just wanted to say hi to everyone… that answered me when I first found you all. N u all gave me hope to fight. My husband n I lived in North Carolina for 2 years where I was diagnosed with stage 4 metastatic breast cancer. N I had just met my oncologist who introduced himself n followed with ‘you have terminal cancer … which I had just found out that morning . I was still in shock. He stared at me for a few minutes waiting fir a reply I guess . Anyway I lift his office n found this site . N you all gave me hope , I have been Been on Ibrance n Exemestane tolerating it well n last Ct scan tumors all shrunk ….we just moved back to New Jersey n I have a new oncologist…. She sending me for all new tests. I just had PET/CT from head to thigh. Also I made appointment with a cardiologist n a GYN/Oncologist to discuss having my ovaries removed since I have gene mutation where I am st risk for getting ovarian cancer.
Dancing : just wanted to say hi to... - SHARE Metastatic ...
Dancing
welcome to this group! I was diagnosed in October 2022 and it sent shock waves through your whole entire body and the “terminal diagnosis “is not a user-friendly term… treatable not curable I totally get it. I’m still in shock but I’m starting to understand it and realize, these are just words!everybody’s terminal !and I look around and I see all kinds of stuff around me people that are healthy and things happen to them. That’s a wake up call to so I guess we’re all in this together and no one knows what tomorrow will bring on the brighter side , it gives us a chance to look at life in a different way. We see it through different glasses now it’s live your life the way you’ve always wanted too…Say the things you want to say do the things you want to do…love more complain less! things that used to bother you , make no difference in your life now. We live until we die. We just know what road we’re going down. I’m on Verzinio and Arimidex. I’m tolerating it pretty well and I’m still working. I’m a hairdresser. I get more tired than what I used to but I’m setting better boundaries anyway welcome to the group!
Hi , you have just put your thoughts about life with MBC. spot on, Thankyou that’s exactly how I feel , but I couldn’t put it into words , you have made me feel so much better about how I think about life , ❤️
Hi. Very well put. I was diagnosed with MBC in August 2022 with no previous cancer diagnosis. I was given the news at 4.30 in the morning, in the middle of a hospital ward full of other ladies. I had been admitted with shortness of breath. Took a few months to get over the shock but now live each day as it comes. On Letrozole and ibrance which I'm tolerating well. Love your user name, very clever!! Best wishes.
You feel very similar to how I feel, life IS a terminal illness as all life ends in death. it is truly a balancing act i.e what don't kill us makes us stronger for real! <3 God bless you and heal us all in Jesus name, amen!
God bless you as well.
Hello!!
It sounds to me like your first oncologist was an absolute a-hole! And you sound like you learned to self advocate!! Hooray! Your former oncologist should have been reported, but that’s so easy to say when he/she manages your care. So sad but true.
I’m glad to learn that you returned to New Jersey, where loved ones are so important as you move along this journey. Let’s all remember that life itself is terminal. It’s how we live it that makes all the difference!! God bless you!!
Linda 💗💗🙏🏻🙏🏻
thank you …. I also thought that… but some doctors have bad bed side manners. N he was very direct n with me. N I found out that morning from my breast day after lung biopsy n this onc was able to see me thst afternoon. But I am on Ibrance n Exemestane n it’s working for me n my new oncologist I just met was very professional n her team were kind n caring ..when I call they pick right up. She has me on same immunotherapy but wants me to follow up with cardiologist ( she heard a murmur). N a GYN/oncologist for my gene mutation which I am at risk for ovarian cancer. I just had a PET scan on Friday.
It's a really good idea to get your ovaries out. I had mine out after I found out I have that certain gene too. The operation is not too bad, easier and faster to heal than my caesarian and mastectomies! I'm glad you were able to find yourself a better-sounding doctor who seems much more proactive. May I ask which hospital center you're at now? (Also here in NJ)
Penn medicine. I live in NJ but I was born and raised in Philadelphia n I worked at Jefferson fir 32 years. But I am going to Pennsylvania hospital
I just sent you a private message. Penn medicine has great care!
It sounds like you are in good hands! 💗💗🙏🏻🙏🏻
Sounds like you are in good hands!! 💗💗🙏🏻🙏🏻
yes my new onc is very thorough
welcome! It is a shock but I quickly learned to speak up and be persistent if something feels off. I was diagnosed in August 2021.
hello dancing! Glad you moved back home snd got a new oncologist- hopeful she will be more caring. Glad you are getting your ovaries out… I tried years ago but waited too long and recently the night before it was finally scheduled they scanned me and it had spread all over abdominal area. So don’t delay.
