Would you share your Stage IV story with us?
Comments
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Hi! I tend to be a lurker on here but I love all the information I find. I thrive on knowledge and I know this is a great place to get good information.
In 2008, I was drying off after a shower and felt a lump on the side of my right breast. I had had a mammogram three months earlier with no problem followed by a checkup with the doctor who did a manual exam and still no problem. I was surprised by finding this lump. Saw my doctor who referred me for an ultrasound. With the ultrasound results they did the biopsy right then and there. On Christmas Eve morning, I received the news no one wants to hear - cancer. I underwent a right sided mastectomy and a sentinel node biopsy. I was diagnosed with Stage 2 Grade 2 DCIS. There was no lymph node involvement. But the pathology report had a single statement that has always stuck with me, and has come back to bite me in the rear!! "Extensive lymphovascular permeation." I underwent a series of six infusions of chemotherapy with Cytoxin and Taxotere. I ultimately ended up with 11 different surgeries due to complications from the breast surgeries - infections, non-healing, etc. Ultimately, I made it through and was declared cancer-free. I saw my oncologist every 6 months for the next 9 years and when I moved to where I live now, the oncologist here said he didn't need to see me unless there was a problem. That was in 2018.
Fast forward to 2020. I began feeling a hard node in my neck right above my clavicle. I tried not to worry about it but kept track of it. Ultimately, I was in the doctor's office for another problem and brought up the node that had been there for about a month now. Although I didn't relate it at the time, I was also having some pain under my right arm. I was seeing a PA and not my regular physician, and the PA, who I had had issues with previously, was trying to blow me off and say he didn't think it was anything. Thankfully, I held my ground and told him I had given in to him on the other issue I was there for but that I wasn't going to let this go. After telling me about a couple of other patients who had very large lumps who had cancer (basically saying mine was so small it couldn't be cancer) he ordered an ultrasound of my neck. When the ultrasound report came back, it recommended further imaging so I then went for a CT of my neck. The CT report came back recommending further testing so I was sent for a biopsy. The biopsy was incredibly painful, but they were able to get two samples. This time the report came back as positive for breast cancer. I saw the oncologist who said treatment would probably be radiation which should then render me cancer free. However, I needed a PET Scan first. The PET Scan report came back with 9 affected lymph nodes some in my neck, some in my axcilla and some in the mediastinum. Radiation was now off the table.
In April of this year I began taking Ibrance with Letrazole, and I am on my fourth round. I do feel some shrinkage of the node in my neck, which is good. However, I am having nausea and am not eating much. I'm tired all the time and just a small amount of activity will wear me out.
The thing I'm struggling most with at present is "where do I go from here". Prior to diagnosis, I had a number of plans going. I was going to have weightloss surgery, I was going to have a bum shoulder fixed, we had a cruise scheduled and plans for other traveling and I was finishing up a degree program with plans to start a business. Now, due to this diagnosis and Corona virus, I'm sitting in limbo. The weight loss surgery and the shoulder surgery are off the table, probably due to low blood counts from the Ibrance. The business I was going to start probably won't be viable since I have no clue how long I'll be around. Travel is at a standstill. So, I'm trying to figure out where I go from here!
I am very grateful I'm alive, and God is in charge. I'm just trying to figure out my new life.
Chris
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Chris, are you still on the 125 mg Ibrance? You could ask (tell) your MO that you'd like to try a lower dose to control those nasty side effects. I've been on 75 mg for 4+ years. I had bad diarrhea on 125 mg and went directly to 75 mg. You could try 100 mg and see how you do. Not eating can't be good.
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Jaycee49,
Thanks for your reply. I am on 125 mg. I am trying to eat as much as I can. I am overweight anyway, so I can use losing some weight. However, I'm very cognizant of trying to get some protein in. So far, I can tolerate the side effects but if it gets worse, I will definitely ask for a dose reduction. Thank you so much for your suggestion.
