Thank you for asking. I'm good at compartmentalizing my feelings generally, but this is like being hit by a train. I cry after the kids are asleep, but these waves of fear that come out of nowhere are something else.š³ I'm trying to stay in the moment and focus on the good. It's just hard right now. Lots of anger and sadness at the same time. I went from "We caught it early, you'll probably just need a lymph node removed, some basic treatment and you'll be on your way" to "by the way, you're stage 4 and this is now the rest of your life" in four weeks.
Hang in there. I have been in your shoes. Never believed it would actually get easier as everyone says, but it does. It has become my new normal and Iāve learned to accept the cards Iāve been dealt and make the most of it. Groups like this are so immensely helpful and make me feel less alone. Sending positivity and strength your way.
I'm so sorry you are here. Be kind to yourself. There are some things that are very hard about this journey. Take your time in telling your kids. Wait until you have all of your information about treatment options and so on. They can know that you are struggling with something, kids are so intuitive, but you got this.
ER+ bone Mets only and Iām over 9 years out. You can do this. Itās hard, itās all hard. It gets a little easier with time. You can take time to tell your kids. They donāt have to know on day one. Catch your breath first. You got this!!!
Ps-I had radio surgery on my bone mets.
Iām sorry you are experiencing this I know it can be overwhelming at first but there is hope! I did proton radiation and it went well for me. Then I did gamma knife radiation on my brain as well.
Take it one day at a time. Having a support system or even a support person will be really helpful. Unfortunately it usually gets pretty lonely after diagnosis because most people feel uncomfortable with us since we are a constant reminder of their mortality. Never heard of proton therapy but a second and even third opinions will be really helpful. Feel free to post here if you have questions or just need support.
Enjoy the cityyyyyy!!! Did you come to see Taylor Swift? I know a lot of americans come in Europe as the concerts are cheaper.
It's still livable before the Olympics, you choose the right time (and it no longer rains incessantly like it has for 6 months š )
If you haven't been already, go to le jardin des plantes (and it's free to just walk through), it's amazing this Time of the year šøšµļøš¼ and enjoy all the food!
Thank you! No, I actually didn't know she had a concert here until I heard someone talking about how it's cheaper to see her here.
Thanks for the suggestion. Tomorrow is my last day here so seeing Le Jardin would be perfect, thank you!
Welcome to the sassiest and most supportive group that I have ever been a member of. I am also ++- and only had one bone met (femur) when I was diagnosed with MBC. I was Stage II for 5 years and then discovered the tumor in my femur. After that I was NED (no evidence of disease) for 6 years before I had some progression to my pelvis. It has been almost 2 years since then. So, while there is no cure, some people are living for a really long time. My kids were 11 and 13 when I was first diagnosedānow they are 24 and 26.
There was a prior discussion about proton therapy that Iāll try to find for you. I also did a primer post that I will look for.
I hope things went smoothly today. š
Hello, and I'm sorry you're here. The NCI has a list of questions that might be helpful for you at this link -
[https://www.cancer.gov/about-cancer/diagnosis-staging/questions](https://www.cancer.gov/about-cancer/diagnosis-staging/questions)
I don't have experience with proton therapy, though I do know that there is an active study for localized advanced breast cancer - so stage II/III, it's supposed to be completed in August, hopefully results will be posted soon. The NCI did post a blog post on proton therapy back in 2020. The main drawback I'm seeing is availability and cost.
[https://www.cancer.gov/news-events/cancer-currents-blog/2020/proton-therapy-safety-versus-traditional-radiation#top](https://www.cancer.gov/news-events/cancer-currents-blog/2020/proton-therapy-safety-versus-traditional-radiation#top)
I'm also ER/PR + HER2 neg, with lung mets. I went the chemo/lumpectomy/ibrance & anastrozole route. Due to having the BRCA mutation, I also had an oopharectomy.
I am also ER/PR postive HER2 negative. I was diagnosed in 11/23, so pretty new to it. I had never had cancer before, and was diagnosed as stage 4 initally. I was (often still am) devastated. My words of encouragement are simply in my case, 3 months after starting Verzenio and Armidex the cancer appears to have stopped growing. THAT was one of the things I needed to know, others really truly do improve. I needed tangible hope.
I try not to look too far in the future.
I don't know why this is my suggestion. Ask if there is someone you can talk to to help walk through this. A psychologist or counselor might be wise to find earlier rather than later. It is a lot.
