SHARE Metastatic Breast Cancer
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Newly diagnosed with stage 4

Hi I’m a newbie

Had mastectomy 24 yrs ago..no lymph spread..thought I would be ok..how wrong can you be!!

Found out have bone metastasis in spine ribs pelvis sternum and I’m devastated..found on Xray for fractured vertebrae

Have been put on lettozole and ibrance and injections of denosamub

Not actually started the injection yet

I’m 64 and a keen horse rider..have two horses and not ridden since diagnosed..feel that’s the end of the old me..quite depressed since this is all new and scary

Barbara

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Welcome. Sorry to meet under these circumstances. I joined about a month ago after finding some BC cells on a Pap smear. I was about 20 months out from my stage 2 dx. You’ll find lots of info that bone metastasis can be controlled for a long time.

My scan following the Pap smear showed Mets to spine and hip. In mid March, they found a small scab on scalp. We thought skin cancer but it was also BC.

I had asked my dr if ATV riding and horseback was ok for my vacation. He said “absolutely just be cautious “. If it doesn’t cause pain, moderation.

I am taking folsadex to put me into menopause, xgeva for bone protection, letrozole and Ibrance.

Hugs.

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I’m so sorry you are going through this after having stage 2. What type of treatment did you have earlier? What type of Cancer Center were you able to go to? Do they know why it came back so soon?

Thank you for being there for us! You sound like fun!

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I had a lumpectomy w 33 rounds of radiation. I did not do chemo. My oncotype score was 26. It said my chance of recurrence was 15%. If I did chemo, it was 13%. I was taking tamoxifen and lots of vitamin supplements.

I’m not sure why or how it came back so soon. While I worried about it constantly, I honestly thought I’d at least get to the 5 year mark. And I had a pet scan w my stage 2 — so I think I was a stage 2 that progressed.

Separately, I found out during my labs for stage 2 that I had elevated liver enzymes for at least a year. A biopsy and scan of the liver showed I had PBC which is an autoimmune disease of bile ducts. It’s important the liver filters toxins. I have no symptoms with the liver or the MBC. So, sometimes I can get by with denial 😊

But I do feel positive that I’ll be living w MBC a long time...maybe long enough that a trial finds a cure for the specific tumor or a long remission. ❤️

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Hi Barb,

Just like you I thought I was "safe". Double mastectomy in 1997 came back in 2008 stage 3 did chemo ,rads - the whole thing . Terrible side effects.

Then came back in bones in 2015. Spine, ribs, neck, hips,. Tried multiple drugs, zometa, arimidex, faslodex & a few others -that did not work and created an unbeatable quality of life for me. I am very drug sensitive. I'e had various radiation treatments to help w/pain (and it does help), also nerve blocks, also morphine (small doses) 2x a day. But I DO NOT take any of the chemo MBC cancer drugs. They did not work for me, my scans consistently showed progression & my life was nothing but handling side effects & feeling terrible every day.

Everyone says about the "new normal" I say it's all "abnormal"..just want to live my life ! I do pretty good. I' m limited for sure and am learning ways around things I used to do & enjoyed.

You will find your way- it is trial & error. It' a different way of living but it is living.

Remember you are in charge of you....you always have a say. Once the iniial shock wears off- learn whatever you can- keep a book of questions for the doctor visits, write down any side effects, thoughts & feelings.

I hope you have people who really love you in your life. I hope too that you live the best you are able and focus on the positives (easier said sometimes).

This is a great forum to listen & learn.

Wishing you blessings & many good days.

Janet

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So sorry to hear that the drugs did not work for you! In spite of this it sounds like u r staying as positive as u can. Bless u!

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It is amazing after so many years free that this cancer has returned! Understand the shock that u must have felt when u heard the news. It is the same for everyone in this board. I was ok for about four years when I was redisgnosed with Mets to bone two years ago. It does get a bit better once it sinks in and u see that the meds are helping. Stay positive and a new you will emerge.

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I'm so sorry to hear that you have mets now! But some good news is embedded in the info you shared. If the cancer is really a reccurance after 24 years, as opposed to a different form of breast cancer, the length of time suggests a very slow lay set of cancer cells! And with the bone mets meds available now, we don't generally die of breast cancer! Before the bone meds, bone mets would cause alot of fracturing and patients would become less and less mobile, eventually bed ridden and would develop pneumonia and die of that. If you haven't seen a bc specialist onc, you might want to do that for a second opinion from a doctor who is that specialized! The top tier of cancer centers here in the US are the ones designated "comprehensive cancer centers." Those are listed on the website of the National Cancer Institute, and they have specialist oncs who see patients and do research and are the ones who speak at the big BC conferences and teach other oncs about bc! Barb, my story is different than yours, but I have been living with mbc and bone mets since my first diagnosis of bc in March, 2004! I got almost five years from Letrozole, along with the bone drug Zometa, and then over 9 years from Faslodex and the bone drug Xgeva. If you had my onc, she might very well encourage you to ride your horses! She rescues "retired" race horses and was back at work herself a couple of days after surgery for an injury from falling off one of her younger horses! And I knew a woman with MBC who continued to show her horse after both of them had been treated for cancer! She had bone mets an her horse had lost part of its tail to a skin cancer! Quite a pair! For alot of us, the first months after this diagnosis of mbc are the hardest emotionally! It's very disconcerting and scary! And takes awhile to regain our equilibrium. I hope your fractures heal well and "uneventfully" and that you can get back to the activities that you love within a matter of weeks. Give your horses a hug for me! I had horses when I was a kid and have wonderful memories of them.......