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Hi Chris -
Sorry you find yourself here, but it is what it is, right? I, too have tumors in my neck, now in my chest, around my liver, and on my liver …. in less than a year. I am handling treatment well, but to date, none have stuck longer than a few months before they quit working. I started with Taxol and now Ibrance. Tumor markers started going up so we upped my routine PET by a month. PET results show the Ibrance has quit working too. It's almost like starting over, again, for the second time. I begin Eribulin tomorrow; this will be treatment number 3 in nine months.
You didn't mention the type of cancer you have; I'm not sure it makes a difference, but it might. I have Metastatic ILC. ILC has always been a sneaky sucker and it seems even more so now that I am metastatic. We are hoping to find a treatment I can stay on for a bit. Meanwhile, we carry on and do the best we can with what we have. In general, I feel fine. It's just these pesky turmors lurking inside of me that tell me I'm not so fine after all.
Hang in there!!
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vbishop,
I'm so sorry to hear about your troubles with treatment. That sounds so discouraging that nothing works for very long. That seems to be what we can hang our hope on. As for diagnosis, I have DCIS so definitely different than you. So far, I only have cancer in the lymph nodes, no organ or bone involvement - yet.
I think the best we can do is carry on the best we can. My Stage IV diagnosis is very new (March of this year) so I still think about dying every single day. I'm the type of person who wants information and a need to know what's going to happen but it's almost impossible to get that with Mets. I think I would almost prefer if they could tell me I have ___ years to live so I could plan for it. It's difficult to plan when you don't know!!
Hang in there. We'll all get through this together!
Chris
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Chris -
I am a project manager during the day, so I have a tendency to treat my cancer as a project. Drives my medical team crazy sometimes. I've learned over the years that you need to be aggressive about your health care, push for more testing, question, etc. When my tumor markers started steadily climbing, I finally asked when were they going to take this stuff seriously. That one question resulting in a new blood test for tumor markers, an emergency PET, and now new treatment, all within a week.
I asked about cancer type because my IDC friend is on Ibrance and doing well. Although I handled the treatment well, my cancer is sneaky and tenacious, so we keep trying. Overall, my attitude is upbeat. I work to stay happy and positive. You can't kick cancer to the curb when you are in Debbie Downer mode all the time. I am not saying I don't go there from time to time. I do … but I don't allow myself to stay there long.
I created a blog when I was first diagnosed with breast cancer and now again with metastatic breast cancer. It is therapeutic for me, plus provides me a way to keep family and friends up to date without having to repeat myself over and over. My one steadfast rule is that I always talk to my kids about test results and treatment before I post to my blog. ALWAYS!
I am an open book, so it's not for everyone, but it helps me …. and I'm told helps others in the same boat. That's a win/win in my book!
Check it out - https://vjbishop.blogspot.com
Stay strong! You got this! Don't let cancer rule your life, rule your cancer instead!!
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Well, this is a positive story (sort of, so far) which involves a lot of luck, and some residual anger.
I was 77, in good health I thought--no pills, no illnesses--not even an Aspirin in the house. I had just started a new relationship with a recently widowed friend of 40 years, was still an active livestock farmer, and figured life was grand. No one that I knew of in my family had ever had breast cancer, although they did die of lung/throat cancer, but they were smokers and drinkers and I had never smoked and only drank the occasional glass of wine...
I suddenly had trouble breathing, Emerg, Drs. said we'll keep you overnight and do a few more tests in the morning. Once I was settled, a doctor dropped in, sat down, said, 'I have some not very good news for you, we found nodules in four areas (breast, lymph, lungs, liver), we'll do some more tests in the morning'. I said, 'you mean I have cancer?'. She said, yes, told me to sleep well, and left closing the door behind her. I probably don't need to tell you how I felt. The next morning, another doctor came in, confirmed I had cancer, added that I also had the HER-2 gene (what's that?) and I asked, 'so how long do I have? Two weeks, two months, two years?' and his reply was, 'oh, more than two weeks'. Although I had no idea what 'Stage IV' meant, it sounded pretty hopeless. At every turn, all my questions were answered the same: you have to talk to the cancer doctor. It took nine weeks to see an oncologist, with me figuring I would be dead first. No one explained the delay wasn't just the system, but behind the scenes dna research and investigation into the best solutions. Not knowing what was going on, and not being able to get an informative answer, that nine weeks was hell!
