Would you share your Stage IV story with us?
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Hi everyone, I am Raine. In December I went for a routine mammogram. I had just turned 51. Had mammograms in the past, but not recently. I believed that if there was no family history of breast cancer and the last mammograms were normal, I was golden. I was in the room with the tech and she was staring at my breasts and asking the usual questions but maybe a little more thoroughly than I was expecting. She took the images and asked me to wait to see if the radiologist needed better images on the first breast. I figured I had moved or something. When she came back she did some more images. I had an idea that something was wrong when the radiologist came in and told me she was going to do an ultrasound. I knew that there was a tumor there, I could see it on the screen. She said I needed to have it biopsies and I asked if we could wait until after Christmas. (I work in retail (as a bra fitter) so all I was thinking about was how I was going to work all this into my schedule.) She snorted. Well, I was scheduled for the following morning. I have to admit to being a bit anxious for the results, but as Friday went on, I felt better and better. Surely if there was a problem they would have called me right away. The call came at 8:30 just before the store was to close. My pcp said I had IDC and was seeing a breast surgeon on Monday. I don't think I heard a word after cancer. After calling the doctors office in a panic Monday morning, I had no idea who I was seeing or when, I met with her and she is wonderful, as is my MO. I was set up for a bunch of scans the next day. She called me the next day. It was in my bones, stage IV from the start. No mastectomy for me. I was so shocked. I had started taking bio identical hormones in August. I had told the gynecologist that I thought I had fibromyalgia but she cautioned me against self diagnoses. All the things I was complaining about were signs of hormone deficiency. I now know they are also symptoms of cancer. In my defense, I did ask her if bio identical hormones caused breast cancer. She said,"definitely not. There have been no studies showing that they do." Of course, as I found out later, there have been no clinical studies on BIH period. So, I was feeding the dang thing. Fast forward 8 months. I am on Arimidex and Xgeva. We just added Ibrance to the mix. I realised the other day that I finally feel like myself again.
The good things about a stage IV diagnosis... I no longer put off doing things for myself. Things don't bother me as much. I guess it has made me reassess my priorities.
I thought I hated my hair until it stopped growing on the Ibrance. And why is it that the only hair on my body still growing is the hair on my chinny chin chin?!!
I do wish people would stop telling me I look so healthy. It makes me feel like they think I am faking.
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Hi there... My name is Kathy. I am 46 yrs old and I was recently diagnosed this past June 2015 with Invasive Lobular Carcinoma which unfortunately turned out to be stage IV Metastatic Cancer once all the scans were completed. The Cancer had invaded a good portion of my spine, clavicle, pelvic bone and several other numerous smaller places. Luckily it had not invaded any major organs and it was only in the bone. I am one of those people who always did everything you were supposed to do. I got my yearly mammograms, I did self breast checks regularly... I have zero risk factors and yet here I am with stage 4 straight out of the gate. It's a hard thing to accept. I feel betrayed, singled out and desperate to know why this has happened. What are the odds that I would get a type of cancer that is not detected by mammogram, that doesn't feel like a lump?? And, a cancer that normally occurs in post-menopausal women. But, we are where we are and I have no choice but to try to accept it and move forward. I just completed my second round of treatment. I am taking the new chemo pill called Ibrance, I am getting two types of monthly injections, Goserelin and Fulvestrant, which are hormone blockers, and an IV infusion of Zometa. I had terrible side effects with my first dose of Zometa... extreme pain, vomiting, and yes, I even fainted. So, needless to say I have already developed treatment anxiety. We decided to do Zometa again this month to see if it was just a fluke and the second time I handled it much better. I have extreme fatigue and back pain so I'm having to limit my activities which is tough having been active my whole life. I have 4 amazing children. A daughter age 15, a daughter age 18 who just left for college, a 22 yr old son, and a 23 yr old daughter who was recently commissioned into the Navy. And then there is my incredibly supportive husband. One thing I have learned already is that no matter what age you are when diagnosed there is always the fear of that next stage of life you will be missing out on. For me, it's the fear that I will never meet my first grandchild, or get to see my children come into their own as adults. As mothers, we work very hard to raise our children. Our reward is to see all of our hard work bear it's fruit as our children become adults. It breaks my heart that I might not get to be around to see this happen. My oncologist is very hopeful for me, but I have difficulty finding hope in this very bleak diagnosis. I am anxiously awaiting my first 3 month scan so I can see if the treatment plan I'm on is actually working. Maybe then I can rest a little bit easier. For now, I'll just keep biting my nails. I have met some really amazing and supportive people, some who were absolute strangers, who have reached out to show me support. And, ironically, I have an ex-sister in law who also has the same diagnosis. (very weird) She reached out to me and we've been helping each other along. I am very grateful to have her in my life right now. Here is my lovely family... and my one best reason to kick Cancers butt for as long as I am able! I am a stubborn and tough lady and ready to head into battle! From left to right is me, my 23 yr old, my 22yr old, my 15 yr old, my 18 yr old and my better half.
