I discovered a lump in my right breast in Jan 2014, had a mastectomy and did not need any other treatment. In June of 2019, I felt a small lump on my head. It did not go away, so I went to my dermatologist. She took one look and said that is metastatic breast cancer. I have been on Faslodex ever since . My 27-29 scores are under 20, so I feel very lucky.
How did you find out your breast canc... - SHARE Metastatic ...
How did you find out your breast cancer had metastasized?
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sevoia
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Hi. 🌸🌷 My story is: I found a ball in my right breast. I had radical mastectomy (2010) tamoxifen treatment for 6 years. In August 2018 I had a small slip in a parking lot, I thought it was somewhat muscular, I could hardly walk, I used a lot of creams, ice, heat and it did not improve I went to a family doctor who prescribed stronger and stronger painkillers and it did not work, I did one X-ray and there appeared a tumor in the left acetabulum of my hip. I managed to find an oncologist who would treat me and speak Spanish and I confirm that it was metastasis to the bone 😢 but .... here I am and here I am still 👏 Thank God 🙏
My internist felt something odd on a breast exam in April 2017. Mammogram showed a small opacity. Had a lumpectomy and node dissection followed by 5 mo chemo and 7 weeks radiation finishing in March 2018. In Sept 2019 had a small bowel obstruction that resolved and nothing showed on scans, tests, etc. In Jan 2020 had abdominal surgery and stage 4 was discovered in my small intestines. In treatment since Feb 2020.
I’m sorry that you discovered stage IV. It seems like treatment is helping. Are you saying that the cancer in your small intestine did not show in the pet scan? This truly concerns me because I have an irritated nodule in small intestine and my onc says my bowls are fine even with Mets to liver.
My disease does not show up on scans and my onc says my Ca 27-29 is not reliable so we're sort of fumbling around in the dark, waiting for symptoms to show up. It's a bit unnerving. Just have to have faith and trust.
Dios is big 🙏
I was diagnosed with DCIS, stage 0 in November of 2015. I had a lumpectomy and 6 weeks of radiation. In the spring of 2017 I had pain in my hip and went to a chiropractor, the pain improved but then got worse in January 2018 (I was also really tired and lost 30 pounds). I attributed the tiredness and weight loss to my stressful job but my husband convinced me to see my primary doctor. I was diagnosed with MBC in March of 2018.
I'm currently participating in a clinical trial (EMBER) and doing well.
Hi Sevoia 🌹 I found lump in left breast in 2011 (age38)which turned out to be Stage2B breast cancer. Did mastectomy, 6 months chemo then radiation. In 2019 hurt my rib when out on a run which took a while to heal, then I hurt it again swinging my legs over a pole on kid’s playground. I still didn’t think anything of it then a third time I had a run of sneezing and felt my rib pop and only then, whilst hobbling around did I get checked and scan showed it in ribs, spine and lung. Lucky for me I am still running🤩
Good for you. I am glad you were able to get diagnosed and treated. I am hoping when others read these stories, they will be able to relate and get diagnosed earlier.
I also had a sneeze which ultimately led to MBC diagnosis. Ribs hon and spine.
Hi, Sevoia!I was diagnosed with BC in 2000 after discovering a very small lump in right breast. I opted for double mastectomy and surgeon found no lymph node involvement. I had no follow up treatment (in hindsight, I was told I should have had follow up with tamoxifen.).
In 2017, I was diagnosed with MBC, after discovery of small lump in my right armpit. Spread was to spine. I was on Ibrance/Letrozole for 33 months before mild progression. Switched to Faslodex about six months ago and grateful for a good response.
I’m wishing you many progression free years and pray that both of us, and all MBC patients, benefit from continuing research. God bless you, Sevoia.
Linda
Thank you.
Hello
I had a thickening rather than a lump to my right breast, diagnosed with invasive ductal stage 2 grade 3 BC aged 34. Had 6 chemo, mastectomy, radiotherapy, a year of herceptin and 15 rounds of radiotherapy.