To add to the stress, when I told my new 'partner', his response was dead silence, and then he said, 'will you change your Will and leave me the farm so I don't have to move?'. Shocked, I shut down, as obviously the relationship wasn't going anywhere I wanted to be. So much for support.
I found a naturopath who specialized in oncology, not treatment per se, but he supported things that boosted the immune system, and complimented the chemo while reducing its side effects. I think this helped enormously.
I started chemo within two weeks of meeting the oncologist (Vinorelbine plus Herceptin). I have been incredibly lucky, I think. After four months, The CT and PET scans showed the nodules had stopped growing everywhere, the Vinorelbine treatment is finished, and I just have Herceptin every three weeks to manage the HER-2 gene. Overall, zero symptoms of cancer, zero pain, and zero side effects: I even kept most of my hair. The only downside was the PET scan showed activity at the hip, but it didn't show up on the CT scan, so the oncologist is keeping his eye on it, and will do radiation once there is hard evidence.
It's now a year since I was first diagnosed, and life is perfectly normal. Sort of. I tire more easily, and get short of breath with almost any exertion, but I look and otherwise feel great. I'm on my own again and have cut right back on the livestock. I have a couple of terrific friends who've stood by and been incredibly supportive, which has helped.
I guess things mutate along the way, because the oncologist is still talking three years, but I figure as long as the Herceptin keeps working, I'll live forever. As you can tell, I still resent the initial lack of info, and the less said about the absent partner, the better.
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Wow, Gristead, that's quite a saga--first dealing with those dismissive doctors and then the ultimate jerk "partner." Bullet dodged!
I'm glad you're feeling good now. Come join us on the Mets Forum, where lots of women share stories of living well for many years!
Tina
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Welcome, Grinstead, and thank you so much for sharing your story! We're so happy to hear you're doing well. We hope this community can be a source of support and encouragement for you!
The Mods
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Oh, my, what wonderful support. I truly feel blessed.
And, I just got a call from the oncologist, my six month post-Vinorelbine CT scan was Friday, and YIPPEE!!!!!!!!!!!!!!!!, STABLE. Cancer on hold. See, I really am going to live forever. Well, not die soon. Thanks for being here. Carol.
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Dear Grinstead,
Thanks for sharing the good news. We are all here for you.
The Mods
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I was diagnosed with stage lV extensive metastatic breast cancer in most of my bones from the pelvis up to the shoulder last September, and honestly did not think I would still be here almost a year later. My original diagnosis was multi-focal cancer, having three cancerous tumors in my one breast back in 2004. I had bilateral mastectomy and chemo and did a years worth of tamoxifen but stopped due to side effects. My mother had breast cancer at age 50 and passed at 57. I got it also at 50, but I was given and am grateful for 15 years till it returned at age 67.
My mantra to my MO was quality of life, and I wound up getting a second opinion and new MO who would work with me. He would keep telling me it's not all gloom and doom, and ways to treat me trying to keep me alive with qol. He started me on ibrance 125 mg but reduced to 75 mg after wbc issues. I am on my 6th cycle, and the ibrance and tamoxifen have made a big difference, reduction of much of the cancer and no new growth. I also am getting zometa infusions quarterly. When diagnosed in Sept. I started seeing a palliative care Dr., who is wonderful and helps with pain meds and discussions on my decisions. I have also been able to get home palliative nursing care weekly, which has been terrific as basically with Covid I don't leave my apt. That program ends this week as I have stabilized but they are offering another program where a NP will see me monthly, which I am grateful for.
I am still dealing with all the side effects of cancer, pain drugs, and ibrance, the fatigue and nausea, being the hardest.