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Chattykat what a beautiful family. Praying that you get great results from Ibrance. I am taking that now also. There is a great thread for Ibrance that you should check out. A lot of wonderful and supportive ladies with a lot of good information.
Dorothy
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Chattykat - beautiful pic of a beautiful family!! I get what you are saying. The first months after diagnosis are especially tough. I also have ILC, and I'm on Ibrance/Faslodex too. As Pearlady has suggested - please join us on the Ibrance thread. I think you will find it very helpful.
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Hi my name is Kristin and I was diagnosed two years ago in July of 2013 at the age of 43. All of our stories are uniquely our own but they have all brought us to the same place. When I first found the lump in my right breast I was assured that they had caught it early and after a mastectomy and chemo I would be "good to go" well that isn't what happened after finding 11/21 lymph nodes were malignant and doing cat scans and bone scans I joined the legions of women/men diagnosed with metastatic breast cancer.I have been relatively stable for the past two years with multiple bone mets-my doctor was right after all I am "good to go" I try and live every day like I would have before breast cancer invaded not just my body but my life. I have five beautiful children and one awesome 12 week old granddaughter and I make them my priority every day and have let the cancer know that's it's along for MY ride. I am well aware that my days of being stable and feeling good may come to an end and as I've said before I hope that handle the changes in my future with grace and dignity but I am going to keep living my life with metastatic breast cancer. My husband has been source of great support and doesn't let me dwell on things for too long-he always there to fight with me-this has been hardest on him because he wants to "fix" everything and make me better and coming to terms with the fact that none of us has control has been tough for him.
The worst part for me is the lack of control and uncertainty and how that impacts my children-they know I have a terminal disease but as we say in my house-suck it up buttercup! We just keep moving forward. My older son likes to say that our lives are like living in a horror movie you can hear the creepy music playing and know that something is going to happen but you don't know when.
I wish none of had to deal with this disease and I am hopeful that one day I will be NED like the ladies on here who give me hope for many more years
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Thank you both so much for sharing your powerful stories. Chattykat, beautiful family! And welcome to our Community!
Raine-Wells, would you mind sharing a photo with us as well?
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I will head on over and join the Ibrance thread...
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It's a difficult process, after 4-1/2+ years to go back and relive all the events that were set in motion at that time in my life. It's difficult because I'm not one to like to regurgitate so much, not because I find it so emotionally painful, but because I believe that there are many people out there struggling with much worse in their lives. I may have Stage IV cancer, but I'm alive, functioning well, and trust that God walks me through all the tough days & good days of my life. I trust that I can acknowledge that I might have difficult times ahead, but I know He will be my comfort, the source of daily grace for living, and my hope of heaven.
