Pls some positive stories. There have to be some
had stage 3 TNBC. Hit me hard w all the treatments. Found spot they were sure was arthritis. Small spot in pelvis area. Told yesterday stage 4. They are 80% sure it’s cancer. I’m focusing on the 20% chance it’s not but they need to treat it of course. I have a 5 year old. I have to be here to see him at least grown and independent. Pls any long term survivors out there? Pls I need some hope and stories I can read and come back to when I’m hit hard with what’s happening here 🙏🙏🙏🙏
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dlittkemann,
Welcome. Have they found just a single bone met? If so, there is reason to be hopeful. Limited mets to single areas, i.e. bones or single organ, are considered to be oligometastases and possibly better survival outcomes. I was dx'ed with a single met to my upper femur 8 1/2 years ago. I had rads to the femur and have been on an AI only since then and have had no progression. Save for a 3 1/2/ month medical leave, I have continued to work full time. There are no guarantees but there is continuing hope. Check out these two threads and take good care of yourself
https://community.breastcancer.org/forum/8/topics/786652?page=9#idx_262
https://community.breastcancer.org/forum/8/topics/818931?page=103#idx_3089
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Can’t thank You enough for those wonderful words of encouragement ...as far as I know it’s just one tiny single spot, and my last CT scan was six months ago (all clear) so they’re going to do another one and let’s pray that’s 100% clear.
my doctor feels it’s going to be clear, it’s a very small spot and it’s just one and I had no idea there was anything like you mentioned above. I will read and re-read this over and over again I cannot thank you enough for helping me out.
Devon
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hi
I was diagnosed at stage 4 with many bone mets(innumerable is what they say on my scans) and I’ve been stable for almost 7 years on tamoxifen and have seen my 5 kids graduate high school,college,get married,and have a grandchild. You can have many years to be with your son and live a happy life-best of luck.
Kristin
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If it's a single lesion they can radiate it out of existence and you'll be fine. Sure you may need to have systemic treatment as well but it's certainly not running rampant.
I've been at this 7 years now. I figure I have three to five left unless something really goes wrong.
Hang in there!
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Right now as far as know yes it’s a single lesion, ct scan next week to check that and be sure. Thanks so much for the word of encouragement. Helps a lot. Such a shock to be here esp when first get the news. All the stories help so much. Thank you all.
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Thank you so much for that and all the best to all of you too who have replied. You have helped me so much. So glad I asked. I was afraid to ask for these stories. Still in shock but you have all eased my mind a lot. Thank you. God bless you all
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People are living long, happy lives with MBC. I was diagnosed was Stage 4 in 2016 but feel that it had been there for a couple of years prior. We had moved to a very dry area of Texas and I developed what I thought we allergies from the drastic change in environment. Anyway, I was diagnosed with DCIS in 2006, did the whole chemo, surgery, radiation protocol and had ten years without recurrence. Mets drugs have been tolerable and I am able to carry out my normal routine. Advice I have for you is to accept that this has happened and move forward. I truly believe that being stressed is the absolute worst thing. You got this.
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dlittkemann, you are in what we call the shock and awe period. We've all been there. Don't worry if you need to scream or cry or hit things. It's perfectly normal. This is a major life-changing experience and don't let anyone tell you differently. It will take some time to get used to it.
BUT. In a month or two or six you'll be used to it. And life will return to normal. Or generally normal. Don't make any major life decisions (except for treating the cancer) until then.
A hug from me. . .
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Yes I’m in total shock and so scared but all these posts have helped me so much. Thank you ❤️🙏 xoxo
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Pam, I hope your retirement fund is set up for much more than 3-5 years!!
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Yes sounds good to me. More like 10-20 years 🙏
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Hi everyone
So I was told by my friend, who is a Dr too that my cat scan is clear so it would appear we are dealing w one small spot on my pelvis area. Hoping they can get it w radiation and I can get on w my life w my family. Thank you for all the kind words. You have all helped me so much. I will make sure to return the favour for others on this board 🙏🙏🙏
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Also, cancer w mets, saw small part of google..Looking for something else, scares me so much!!!!!