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That’s reassuring about bone mets being treatable

I’m planning on getting back on my horse in a few weeks..I have one of those inflatable vests in case I come off!!!

I can’t believe that 6 months ago I was competing and driving a lorry to shows and now I’m weak and breathless all the time...I hate the new me

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Hi Barb! You and I are the same story. I had initial diagnosis in 2000 and was cancer free (or so I thought) until I felt an armpit lump this past November. You understand the total shock when you were certain FOR YEARS that you were “home free.”

My mets were similar to yours and my protocol is also the same. I did have radiation to the spine (10 sessions) prior to beginning the oral meds. My current oncologist believes the radiation was probably unnecessary.

You don’t mention your cancer type. I am hormone positive and her2 negative. My oncologist, who is also a researcher at the Seattle Cancer Care Alliance, told me that my cancer is slow-growing (given the time since my first diagnosis) and that it’s likely that the eventual cause of my death will not be related to my cancer at all.

Once you wrap your mind around the fact that you will be taking oral meds for the rest of your life, living with Stage 4 breast cancer is, while not the same energetic life you once lived, totally manageable and often much like life before diagnosis.

The first few months are the most difficult, Barb, but you will find your new normal and feel grateful for the miraculous drugs you are taking. You are in my prayers as you journey forward. XXOO Linda

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Hi Linda

My cancer same type as yours..letrazole Ibrance and denosemab..just started the Ibrance but so far no major side effects

I agree with you about the first few months being difficult to deal with.. I have settled down now I have a treatment plan..not crying all the time and eating more

Xx

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Good morning Barb. I read your post and saw myself to a degree in it. I also am very active (was) as is my husband. We hike, canoe, backpack, snow ski and race in an adult league. We have scuba dived for over15 years and have been lucky to dive in many places. I own 2 horse's also and have ridden my whole life and competed in combined training /eventing for almost 40 years. I keep my horse's at home. I am 63 and have worked full-time as a Nurse Practitioner for over 20 years ands a RN for 20 years before that. I had a lumpectomy followed radiation 11 yrs ago and told I was cured. I had a normal mammogram last April then in August of 2017 had a routine eye exam and they found a metastasis in my eye. Normal exam one year prior. Scans and liver biopsy followed and showed same cells as my first cancer, ER positive, PR negative, HERS negative. I still have no breast mass and no-one can say for sure if this was from my original cancer or an occult new tumor. I have multiple brain, lung, liver mets, a few bone mets, skin mets

and my eye met. I had total brain and eye. radiation following by 3 months of taxol I've. developed neuropathy and was switched to faslodex and Ibrance then to Venezio due to low wbcs. I was found to have blood clot from the cancer in my lung on routine repeat scans and put on blood thinner. I had disagreements in beginning with my oncologist but after several discussions with her as what I considered important to MY quality of life, I skied and raced a all winter although not with normal endurance and strength, plan on trying to dive, and have been riding this spring. I doubt I will compete this year, partially due to decrease in my income, but least I'm riding. I have been depressed as well, who wouldn't be ! But an antidepressant, a couple counseling sessions, and time has helped me cope. Try to remain positive and do what's important to you. No one can predict how you will do. I find often waiting Is hardest.

My thoughts are with you and let me know how riding goes!

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Hi

I agree with you about the depression when you’re used to being so active..it’s heartbreaking not to be doing what you want..you seem a determined lady and I admire you for skiing and getting back on your horses

I’m planning to ride very soon even if only a plod or a trot round woods..I’m just so weak and have lost muscle tone..my daughter has a horse as well so she can hack out with me as I feel a bit nervous at the moment..but I’m hell bent on living my life even if it is on painkillers

X

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Yes I understand. I am weaker than I have ever been. I have not jumped due to feeling unbalanced since the brain radiation. I have mostly ridden on trails only with a friend as I don’t trust myself. My horse is also a big guy, 1/2 thoroughbred 1/2 Percheron and 17 h. I broke him and have had him since he was 6 months old. He’s a great horse but likes to “test” you. I just don’t want to give up until I have to. I am glad to. hear you plan on hacking ! No better way to relax and commune with nature. My thoughts are with you.

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