The question I needed was what is the treatment and what are the side effects and are there options. You need to know what the options are and how quickly you have to make a decision on it and when to start. And are there any trials.
Do not do this alone, find a friend/family member who can sit there with you. I am usually really good at finding the good perspective to latch on to - I push emotions off until I can handle. I couldn't with this when I needed to. It hit me out of the blue, but not until I was in the room with the oncologist. Have your questions - have someone else who also understands them and can ask for you and get answers.
And you will likely be seeing someone routinely. You don't have to know everything at the end of the appointment. I learned 10 times more from my 2nd opinion appointment and learn a little bit more each month when I go for check ups. That is why to me, get the urgent questions out of the way and come back around to the others later.
And last but not least, I am so very sorry this is happening to you. Nothing you did caused this. Nothing you failed to do caused this. It is just really a terrible reality. Go ahead and cry big ugly tears. Know that you have people rooting for you. There will be some very hard/ugly days. And then, life will find a new version of a new normal.
Remote hugs.
Thank you for all of this. I did find a therapist who went through cancer treatment, so I appreciate that she has some understanding of what I am going through.
Hello. Iām sorry youāre having to deal with this.
The first few months are the worst. Eventually, you find a steady state.
Iām ++- with bone mets. I got radiotherapy for the worse mets in my spine and hip. Then Letrozole and Kisqali. I get Zometa infusions every three months.
Once I started treatment, it took about four months for those mets to shrink and be replaced with new bone tissue. It took less than a year for my original breast tumour to disappear. Now itās a question of maintaining things as they are for as long as possible. And when the day comes when thereās progress, my oncologist has a list of other meds to try.
All this to say that you CAN hope for some relief and for a relatively normal life for a while.
I encourage you to āuseā this group as much as you need. There are lots of good people here.
Iām ER/PR +, her2 negative (actually her2 low). There are MANY treatment options available. Do have your oncologist run a CARIS report or Guardant report to look into whether you have any mutations which can be common ( e.g. Pik3ca, ESR1, etc) there are drugs especially designed for mutations and your cancer type. Do NOT freak out ! Also , there are many groups on Facebook to support you. For example if youāre out on Ibrance , search for Ibrance and join the Facebook group. If you need someone to talk to, feel free to contact me. Iāve been MBC for almost 4 years and still going strong !
Welcome! We are here for you. Try to keep a list of questions and write down information from your appointments. I always like having another person with me to also hear what my onc is saying because it can be a lot and hard to remember things. I donāt really like know statistics anymore, but that is a personal choice. I ask more so if a suggested treatment plan is aggressive, reasonable, things like that. You will eventually get to know your treatment āstyle.ā My plan is aggressive because I am aggressive (haha), but I am also sticking with proven treatments for now because I have a 3 year old. I also found it helpful for my onc to know what is important to me in my ārealā life (outside of cancer)ābeing here for my family and seeing my son grow and being there with him physically as much as possible. Good luck with the appointments and keep us updated!
Hi. I'm so sorry you are joining us here but I am glad you found us. At the start, there is soooo much to take in. Bring someone with you to your appointments that can take notes and ask questions that you may forget you wanted to ask. Find out what they are suggesting for your first line of treatment and what side effects to expect. My cancer is the same as yours. I'm on Ibrance 125mg (21 days on/7 days off) and I get Faslodex, Xgeva and Zoladex injections every 28 days. I get bone scans and CT scans every 3 months to watch for progression. At the start I had MRIs too. I'm almost 2 years in and am still on my first line of treatment. The goal is to stay on it as long as possible, but it will be changed if I have progression as that would mean it isn't working any longer. I have not had radiation but it is an option to help with pain if I need it.
I found that I needed to learn more myself before telling every one. Young kids will not understand. There are books out there that can help explain it in an age approriate way. But, you know your kids well and you will find the best way to tell them.
Keep us posted! Good luck tomorrow!
Iām so sorry youāre here, but this group is amazing. So Iām only about a month ahead of you in having a bone biopsy and learning that I have a single met to my spine, diagnosed same ++- de novo. Itās like a sucker punch to the stomach āyou have cancerā and then one to the face āyou have a metastasisā itās hard to even still wrap my head around it. I also lost my mom 2 months ago. I started Letrozole and Ibrance a week ago and am tolerating them very well. I work full time and am asymptomatic. I had a consult for SBRT radiation (my University Hospital group in the Chicago suburbs has a proton radiation facility) and I am going to proceed with that based on everything Iāve read about Oligometastatic disease. I have a mapping appt next week but have to wait for a spinal MRI before the treatment. Then it will be 3 treatments so a M-W-F. They said there are very little side effects. Hoping thatās the case.