Last February I had an on/ off slight niggle on ribs left side, went to GPs and was sent for a bone scan, hot spots seen on a rib and hip/femur so sent for CT in april, confirmed few days later with mets to those bones and also liver and right lung of which I showed no symptoms what so ever.
I was diagnosed with breast cancer in June 1997 after finding a dimple in my right breast. Found 7 out of 25 lymph nodes that were cancerous. Had a lumpectomy, radiation and chemo. After two years (2015-2017) of thinking I had sciatica in my lower back and having physical therapy, Acupuncture and seeing a chiropractor I suddenly fractured my back. Finally had an MRI and found large tumor fractured my sacra iliac joint and there was cancer from my skull to my pelvis. Diagnosed MBC in March 2017. Have been on Ibrance and Letrozole and Xgeva since and doing well. I always suggest those who have had breast cancer get checked thoroughly if any unusual aches or pains show up in the future. If I’d had the MRI two years earlier it would have prevented a lot of suffering. Glad there are many new drugs being developed to help keep MBC at bay. Best wishes to you and all who are battling this disease.
I agree with you gerisplace. I am also wondering if breast cancer survivors should have their tumor markers checked, possibly on an annual basis. It may find metastasis sooner.
Interesting stories! I was diagnosed first at stage 2 b in 1994 after I found a lump. Lumpectomy, Chemo, and radiation followed by 5 years of tamoxifen ( in a clinical trial ). I found another lump in the same breast in 2005. Mastectomy and 5 yrs of Arimidex. In spring 2015, I experienced bothersome tingling in my right hand. My doctor diddled around with PT and an orthopedic surgeon (no thanks). He never thought of breast cancer until I suddenly had lymphedema for the first time. Biopsy followed. BC cells in the breast tail under my arm had wrapped around my nerves. I had mets to femur, t6 spine and lung. Now on my 3rd line of treatment. Currently Piqray, Fulvestrant and Exgeva. In the fall my eye doc ordered an MRI to check out something odd. The small eye thing she was looking at is being impacted by my meds (good news) But they also found two small spots on my brain. I’m having gamma knife radiation on Weds. So random!
Dear Buffwright. I am sending prayers and good wishes to you for tomorrow when you are treated with the gamma knife. What is the time so I/we can concentrate the healing energy I/we am/are sending to you?XXX OOO
I go in at 5 am pacific time Wednesday! That is hopefully the worst thing....
I am sending you a prayer.
I hope everything goes well on Wednesday 💕
Dear Buffwright. Well? How are you after the gamma knife intrusion? I've been thinking of you and hoping all is well.
It wasn’t terrible! I overslept and someone called me at 5:20 am....I made it there by 5:38! Having the frame afixed to my head and snapped into the bracket was a very strange sensation. The machine just makes beeps (not noisy like MRI). I slept through most of the actual radiation, which took 2.5 hours. (Thank you, drugs) I went in thinking I had 2 small lesions, but the pre-procedure MRI, which is more refined) showed 4 more. Other than the small wounds on my head, followed by a little swelling amd numbness for a couple of days, no side effects. Some people apparently are fatigued, but I’m so fatigued from medications...how would I know?
Hi thereI had breast cancer in 1994... mastectomy and lymph node sampling...no spread
In 2018 I was riding my horse and felt a horrendous pain between shoulders...after an MRI it was diagnosed as a metastatic spinal fracture...my whole skeleton is full of bone mets...I’m on my fourth treatment
I never knew it could return after so long or I would have had my constant back pain checked a lot earlier but I assumed it was my job..hobby and age...stupid
Barb
Xx
Hi Barb,
How are you feelings? Are things improving with a lower dose of Xeloda?
xo Jade
Hi JadeI’m struggling with Xeloda...nausea and constipation are the main issues
I’m seeing my oncologist tomorrow and going to ask for a dose reduction or come off it...life’s not worth living like this...this is the only treatment that’s made me ill....