When originally diagnosed In 2004 I came to the boards, which educated, informed and gave me others to commiserate with, and though it has taken me a while to post again, I have been visiting here since my new diagnosis.
The one thing that did happen, was my family encouraged me to create a book of my photo-poetry that I had contemplated doing. I finished a few months ago, sharing with family and friends and actually putting on Amazon for sale. I would like to share one of my poems here, and at some point if it's ok with the moderators I will post a link for my digital ebook when it can be downloaded for free. Amazon gives me a few days to do that as long as that's ok.
"Heartbeat"
What is death like?
Staring me In the face
Up to now
Its possibility
Was not yet
SetIn stone
But as treatment
Moves on
More drugs
More thoughts
Slipping In -
That jostle
My senses,
My anxieties,
My fears.
I try to
Let it go
Find my peace
Peace within my soul
When to know
In my heart
When to let go.
I'll Live
While I can
For This Moment
Is All That I Have
But it is
All That I Need
A Breath
A Heartbeat
A Desire to Exist
When that desire gives way
As I said
I Will Know
It's Time to Let Go
Epilogue:
Letting Go
Becoming Free
My Soul
Reaches Out
To Thee
Excerpt From
Lost In A Book
Not all my poems are so on the dark side, but as most know, there are days....
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Hi Karg, and thank you for sharing your story and your poem here with all of us. Welcome! We know that you'll get tons of support and understanding here, so please stay connected and keep us posted on how you're doing. We're here for you!
The Mods
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Thank you for your warm welcome, it's comforting to have this space to share again. I pulled out an old newspaper article after reconnecting with breast cancer.org, that was written in 2004. They had been looking for volunteers to interview about how the web site helped or impacted their life. I believe the site was only about 5 years old at that point. Dr. Weiss presented information and I shared some of my story and how the site helped me. I kept the article for all those years, little did I know how time would bring me back here.
Stay safe, stay sane all, and find one thing to be grateful for today, it makes the challenges a bit easier.
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I am not sure if I can post this if it is against website rules, if so I will remove it. The poem above on my post is in my book of photo poetry which I created after my last diagnosis of stage 4 to help me deal with it, while working on a creative project.
I mentioned I would let you guys know when the e-digital version would be free. It will be available to download Friday, August 7,2020 at 12:00 EPT till Sunday, August 9,2020 at 11:59 pm EPT on Amazon. The book is called - Lost in a Book flights of fantasy. I wanted to share, and hope that a poem or photo radiates with you. (The site also has my hard cover listed for sale please, make sure you choose the downloadable digital version that costs nothing.)
I am given this opportunity to put the book for free every few months, if this post is outdated I can try to alert you again, or if you email me I am able to lend you a copy for 14 days.
Karen
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My cancer story started just over a year ago. The only cancer in my family history is my maternal grandmother's ovarian cancer.
At my annual well woman appointment, everything looked good, clear mammo, no problems. Results from the routine bloodwork showed slightly elevated liver enzymes. Reran the bloodwork roughly every two months with varying results - nothing shocking. After eight months, my primary physician ordered an abdominal ultrasound, then MRI - both showed numerous 'concerning' masses in my liver (that were not there in 2015). Referral to gastroenterologist, who ordered liver biopsy. By that time I was expecting liver cancer, not MBC dx. Referral to ONC, then PET/CT, then mammo and breast ultrasound. All identified a spot very low in one breast. I think maybe the mammo and u/s only found it because they were *really looking for it* after MRI and PET results.
It took three months from the first u/s order to the first ONC appt, because of delays due to COVID-19 restrictions. That's a long and frustrating waiting game.
I've been on Arimidex and Verzenio for almost two months, so I'm hoping for good news from my next PET scan.
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I have been diagnosed with stage iv breast cancer sept 23rd.
I have 4 small masses in my right breast, node in collar bone and several other nodes
found throughout body including one in a lung. It has spread to bone in several places.
No pain.