But in order to possibly be of encouragement in any way I can, I'll try and start at the beginning. In October 2010, I noticed that I was awfully tired, unusually so. Since sometimes I couldn't get a good night's sleep due to some sleep issues since having children, I just chalked it up to poor sleep & kept at my normal busy schedule. I had a son & daughter in college (same college) in western Pa., one at home I was still home schooling (I hs'd them all from the time they were 4-5 years old), and was very busy with a large choir that I helped administrate. I also did my husband's business paperwork. I probably shouldn't have ignored the fatigue; this kind of tiredness was the type where I had to find a bench while grocery shopping, and that wasn't like me as I went to the gym regularly & wasn't prone to resting during the day. A trip to a petting zoo for pumpkins left me sitting down midway and an evening prep for a fund raiser forced me to the sofa. I also noticed that, once it was late October/early November, I was finding that digestion seemed a bit off as some meals made me have some pain afterward. I needed to go and see my primary physician to renew cholesterol and high blood pressure meds anyway, so I mentioned it to her in early November at my 6-month checkup. She immediately took a good look at my labs and saw that my alkaline phosphatase numbers were way above the normal levels. She suggested that it could be a gall bladder issue and sent me to a surgeon. Bringing with me the lab results, he looked at them and concluded that the numbers were even too high for simple gall bladder surgery, consulted back to my primary and I was told to quickly have a mammogram. This was November 2010; the previous January of 2010, the mammogram I had scheduled had to be cancelled due to the machine being broken. I never did reschedule it, figuring I was alright, no reason to worry and the previous one had shown nothing. So, this late mammogram seemed to indicate, initially, that some sort of breast cancer was present and needed further (CT scan) study. While I was going from one test to the other, I really never imagined anything too serious. But I do remember realizing that I needed the written report to accompany one of my scans on a disc, so went back and picked that one up. I remember that I was driving to WaWa to get the car filled with gas & reading the report while sitting in the car , and as the news sunk in that the report's findings were not good, calling my sister and breaking down on the phone. The CT scan indicated a lot of tumor in the head of my pancreas, so Fox Chase Cancer Center (FCCC) initially diagnosed my cancer as pancreatic.
At that visit to the oncologists, I had my husband, my sister, and my pastor with me, all there in the office. When they said pancreatic cancer, I remember my husband's reaction. My husband is a quiet, unassuming sort of good guy who will do anything for me; I just sometimes have to explain to him what I need (that took me more than a few years to learn). He started to cry there in the office. It was a bit hard to absorb because it seemed that they were telling me that I only had a small amount of time, perhaps 3-6 months. My pastor prayed with us, helping us all to calm down and try to figure out what was next. After a couple more tests, including a liver biopsy, they realized it was an aggressive (HER2+) form of breast cancer that had already metastasized into my liver. There was so much tumor that it had spilled over into the head of the pancreas, making diagnosis confusing. Diagnosis was HER2+, ER+, PR-. I had only just turned 50 previous several months before. I remember my primary being awfully glad it was "only" breast cancer. At that time, I didn't quite understand what she meant. Cancer was bad, no matter what, I thought. Nobody in my family had a prior history with breast cancer, so it wasn't something I was expecting.
By the time a firm diagnosis was made, the tumor accumulation in my liver was snowballing. I could not sit up for long periods of time due to my mid section becoming so distended from tumors. I couldn't walk much without needing a wheelchair. In order to shop, I now needed one of those motorized carts. I was out of breath, in some pain, exhausted, and could barely digest anything (fats don't digest when the liver is compromised). I lost over 30 pounds in about a month, while getting a port installed and meeting the breast oncologist at FCCC. We weren't even sure if the chemotherapy they planned to try would work, and I was not doing well.
The day I started Taxol with Herceptin was December 13th, 2010. Again, I had my posse with me: husband, sister and pastor. My sister is older than me, very protective, and kept insisting I ride in a wheelchair, for which protectiveness I was very thankful as I needed it. That first day was long, and my infusion nurse, John, at FCCC was wonderful: gentle, patient and willing to take all sorts of time with us. Premenopausal symptoms had only recently started flirting with me. That day, I was there for probably 7 or 8 hours, and my family and friends stayed with me the entire time, my pastor praying with us (in fact, my pastor continued to come with us on Mondays, his day off, for a series of months when we would see the MO until I finally told him that it was too much for him to keep coming -- he and his family continue to faithfully pray for me every day, along with most of my church and friends). After that, I went every Monday to get the same meds for 56 straight weeks. Finally, after periodic CT scans, they concluded that things were somewhat stable, though there were still tumors in my liver. The Taxol had gotten a lot of them, though. I felt worlds better, though I was tired. In February 2012, I went on Herceptin only every 3 weeks and had to take Tamoxifen on a daily basis. Unfortunately, after a couple of CT scans, a couple of clots showed up in my lungs and I had to inject Enoxaparin, 100 ml, twice a day until they could confirm that I was truly post menopausal, at which time my MO switched me to Aromasin. That was in December of 2012.