B xx
Barb,
I am so sorry to hear this! My heart breaks knowing that you are struggling, quality of life is important. I hope the dose reduction helps, please keep us in the loop.
Sending love and healing light.
xo Jade
I am so happy to read ALL these stories as tonight a friend from my BC dragon boat team confided she has back pain... I encouraged her to get it checked out as I had pain for 3 years before my MBC diagnosis. I wouldn’t have waited if I had read all these stories!
I am hoping these stories can help survivors get the diagnosis sooner.
I am so sorry. Unfortunately, you don't seem to be the only one who suffers some sort of pain for a while before being diagnosed. It is a difficult position as we all suffer different pain especially as we age from arthritis, stress and our hobbies, which we think is normal pain. I wish you the best in your journey
Hello Sevoia I felt I had to add my story to the others as it's possibly quite unusual. I had a radical mastectomy in 1988. Lymph nodes were apparently clear but I was put on Tamoxifen for 10 years.This time two years ago in 2019 I went to my GP with strange back pain - mainly noticeable at night. After several consultations and eventually a visit to A&E I managed to get a scan and they found extensive bone mets throughout my body. More than 30 years after my original cancer and here I was, stage 4, quite out of the blue! I am now 77 so I realise I am more fortunate than many.
I was put on Letrozole almost immediately and then Palbociclib and Denosumab and for now the cancer is 'stable'. My dear husband has dementia and I must stay alive as long as possible for his sake. I count my blessings - and look forward to getting the vaccine so that I can help with my many grandchildren again!
I’m sad that it returned but what a gift such a long pain free interval seems... I am happy my interval was 16 years.... sad for others when it comes back quickly.
The variety of responses underscores for me how individualistic cancer truly is in the way it is found, how we respond to various treatments, etc.
I was originally diagnosed stage 2/3 in 2004. Had a left mastectomy, chemo, radiation, and took five years of Arimidex. In the summer of 2018 I noticed that I was really fatigued and gaining some weight. I chalked it up to the job stress I was under. It kept getting worse and I started to retain a lot of fluid in my belly and ankles (fluid also in my right lung, hence getting out of breath so easily). I finally went to my primary care doc, and she thought it was a pancreas issue. A couple of weeks later I went back in her office, pulled up my shirt to show my distended belly and just said, "Help, please!" She got me right in for ultrasounds and a CT, and ta da--stage four cancer in the fluid and diffuse mets throughout my spine, ribs, and iliac crest. Had it not been for the fluid build up, it might have taken me longer to get a diagnosis and get going with treatments. My CA 27-29 scores were initially in the 50s, climbed to almost 1200 this past summer with liver involvement, but are now back down in the 200s. I am hoping after three more cycles of Abraxane, they will be down to where they were initially or lower. I feel lucky to wake up each day, draw breath, and enjoy life.
Dear WordNerd. The last line of your comments hit me in the head right where I needed to be struck. Recently, I've been down in the dumps, missing my cherished husband who passed in 2007 and wondering why am I here.So, I have smartened up and am back to knowing how very blessed I am to be living this long and having gone through seventy eight of my years, happy, healthy, dancing, singing, traveling , directing/producing local theatre and being mom and grandma to a good family. That was some long run on sentence! Thank you for the inspiration!
AddendaI was seventy eight, five years ago, coming on six.. The bilateral breast cancer diagnosis was made in June 2015 and the diagnosis of MBC to the liver was suspected in December2019 and officially confirmed ,in Jan 2020. I was still dancing up until the end of Jan 2020 when covid reined me in. ```I am impatiently waiting for the vaccine which will allow me out, again.``````````
A post just below this one has a good last line: thankful every day to wake up, breathe, etc (can’t find exact quote. I’ve tried to to always be optimistic about surgeries (6) & treatments over the past 12 years for me; but just to help you keep things in check:Coronavirus has changed too much in my life in terms of limitations; bug there is light at end of tunnel—though to overshadow that they’ve found new strain.
