Struggling to cope with Stage IV diagnosis and what the future holds.

Posted by fourfoot12 @fourfoot12, Dec 15, 2021

I was diagnosed with Stage IV breast cancer in May of this year (2021). I went through aggressive chemo that resulted in a clean PET scan in October. I then had a lumpectomy in December. When the tissue from the surgery was analyzed, it showed that the breast tissue was still cancerous. That was shocking, and very hard to accept, after the PET, physical exam, and a mammogram did not detect any signs of active cancer. I went from being full of hope to feeling as though all the treatments have been for nothing. I am starting on hormone therapy this week to slow progression. I am really struggling with what the future holds for me and how to move forward in a productive way. Hoping there is a Stage IV patient out there that can offer some advice, or share their experience, to help me. Thank you. Mary

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Sigh, this is absolutely the worst time, that I remember on my journey. It breaks my heart every time I hear someone else going through this time. The very first thing I should have done is call a good friend and sit and have a good cry, and instead I was tough and strong for those around me and pretended I was fine until I couldn’t pretend anymore. Please don’t do this to yourself because wherever you are when those tears start to flow, might not be the place you want to be sobbing uncontrollably. Like in a work meeting where you are already the least smart person in the room. Although it is worth a laugh now, it was just adding insult to injury at the time.
Please be gentle with yourself and allow yourself some time to absorb this new part of your journey. Today we have hope because of all of the new treatments for MBC, but it is different than feeling like you are fighting to beat the cancer. Now it feels like I live from scan to scan, and I have had to learn to roll with with some really hard punches. I have really bad days, and some so-so days when I think about it too much. I am currently progression free, but not cancer free.
I don’t know anything about you, but we are sisters on this path. Please feel free to private message me if you feel more comfortable talking about some things there. I know there are a few other MBC folks here that might connect to this thread as well.
Our fearless leader on connect always says, pull up a chair, let me pour you a cup of tea and let’s talk about it. Do you have family close by? What are you passionate about? Do you have a doctor you trust?

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Is your cancer lobular? I believe that is harder to see on scans. So sorry about stage 4. I am waiting for that to happen for myself, and know that many women live a lot longer than they used to, with the treatments available. I hope the hormonal treatment and any other treatments you have give you good years.

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@windyshores

Is your cancer lobular? I believe that is harder to see on scans. So sorry about stage 4. I am waiting for that to happen for myself, and know that many women live a lot longer than they used to, with the treatments available. I hope the hormonal treatment and any other treatments you have give you good years.

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Thank you for your response. My cancer is not lobular. My doctors cannot explain the clean scan and then pathology results that show Grade 2 cancer not two months later. Thank you for the positive thoughts and well wishes. Take care yourself and good luck!

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Hello Mary, so sorry to hear what you are going through. I was
Diagnosed June 2020 with stage 4 also which came as a shock. I began treatment in July (Kisqali and Anastrozole) which “metabolically resolved” the many lesions I had and in March and then July of this year PET scans were clear, no sign of progression however my September scan showed 3 areas where it has again become
Active. There will be a change in treatment in the new year, we are still waiting to figure out what that’s gonna look like, but I know there’s a plan, And after that treatment stops working, I know my doctor has yet another plan.Since my diagnosis my emotions and brain have really been on a roller coaster. Sometimes I feel like a warrior and am ready for battle and all that it entails. Other days I’m anxious, can’t sleep well and can’t focus on anything other than my diagnosis and future. But I don’t let it consume me because I’m afraid I’ll get stuck in that headspace and there is still a lot of living to do and I don’t want to miss it! I have through my journey so far met and connected with a few others in our situation who have had some
Bumps in their journey that were tough but today 5,10,20 years later continue to live and thrive with MBC. I get inspired by them, and remain hopeful in my darker moments. As Chris said, there are more of us Thrivers out there, would be great to connect somehow. Hang in there, find positives in all you can, allow yourself time to release your tears when you need to, then move forward and focus on all the good things still to come, because there are more to come! LeeAnn