After about a year of Aromasin, in February of 2014, the Aromasin wasn't working as well so we switched to Faslodex (shots) but by May 2014, this had failed as well. By May of 2014, skin metastasis was starting to appear, and it was determined I needed to go back on chemotherapy, that the targeted therapy Herceptin wasn't sufficient on its own. My first MO at FCCC had explained to me that, periodically, the meds would need to be tweaked, and chemo reintroduced to stabilize my cancer.
Our family had planned a trip to the UK (my husband and all three grown children ages 25, 23 & 19) and we told FCCC that we had to get this out of the way first. So, we went on our trip for a couple of weeks, and it was a good reprieve.
On our return I went back on (this time) Taxotere, along with Herceptin and now Perjeta (Pertuzamab) had been added to the combo. After 1 treatment, I changed MO's to find one more interactive. New Doc is wonderful, and insists that I exercise daily and drink more water than I had been doing. In addition, my CT scan in October 2014 showed that not only had the breast tumor and the obvious skin metastasis shrunk, but more tumors in my liver had shrunk as well. I had 8 treatments of Taxotere over a period of 6 months, July 2014 to late January 2015. Side effects were troublesome (peripheral neuropathy, foliculitis, 1 nail infection, intestinal tract drama), but my MO and my husband and I were satisfied with the results.
Unfortunately, my most recent CT Scan shows new small growth of the lump in my breast. The good news is that the liver's tumors appear stable. The difficult aspects of this are that my MO doesn't want to start anything yet, because of such recent chemo. Another CT scan next month will tell us what to do next. Perhaps we can wait to resume Taxotere until after the holidays.
I'm still here, and for that I'm thankful. Because living with metastatic cancer is my new normal, and because of God's grace to get through it, I manage fine. Wish I had more energy, but there are worse things than feeling tired. None of us know the day we will leave this world, so one learns to be grateful for each day and that's not a bad thing to learn. (photos are from 2014 - "just me", followed by my husband and kids)
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Miriam thank you for sharing your story with us. Each of us has our own unique story and challenges, but we all learn from each other. There are many options and new treatments available. Praying we will be discussing this in another 5 years. You have a beautiful family.
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Morning ladies, I have been a bit silent of late and I guess checking out the other threads..
So many stories just like mine and here I thought I was the only one misdiagnosed for over two years. It's not a friggin cyst people it was cancer after all.
Hi Raines...I still am enjoying walking around with my tumor. No operation for me either which initially made me very afraid of potential spreading. I'm on Tamoxifin SE minimal loosing weight is about the biggest. But at last oncologist check the tumor is shrinking...so I must be doing something right.
No meat...no refined sugar lots of excerise , morning and night Chaga tea (fifty times e antioxidants as blueberries). I went to a nature path because I was not happy with my care so I'm on an arsenal of immune system building stuff. Anyway I'm rambling.
Kathy your family is beautiful as a mom I know what your feeling. I was one of those woman who couldn't wait to have grandchildren. Who is excited about her children's future and I want to be there...
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I was diagnosed with BC in the left breast in 2010, HR+/PR+, at the very young age of 55. I was totally shocked. Even though my mother had died of breast cancer in her 40s, I felt I had done everything right and it would never happen to me. I was vegetarian for a long time, then switched to vegan, took healthy supplements, kept active, ran my own business, often used alternative therapies and treatments, had a negative BRAC result, and had mammograms. All the things we believe are supposed to keep us healthy. I had noticed a lump in my breast for years but each mammogram was negative and my doctors assured me it was a fibroid cyst and nothing to worry about. In 2010, I realized I hadn't done a breast self-exam in quite some time so stood before the mirror to check myself out. As soon as I raised my left arm, I knew I had cancer. The skin was puckered right where I had always felt the lump. I just couldn't believe it and felt life was playing a cruel joke on me. I had just recently moved to a new state to open a small business in my favorite vacation spot, didn't really know anyone, had no friends or family within a thousand miles, and had never felt so alone in my life. My family and friends were shocked and sympathetic when I called with the news but no one was able to come and I'm not sure what I would have done if they had anyway. In early 2011, I had a lumpectomy and 6 1/2 weeks of radiation. One of the oncologists strongly recommended chemo as well but I just couldn't force myself to do it. I was on my own with a brand new business and just didn't feel I had the financial resources or the time to have to deal with probable side effects. My surgeon thought my choices were fine and she felt she got it all. The oncologist started me on Femara and I lasted less than 2 weeks. Had a horrible reaction, both mentally and physically. Apparently I'm allergic to it but it also sent me into such an emotional turmoil I could barely function. Imagine trying to run a shop when all you can do is cry non-stop! Not good for business. After that experience, I refused any other medication. I had acupuncture which immediately helped balance out my emotions and I felt better in no time at all. All my energy came back and I felt healthier than I had in a long time.