In CA though I’m immunocompromised I’m 55 yo—so I am In last tier (not prioritized—though some “connected” people are as well as a group of teachers in zBay Area were told to skip the line by posing as health care workers—wrong on so many levels)!
Despite all of this and not knowing when I’ll be vaccjnated, what the new strain will bring & when/if we’ll reach hers immunity:
I think come April/May: I plan to say “self you have wasted a year of your last years, months, days and hours on @Shelterinplace/stay@home orders”... whatever will be will be!!! I am going to ignore it all and “LIVE MY LIFE” not in fear of COVID-19 or NETS CANCER!!!! Again I’ve wasted too much in the past year—waiting for what? My favorite phrase is “CarpeDiem” “seize the day” & I plan to drive/fly wherever we want to as behind COVID-19 will follow new strains and new viruses (hopefully not pandemic levels); but I just know that I cannot FREEZE my life/or time; it WILL go on—BIG QUESTION: for me is will I go on too?
So, I’m going to start going now (we’ll probably once I get my vaccine) despite what happens with future strain, herd immunity, and new “contagions”!!
We’ll never get “full-story”on CIVID & I cannot play tgat game—theres spark lit having nets and the race is on to ENJOY EVERY DAY YO FULLEST as everyone cancer or not has limited time on earth—I want no regrets!
Fondly & with hope best wishes to all fir safe happy healthy 2021 & many years beyond that!!
Hey there!! I was initially diagnosed in March 2013 stage 0 and stage 1. Had a dbl mastectomy no lymph node involvement. Put on tamoxifen. In October of 2016 I had sharp pains in my sternum my pcp said it was inflammation gave me anti inflammatory drugs. They worked but I asked him for a couple pain pills so he said I needed a CT before he’d prescribe them. Got a call stating I needed to call my oncologist because I have a tumor on my sternum. Onc sent me for a pet scan and I had bone mets in spine, ribs, femur. Was put on Ibrance and letrozole. All was good til this sept 2019 and had mild progression. Switched me to flasodex and still Ibrance. Was good til June then had liver progression. Put me on verzenio. Didn’t work at all. Still on faslodex now with Afinitor. Had scans today. Hopefully it’s working. Not sure I can mentally take this rollercoaster ride much more.
Hi Sevoia, I agree with Buffwright that your question has lead to some interesting stories!
I was 60 years old when I was first diagnosed in 2006. After 3 lumpectomies and radiation, I took tamoxifen for 5 years to June, 2011. I was preparing to fly to Mexico to visit a sister-in-law in February, 2019 when lymphedema flared in my right arm. After I returned from the visit, I was diagnosed with MBC with extensive bone mets, etc.
Reviewing all 14 replies to your question, it seems that at least 7 of us were diagnosed with MBC more than 10 years after our first diagnoses (the actual range is 13 to 31 years!). In almost all cases, something physically wrong alerted us to seeking medical attention. By then, we typically had extensive mets to our bones and elsewhere. I wonder whether it would have made a difference if we had had scans before we noticed other symptoms. Perhaps, we would have had fewer mets to reduce. I wonder why our family doctors aren't performing earlier checks given our histories.
A time lag of a decade or more might suggest that our cancer mets are slow-growing. If not, then our breast cancer cells must have been dormant, and some other stimulus started their spread. It seems to me that researchers might learn a great deal from analyzing our individual stories with regard to our initial diagnoses, types of breast cancer, treatments received, ages at various stages, location of mets, etc. Undoubtedly, there are individual patterns which will suggest treatment courses best followed. I simply don't understand why this has not been done by now, given the millions of women world-wide with breast cancer, and the billions of dollars raised to "find a cure".
Yes we need more research... I always wondered if a very stressful job that had me sleeping only a few hours a night for a few years was a biological trigger... others here also mentioned stressful jobs. Would love to see a study analyze factors setting off our late cancers.
Yes, we should add stress and other illnesses as details to be included in the analyses! Computer programs can include many factors and look for correlations among them. Even when I was in graduate school, multivariate statistics was being taught so the programs must be very sophisticated by now.