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@leeann66

Hello Mary, so sorry to hear what you are going through. I was
Diagnosed June 2020 with stage 4 also which came as a shock. I began treatment in July (Kisqali and Anastrozole) which “metabolically resolved” the many lesions I had and in March and then July of this year PET scans were clear, no sign of progression however my September scan showed 3 areas where it has again become
Active. There will be a change in treatment in the new year, we are still waiting to figure out what that’s gonna look like, but I know there’s a plan, And after that treatment stops working, I know my doctor has yet another plan.Since my diagnosis my emotions and brain have really been on a roller coaster. Sometimes I feel like a warrior and am ready for battle and all that it entails. Other days I’m anxious, can’t sleep well and can’t focus on anything other than my diagnosis and future. But I don’t let it consume me because I’m afraid I’ll get stuck in that headspace and there is still a lot of living to do and I don’t want to miss it! I have through my journey so far met and connected with a few others in our situation who have had some
Bumps in their journey that were tough but today 5,10,20 years later continue to live and thrive with MBC. I get inspired by them, and remain hopeful in my darker moments. As Chris said, there are more of us Thrivers out there, would be great to connect somehow. Hang in there, find positives in all you can, allow yourself time to release your tears when you need to, then move forward and focus on all the good things still to come, because there are more to come! LeeAnn

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Oh my gosh @leeann66 , what a moving story. Thank you for sharing it. You statement about sometimes a warrior, other days not so much, brings a memory of a conversation I had with another MBC survivor just a couple days ago. She asked how I stay so courageous, I told her, “I don’t, but when my courage leaves, I just keep putting one foot in front of the other until it returns”. I suppose this is true of many things. ❤️

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@leeann66

Hello Mary, so sorry to hear what you are going through. I was
Diagnosed June 2020 with stage 4 also which came as a shock. I began treatment in July (Kisqali and Anastrozole) which “metabolically resolved” the many lesions I had and in March and then July of this year PET scans were clear, no sign of progression however my September scan showed 3 areas where it has again become
Active. There will be a change in treatment in the new year, we are still waiting to figure out what that’s gonna look like, but I know there’s a plan, And after that treatment stops working, I know my doctor has yet another plan.Since my diagnosis my emotions and brain have really been on a roller coaster. Sometimes I feel like a warrior and am ready for battle and all that it entails. Other days I’m anxious, can’t sleep well and can’t focus on anything other than my diagnosis and future. But I don’t let it consume me because I’m afraid I’ll get stuck in that headspace and there is still a lot of living to do and I don’t want to miss it! I have through my journey so far met and connected with a few others in our situation who have had some
Bumps in their journey that were tough but today 5,10,20 years later continue to live and thrive with MBC. I get inspired by them, and remain hopeful in my darker moments. As Chris said, there are more of us Thrivers out there, would be great to connect somehow. Hang in there, find positives in all you can, allow yourself time to release your tears when you need to, then move forward and focus on all the good things still to come, because there are more to come! LeeAnn

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Thank you for sharing your story. It is nice to know that I am not alone in this. Every story of hope and positivity helps. Take care of yourself. I wish you all the best. Hopefully you will be able to share another clean scan soon!,

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@fourfoot12

Thank you for sharing your story. It is nice to know that I am not alone in this. Every story of hope and positivity helps. Take care of yourself. I wish you all the best. Hopefully you will be able to share another clean scan soon!,

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Fourfoot12, I'd like to add my welcome too and invite a few more MBC thrivers to the discussion like @elizm @oilermama @junec @dianamiracle @ja5747 @claudiamaria @djwc @trixie1313 @mom23boys @mtt.

Stage IV is hard to hear, but keep in mind you're LIVING with advanced cancer. Focus on the things and people you're living for. What are your plans for the holiday season?

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Hi Mary! Colleen invited me to join in. I haven't been around much lately, not because I've been ill but just busy with family and all that life throws at us each day. I was initially diagnosed stage 2, ER/PR+, HER-2 neg April 24,2019. I accepted the chemo/mastectomy route, got my port and was ready to beat this. Beginning of May, after the scans were complete, it changed to Stage 4 with metastasis to my bones and lungs.Prior txt decision and mastectomy thrown out the window. I was put on Ibrance and Letrozole, which I am still on. I've gone thru some aches, fatigue, and hair thinning associated with the Letrozole (estrogen blocker) or the Ibrance. Fatigue went away after awhile but until then I'd sneak in a 30 minute nap here and there and that usually helped. The aches come and go and honestly I can't recall when exactly I stopped noticing any. Of course my left femur (met site) aches if I walk too much (I also like to hike) but I still hike and trudged thru 1 feet deep snow to retrieve a Christmas tree, just taking breaks more often. Life goes on. I'm at 2 yrs. 8 months ( I keep track), keep a positive attitude and push the cancer diagnosis to the very back of my mind. I know it's not easy but you have to look forward to living and keep doing it. Many have said "I may die with cancer but not FROM cancer". Keep your head up. We're all living longer with various treatment options available now.
Peggie

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Thank you for putting this into words we can all benefit from. Your words are a gift.

