Would you share your Stage IV story with us?
Comments
-
just had reconstruction today at Sloan! Waiting to go home.! Excited to continue with the stage IV Forums because I need the positivity
0 -
chronquist22
Am going through the same here from past 5 months. It feels like life is heavy.
My mom whose has taken 7 chemo so far including 4 taxol(Paclitaxel & Invotaxel), tumor is still in progress, specially in lungs. Doctor told that she can survive few months to a year.
Would be great help if any one refer me a good onco in india, who can take my mom case as a challenge.
Hoping for good everyday!
Thanks,
Bhavana0 -
Having MBC is and will be the hardest thing a woman has to face.
I am one of them.
I went from Stage 0 to Stage IV in less than two years. (My Mom had BC at age 54)
Went for regular Mammo and sono. Next day my Doctor referred me to a Breast surgeon.
My breast surgeon was upset with me that I skipped one year not having a mammo... I had a bad fracture and bone infection and broken jaw I was dealing with).
Breast surgeon sent me to an oncologist. He ordered me to have a port put in and more tests - MRI, PET- CT scan, bone scan.
Had the port surgically installed in December 2017. ..Next day I was suppose to start Chemo. That is when the Oncologist read the scan reports. He told me Chemo is out of the question, being the cancer had spread to surrounding breast area, lymph nodes, and bone.
Big oops! Major mistake I say. He should have ordered the scans first, then decide on treatment. So the port is no use, being it can't even draw blood.
I have been on Ibrance and Leterzole for several months now. Went to Sloan for a second opinion. Big mistake. Felt like cattle. Communication was horrible. No follow-up appt made. Received a call about a bone biopsy, Which I no knowledge of, etc. Never went back!!!
Had another PET-CT Scan in April, and great news the breast tumor has shrank drastically.
Went for a check up at my breast surgeon In May and I told him about the scan. Now my breast surgeon wants to immediately do a mastectomy. He doesn't want me to wait. Is this another rush job???
Not sure if I should have it done?
I had lymphoma in my left leg after my total hip replacement. ( That is where the cancer is showing up). After months and months of treatment, and wearing a customized shocking. I had my left knee replaced. Surprisingly after that, my lymphodema subsided. No more treatments, no more thick heavy stocking.
So the dilemma is a major one for me, mastectomy or not.
0 -
Chrstene, can you get another opinion? Since its metastasized to the bone I wonder if the mastectomy will do enough. Many are getting good results on Ibrance without the surgery. If it is localized, surgery would be worth it, but I see your dilemma. You don't provide your details so I could be way off and missing something, and I am not an expert by any means but only putting in my 2 cents worth. I was dxd Stage IV de novo, went straight to Ibrance, and now have no active disease after 2 years. I have no idea how long this will last, and that is the hope with a mastectomy that it will give you more time than meds alone. Why the Ibrance and a mastectomy at the same time? Doesn't make sense to me, especially since it appears to be working.
0 -
Hello. I was diagnosed with metastatic breast cancer in 2011. I have done very well considering. Have been om Taxotere twice, several orals including Ibrance, Afinitor and Zometa. Also I just had 6 months of Faslodex shots. Each had it's own side effects, but nothing too troublesome. Now it's on to Halaven chemo which is a very quick infusion. My big concern is them running out of treatments to give to me. I feel good and activity in the liver is not expansive at this time. I have one beef with my Dr. She keeps using the term " the disease" which does not make me feel confident. I am not the disease. I have a disease. I am trying to coexist with the bad guys and keep them at bay as best I can.
My BC history is as such: Diagnosed in 1998 cancer. usual treatment. 6 years later had a local recurrence on chest wall followed by radiation. 6 or so years later the metastatic diagnosis. Here I am still thriving. I hope I can help others who need a little reassurance and support.