I agree 100%
in reply to Hazelgreen
Typically after a primary diagnosis you are followed up for at least 5 years. I wasn't. At my 3rd follow up appointment in clinic I was told that I wouldn't be invited back and was told I was being handed back my health to manage, was given a hefty folder with all manner of info in regarding 'life after breast cancer'. I was not happy and voiced this there and then to be told that the chances of anything sinister being picked up during an appointment were slim, it is in fact the patients experiencing symptoms and reporting them and they did stress that I am more than welcome to contact them any time and that I'd always be fast tracked etc...I've looked back a lot on this nearly a year since diagnosis of mets and wondered had I missed something sooner, maybe I did, maybe I had aches and twinges that I just attributed to the tamoxifen or the hysterectomy I'd had due to taking tamoxifen in 2018. I just feel so bloody frustrated and not knowing who or where that frustration rightfully lies is frustrating in itself!
Hazelgreen in reply to
Here in Saskatchewan, in 2006, I received surgery and radiation for early breast cancer. I think the hospital surgeon/oncologist saw me for follow-up after yearly mammograms, but I don't think the radiologist from the cancer clinic ever did. The surgeon was concerned because my margins weren't clear, and he wished I'd have a mastectomy (I don't know whether he saw all his cancer patients for follow-up). My family doctor prescribed the tamoxifen I took for 5 years. I guess the UK system is different but it makes sense to me that it is very unlikely that a mere follow-up appointment would reveal any growths (like a CT scan would). I think I understand your frustration since no one seems to know which symptoms best reveal MBC while it's in its early stages. Basic research needs to be done on issues such as this, rather than solely on the development of expensive drugs to enrich "big pharmacare" companies.
What are your 20-29 scores? Is that a marker?
Hi Betty, I'm not familiar with that cancer marker. The only one that seems to be in use here is Cancer Antigen 15-3 with 0-30 being the normal range. Mine is elevated but dropping with treatment.
It is CA 27-29 and yes it is a tumor marker. Not all doctors believe in them, so not everyone gets tested. However, I am beginning to believe that all cancer survivors should be tested at least once a year just like men are tested yearly for prostate cancer. This might give us a diagnosis before we have symptoms and we could catch it early.
My doctor said some people's cancer is more accurately reflected in tumor markers while other's is not. My CA 27-29 marker seems to be a pretty reliable indicator of disease progression, so I have it checked every month before I meet with my oncologist, along with CA 15-3 and CEA. He also orders a PET scan every three months. My former practice never ordered a PET Scan, CA 15-3 or CEA. They ordered CA 27-29 about every three months. It's always worth asking about various tests, particularly if you have good insurance that covers it.
The CA 27-29 has been reliable for me and I get tested every month before getting my shots
very interesting question for all of us, I'm sure. I was diagnosed with a small but aggressive breast cancer in 1995 at the age of 45. Went through chemo and radiation and was told, as we were then, that if you get through five years cancer free, then you've beat it. In 2013, I had been exercising a lot and was sore for so many days that I finally went to my family practice person. She thought it was arthritis relative to exercising but to be safe, she prescribed an xray. Thank goodness in that it identified what appeared to be a return of the cancer. After PET scans and a bone biopsy, it was determined that the cancer had returned and spread my bones 18 years later. Although, as it's a very slow growing variety, it's likely it was moving much before 2013. I will always be grateful to that local doctor for having the brains, training and intuition to identify what would have likely killed me. I'm still here....many different drugs later....but generally I feel great and am active. *BTW, my onc says they never give the 5 year rule now.
P.S. to my comment above--I was told by the fp doctor I went to that the pain was likely related to too much exercise and not the eventually discovered mets.... which underscores what we live with daily, the fear that an ache, which is probably normal, will not be. That drives me a little nuts and takes a lot of mental energy to rise above.