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8.5 years since diagnosis as stage 4. I have attended two childrens college masters degree graduations, my daughter's wedding and welcomed 3 New grandchildren since diagnosis. I have a Facebook friend that has been stage 4 for 22 years! There are many happy stories. Hang in there. They are right about using caution on setting your retirement fund up. The surgeon who diagnosed me gave me a life expectancy of 2 years. I took out a large chunk to bucket list and took the remainder over 10 years. If not for an inheritance we would be approaching financial difficulties soon!
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Hi everyone
So had second opinion consult today. They said it’s def a bone mestasis and even might be 2 more marks that others missed on my scans. My mom is devastated. I’m devastated. I keep reading your stories and words of encouragement. I have to be here for my 5 year old son at least til he’s 20. Sorry if not making sense. I’m just so scared and was hoping for better news. I guess bright side is it’s only bone? Not elsewhere? Keep the happy sorry posts coming. Pls. I need all I can get. I’m 45.
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thank you so much for those words of encouragement. So needed today. I updated this above too but can’t see it. So will add here:
**update**
So had second opinion consult today. They said it's def a bone mestasis and even might be 2 more marks that others missed on my scans. My mom is devastated. I'm devastated. I keep reading your stories and words of encouragement. I have to be here for my 5 year old son at least til he's 20. Sorry if not making sense. I'm just so scared and was hoping for better news. I guess bright side is it's only bone? Not elsewhere? Keep the happy sorry posts coming. Pls. I need all I can get. I'm 45.
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Hey, dlittkemann,
So sorry to learn you are dealing with metastatic breast cancer at such a young age. It really sucks.
There are a lot of positive stories about women living with this disease for a long time. It takes awhile to adjust to the new normal of your life. You start looking at things in a different light, and that's not all bad. Many of us call it living with mbc, not dying from it,
If you need to get on antidepressants or antianxiety meds, speak to your doctor. I take antianxiety meds and find it helps take the edge off my fears without changing my personality. It helps me function better on a daily basis.
Try not to project yourself too far into the future. Try to live just one day, the whole fullness of it, not just the length of it. Experience everything you have in one day, then wake up tomorrow and do it again. Keep repeating. You can and will have some of your best moments in life even now, despite mbc.
Tho I have a different bc than you, I've been living with it 9+ years, since my early 50s. My son graduated hs when I was diagnosed, I got to see him graduate college four years later. and that was 5 years ago!
You have every right to believe you'll be around to celebrate you son's 20th birthday in 2035! Pick up some good books on the subject of besting the odds, like Radical Remission and Mind Over Medicine, Limit or eliminate exposure to scary statistics and naysayers. Watch uplifting shows, documentaries and even try having a good time watching some great comedy standup routines. We all need mental health breaks from the seriousness of this disease.
Best wishes to you.Hang in there!
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I can’t thank you enough for such hopeful kind liberating words. I will be reading and re reading these posts a lot I’m sure. They give me hope. And for that I will be forever grateful xoxo. Sending you so much love.
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oh and the only thing that calms my nerves is a small glass of dry red at night. Hope that’s ok? Helps me sleep too anyone else do that or should I stop
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MsM is definitely wise in her words
You can't change what's happened, but you can manage how you approach living with it. I choose to get up and go on with my life and not let this weigh me down more than it has to, and find time to enjoy things every day, no matter how small. Yeah, carefree days of not having to go to the hospital for an appointment every month are gone, but to be fair the fact that I only have to take two small pills in the morning to manage cancer is incredible and I am grateful for it.If you only have one or two bone mets they can potentially radiate those now and put you on systemic treatment that will keep them at bay for a long time. Look up the oligometastatic stage IV thread (should be 3 or 4 pages back). Some ladies have MOs who have chosen to 'go for cure' even with one or two bone mets (cure being NED for a really long time), and there seems to be an evolving mentality about treating oligo ladies more aggressively. And I know we have several women up in the 15+ years stage floating around who check-in a few times a year because they are out livin' life and gettin' on with it.
Re: the wine - you will need to speak to your oncologist about alcohol intake. There is wide variation here in what MOs have told ladies about what they can have. I've more or less stopped drinking because I just dont enjoy it anymore. You are probably ok before you start on therapies, but it will depend on what drug regimen you are on.
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SondraF thank you so much for taking the time to reply and for helping me. Your words help and make sense. I can’t thank you enough. Sending a huge virtual hug your way.