0 -
Chrstene502, I know your post was about 2 months ago but your post intrigued me. Did you ever get the mastectomy? I was diagnosed Stage 4 de novo at 39 in January 2018 (2 bone mets) and went straight to Kisqali and Tamoxifen. I was under the impression that once MBC is diagnosed, mastectomy is not common since the entire body needs to be targeted. My onc is not for it.
IntoLight, I love reading that you have no activity of disease 2 years in! I hope to get there someday soon.
Doloseb, you are a Rockstar! I am only 7 months in, and this is the hardest thing I have ever done. Posts like yours keep me hopeful.
0 -
Hi BjKinNebr.
I'm 65. I just recently found out that I have stage iv cancer. In the last couple of months I've been googling the terminology from all of my test results to get a better understanding of what's going on. Many of those searches linked to more information which could relate to my own diagnosis, but not necessarily. And I've thought about my younger sister and a long time co-worker both of whom succumbed to different kinds of cancer in the last several years. I've been trying to sort out how to live with the idea of having cancer and wondering what sort of living is ahead of me and how much. It is fair to say that I've spent too much time focusing on the likely hood 's and I have compared my situations to others. But stumbling on to this forum has really been a boost for me. Your wonderful advice included! This cancer isn't like a recipe in a book, laid out step by step leading to the finished product at the exact moment. I am amazed by the different journeys described in these posts. Anyway, thanks so much for your wonderful advice. I wish you strength, courage, and many more laughs as you make your way through the traffic on your cancer highway! Take care!
0 -
In Sept 2010 I was diagnosed with stage 3 left breast cancer. It had spread to 18 lymph nodes. Abd was estrogen +Had mastectomy in Oct. Received chemo and radiation. Right breast removed Nov 2011 because of alot of nipple discharge. It was benign. Had DIEPP breast reconstruction in 2014 and meat to fix incisional hernia in2015. All was good. In Feb 2018 had a CT because herniated giving some pain. Found a 9cm growth on my left ovary. MRI showed it was benign but when it and ovaries were removed aoril 20 pathology showed breast cancer in both ovaries. Have been taking Ibrance and letrozole for 3 months and CT and bine scan every 3 months. So far all clear. This is a long story but feels good to share with people that are going through the same thing. Thanks for listening
0 -
Hello all! My name is Tina. My journey has been a long strange trip. They found my cancer by accident! Really.
In 2005 I had a head on car crash on Thanksgiving morning so I've had years of neck and back pain. I noticed in Feb 2014 my bra straps were sliding off of my left shoulder. Defective bras, right? I bought more. They fell off too. I bought rubber shoulder strap holders. Then I started losing my grip on the left side. I still didn't put 2 and 2 together. Then in August my dog knocked me down in the yard, she' a big German shepherd and she clipped me right behind the knees. Whiplash fall, boom. The doctor sent me straight to the orthopedist and in December I had a 4 level fusion of the cervical spine. C-3 through C-7. I was down for months and every time I went to the doctor I told him that I was having increasing pain in my back, hips and legs. Oh, that's just from the brace and how you are having to sleep, he told me over and over. Then it was, Oh you are so large breasted, (I was a 38JJ) they are pulling on your back, you should get a reduction.
Okay, so, the pain didn't go away. Insurance didn't want to do a reduction. I was miserable. Almost a year goes by and I'm on my way to another doctor appointment and what happens? A deer runs across 2 lanes of traffic and right into my driver door of my truck. I almost jumped out of my skin! My startled reaction yanked everything in my spine. Back to the orthopedist, long story short, I'm in a world of pain, he does a myelogram, sees 'something ', I get the reduction because it' either that or another spinal surgery according to him, and viola! They found cancer in both breasts!
Thankfully, the reduction removed all of the cancer from my breasts but the pain I'd been feeling was bone mets in my skeleton. Skull, sternum, most of my spine, ribs, tops of femurs, hips, no wonder I hurt! Every year I had gotten my mammogram like a good girl and this sneaky cancer was one that hid in my breast tissue by making a chain instead of a lump.