I feel like my life is over.
the dr said it is fast growing and nothing i could have done to discover it sooner.
i feel guilty for not getting routine mammos due to the pain they cause.
i feel like the diagnosis is my punishment for my lack of care to my self.
I am so scared. I feel lost. I feel defeated.
I get port in today and start chemo next week.
I read a post about "Carmelle's Success Stories thread has been a life saver!" from a
post I read and decided to post something because i am falling apart. i suffer with OCD
so as you can imagine, i am all over the place.
I am so scared.
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Stage 3a in 2019.
Stage 4 in 2020.
I have a 2 year old.0 -
Hi there! I was diagnosed on 12/28/2015, age 38, with bilateral IDC -- stage IIIA on the left, DCIS on the right. I had found a lump in my left side, and lo and behold, it was cancer. At that time, my two kids were 5 and 7, which was difficult. I had a double mastectomy with reconstruction (left implant later removed duet to infection. Then I started the standard AC + Taxol chemotherapy and radiation. The treatment was pretty rough, but it was doable. We through the book at that cancer. Seemed like it worked! But... they don't scan you after your treatment (whaaat!?) and I had had extranodal extension, which put me at higher risk of recurrence, but I figured I had a better chance than many to beat the odds.
I went on with my life. Took pretty good care of myself (although it could have been better). I launched into a new career and just about everything else once I put cancer in the rear view -- it just felt so good not to be a patient anymore. I started my own business which I built lovingly and deliberately for over three years. Our lives were busy, our kids were getting older and more amazing by the day. Life was full and wonderful and I lived it like I would live forever.
Then, almost five years later -- I was planning my 5 year "anniversary" party (COVID style, of course!). I had a prophylactic oophorectomy since I have a BRCA variant and because I didn't want to have to get Zolodex shots anymore! During the surgery, my surgeon discovered that my liver was absolutely bursting with cancer, presumed to be a recurrence of my previous breast cancer. She took multiple samples during the surgery. Pathology came back that yes, it was a metastatic recurrence of my breast cancer with extensive liver mets. The PET scan was otherwise clear, thank goodness, as was a brain MRI. But the liver looked just like a glowing ball of cancer.
It was all so devastating. I dismantled my beloved business in a matter of days and sold it -- had to clear the decks so I could focus on getting healthy (ok, healthier). It's amazing how clear your priorities become in the face of this kind of diagnosis. My kids are now 10 and 12 and I'm still happily married with a very supportive husband. So grateful for that, and yet so devastated that I may not get to be there for my kids to grow up and to grow old with my husband. (No no no! This was not the plan.)
Over the previous several months, I had been exhausted and I had lost about 20 pounds, I had very little appetite and I'd just begun to feel awful. BUT I have always had serious mental health issues which had taken a bad turn in recent months, and we all chalked it up to that (me, my primary care doc, AND my oncologist). No bloodwork ordered, no scans, no nothing. Health problems can so easily be chalked up to your mental health when you struggle with it -- it's hard to look beyond that for other explanations.
I started chemo in October 2020 and I've been through three rounds of 2/3 week carboplatin & gemzar treatments. They've had to lower my dose because my liver is just not doing well and it was causing my blood counts to go too far down every time. They kept giving me treatment even when my levels were definitely too low, because I think we're racing against time to keep the cancer confined to the liver -- it's just about filled up! I've been at an 80% dose for two treatments now, and i feel human again. But in the last week, I've developed ascites, as well, which is fluid accumulating in your abdomen because your liver isn't functioning well. Which is apparently bad. I had an ultrasound last night so we'll see what they say. I have read that the prognosis for liver mets is fairly poor, and I imagine this is why -- the liver is just such a crucial organ and all the treatment beats the hell out of it. But, I've got SO MUCH to live for. I'm not going down without a fight!
So much love to all of you. This is tough, but we can do it. Just line things up as they come, and knock em down. For as long as you possibly can.
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Lu77, welcome to Breastcancer.org and thank you for sharing your story. We're so very sorry to hear of your progression to metastatic disease, but we share in your optimism and fighting spirit!