Hello there Bettybuckets. I onc just ordered me to have a PET/CT scan last Friday. Going tomorrow for my blood work to see if all is ok to start my 11th cycle of Ibrance. N I will probably hear how the scan went.
Hi! In haste! I also am in NJ, being treated at Sloan Kettering in Basking Ridge. Where are you being treated?
hi ABL….my onc is a Penn Med dr in Voorhees. So I am seeing my cardiologist in center city n also seeing a GYN/Onc at 8th n Walnut st
We just moved to Glassboro
I had the same kind of oncologist. I had a tumor in my chest so my primary doc made an appointment for me with a thoracic surgeon at 8 am after my biopsy. He said I have nothing to say. Saw breast oncologist that afternoon and she said, "You have terminal cancer. There are three treatments. When they stop working, that is it. We'll put off chemo as long as we can because it will make life not worth living." Something like that. I was stunned. From thinking I had one of five possible diagnoses for the chest tumor to cancer all over. I am still with her and she is only slightly better at communicating. At a subsequent visit she told me I had five years. (I am in year 4, and almost no cancer.)
I started dancing after my diagnosis. Part of doing what you want and not what you don't. I am ridiculously cheerful. Used to work all the time (social research), and now I dance as much as I can. I think I am healthier than most people I know -- except for the mbc.
great positive outlook on life and how great to be dancing through life!
Hi Dancing. I wish you success with your new medications. Like many of us, you received such terrifying news. But like most of us we discovered after that bad news that there are many paths to getting health back. I believe you will find a path that leads to happiness and health. Just don't get down. Stay happy and smile at yourself in the mirror. It lets the brain know you plan to be well. I have been on Ibrance and Letrozole for over three years and I am doing well and enjoying my life. Hugs Marlene
hi Viennagirl … thank you for your positive upbeat advice. One day at a time n I am back home with friends n family who love me n I am happy we were able to make this move. I can’t wait to start making dates with my Red Hat gang who I grew up with since grade school.
Welcome to the forum. I do not believe the doctors know how long you have. My first cancer was 2001. In 2013 was my first metastasis. Exemestane and Zometa gave me a long haul. I am on Kisqali and Faslodex now.I have a sweet friend that her metastasis occurred 2020 and they gave her 4 months. She is on Ibrance and Faslodex. She is raising 4 teenagers and exudes positive energy.
Finding the treatment that works for you and that you can tolerate is key. Wishing you a long and active journey.
thank you Cowgirl.
Hi cowgirl. You give me hope . ☮️
Hi and welcome! I have also 4th stage metastatize cancer but that is NOT TERMINAL disease, it is treatable!! I have been going forward for more than 5 years!! You will be fine, I promise you! It isn’t the end of the line! God bless you. You have a new doctor and he will help you! Hang in there! Kathy from Syracuse❤️❤️❤️
Got great news from my PET scan. All is good no metastatic changes …. Seeing GYN/oncology dr to discuss having my ovaries removed… has anyone had this procedure. I have the gene mutation n am moderate risk for ovarian cancer. But have to do some research.. Will I need to go on meds after ovaries out?
So glad you found this site. The people are wonderful. I have had MBC for 7 years and still have several drugs to go. My brother died of MBC about 10 years ago and now my little sister also has MBC. We do not have either BRACA mutation. Where are you in New Jersey? My little sister was just diagnosed in December and lives in Franklin Township, Somerset NJ. I was on Ibrance and tolerated it well. All of the drugs have side effects and with each new drug I experiment on what makes me feel better and what makes me feel worse and take each day as it comes. I also wanted you to know that any stage IV cancer is an automatic qualification for disability. I do not know if you are still working or how old you are, but just know MBC qualifies you for disability. Prayer and good thoughts your way. This disease is not a “death sentence” We will probably die before we want to, but there are quite a few long term survivors out there. I have seen more than 20 years, 19 years, in the teens…. At my last appointment I asked my oncologist if I had lots of drugs left or just a few-she said shortly before my diagnosis, they had about 6 different chemos they would use for MBC patients, I have not yet used any of those and there are still a few targeted therapies out there for me to try so she said she would definitely call that more than a few. It is a life change but not the end of the world. Welcome and keep dancing.
hello there … I always feel better with messages like your message I just had a PET scan n on my chart I read a sentence that read there is no obvious evidence of cancer on this scan. I kept reading it over n over. Also wanted me to have a mammogram. It was one small page. After that I picked up my disk n report n that sentence was no where on the report. I didn’t know how to snap shot it to show my oncologist but it is not on report I picked up or on my cell phone chart.
But I wrote it down so I would not forget it.
Confused.
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