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Dear Mary,

Your situation, although alarming, regrettably is not unusual. Cancer is a clever fox, and the best of caregivers can be out-foxed by it on occasion. If you have a Cancer Support Community in the area, do consider joining it and participating in online programs (most centers have had to switch from in-person to online groups and classes during Covid). Whether or not you are religious or spiritual, see if one of your local churches (any denomination) has a Stephen Ministry program and request a Stephen Minister to just listen to you talk to her each week on the phone. Neither activity has "answers;" both can provide a great deal of help to your peace of mind, however. And thirdly, meditating each day can be an extremely beneficial activity for your health. It can lower your blood pressure and help enhance your mind-body connections and immune system. The focus now is totally on you and you doing whatever it takes to heal in concert with your oncologist's treatment plan. This is a team effort.

Don't expect family and friends to understand your journey unless they, too, are cancer survivors. In many cases, the whole thing understandably tends to frighten them, and their fears usually aren't informed nor helpful.

Keep a list of questions for your oncologist; make sure that you understand his/her responses at each visit. You deserve as much information as you want to have. If you are not satisfied with the information which you are receiving, consider getting a second opinion or even switching oncologists. You may have spent your entire life putting others first, but this is the time to put yourself first… and to not feel guilty about it. Now and then, there will be "dark nights of the soul," but then you also will find strength and courage in unexpected places. Live it all.

I wish you every blessing as you embark on this mysterious challenge. We'll be here rooting you on whenever you need us.

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@mom23boys

Hi Mary! Colleen invited me to join in. I haven't been around much lately, not because I've been ill but just busy with family and all that life throws at us each day. I was initially diagnosed stage 2, ER/PR+, HER-2 neg April 24,2019. I accepted the chemo/mastectomy route, got my port and was ready to beat this. Beginning of May, after the scans were complete, it changed to Stage 4 with metastasis to my bones and lungs.Prior txt decision and mastectomy thrown out the window. I was put on Ibrance and Letrozole, which I am still on. I've gone thru some aches, fatigue, and hair thinning associated with the Letrozole (estrogen blocker) or the Ibrance. Fatigue went away after awhile but until then I'd sneak in a 30 minute nap here and there and that usually helped. The aches come and go and honestly I can't recall when exactly I stopped noticing any. Of course my left femur (met site) aches if I walk too much (I also like to hike) but I still hike and trudged thru 1 feet deep snow to retrieve a Christmas tree, just taking breaks more often. Life goes on. I'm at 2 yrs. 8 months ( I keep track), keep a positive attitude and push the cancer diagnosis to the very back of my mind. I know it's not easy but you have to look forward to living and keep doing it. Many have said "I may die with cancer but not FROM cancer". Keep your head up. We're all living longer with various treatment options available now.
Peggie

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Very inspiring! My Mom is in the similar condition but her post covid lungs are giving her much harder time. She’s on O2 24/7 and only able to wean off only for about 15-20 minutes a day. We know that time is not on her side but doing all that can keep her comfortable and happy. it’s very worrying to think of what’s coming. She’s not taking any oral chemo drugs asr the Drs believe she must come out of her fragile condition to be able to withstand side effects of these drugs.
Wishing you lot of courage and grit!

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@vnparikh

Very inspiring! My Mom is in the similar condition but her post covid lungs are giving her much harder time. She’s on O2 24/7 and only able to wean off only for about 15-20 minutes a day. We know that time is not on her side but doing all that can keep her comfortable and happy. it’s very worrying to think of what’s coming. She’s not taking any oral chemo drugs asr the Drs believe she must come out of her fragile condition to be able to withstand side effects of these drugs.
Wishing you lot of courage and grit!

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I'm sorry your mom is having to struggle due to the Covid. Anyone with lung mets knows that bronchitis, flu and now, especially covid, can take any one of us down. I pray that she will recover from her Covid and get back to treatment. Right now, she needs all the fighting blood cells so stopping treatment is necessary. I've know gals off for up to 2 months who saw no progression so I hope your mom will fair as well. Prayers with you, your mom and your family thru the Holidays and beyond.
Peggie

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