Stage 4 metastatic breast cancer
My mom (48) was diagnosed with stage III breast cancer two years ago. She finished chemo and radiation treatment 6 months ago and just got results back that it’s now in her brain, lungs, spine and esophagus. She isn’t doing well mentally and every time we talk ( I live 6 hours away) all she does is cry. I’m worried about her mental state now because she doesn’t seem to be very optimistic. She has an appointment at MD Anderson in Houston in November but I’m wondering if hearing other people’s success stories could be helpful or if anyone has any information on what to expect moving forward. I think we are just a little in the dark and not sure what happens next or where we go from here.
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I'm 67 and had stage 2 breast cancer in 2015. I had a lumpectomy, chemo and radiation. I had been taking anastrozole since then, and found out last November that the cancer had spread to my hip bone, spine and lung. My doctor switched me to Faslodex, Ibrance and Xgeva which seemed to be working, but now the cancer is attacking my liver.
This month my doctor put me on Xeloda and said she has a patient that has been on it for three years, so I'm hopeful it will keep it from spreading. The only good thing (if there is one), is that breast cancer is so common there are many different treatment options available. If one doesn't work, perhaps the next one will. At least that's what I'm holding on to. Prayers for your mother that she will beat this.
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I'm stage 2 with Her2+ and Er & PR- but currently no spread to lymph nodes. I'll be starting Taxotere, Carboplatin plus Herceptin and Perjeta next week. Not sure what type of surgery yet because it will depend on if tumor can be shrunk. Then more Herceptin and Perjeta post surgery. What is/was your treatment plan? Taxotere and Carboplatin attack other cancers too. Not just BC. Herceptin and Perjeta are specific for HER2+
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I'm getting a bone scan, full body CT scan and MRI today (spending the whole day at the hospital) to see what stage-hoping it's not stage 4. I'm having a lot of really bad symptoms, I suspect it's in my bones and lungs, hoping it's not. They are saying for sure chemo, some Herceptin cocktail for one month, re scan to see if things are shrinking, then surgery (mastectomy) as none of my breast is savable, possibly both if lymph nodes in other side need to be removed, then more chemo, then radiation. Assuming my heart is healthy enough for all that. I've been very healthy up to this point but in the last 3 months my health has declined rapidly. I'm 54 yrs. old, very active, in decent shape, eat very healthy, don't smoke, don't eat a lot of processed foods. My breast tissue is so dense I could not feel the lump. I think I've had cancer for many years and just didn't know. I developed Paget's-a secondary cancer of the breast, which brought me to the dermatologist for a biopsy and boom....cancer. I'm 3.5 weeks from that original diagnosis and it has taken this long for a CT scan, bone scan and MRI. It takes so long for each step, then waiting....I wanted them to schedule the whole shebang right away but they would not listen to me. "This is the protocol" they say, one step at a time. My response to them: This is my life!!! Then they say-cancer takes years to develop, not weeks, nothing is going to change that fast....OK that may be true, but in the meantime I'm experiencing pain that I've never felt before in my ribs, chest, lungs, back, arms, neck...I can feel things happening to my body. I'm getting weak. I know a lot of people react that way when they get a cancer diagnosis but I really do feel that things are moving really fast inside my body right now. They did say my tumor is "very aggressive" so is it possible I'm not crazy? I told them before they did a lymph node biopsy that I know it's in my lymph nodes because I can feel it, I'm experiencing what feels like lymphedema, my lymph nodes are so swollen and painful...I know I sound crazy. When they did an ultrasound on my lymph nodes the nurse showed me what she was seeing and almost all of my lymph nodes were black (cancer) I really hope I'm wrong about my bones and lungs but so far I've been right...I do not want to be right today!
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Mine is HER2-, PR/ER positive, IDC in the sentinel lymph node.