Can’t thank you all enough for the advice and uplifting stories. It helps so much to know there is hope that I can be w my son from 5 til maybe even 20 or 25 (praying
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I was looking up something else and other posts came up...google is not the place to look at anything re triple negative. Beyond depressing. Ugh. I hope that info is outdated.
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try not to look at google. I always go by “statistics are information , not condemnation” There’s always going to be people who fall into the stats and many who thrive a lot longer
I was diagnosed in 2018 de novo to my liver. One met . I was 30 and with a three year old. I know all too well the feeling of needing to be there for my son till he’s grown. That was my biggest worry and still is. This beast is unknown and we don’t know what is going to happen.
I am currently NED and have been for about a year (probably a little more ) and doing very well . It doesn’t mean the anxiety is gone but I know that things can change . But for now , I focus on what is now, and that is that I’m healthy I’m not triple negative.. I am on letrozole to keep things in check . For what it’s worth , there is a lady I know that has been NED for almost 11 years with stage four triple negative BC. There is hope that it IS possible to thrive for a long time to come even with triple negative.
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B-A-P thank you so much. Esp the story about the tnbc person you know. That helps me so much. To know it’s possible to be here for a while for my little one helps ease some of this horrible burden and worry. Thank you so much for taking the time to reply. (((Hugs))
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dlitt, the first piece of advice my gynecologist gave me after I was diagnosed with a malignant breast tumor was “Don't search Dr. Google and scare yourself."—some of the best advice I ever received. For you, just for now, eliminate those google searches about life expectancy as best as you can. You need to hover in the realm of good possibilities. That's why I recommended the books I did. And I'm currently reading another one called “Cured : the life-changing science of spontaneous healing" by Jeffrey Rediger, M.D. It's so good and I just started it. You need to fill your brain with this kind of diet, where there is hope. A book develops ideas and concepts in a much better way than short little paragraphs on the internet. You can also find a few documentaries on resilience and people outliving their disease, search Netflix and Amazon Prime.
I'm not a Miss Perky Positive person, far from it. But I've always been careful what I expose myself to. And don’t get me wrong, I fully embrace traditional medicine and would not be here now without it. But we must address our whole self, mind, body, spirit and learn to practice good self care.
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DivineMrsM. Such great advice!!! Agreed. Google is a nightmare. I will definitely stay off it and I have read radical remission, but will look at the book you mentioned too. Thank you for the sound advice. I agree w needing only positive energy and filling my mind w only positive and hopeful things. Thank you. I appreciate this community so much. Thank you all so much.
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Sorry you are having to go through this. I know it’s shocking but you will get through it.
In my case breast cancer is more like a chronic disease but it does not define me.
There are lots of us living with it daily - still working and raising families and leading full lives.I had my first bone met (femur) 4 years after initial dx and second bone met (sternum) 6 years after that (10 years after dx). Both times treated with radiation and followed up with a change in medication.
First met is not even visible on scans (no damage or scarring) I’m hoping the sternum met will be the same
My advice is stay positive!
Don’t worry until you know you have something to worry about.
Keep on top of all your appts and meds.
But live your life!
Yes you have a met BUT they found it early and now you’ll deal with it
And get support - from here, your family, your friends and wherever you can find it.
Hugs,
Marie
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MarkieK so true! Thank you for the uplifting words and advice. They now see 3 spots but all same area of bone so still hoping that’s all they find for a long time and can get rid of these 3. Mri in next week or 2 to be sure not more than 3. Praying it’s just 3 🙏🙏
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Hi Dlittkemann!
So sorry you find yourself here. Hopefully you can find hope in the positive stories you find here. I was diagnosed Stage 2 in 2001. Got the mets diagnosis 9 years later and I still remember the dreadful feeling hearing that news. Well, here I am 10 years out from mets diagnosis feeling pretty darn good. I've travelled a lot and am still doing so. Haven't had any i.v. chemo yet. Just started Ibrance and hoping to get a few years more on it. I hope you get to realize all your dreams. There really is hope!
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Thank you. I pray there is hope. It’s all new and I feel like I’m in a nightmare right now. But I keep reading and re reading all your posts when I feel so sad about all this. It helps. Can’t thank you all enough.
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