all her spunk and joy.
Is your mother interested in learning English? Doing something like that might help take her mind off the cancer. Is it possible for your father to join you in LA, even for a visit?
You are doing alot for your mother! I hope that both of you will have chances to take good care of yourselves and do some things for fun!
Thank you so much for your respond 😘. Luckily my mom’s general health is ok and she is very active and mentally she is much better than me. Since her diagnose I’ve never seen her crying:). Sometimes she gets very angry and says I don’t feel that I have cancer or she says they probably made a mistake with my diagnose. I told her mom don’t worry your oncologist was very positive and said that you should 80% respond to treatment and we should not panic and she also mentioned that she has several patients with mets that have been leaving for 20 years now and after that she said ok then everything is gonna be fine. She is not googling anything. She says I trust my doctor and that’s it. I felt worse than her and thank to antidepressant I’m much better and also all of your ladies stories really helps me to deal with this situation right now
I should have added that besides City of Hope, there are top tier cancer centers at UCLA and USC. Maybe one of them would be covered by your mother's insurance. Push the insurance company if you have to for your mother to get a second opinion from a bc specialist onc, one who sees only breast cancer patients. There are great options there in the LA area! Besides being medically helpful,, it can be very emotionally helpful to see those oncs! They tend to be up to date on all the research and they do research themselves as well as seeing patients.
17 yeast,woooow,that’s fantastic😘😘😘. Wishing you many many healthy quality life❤️❤️❤️I tried to get authorisation for city of hope but medical didn’t approve it with statement that her condition is not that bad right now and she has good oncologist. She’s almost 65,we will enrol for Medicare for sure and I’m also gonna ask about UCLA and USC. She will have her first scan after treatment in July and hopefully if everything is fine we will go to London where my sister lives and then Baku where my dad lives :)). That’s what my mom wants. She misses the city that she used to live and also her other grandchild’s a lot. I hope everything is gonna be fine and we can travel. And after we come back she will take English classes. She wants it a lot
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