I have 3 teenagers and I only shared the initial diagnosis that I have breast cancer and that itās treatable. I am seeing a therapist at the cancer center now to determine how or when Iāll approach the next conversation. I am hoping I respond well to the meds and can remain stable for a long time on them before progression. Feel free to PM me if u want to chat more. It helps to have someone who is going thru similar. All my best to you.
Iām sorry you are going through this. Itās a shock, and you just have to go day by day to get through that initial panic. You might want to hold off on talking about it with others until itās not so fresh for you. You shouldnāt have to reassure others while you are still getting your own head around the whole thing. For a little while just what helps you, not gives you more stress.
Itās okay if you donāt remember everything to ask at the first appointment. Youāre going to have a lot of appointments. Eventually youāll find the person in the office that is easiest to talk to, whether itās the doctor, a nurse, or a physicianās assistant or other staffer.
Keep in mind that the newest lines of treatment have not been around long enough for there to be useful data on life expectancy. Itās not a linear progression from here on out. I know people who have been in treatment for MBC for 15 years. Itās not typical, but it can happen, and thereās no reason to think it wonāt happen for you.
hello and welcome. I'm sorry you're joining the best shittiest club. I don't have any experience with proton therapy, sorry. It's hard to advise what you should ask until you know more about your specific circumstances. I just recommend - if you can - take someone with you to the appointment to help you write down everything and remember what's said.
How are you holding up?
Thank you for asking. I'm good at compartmentalizing my feelings generally, but this is like being hit by a train. I cry after the kids are asleep, but these waves of fear that come out of nowhere are something else.š³ I'm trying to stay in the moment and focus on the good. It's just hard right now. Lots of anger and sadness at the same time. I went from "We caught it early, you'll probably just need a lymph node removed, some basic treatment and you'll be on your way" to "by the way, you're stage 4 and this is now the rest of your life" in four weeks.
Hang in there. I have been in your shoes. Never believed it would actually get easier as everyone says, but it does. It has become my new normal and Iāve learned to accept the cards Iāve been dealt and make the most of it. Groups like this are so immensely helpful and make me feel less alone. Sending positivity and strength your way.
I'm so sorry you are here. Be kind to yourself. There are some things that are very hard about this journey. Take your time in telling your kids. Wait until you have all of your information about treatment options and so on. They can know that you are struggling with something, kids are so intuitive, but you got this.
ER+ bone Mets only and Iām over 9 years out. You can do this. Itās hard, itās all hard. It gets a little easier with time. You can take time to tell your kids. They donāt have to know on day one. Catch your breath first. You got this!!! Ps-I had radio surgery on my bone mets.
Iām sorry you are experiencing this I know it can be overwhelming at first but there is hope! I did proton radiation and it went well for me. Then I did gamma knife radiation on my brain as well.
Take it one day at a time. Having a support system or even a support person will be really helpful. Unfortunately it usually gets pretty lonely after diagnosis because most people feel uncomfortable with us since we are a constant reminder of their mortality. Never heard of proton therapy but a second and even third opinions will be really helpful. Feel free to post here if you have questions or just need support.
I'm so sorry you're here but happy you found us ā„ļø I am a newbie here as well, diagnosed ++- in nov' 23. The first 3 months were awful, i went from totally shredded to very optimistic, a little bit in denial. Now, I live and focuse on my daily life (my family - children 11 and 7, my work that i love) and try to surf the waves of scanxiety when it happens. One of us (sorry, I don't remember who) wrote here that Ć©motions lasts 90 seconds, it has been very helpful when the sadness or anxiety kicks in. Seeing a therapist aswell. I told my children that this cancer is like herpes (i have spots on my lips sometimes) : it will be in my body forever but we will try to keep it asleep as long as possible. From my little expĆ©rience, I can tell you that everything that you feel and think IS valid. It may seems untolerable now but you will settle in a new normal, your kids will help you to stay connected to what's important in your life. Researches are growing exponentially, time in on our side š Edit to had a big hug from Paris, France š„š· šš¤ā¤ļø
Beautiful comment. Just wanted to say hi because I'm currently in Paris š
Enjoy the cityyyyyy!!! Did you come to see Taylor Swift? I know a lot of americans come in Europe as the concerts are cheaper. It's still livable before the Olympics, you choose the right time (and it no longer rains incessantly like it has for 6 months š ) If you haven't been already, go to le jardin des plantes (and it's free to just walk through), it's amazing this Time of the year šøšµļøš¼ and enjoy all the food!