It's good that your fpp wanted to be safe, and ordered the xray. It seems to me that all fpp's should be equally cautious when dealing with former cancer patients! I think, as others on this site have said, that we shouldn't worry about insisting that every little pain is checked out, given the seriousness of our histories. We really can't seem to tell when our cancer cells start growing again, and how long it'll be before new tumours develop but it seems to me that all breast cancer patients need to assume that this is a possibility.
Another topic I'm trying to research in older journals concerns women who refused treatment altogether - some wouldn't even do surgery (that seems to be critically necessary) - others refused radiation and drugs. I'm interested in figuring out their odds of dying from breast cancer versus other causes.
Out of curiosity I did a VERY cursory internet search because I was curious about the percentage of first time breast cancer patients later getting MBC, as opposed to those whose first diagnosis was MBC. The percentages I see range from 20% to 30% BUT no specific data is kept.
“The poor outcome with the Halstedian approach, as well as the observation that 20%-30% of node-negative patients ultimately develop metastatic disease, led to the currently held micrometastatic paradigm. This paradigm asserts that many patients with early-stage disease have distant micrometastatic disease present at the time of diagnosis, putting them at risk for the later development of overt metastatic disease.” — The Oncologist Journal Prognostic and Predictive Factors in Early-Stage Breast Cancer (May 2004)
“Stage at initial diagnosis is a strong predictor of distant metastatic recurrence, with women diagnosed with cancer that is locally advanced, spread regionally beyond the breast, much more likely to recur than breast cancer diagnosed as localized, although as many as 30% of localized cancers ultimately do recur, and many of these will go on to develop distant metastases.” — Musa Mayer’s Report: Silent Voices, 2006.
What troubles me is that without data, there is no funding and that perhaps the medical community's feeling is, to be blunt, we're generally an aging population (closer to death) and that there's a sense that it's possible to CURE the initial cancer, so efforts and money are directed to that effort. What this means is that MBC is not necessarily on the radar of physicians, until it is and you're in an oncologist's office (again).
What this also means is that we in this category--and more important--those in the first initial diagnosis, post-treatment category must be vigilant. The problem is that, as pointed out through this series of posts, most of us felt absolutely fine before the horrifying news that the cancer was back and had spread.
I think we need to tell women, post cancer treatment, to continue the relationship with their oncologists and keep the checkups, including at least annual PET scans and frequent tumor markers, way beyond the routine post-treatment visits, which may only last a year or two. Perhaps some of our MBCs could have been found sooner and stopped?
Hi Ellen, Thanks for the reference which I'll check out.
The micrometastatic paradigm makes sense since where else is the breast cancer going to come from, if it doesn't recur in a breast! The saddest thing is MBC occurring in 20 to 30% of those with node-negative disease, as those individuals likely did assume that they were safe from breast cancer once their tumours had been removed, and all their lymph nodes were confirmed as clear. This surely means that all former cancer patients should be monitored.
Someone like me with 7 to 9 nodes impacted clearly should have assume MBC was forthcoming. Still, no family physician suggested that I should be checked, and I simply forgot about cancer as I wrapped up my 38 years as a forensic psychologist, and looked forward to travelling the world. (It took 13 years from my original diagnosis to a flare-up of lymphedema before I asked my family physician to have it checked out. It was the bone mets that confirmed MBC, nothing in either breasts or armpits. )
Anyway, I'm continuing on the assumption that, whatever its source, MBC in my case is likely slow-growing. The only question for me is what treatment I'll pursue next once tamoxifen stops working to control my tumours. Quality of life is my major concern at my age (75). Old histories of cancer patients dying in old age interest me as do autopsies that uncovered untreated breast cancer in old corpses.
Yes, I'll be 70 next month and am truly hoping for the autopsy to reveal at 90 or so that I died from a sky-diving accident and not MBC...😀
I hope so, in your case, but I'm afraid of heights . Please let us all know if you do any more internet research.
On a different topic, I much enjoyed your explanation as to the origins of your novel, "The Perfect Fraud"!