Fast forward to 2014. During the summer, I began to feel tired and my back and ribs started hurting. I thought maybe I had pulled a muscle while gardening. I took OTC pain meds but it still hurt so went to see my local doctor. Had x-rays but nothing showed up so we agreed it must be a pulled muscle and I should continue taking it easy and taking Tylenol and come back in a month if it wasn't better. I went back, and then back again. Was put on a muscle relaxer but no affect on the pain and I was getting more and more tired. Finally went to my doctor again in tears and was told to go to ER because she didn't know what to do anymore. Spent 12 hours in ER, being given ultra-sounds, EKGs, blood tests, etc., but nothing really showed up. Eventually a doctor came in and said it could possibly be my gallbladder and I could stay and have it removed or I could just go home and see if the pain would eventually go away. I knew something was wrong with me so insisted on staying. They said they'd take out my gallbladder in the morning and I'd go home that night. Seven days later I went home... After the surgery, I wasn't getting better so they did an MRI and CT scan. The next day, the oncology department was in my hospital room to inform me I had what looked like cancer lesions on my spine. I was given a few days to recuperate from the gallbladder surgery then had a biopsy on my spine confirming the cancer. Further tests showed bone mets in my pelvis, femurs, and ribs as well as my spine. When I was told I had bone metastases, I didn't even realize what that meant and my doctor never explained it to me, other than to say I had cancer. My first thoughts were that I had cancer again, unfortunately, but would get treatment like before, although probably having to do chemo this time, and move on with life. I felt shocked and devastated with the news but not nearly as devastated as a few days later when I began to do my own research online and found out for myself that this is not curable and could kill me! I had already told my family but then had to go back and tell them it was much more serious than I thought. I started on Arimidex in early November of 2014. The pain in my bones over the next few weeks was horrible. In Dec., I started getting a monthly injection of Xgeva for my bones and within a short time all the pain went away. I now have severe joint pain in my right thumb and slight lower back pain daily (especially on days when I really overdo it) and I lack energy to do everything I want to do, but all in all I feel pretty good and can lead a fairly normal life again. Last CT scan showed some slight improvement in my bones so apparently the meds are working for now. I have hot flashes, night sweats, and don't sleep well but I can live with those symptoms. I can tell the Arimidex affects me emotionally too but no where near as badly as the Femara. My last blood test showed a big jump in the triglyceride level but my doctor doesn't seem to think it's anything to worry about right now.
I moved in with my single son and grandson 3 years ago to help take care of him/them full time. My first thoughts were extreme sadness that I might not make it till he is grown and might not be able to care for him after moving here to do so. I adore that little one and the thought of possibly not being here for him is heartbreaking. I love reading all your stories; they give me hope that I can make it past the scary statistics listed online. Thank you to everyone who shares on this site and others and let's hope this really does turn out to be a chronic disease rather than the alternative for all of us.