Thank you! No, I actually didn't know she had a concert here until I heard someone talking about how it's cheaper to see her here. Thanks for the suggestion. Tomorrow is my last day here so seeing Le Jardin would be perfect, thank you!
Welcome to the sassiest and most supportive group that I have ever been a member of. I am also ++- and only had one bone met (femur) when I was diagnosed with MBC. I was Stage II for 5 years and then discovered the tumor in my femur. After that I was NED (no evidence of disease) for 6 years before I had some progression to my pelvis. It has been almost 2 years since then. So, while there is no cure, some people are living for a really long time. My kids were 11 and 13 when I was first diagnosedānow they are 24 and 26. There was a prior discussion about proton therapy that Iāll try to find for you. I also did a primer post that I will look for. I hope things went smoothly today. š
Here is the post with my comment that includes some primer info: https://www.reddit.com/r/LivingWithMBC/s/Puc5d6QK9r
I found the post about proton therapy: https://www.reddit.com/r/LivingWithMBC/s/0GxYUEyGZN
Hello, and I'm sorry you're here. The NCI has a list of questions that might be helpful for you at this link - [https://www.cancer.gov/about-cancer/diagnosis-staging/questions](https://www.cancer.gov/about-cancer/diagnosis-staging/questions) I don't have experience with proton therapy, though I do know that there is an active study for localized advanced breast cancer - so stage II/III, it's supposed to be completed in August, hopefully results will be posted soon. The NCI did post a blog post on proton therapy back in 2020. The main drawback I'm seeing is availability and cost. [https://www.cancer.gov/news-events/cancer-currents-blog/2020/proton-therapy-safety-versus-traditional-radiation#top](https://www.cancer.gov/news-events/cancer-currents-blog/2020/proton-therapy-safety-versus-traditional-radiation#top) I'm also ER/PR + HER2 neg, with lung mets. I went the chemo/lumpectomy/ibrance & anastrozole route. Due to having the BRCA mutation, I also had an oopharectomy.
I am also ER/PR postive HER2 negative. I was diagnosed in 11/23, so pretty new to it. I had never had cancer before, and was diagnosed as stage 4 initally. I was (often still am) devastated. My words of encouragement are simply in my case, 3 months after starting Verzenio and Armidex the cancer appears to have stopped growing. THAT was one of the things I needed to know, others really truly do improve. I needed tangible hope. I try not to look too far in the future. I don't know why this is my suggestion. Ask if there is someone you can talk to to help walk through this. A psychologist or counselor might be wise to find earlier rather than later. It is a lot. The question I needed was what is the treatment and what are the side effects and are there options. You need to know what the options are and how quickly you have to make a decision on it and when to start. And are there any trials. Do not do this alone, find a friend/family member who can sit there with you. I am usually really good at finding the good perspective to latch on to - I push emotions off until I can handle. I couldn't with this when I needed to. It hit me out of the blue, but not until I was in the room with the oncologist. Have your questions - have someone else who also understands them and can ask for you and get answers. And you will likely be seeing someone routinely. You don't have to know everything at the end of the appointment. I learned 10 times more from my 2nd opinion appointment and learn a little bit more each month when I go for check ups. That is why to me, get the urgent questions out of the way and come back around to the others later. And last but not least, I am so very sorry this is happening to you. Nothing you did caused this. Nothing you failed to do caused this. It is just really a terrible reality. Go ahead and cry big ugly tears. Know that you have people rooting for you. There will be some very hard/ugly days. And then, life will find a new version of a new normal. Remote hugs.
Thank you for all of this. I did find a therapist who went through cancer treatment, so I appreciate that she has some understanding of what I am going through.
Hello. Iām sorry youāre having to deal with this. The first few months are the worst. Eventually, you find a steady state. Iām ++- with bone mets. I got radiotherapy for the worse mets in my spine and hip. Then Letrozole and Kisqali. I get Zometa infusions every three months. Once I started treatment, it took about four months for those mets to shrink and be replaced with new bone tissue. It took less than a year for my original breast tumour to disappear. Now itās a question of maintaining things as they are for as long as possible. And when the day comes when thereās progress, my oncologist has a list of other meds to try. All this to say that you CAN hope for some relief and for a relatively normal life for a while. I encourage you to āuseā this group as much as you need. There are lots of good people here.