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I’m so sorry for what you’re going through. I’ve had breast cancer for over 2 yrs. Mine is also rare and aggressive. I understand what you’re going through, the fear, the anxiety, the unanswered questions about YOUR body, the ticking of time that’s passing achingly slow or as fast as a cheetah when you’re in Sloth mode and need it all to Stop. I wanted to address what you wrote about their comments to you. My cancer was diagnosed in Sep. 2021 when it was 2.4cm. The lumpectomy was in Dec. 2021 and the tumor had grown to 4.8cm. Mine is rare and mine is like the speed of light compared to most. So, you have every right to feel what you do and you are correct. This is your life, you are the biggest advocate for your life and no one cares about it as much as you. You are the best detective of yourself and know what they don’t. They’re used to dealing with so many cancer patients sometimes that they forget that we are not standing and getting frustrated in some DMV line waiting for our ticket to be called. Anyways, good luck and sorry for the long comment. Goodnight~ Mayumi
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My scans showed that the cancer is in my lungs, three tumors. My health is declining very rapidly. Yesterday at the hospital (for more tests) my husband had to put me in a wheel chair because I could not walk any further to get across the other side of the hospital. (this was before we got the results). Now knowing it's in my lungs my symptoms are all making sense. I strongly feel that if the doctors don't do something soon I won't be around much longer. I just can't believe that in this situation that the doctors take the weekends off and make you wait weeks for the next appointment. I'm literally dying in my husband's arms and they are doing nothing to help us. My husband said if they don't do something tomorrow he's going to admit me to the hospital. My lungs feel like they are on fire, I have sharp pains in my chest that nearly knock me out, I can't walk very far, I get out of breath. I get cold when I pee and start shivering so hard it makes me cry, the list goes on....4 weeks ago I was running with my two dogs every day, now I can barely walk across the house.
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It may not be that the doctors are waiting around. My insurance takes a few weeks to approve PET scans, biopsies, etc. It seems like forever to get these tests done to see the cancer's progression. I'm hoping you get some relief soon.
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So sorry to hear you're having such a hard time. I hope things have improved since you posted this. And if you have posted an update, I will look for it and hope it's brighter. I am the caregiver for my wife (83) who had a mastectomy and lumpectomy 4 years ago. And some radiation about a year ago. It's currently Stage 4 and she has some skin metastasis going on, along with pain from the new tumor that's been growing. We have had some success with Ibrance and Letrozole, but when it stopped working after 16 months, we were changed to Faslodex and Kisqali. Neither of those worked for her, so we are going to start Xeloda in a week or so. Her doctor speaks highly of its success rate. Hope she's right. Your comments describing your weakness and tiredness hit close to home. My wife was always full of energy until the cancer descended on us. Now, like you, she has trouble maintaining enough energy to walk from the bedroom to the kitchen. I hope your doctors take some action pretty soon so you can get your strength back. You hang in there! We are all here for you.
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Stage 3 breast cancer, one lymph node involved ,and almost unseen light spot on liver. Seems to me, the more they dig around the worse it gets. Felt fine until the mammogram then boom! 6 months around and around at dr. I live 100 miles away from Houston, 3 hours round trip ,and the schedule back to back ,in different parts of Houston. Started Kisqali and lepro and on my first week off. I ask too many questions and it really makes me angry ,that they won't post results, scan on my chart. so you wait, and wait. I told my oncologist I want to know as soon as she knows! I can read the charts, my daughter is an RN and she stays on top of them. Fridays and weekends are a no,no! I have a"team" 16 to be exact, and the right hand doesn't know what the left hand is doing, constantly "referring" me to another person, that I have no idea who they are are what they are calling me about. Just recently, Ob/GYN teleconference. she asked ME what was the reason she was referred! I asked her WHY she was calling me. she said she had no idea, and said call her if I need to. BUT, she got paid .Then ,a "support" referral, and she informed me we were going to have a zoom, and be available! I told her I do NOT do zoom calls and she said I could just do it on my phone. I told her, same thing, different device ,teleconference ,maybe, and WHAT does she want? Want to talk about my feelings ,etc?? By this time, I'm very perturbed and THEN. she said I have to come to the office to talk. 200 mile round trip for a 30 minute consult, and she'll get paid. NOPE,NOPE. I understand how this goes, spent 4 months in Johns Hopkins with Stage 4 colon cancer. 