😉
Thank you! I'm working on a second novel now, which I'm hoping to get to my agent by March. xox
5 years ago I had a pain running down my right leg--all the way down to my foot. I went to a chiropractor for 6 months. No change. I thought it was a nerve. I moved to another town and found a different chiropractor. He said it didn't act right and sent me to a hospital for x-rays. That x-ray showed 13 tumors, from my skull to the bottom of my spine. Ibrance has given me 5 more years till it no longer works, so I had to change drugs. Hoping for 5 more years, healthy ones, that is.
Hi,My diagnosis was very sudden.
I had noticed when looking in the mirror that my right breast looked different when contracting muscles.
During lockdown, my dog would wake me up really early.
One saturday morning I though I'd look up on the internet to see what this change in breast could be.
I read that if your breast changes shape when you put your arm up it's a bad sign.
I asked my husband to take a picture and got a prescription for a mammogram.
I had a 23 mm non palpable - cause really deep ~ tumor.
Had the biopsy, saw the surgeon. It seemed to be the cancer where I was in the 95% curable- small tumor, er pr +, ki67 10%, grade 2. Just surgery, radiation and hormone therapy- no chemotherapy needed.
Pet-scan was not needed cause the probability of metastasis was 0,5%.
Still I insisted to get one. Just felt it was more serious, wanted to sure... I don't know.
Pet lit up with 9 bone mets suvmax from 12 to 27.
De novo MBC, surgery was postponed.
Had a clip put in on the breast tumor.
Have been on ibrance, anastrozole, zoladex and xgeva since June 2020.
Pet scan January 2021, bone mets not active for now. Breast tumor suvmax gone from 11 to 5,5.
Will be meeting surgeon next week to remove breast tumor.
I read it reduces tumor burden and appears to be better.
That's my story.
No symptoms, no palpable tumor, no family history.
Only strange thing was, 18 months before, a stroke at 47 with no found cause to it - and most importantly no sequelae.
De novo MBC at 48.
Still find it difficult to understand.
My daughter's 11 and my son 13.
I told them about the first non-MBC cancer and that my survival chances were 75%.
Still haven't told them what I actually have is non-curable.
It's bad enough for my husband and I to live with without having the kids looking at me as I am dying.
Anyway, I'm feeling good physically with the treatment. Hardly any side effects.
I'm sure no one around could ever imagine what I really have. I look just the same as before.
I still wonder if it's not just a whole big mistake.
Take care
Lucie
I was diagnosed with BC in 1991 after my mammogram showed a suspicious area. I had a lumpectomy, radiation and chemo. In August of 2018 my endocrinologist did some lab work because he wanted to start me on Prolia for my osteoporosis. My liver function test (alk phos) was slightly elevated and had repeat tests in December 2018. Again lab test was slightly elevated. Went to my PCP who did more extensive lab work and tests were elevated. I had an abdominal ultrasound, CT scan, MRI, liver biopsy and PET scan. Tumor was found in my liver. I have been on Faslodex since March of 2019. I have an abdominal MRI every 3-4 months. I am stable with no progression and my labs are normal. My tumor markers have always been in the normal range. Good luck to all of us in our journey.
A great question that has elicited a great many incredible stories. Thank you ladies!I had been on birth control pills for years after our last child in ‘82. I started to suspect that something was wrong but mammograms never captured or revealed a tumor until I turned 50 and decided I needed to pursue a disturbing “difference” in my left breast. Sure enough in May of 2003 there was a lump and fast forward, 2 lumpectomies, sentinel. Ode dissection, chemo, radiation and 8 years of tamoxifen, I emerged as a survivor. I had gone through everything they threw at me and saw cancer in my rear view mirror.
I was active, played golf, taught middle school, and looked years younger than my age. But in the fall of 2019 at age 67, I developed a limp and a mystery pain in my right leg. Iliotibialband syndrome? Scoliosis? Sciatica? A series if therapies followed to include massage, physical therapy, myofascial, chiropractic...finally I got fed up when I had a profound limp. I returned to my FP who ordered a X-ray of my back since so many of the symptoms pointed to nerve damage.