You're sure to find many others here who feel the same, and are happy to support you through your treatment and through all of the other challenges that come with a stage IV diagnosis. We are all here for you! Our community is full of many who are always willing to lend advice, information, experience, and a shoulder to lean on.
Sending you lots of hugs and warm welcome wishes to our Community. Please let us know if we can do anything at all to help while you navigate around!
--The Mods
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Hello, Lu. Please join us on various stage iv threads. Here is a link to the liver mets thread to get you started.
https://community.breastcancer.org/forum/8/topics/809420?page=501#post_5614589
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Thanks, ShetlandPony. I have actually already been lurking there. It's hard to know where to jump in, but I'll pull up my big girl pants and do it.
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Lol, many of us started out as lurkers. Just jump in and introduce yourself. Tell them ShetlandPony sent you.
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Lu77..go to the liver thread link that SP copied.
I also had liver full of mets. It can be treated once you find that right combo!
Lurk no more.
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libby2002, I read your post and was deeply affected. It was short, to the point and very powerful. I feel bad that I did not comment sooner. Lu77's story was probably more what the mods expected these stories to be and I appreciate hers, too. But your was such a gut punch. I'm glad you posted it. I hope you both get used to the idea of being stage IV because that's the best you can do. It takes some time to get past the shock and adjust. But it does happen. I'm in year five and doing ok. I try not to waste precious time worrying and let that interfere with my joy in living each day.
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Hi All. I haven't posted in a while but wanted the group here to know I have been on Xeloda since June and am now NEAD. It worked after only 3 cycles so we are very pleased. It is a minor struggle with SEs but I will manage. My energy level is lower but I am able to do most the same things as when I was on Ibrance. I read this thread often and know this may not last long, but it is good for now. I am 4 1/2 years into my stage IV dx and didn't think I would live this long so every day is now a gift. I had a scare last week where I was suddenly unconscious for about 2 minutes but they found no cause so I am now home being watched like a hawk by my family. I guess it is better than being ignored.
Blessings to you all.
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I was diagnosed in 2015 with what I hoped would be a one and done cancer. I had a partial mastectomy, internal radiation, and arimidex then tamoxifen. Small, stage1 and Grade1. Everything looked good for a bright future.
Today I found out that it has metastasized to my spine. There are 2 deposits so far, largest is 1cm. I'll do a PT scan soon for a clear whole body picture.
Last summer I had a T4 fracture, and after 3 biopsies and some imaging, it was deemed to be not cancer related. My oncologist did a CT scan of my full torso anyway to be sure. All negative. Then 2 months later I went in for muscle pain in my back and my PCP called my oncologist, who ordered a full MRI. And there they were, two little spots on my spine, T12 and L3. So now the T4 will be assumed to be cancer as well.
My father died of metastatic breast cancer, he was diagnosed at the age I am now, 67, and had a large mass and lymph and blood vessel involvement. His metastatic disease was discovered 17 years later. I'm feeling shortchanged.
My medical protocol will be Letrozole, Ibrance, and an IV bisphosphonate. To start. I have other health issues, so we shall see. I want to see my beautiful 5 year old grandson graduate from college. That's my goal, that's my focus.
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Tibbs, those two tiny lesions aren't a bad hand for Stage IV - ladies with less than five lesions in one area (like bone or liver),especially small lesions like yours, have pretty good prognoses and these drugs can help keep things under control for a long time. We have more than a few ladies on that combo (myself included) and more than a few have gotten some excellent runs of 4 years+ on that first line alone. Now, everyone's body differs but that should give you some hope.
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Gibbs, we're sorry you had to join this group. We're sending loads of hugs to you. We hope your treatment plan knocks the cancer way back. Please stay connected here and keep us posted on your PT scan results, we're thinking of you!
The Mods
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Jaycee49, my apologies for the length of my post. I guess I should have read some of the others and edited accordingly. Thank you for reading.
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