Long term survivors

[susiemarmite]

Mental health still an issue for me. (Brother died just before my cancer diagnosis, too much all at once). Can I hear stories of people who are long term MBC survivors and thrivers? I have a 15 yr old and she only has me and her dad. Rest of family all passed away. X

[PJBinMI]

Oh, Susie, I'm so sorry about your brother's death! This cancer alone is so much to deal with and that on top of it has got to be tough. Then throw in the Covid pandemic ... overwhelming! I'm a long termer with MBC, with "extensive" bone mets from first diagnosis in 2004, 18 years ago. I don't think of myself as a "thriver" as I'm pretty tired most of the time! Just showering and getting dressed in the morning makes me need to sit down and rest! I guess I could go on and on about what I can't do anymore but that wouldn't be helpful for either of us! Things that help me cope are good support from my family, most of who live quite a distance away, and friends, my sense of humor, having doctors that I trust, our dog and cats, having learned all I could in the first few years after diagnosis, attending bc and mbc conferences and meeting others with mbc. Plus I can still do quite alot of the things that give meaning to my life. I was fortunate to be older when I was diagnosed, the month of my 58th birthday, with grown children, a daughter and two step daughters. I'd only been remarried for a bit over two years when I was diagnosed and my husband has been here for me. His first wife had MS and he learned alot about caregiving from that....poor guy having both of his wives having tough long term illness! My father had died about a year before I was diagnosed, and our four year old grandson died about two years in to living with MBC. That death was overwhelming--he drowned in a friend's swimming pool and his mother, the older of my husband's daughters, was overwhelmed. We did everything we could to support her, and it took my attention away from my own health, but that was one of the hardest losses I've ever had. Some times it feels like I just have to live one day at a time, but most of the time I seem to cope fairly well. It's very early in the morning right now and I can hear the birds chirping and that always makes me smile! Little things like that help......................

[susiemarmite in reply to PJBinMI]

Thanks for sharing ... xxx 18 years would be great - I'd get to see my daughter grow up, settle down and find her place in the world - she's only 15 right now and that's my biggest concern xxx

[PJBinMI in reply to susiemarmite]

I sure understand that! In the time I've had cancer, more and more of us live longer and longer. I wish women with children who still need their moms didn't get cancer! That always saddens me and seems so unfair.

[Nocillo]

Not sure about your definition of long term, but it’s been 7 years for me. With your daughter being 15, this would be a great time to bond over something you both enjoy and you can also impart the wisdom you wish for her to carry into adulthood. You have the time to prepare her and if you get to be a long term survivor, so much the better. I hope that is the case. Good luck to you three.

[Garden-Lady]

Dear Susie, I am sending you lots of love and care from England. I'm so sorry for you losses and challenges.I was first diagnosed ten years ago. I have been through a lot since then too, but what helps me is my son and my friends and more distant family.

Simple mindfulness meditation also helps me, and spending time in my garden. Take care of yourself. Xxx

[8576]

Dear Susie: I have been living with Breast cancer since 2010 or longer. Not sure because of circumstances it wasn't diagnosed until 2013 at age I just passed my 82nd birthday. We lost our closed nephew suddenly with a heart failure. Fortunately it has been a slow growing cancer but I am at the end of the oral pills. Not sure if I should go for IV Chemo or not. Right now I am taking Verzenio and it is working more or less. I have given up all household responsibilities. I live with my husband in a very nice facility were there is a wellness centre and a dining room. So I am very fortunate in spite of the diagnosis. I just have mets to one hip plus the lungs. The breast was removed in 2020. The best advice can give you is be kind to yourself.

Cheers, June S.

[Spartan6]

Hey Susie,

I’m a mother of four ages 16,15,12,10. I homeschool them and always have. I have Mets BC in my liver and bones and have been thriving for five years. My kids often forget I have cancer at all. I’m a youth minister at church and have been for almost 20 years (I’m 45). I’ve been through Ibrance and letrizole already and am now on capsitobean. This med makes my hands and feet tender, but my hair is thicker than it was. A trade off for sure. My husband and children like to help when Mom can’t open something. I take Tumeric to help my liver and joints twice a day and CBD oil in the morning (this helps with any inflammation caused by the drug or cancer, helps a little with discomfort too). I’m not in any real pain and continue to do yoga and strength training. I pretty much ignore that I have cancer until blood draws or scans come around. I’m fighting the good fight with all my might and that’s enough. God will take care of the rest. Every day is a gift I GET to do (though sometimes I’d like to just go back to bed😂). I have every hope that I will see my kids graduate and have written them all letters in case I don’t. All of this has made us take more trips, spend more time together and love more deeply because time is the only real gift there is. I should also mention that I helped my 15 (then 11) year old daughter through her own cancer after my diagnosis and she has been fine for four years. My father in law is now ailing and he has asked if I could help with his doctor appointments. It’s a lot, but I feel helpful and loved. God is my rock so I don’t fear death (I can’t spend much time worrying about that, it’s inevitable). Many prayers to you and yours! You can do this thing with Grace for yourself and others!!!!