Ive been in treatment now for almost two and a half years. Just after diagnosis, 4 weeks after surgery, I had been coughing and found that I had ripped open my stitches. That same night I developed PE blood clots and ended up in hospital for several weeks. About a year into treatment and doing well on Ibrance, I thought, I developed a rash across my chest and on my abdomen. It was the cancer. I was in radiation from June until New Years. It left a wound on my left breast that would not heal until I went to hyperbarics. It finally healed about a month ago.
Right now they tell me I'm doing well no signs of disease and all mets are healed or healing. I am only taking Exemestane and pain meds at night. I can live with that.
0 -
Welcome, Kittenmom! And thank you so much for sharing your story, what a story that is! We're thrilled that you're NED, and we're so glad you've joined us here.
The Mods
0 -
How to start? I was a healthy 55 year old getting ready to retire after almost 28 years in Law Enforcement. In 2007, I was diagnosed with a benign sist in my left breast and had an ultrasound which confirmed this. For years after,I got diagnostic mammograms. In Jan 2017,the cyst began to get larger so my doctor sent me for another ultrasound. The radiologist said it was a fluid filled cyst, nothing to worry about just cut back on Caffeine and I could begin yearly screening mammograms. In Jan 2018, I went for my mammogram and the radiologist report came back normal. Several months later I received a report stating that I had dense breasts and should continue with self exams. In April, saw my regular doctor who suggested I see a breast surgeon if I was concerned. After my exam, the surgeon said he wanted me to have some tests. After making appointments to have an ultrasound, and MRI. I received pushback and was told that an ultrasound would be enough. I contacted the Surgeon who called the hospital and told them to give me the tests he ordered. I was initially diagnosed with Stage 3 BC in May. My husband then contacted an oncologist who then sent me for a Pet Scan and brain MRI. It was then I was diagnosed stage 4 as the cancer had spread to two areas on my spine, my right rib and my femur. Since then I was put on Letrozole and Verzenio. I have had radiation in all 4 areas and a rod placed in the femur. Side effects have been minimal with exception of not being able to eat solids for a month due to radiation in my neck. I am due to have a pet scan later this month to see if meds are working. I am also starting Zometa infusions this month. As I look back, did I not ask enough questions, should I have insisted more be done. I have no history of Breast cancer in my family what could I have done differently. I plan on living with this disease an i am not giving up.
0 -
Dear Whyus2018,
Welcome to the community and thank you for sharing your story with our members. We wish you all the best. Please stay connected her and keep us and our members posted. We know that others will benefit from hearing your story. We hope that you will also benefit from the support that is available here. The Mods
0 -
In a nutshell, always been very healthy and active. I went to the Urgent Care after a month of not being able to hike due to shortness of breath, some chest congestion (I couldn't expand my ribcage enough to breathe deeply) and low grade fever on and off. Just wouldn't go away so I thought I may need antibiotics to kick whatever was ailing me. Surprise!
November 2017 I walk into the office and they do chest x-ray to see about the congestion. The doc comes out and says I have something "eating my bones" that he suspects is cancer. I say whaaaaat? receive my antibiotics and go on my way. Felt much better but PCP scheduled a bunch of tests (all expedited, yikes) to see about the bone thing. MRIs and PETs and density tests, mammograms, blood work, biopsies, etc., officially diagnosed with Stage IV breast cancer two days before Christmas. Spread to lymph nodes and bones from mid-thigh to cranium but all organs clear. Scary stuff.
On hormone/targeted therapy for a year now (Ibrance/letrozole); last PET shows receding cancer nodes, slowly but surely. Looking forward to my end of year PET to see more progress. Feeling good with mild side effects and life is near normal.
0 -
Mods I had the opportunity to tell my story about a month ago. I was in a fashion show. During the day I was interviewed by Suzanne Lindley, the Founder of Say Yes to Hope. The video was done by John Brune who donates his time to this organization. The video is now on u tube. I released it to go public. My name is Vicki Medlin. I'll try to write the link here. I was able to share it on liver mets, y90 etc thread.