Update:
I'm coming up on the 4 year anniversary of my diagnosis! I'm still here! When I wrote my post above, I truly didn't believe I would be here 4 years later but I am and I'm doing well. My life definitely has more laughter than tears and more happiness than I've had in years. It's been an adventure and I have been poked, prodded, scanned, and taken more drugs than I ever thought possible. Some days I just need to stay in bed but those are very few and far between. Usually I'm out and about and living a great life. I did well for a few years on the Arimidex then the cancer began to grow and spread about a year ago. I could tell things weren't right because all I wanted to do was sleep---my telltale sign. The bone mets is in almost every bone in my body now but guess what! I still live a normal life! I began taking Ibrance with Faslodex in January of this year and it's taken 6 full cycles of the drug for me to start really feeling good again. I had various side effects each month from the drugs but we've finally found a way to prevent them and get me through the cycle feeling pretty well---they hydrate me each month right at the beginning of the cycle and that fixed the problems! A very simple solution but it worked for me! My last scan showed a decrease in the mets so...yay! I'm expected to stay on this regime for 2 years and then it's time for something else again. At least at this point in time, I am a firm believer that I will still be here to move on to something new! I've come a long way, baby! I hope this brings hope to any of you newly struggling with this diagnosis. Best wishes to all. Janet
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My Jenny is 39 and was diagnosed originally with Stage II. I remeber the conversation we had when she found out. She called me (I was at work) and told me that she had breast cancer. (The radiologist told her that she was 99% sure that she had BC.) Of course, being a stupid male and all, my response was the classic "ARE YOU SURE?". Sure enough, the biospy confirmed that the radiologist was right. She had a TRAMFLAP procedure, and it didn't really work out. She filled up with lymphedema and had had to have her right reconstructed breast removed. (We later came up with a joke to explain this. We tell everyone that she had a trilateral masectomy.) She began chemo and then we learned that her BC is triple negative, which is the worst you can possibly have. Chemo being chemo, it was absolute torture. We also learned that her BC was actually Stage IIIc. Although she only had one positive lymph node, it was the location of the node that was the problem. It was under her rib cage. Despite the horror which caused several trips to the ER and a few hospital stays, she made it to radiation. We began to discuss getting the reconstruction finished and moving on with our lives.
About a week into radiation therapy, Jenny fell in the shower. She broke 5 ribs and as found out that she has brain mets.
But that's not how I want you to think of her, and that's not certainly how I think of my beautiful Jenny. She's way more than cancer. She's the love of my life and my high school sweethart.
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Alan:
How lucky Jenny is to have you (and you are to have her). I was diagnosed stage IV out of the gate in August. I'm also 39. I've known my husband since we were 14 and his support and compassion has made all the difference in making this tolerable. The last line of your post brought tears to my eyes. It's easy to let this define us and having those around us see us for who we are is so beneficial. I wish you both the best.
Rachel
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Thank you. Gentle hugs, my friend.
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I'm 31 and was just diagnosed with stage IV breast cancer with mets to the liver yesterday. Tough to comprehend...
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My heart truly goes out to all of you and especially those of you newly diagnosed. Today is the one year anniversary of my bone mets diagnosis and it's been a wild roller coaster ride of emotions. I know how scary and crazy this feels. I can't say it's easier after a year but maybe I'm more settled into it now. I still have my very bad days but I also have some really good days when I do laugh and have outrageous fun---and maybe don't even think about the cancer for a few hours. Best wishes and prayers to all of you/us.
Janet
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my story. i discovered rock hard lumps in my left breast at age 40 (jan. 2013). I was in the best shape of my life. went to get it checkout by midwife and she wrote unmovable hard masses and i google it and is sounded malignant. for the last couple of weeks i felt my bra becoming tight even though i used to exercise for hours at the gym. anyway they found it be an aggressive cancer (er/pr negative and her2 positive). it was stage 3 and i got treated with chemo, left mastectomy, and radiation. My MO said i was cured after a year of therapy. I ate good and slowly was getting back to moving on with my life. After radiation i had a really bad cough that would go away for 2.5 months and i got a lump on my left clavicle. i was scared and went to the MO who ordered a pet scan. the pet scan came back negative and i had the best year of my life . I was so grateful for being alive.This was Oct. 2013. Fast forward to Oct. 2014 when i haD routine followup visits with the Rad ONc aND BS same day. Rad Onc said i was doing great and an hour later i was at the surgeon. i expected to the visit to over quickly. However the BS found a nodule and did fine needle biopsy (she expected it to be fluid) and it turned out to be solid and then sent me for core needle biopsy. After days of waiting the fna was positive for cancer but the larger core biopsy was negative. MO sent me for pet scan and brain mir. pet scan showed that i had stage 1V which spread to lung, liver, bone, media stanis, etc and 3 spots on brain. I shocked out of my mind. I thought the worst was behind. Anyways i went on weekly taxol, herceptin, perjeta till end of Aril 2015. MO thought i was in remission so she put me on maintanence. after 3 months MO did scan which showed that cancer was back. I was put on kadzyla. after 2 months some spots resolved but new lungs ones appeared. The brain mir showed i have 22 small spots.I have 4 children . One son is autistic and i have an 8 year old. thank god I'm still asympotmatic but the stress has been taking its toll. I will need WBRT. Please guide me and tell about others who are going thru similar situation.