35 radiation treatment and approx 200 hours of chem. THAT was a trip, but colon cancer free as of 3 months ago. no issues, so I have been around the block, and probably shouldn't be here. I can say one thing for sure, 6 doctors on my team, they all new each other and all had conversations. I have never, ever been treated better. I cannot say that about MDAnderson. I feel like I'm on an assembly line with no end .After my experience with Johns Hopkins, I KNOW what meds I cannot have ,and what I'm allergic to and there are a lot!! These in Houston insist I take this and that, and I tell them No. WHY would I take something I KNOW is going to send me to the ER? thank god I have no bad reactions to the Kasqali,lepro, no nausea ,no diahrea, but the fatigue is horrible .Have RA and it's a mess. All the tests, scans .bioposi, has triggered it until I'm almost wheelchair bound, fighting it tooth and nail. 10 mg hydro and 10 prednisone almost make me human again. I've been in touch with my"team for over a week, and no response. Most horrible week, can't walk, and afraid I'll fall. I was pretty happy with that particular formula and could actually function. I'm livid, to say the least. Have appointment nov 11 and there's gonna be trouble. When your a senior, seems like they talk to you as though you're 10 years old and don't understand. this assembly line medicine is not working for me. I'm so sorry for the rant but it's been rough 10days, and no sleep. Everything hurts, and no help in sight until Monday, if my 'TEAM" is not too busy! I ask too many questions and if they don't know the answer, they change the subject or they'll find out. I'm 77 and a fighter. I know about the depression and anxiety,and deal with it my own way. I do not want to be a zombie, and I think I'm intitled to know when THEY know. I'm a big girl and all I want is the TRUTH, not another pill, with side effects, to give another pill to fix the side effects. Makes know sense to me ! think it's a little overkill here! Again, sorry for the rant, but this is uncalled for, 2 more months on the Kasqali,etc.and pain meds, then pulling up stakes and going back to Hopkins, I've lived a long life and shouldn't be here now, but I'm going down kicking! Just know, because the doctor said so is NOT a reason to do it. Follow your gut and for god's sake be your own advocate. Ask a lot of questions and make the explain. Love to all, and keep up the fighting spirit!!God has you! Believe it with all your heart ,no one knows when your bar code expires except him! Period! NO FEAR!!
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My mom (58) was diagnosed with Stage 3 IBC at the beginning of COVID, and since then in June it's progressed to Stage 4 TN IBC with Spine, Hip, and Liver mets. I'm not great at being an optimistic person either but she's shown me what true strength is.
I don't know the names of all the chemos
My mom got Stage 3 IBC at the beginning of COVID that slowly became TN and then Stage 4 with mets to bone (c-spine and hip) and liver over the summer.
She's fought hard. I know everyone says the person going through it is the strongest person they know, and I get that now. I would have given up a long time ago to be real, but she has. I found out recently that her liver is basically at End Stage Cirrhosis... They are giving her a chemo to see if they can bring the BC lower but if they don't…
I'm not an optimistic person but I want to say this. My mom has one of the rarest forms of one of the rarest forms of breast cancer. And yet even shocking the MOs sometimes she's bounced back from some situations that don't make sense. Just two months ago her WBC count was at like 5,000 (you should be at 100,000 as a person taking chemo) and yet she bounced back to over 100,0000. In September her bilirubin was over 6 (it needs to be 1.2) and she's gotten back to under 4.0 and decreasing. She's a diabetic and at one point her blood sugar was like 500 and now it's 180-200. These are not exaggerations.
I have learned what true strength is. I have seen the face of a warrior. She keeps bouncing back from ridiculous situations. Realistically, her prognosis is very poor. I am a person who doesn't like false optimism and "pray for a miracle" hope. She doesn't have much time left. But she fights and she squeezes out time that I am shocked she has. It actually makes me feel terrible that I have been quitting mentally.
All that to say, encourage your mom to fight. Those Mets do not mean it's game over. Those Mets are not instantly a death sentence. My best friends Uncle has Stage 4 cancer of an organ in the abdomen, I forget which, but it metastisized everywhere. That happened 4+ years ago. He has to take chemo everyday but he's fighting and he's here, and gets to spend time with his family even with a poorer quality of life.
I don't think it's a bad idea to say you don't want to do treatment and just let things take their course and be comfortable, it's just as valid an option as fighting…
But don't give up and encourage your mom to not give up if you decide to fight. It's not over until it's over, but over doesn't have to be tomorrow, or this month, or this week, or years from now. She just has to keep fighting while she can.
Sorry for the essay, I hope any part of this helps.
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