It tells my life story about BC and MBC. I thought you could share it here or anywhere that it might help others with MBC.
0 -
Hi Grannax2, Wow, you did an amazing job. And Yes, we'll work to get this out. Also, the link for the YouTube wasn't working, so we fixed it and named it.
Congratulations and thank you for sharing the story to help ALL the other amazing individuals going through metastatic breast cancer.
0 -
Thank you mods. I tried Vick's story of MBC and did not get the video.
0 -
Grannax2, we fixed the link. Our apologies!
0 -
Thank you, Mods💞
0 -
Hi Rachel,
I just read your inspiring post. I hope this note finds you doing ok.
0 -
Whyus2018, you say you didn't ask enough questions, but you did. You asked more than many people do because most of us are pacified with or believe in a negative mammogram and even an ultrasound. Not many go any further than that . You did all the right things just like most of us. Problem is that those in the practice of radiology need to become better educated. We need a way to educate all involved in how to go past an assumption of Negative.
Maybe it's with routine biopsy for any blip on the screen whether it's dense breast tissue or not.
I had just had a negative mammo and then went to a dermatologist with a growth on my thigh. It was biopsied and came back "metastatic carcinoma" , and a dx made thru an oncologist for breast cancer. Had I not had this thing on my thigh, I would have still never known. Scary, huh?
0 -
PettyR22 (Rachel) there's some that make me cry hard as you do. I just can't fathom a woman who is a new mother or has small children being diagnosed with BC. I am cyber hand holding with you. I wish you many years with your (1 year old) baby. I really don't know what to say. Just know you are in my thoughts .
0 -
princessfluffybritches, that is quite a story of your diagnosis. You may want to write up your story?!
0 -
I have an update on my status of stage IV breast cancer metastasized to my bones. I have been doing so well since June of 2017. I'm amazed that I rarely need to take pain medication. Just in the last three weeks though, I had pressure in my chest and pain by my right scapula. I went to the ER because I thought I could have pneumonia, but they found nothing. About 10 days later, I was up all night with pain just below my ribs on the right. I went to my MD the next day and she suggested an ultrasound on my liver. She called and told me there were 3 small tumors. So then I went to my cancer doctor and he compared the CT from 10 days earlier to the ultrasound. He felt that something was amiss, like maybe the reading was wrong. He ordered a brain MRI and PET scan. I had those tests yesterday, but I have not heard any results. I'm really talking to God a lot and hope it isn't in my liver, but those of us with this disease know it eventually travels. I'm having a hard time with thinking of hours of chemo and losing my hair when it comes down to that. Maybe that is selfish on my part, but I sometimes feel that it would be easier to just let it go and not do treatment. My Mom was just diagnosed with lung cancer and all we do is sit in doctor's offices.
0 -
princess That is quite a story, very scary. So are your mets in your skin? Any other sites? I assume they found a tumor in your breast. Ibrance is very efficient. I'm hoping you'll do well on it for a long time . Have you had a scan, did it show improvement? Welcome BCO. You'll find were all very encouraging, ask anything and have an answer or several.
0 -
Djankord1, we are hoping very much with you that there is no additional spread. The scans and the anxiety associated with it, and waiting for results, can be so overwhelming. We are here for you, and please let us know.
0 -
I just found out I have widespread hepatic metastatic disease and widespread osseus metastatic disease with significant hyper metabolic activity suggesting active disease. My SUV values are up to 15.
0 -
Is anyone on who has been diagnosed with this?
0 -
Djankord1, it's a nightmare finding out all this. The meds out there work wonders. I personally think losing all one's hair is not worth the time thinking about it. But I don't think it's selfish. Do the treatments and get a second opinion . I have it throughout my bones.