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Hi All,
We sincerely appreciate you sharing your stories here. In order for us to be able to put them up on the site here:
we really need for you to also share some aspects of these questions:
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Thanks so much!
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Hi All,
I am a 49 year old mother of 3 (23,21 and 16) from Ireland. I was first diagnosed with BC (HER2+) on the 17th of September 2010, I underwent surgery to remove a 1.8cm lump from LB along with auxiliary clearance 32 nodes removed of which 8 cancerous. Had 6 cycles of carboplatin, taxotere along with Herceptin (which I was on for a year) I also had 8 weeks of radiation Monday to Friday. Was put on Tamoxifen in April 2011 after finishing chemo. When last of the treatments were finished I genuinely never looked back and got on with living my life. I was busy looking after my family, working and enjoying my golf. At the start of 2015 I wasn't feeling too well but cancer was the last thing on my mind. My first symptom was on the 4th or 5th of January 2015 I felt a slight flutter (like an electrical current) over my LB which I thought strange but it only happened another three or four times so I thought no more about it. Come February I was feeling tired and I had a slight cough but my neck was acting up in that it felt as if I had a permanent crick which restricted my head movement. I attended my GP on Monday the 16th of February and was referred for a chest X ray. Two days later I was put on a course of penicillin and then had to wait a week before my next X ray. I was X rayed on Monday the 9th of March and the following day my GP contacted me to say that she had arranged for me to see my surgeon that afternoon. My X ray was considered unusual in that my phrenic nerve on my left side had collapsed and my diaphragm was elevated. My surgeon ordered a CT scan which I had the following morning. I was called back to his rooms later that day to be told that I had about 20 tumours each measuring approximately 9mm in both my lungs and that I had a small dot on my iliac bone. I was shocked and needless to say shed a lot of tears as did my sister who was with me when the news was delivered. A few days later a bone scan confirmed that I also had two dots on my L3 and L4 Spine.
Thank God that I am an eternally optimistic person as despite the initial shock to the system I thought, come on I can do this and I will do this. I remembered an inspirational radio interview given by a Tipperary man called Liam Ryan who was given a 5% survival chance after an aggressive cancer was diagnosed behind his face. He too was distraught with his prognosis until his friend said you have got to be one of those five who will survive this and he was!! On the 14th of April this year I started treatment. Perjeta, Herceptin and Taxotere, My first Scan occurred after 3 cycles of chemo, perjeta and herceptin and showed a reduction in my tumours from 9mm to 6mm and my most recent scan on the 29th of September showed that tumours are stable, i.e. treatment is working. On the 3rd of November I am scheduled to have my ovaries out and will automatically go into menopause. I will be put on a hormonal tablet (can't remember the name this minute) to take each day. So, my present situation is that 9 taxotere chemos have been completed so today I received just perjeta and herceptin and will continue to do so every three weeks until my next scan where hopefully things will remain stable and there will be no need for me to be put back on chemo. Stable is Good!!!!
My motto is kindly borrowed from an elderly friend who sent me the following message:" First we do what is necessary, then we do what is possible, remembering tomorrow is promised to no one". Live Day by Day that is the secret because the moment we attempt to visit the future is when our hearts break. One step at a time!! Me & family at my sister's wedding in Italy on Saturday the 26th of Sept 2015.
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Suersis, I genuinely feel like there is nothing I cannot handle and I'm not going to worry about anything until I have to!!
For now my Oncologist is happy with my progress and that makes me happy!! No point in stressing out as it is what it is and we are where we are!!