[Threadsgirl]

Hi Susie,When I was originally diagnosed as MBC I had to have thoracic surgery almost immediately as covid was closing in on “elective” surgeries. I spent a fair amount of time during my recovery period in internet searches for long term survivors because I really needed that to have a hopeful frame of mind. There are a lot out there, more than I expected, and a lot of the survival statistics you see are no longer valid. I am only two years out but am living pretty much the way I always did, side effects of meds sometimes uncomfortable but tolerable. I have never been a bucket list person, have tried to live as normally as possible and this seems to keep anxiety at bay. I would celebrate life all you can with your daughter but not dwell too much on the possible future. Just my two cents.

[Mamacass67]

Hi,I'm a 14yr MBC survivor. My boys were 5 & 8 when I was diagnosed with it in my breast, liver, skull & abdominal lining. I have it in my hip but am still very active doing circuit training & jogging. It was devastating in the beginning as I was given 18 mths, but I'm still here & living my best life (currently in the South of France on a break).

[Mumberly]

I’m only a year in, and I asked a similar question when I found this group earlier this year.

I was inspired then, with all the responses, and I’m reinspired again now.

It brings hope and refreshes a positive mindset ♥️ and I hope it’s done the same for you.

[diamags]

Dear Susie, I was diagnosed in 2013. It was a very bad year. I'm now 8.5 years put and doing well. One thing that is very important, is your mental health. Please do not hold back from getting help, be it a therapist or anti-depressants. Both if you can do it. We are all different, with different needs. Please remember (when you're feeling overwhelmed) that you're doing the best you can, and that has to be enough.

[NPmary]

I have been living with MBC for 5 years. A much younger than me woman with young children who l rely on for support has been living with it for 13 years.

[viennagirl]

I am so sorry to hear about your brother. Of course, you are now really worried about your 15 year old daughter. I have stage 4 mbc but the Ibrance and Letrozole drugs are helping me. I am just over 2 1/2 years on this cocktail of drugs and I feel that I will live a long time because right now there is no evidence of the disease. So there is a lot of hope out there. So hang on the hope and believe in yourself. Hugs Marlene

[MCBS]

How kind of these ladies to take the time to give us hope! Beautiful souls ! Thanks

[susiemarmite in reply to MCBS]

Yes. Thanks to everyone who answered this post. Means a lot.

[Pbsoup]

Only 3 years in, but doing well...I ride horses, travel (most recently to India for work), and generally do my thing. There is always the nagging feeling that the other shoe could drop at any moment...but I try to shunt that away. My kids are nominally adults (21 and 28)but still need me... it's hard to think about. I would also like grandchildren--but that is a few years away at least...

There are a lot of medications being trialed right now...and we know more and more about what we can do to support ourselves with diet, supplements, exercise etc.

If it's any consolation, my Oncologist talks about a 10 year survival plan for me. And I have decided the 10 year countdown starts today, every day.

[Pbsoup in reply to Pbsoup]

Oh--Love your screen name. My husband is British and we lived in London when we were first married. I became obsessed with both Marmite and Twiglets

[Cowgirl1951]

Dear Susie,

My first diagnosis was 2001. Bone metastatsis in 2013. My daughter was in college in 2001 and I am blessed to have seen her graduate from pharmacy school and get married. She is my only child. I live on the east coast of US and she lives on the west coast but she is moving to Florida soon hoping to eventually settle in Tennessee.

I have had my bouts with anxiety. I hope it is behind me. No meds were successful for me. I did have Ketamine treatments which were a big turning point for me. Anxiety can be awful when you have cancer.

I was a front seat passenger in a head-on car collision and lost a dear cousin at the end of 2019. Plus I was going through a divorce. It took two years to be able to walk around the mall. In the beginning I called myself a bench walker. In the mall I walked from bench to bench until I was able to walk without sitting down. I am inspired by an aunt that lived alone until 95. Her goal was to keep moving.

I am 71 and single. I focus on my health. I cook my meals so that I know what is in my food. I have taken up shag dancing twice a week. I do one dance and sit down to catch my breath. I have shortness of breath from the car accident. Other days I go to the gym and use the rowing machine. It's a full body workout as well as an aerobic workout. In the summertime I like aerobics in my apartment's swimming pool. My goal is rest well, eat well, and exercise some. I have great friends from my Sunday school class. They are my rock.

Life is a journey and may your's be as long and as active as mine. Sending you a hug and love.

Kay

[Hidden]

Your have lots of Life and Love ❤️ Do not stress it's not good

Cry yes anytime

Sorry for your loss

Hugs and Smiles