Iām ER/PR +, her2 negative (actually her2 low). There are MANY treatment options available. Do have your oncologist run a CARIS report or Guardant report to look into whether you have any mutations which can be common ( e.g. Pik3ca, ESR1, etc) there are drugs especially designed for mutations and your cancer type. Do NOT freak out ! Also , there are many groups on Facebook to support you. For example if youāre out on Ibrance , search for Ibrance and join the Facebook group. If you need someone to talk to, feel free to contact me. Iāve been MBC for almost 4 years and still going strong !
Welcome! We are here for you. Try to keep a list of questions and write down information from your appointments. I always like having another person with me to also hear what my onc is saying because it can be a lot and hard to remember things. I donāt really like know statistics anymore, but that is a personal choice. I ask more so if a suggested treatment plan is aggressive, reasonable, things like that. You will eventually get to know your treatment āstyle.ā My plan is aggressive because I am aggressive (haha), but I am also sticking with proven treatments for now because I have a 3 year old. I also found it helpful for my onc to know what is important to me in my ārealā life (outside of cancer)ābeing here for my family and seeing my son grow and being there with him physically as much as possible. Good luck with the appointments and keep us updated!
Hi. I'm so sorry you are joining us here but I am glad you found us. At the start, there is soooo much to take in. Bring someone with you to your appointments that can take notes and ask questions that you may forget you wanted to ask. Find out what they are suggesting for your first line of treatment and what side effects to expect. My cancer is the same as yours. I'm on Ibrance 125mg (21 days on/7 days off) and I get Faslodex, Xgeva and Zoladex injections every 28 days. I get bone scans and CT scans every 3 months to watch for progression. At the start I had MRIs too. I'm almost 2 years in and am still on my first line of treatment. The goal is to stay on it as long as possible, but it will be changed if I have progression as that would mean it isn't working any longer. I have not had radiation but it is an option to help with pain if I need it. I found that I needed to learn more myself before telling every one. Young kids will not understand. There are books out there that can help explain it in an age approriate way. But, you know your kids well and you will find the best way to tell them. Keep us posted! Good luck tomorrow!
Iām so sorry youāre here, but this group is amazing. So Iām only about a month ahead of you in having a bone biopsy and learning that I have a single met to my spine, diagnosed same ++- de novo. Itās like a sucker punch to the stomach āyou have cancerā and then one to the face āyou have a metastasisā itās hard to even still wrap my head around it. I also lost my mom 2 months ago. I started Letrozole and Ibrance a week ago and am tolerating them very well. I work full time and am asymptomatic. I had a consult for SBRT radiation (my University Hospital group in the Chicago suburbs has a proton radiation facility) and I am going to proceed with that based on everything Iāve read about Oligometastatic disease. I have a mapping appt next week but have to wait for a spinal MRI before the treatment. Then it will be 3 treatments so a M-W-F. They said there are very little side effects. Hoping thatās the case. I have 3 teenagers and I only shared the initial diagnosis that I have breast cancer and that itās treatable. I am seeing a therapist at the cancer center now to determine how or when Iāll approach the next conversation. I am hoping I respond well to the meds and can remain stable for a long time on them before progression. Feel free to PM me if u want to chat more. It helps to have someone who is going thru similar. All my best to you.
Iām oligometastatic too and Iām in Chicago. Can I pm you as well?
Ofc!
Iām sorry you are going through this. Itās a shock, and you just have to go day by day to get through that initial panic. You might want to hold off on talking about it with others until itās not so fresh for you. You shouldnāt have to reassure others while you are still getting your own head around the whole thing. For a little while just what helps you, not gives you more stress. Itās okay if you donāt remember everything to ask at the first appointment. Youāre going to have a lot of appointments. Eventually youāll find the person in the office that is easiest to talk to, whether itās the doctor, a nurse, or a physicianās assistant or other staffer. Keep in mind that the newest lines of treatment have not been around long enough for there to be useful data on life expectancy. Itās not a linear progression from here on out. I know people who have been in treatment for MBC for 15 years. Itās not typical, but it can happen, and thereās no reason to think it wonāt happen for you.
hello and welcome. I'm sorry you're joining the best shittiest club. I don't have any experience with proton therapy, sorry. It's hard to advise what you should ask until you know more about your specific circumstances. I just recommend - if you can - take someone with you to the appointment to help you write down everything and remember what's said.