0 -
Granny and Mods, the mass in my breast never showed up on scans. I have probably had breast cancer for a few years with negative mammos. The OC and surgeon were quite surprised with a growth on my thigh -biopsy that came back with metastatic breast cancer. I had gone to a dermatologist because the growth got bigger, and they sent a biopsy and it took them a month to get the results and they claimed the lab was slow!
So far I'm on Ibrance and Letrozole, and had 2 pet scans and the second one shows no new growth and some shrinkage. I hope this lasts a while. But the feeling of waiting for the other shoe to drop is always there.
0 -
How I Was Diagnosed: I had flu-like symptoms, which progressed to shortness of breath and was misdiagnosed at an urgent care as pneumonia - they did not do a chest x-ray. Symptoms progressed and I contacted my oncologist for a chest x-ray. I had the x-ray at 2 PM, and by 6 PM that night, I was sent to the hospital as a direct-admit to ICU for thoracentesis of a 2.5-Liter bloody effusion. The next day I was told it was metastatic breast cancer. Originally diagnosed as stage III in 2016, I knew my chances were pretty good it was going to haunt me at some point, but when I asked doctors to tell me what to look for during those 2 years, I got shoulder shrugs and the famous, "Every patient is different, Sue."
I tried to act very grown up when the thoracic surgeon told me it was pleural mets. I did not cry or make any real comments, but was actually relieved it was not a new primary in the lung, which was his original thoughts. However, that was the longest day of my life. The ICU nurses were great, made me comfortable, and I was given such loving support from all. I told them I did not want to talk about the prognosis or anything else, either.
Concurrently, my mother has new-onset dementia, and my sisters and I provide 24/7 care for her, as well. I knew my sisters would be picking up my slack as I recovered, and I cried more about that than I did about myself, although there was a good deal of that later on.
The Hardest Part: I was diagnosed on December 14, 2018. Because my doctor was leaving the oncology practice, I did not start Ibrance until January 16, 2019. Faslodex was initiated, but it caused me to have tumor flare and it wasn't fun. I walked around for a full month, knowing I now had metastatic cancer, without treatment! It is so funny how the medical community tells you early detection and treatment save lives, and yet, I was walking around with untreated cancer because of snafus in the doctor's office!!! Ibrance wiped out my counts when I did finally get, but I started that again and a lower dose of Faslodex, too.
Going Forward: The new oncologist is great, but is here temporarily, which is shattering my self-confidence because one day I went in for a followup, and the doctor meant to replace the one who left the practice, actually quit! For several months now, I have felt everyone wants me to walk around with an "it's going to be okay" and you'll be fine attitude, but I am not there. I believe I will get well again, but there is a denial/anger/acceptance thing I still seem to be dealing with.
I truly wish they would stop advertising breast cancer drugs on TV for a few reasons: When those ads came on when I was in remission, I didn't want a reminder. Now, I am not in remission and those ads just upset me. There is no "New Normal." It is abnormal to have this stupid disease rewrite your life story, disfigure your body and mind, and then say this is normal. I am thankful to God and scientists for coming up with ways to help us continue the fight, but advertising drugs is unnecessary when your oncologist will ultimately decide what's best for you. It's not like you can go to the drug store and say, "Give me a pack of gum and a 21-day supply of Ibrance!"
One more thing...it's about those cute pink ribbons! I would give my eye teeth to feel like a woman again. Anything that takes your hair, eyebrows, breasts and even the condition of your skin, is not feminizing at all. Most breast cancer patients I've talked to don't like them, either. They remind me of a time in my life when I could buy pretty lingerie and feel pretty. Can we find another symbol? Not only that, but men get it, too, so I am not so sure how that represents breast cancer using "pink", either.
Thank you for reading this, if you were able to get through the whole thing. I have kept my feelings inside since December so that other people in my life can "cope" with MY diagnosis. If nothing else, know that writing this helped me deal in real terms with what is truly happening. I'm just plain scared.
0