Hugs back to you xx
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In July of 2012, at the age of 38, I was diagnosed with breast cancer which was originally thought to be stage I based on the breast alone. There is a family history; my grandmother was 65 when diagnosed, and my mom was 55. So, at the advice of two opinions, I had a bilateral mastectomy, and because of the report, it was believed that chemo was in order. My cancer was ER+/PR+/HR2- . Thankfully, I had an oncologist who had the philosophy of doing a PTscan for everyone before beginning chemo. That scan showed that I was actually already at stage IV as there were 7-10 lesions in my liver with the largest being 5.6 cm. I say thankfully, because I am glad that I know so that we could address it and while I don't like living with the cloud over my head, I do like that I know to live life to the fullest now and appreciate everything in the moment.
I was given the option by my oncologist of scaling back treatment or continuing with the more aggressive, and I chose to go ahead and do the more aggressive treatment of chemo; so, I began in October of 2012 6 rounds of Adriamycin and Cytoxan about 3 weeks apart. (There were some problems with neutropenia and infections so it didn't always work out exactly as planned). Since I was heavily ER+, I decided to go ahead with my doctor's recommendation and do a full hysterectomy in February 2013 and then begin Arimidex after that. By the end of April 2013, I was found to be NED, and have been to this point, but we all know that is a month by month or day by day status; so, I hope that will continue.
I continue to work as an online professor, and this fall I have become full-time at a private college which has led to teaching more on campus. I also have been trying to quickly work through my "living list" of trips as I want to live life to the fullest now while my side effects are on the milder side as I never know when that may change.
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nbnotes, you are an inspiration to me! As to many others I'm sure. I am newly dx and have extensive bone mets. Stage IV right out of the gate. I am only 46 and have 3 kids, 2 still at home. Your story and others like yours give me the true hope I need to get through a day smiling. Thank you so much for sharing your story
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Thank you nbnotes so much for sharing your story!
If you have a photo to go with it, that would be amazing :-)
The Mods
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Mods -- here is a picture from my "living" list trip to Ireland this past August.
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Hi Jenny,
My sons were about your sons ages when I received the news of breast cancer 24years ago. I have always followed my doctors orders, and have gone on with my life on a mild anti-depressant (thank G-d). It is very hard and side effects don't help. The most important thing is to try to be positive, and have faith. In the early days, I was a cub scout den leader, wig and all. My son was getting his tonsils out, and I was getting my chemo therapy on the next block. You love your family and of course those darling sons, so we keep on going. Rest when you can, use visualization to help positive energy help you to heal. Cancer can come and go for years, but you must keep on trying to fight it, and you can.
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Survivor-
Welcome to BCO, and thank you so much for sharing your story.
The Mods
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My father and sister were both diagnosed with cancer in August and October 2013 two weeks apart. My father was dx with IV lung cancer met to rib. He passed in January of this year. My younger sister was dx with IIIc BC. I am here on this site because I am trying to gain hope. My sister is still alive. She was also diagnosed with pituitary cancer. The Pituitary and both breasts were removed. She nearly died during chemo several times. She refuses to ever take more. She has pain in her chest. The bone scan shows a spot on her rib but an x-ray on Friday (Halloween Eve) was found to be inconclusive. WTHeck? We are terrified. What is inconclusive? What? Every minute of every day is horrific waiting. I know nothing can be done but please tell us. We have little faith in doctors.
All the memories of my fathers treatment resurface.
He had WBR.
He had 10 weeks of WBR. During the last three weeks he became weaker and sicker. We think it killed him because he was gone one month after his last treatment. It is my belief that he was over radiated. They should have been able to see what was going on each time and they should have told us he was not doing better but they said nothing. He was weak and so sick and tired but that happened after his initial chemo and radiation to chest.
My father was 78 though. God had a plan for him in Heaven. He even told us that he was going to Heaven a week before he passed. We had a baby monitor set up to hear him. He said, calling out to my mother on the monitor, " Honey, I have one week left." He lived 6 days.
My advice to anyone taking WBR is to ask every single time if the tumor is shrinking or at least toward the end of WBR. Ask!
Don't let it go.
My feeling is that the younger you are, the better you will do. I have heard of the majority doing very well with WBR. Just stay in touch with the radiation onc. Ask how it is going. You have a right to know.
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Nancy, thank you for sharing your story with us. We're so sorry for your loss, and are keeping your sister in our thoughts.
The Mods
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