A brilliant radiologist looked at that X-ray and indicated that my back had lots of arthritis but he noticed a small spot on my right ilium near the edge of the X-ray. Checking on my former breast cancer diagnosis, he recommended further investigation based on potential BC metastasis.
It all came back with a predictable awfulness. On the day I retired I was diagnosed with MBC: metastasis to my right ilium and two small tumors on my skull.
Why did it take almost a year to arrive at this? I NEVER thought my BC would return. I was a survivor but not a patient...until I suddenly was.
In July 2020 I started treatment immediately with ongoing Anastrozole, followed by radiation, followed by IBrance and monthly infusion with zometa (bisphosphonate for bones). I started seeing an orthopedic oncologist at another hospital and he began tracking the condition of my hip because there was an alarming void in a weight bearing bone that could have catastrophic results if it fractured. I was facing a huge surgery to replace my hip and rebuild my pelvis.
Thankfully, all the treatments have worked to halt the progression of the bone metastasis, the bone has regrown (yesterday I got the good news) and my blood work shows a steady reduction in cancer antigens.
So 7 months into treatment , with a reduction in IBrance dosage from 125 mg to 100 mg, I am doing well and hope that I continue to be one of the happier stories here...I know there are no guarantees, no promises ...just hopes and prayers.
I have lost mobility/flexibility in my right hip due to fibrosis after radiation, but I can walk with no limp and I plan to golf again this summer. My hair is thin, but it’s mostly there. My life revolves around taking the right combo of pills to control pain because I have sciatica possibly aggravated by the radiation.
What I learned: you never have cancer in your rear view mirror. You need to be hyper vigilant to possible recurrences, don’t take risks with your health. Eat well. Exercise as much as you can. If you feel something is wrong, don’t accept the first diagnosis.
If and when things go south, I hope I have the strength to keep going with grace and courage I see among these ladies. IBrance has really only been around for 6 years and there are thousands of women alive today because of this and similar medications. Today there are trials going on that may make a difference for us and all future patients.
I hope and pray that our group continues to live and prosper and enjoy the lives we have. This pandemic is stealing away some good life experiences but it’s just our bad luck.
Thank you to you all for your stories and your prayers, your courage, your tears, and mostly, your collective wisdom.
Well said
Thank you so much. After reading your post I phoned my oncologist and got a referral to a dermatologist. Good work you..
Hi Sevoia,
I was diagnosed with metastatic breast cancer de novo, with no prior cancer diagnosis or anything more serious than chickenpox (three times, by the way!) I found what I thought was a breast lump in February 2018 as I was drying off after a bath. This was on a Friday night. I acted immediately. I wasn't going to bury my head in the sand and hope that it went away, as my very first thought was "breast cancer". By the following Monday morning I had an appointment to see my GP, who examined both breasts. She told me to return after my next period, as the lump could just be hormonal. I had just had a period, so I made an appointment for the following month.
During that time the lump went away. It turned out that what I found was a harmless spot. So I was tempted to cancel the follow-up appointment. But I decided to keep it, and when I was examined the second time my GP found a lump and said I needed a mammogram. After the mammogram I was then told I needed an ultrasound to get a closer look. As I looked over at the screen I could see a dark shadow showing up, which turned out to be breast cancer, but I still needed a biopsy to confirm the doctor's diagnosis. I asked the doctor who took the biopsy if it could just be a cyst and he looked me straight in the eye and was honest. He said there was a strong possibility it was breast cancer. I needed to hear the truth and am glad he didn't sugar coat it.
I found out the disease was metastatic in May 2018 following a number of biopsies (breast, lymph node, endometrial), CT scans, MRIs, a full body bone scan and a PET CT scan. After each examination, the results would throw up some other issue that needed investigating, which is why it took so long to get an accurate diagnosis. But the good news is once I found out the disease was metastatic I started treatment immediately following my initial consultation with my oncologist. For the first few months after this whole nightmare began I was being told by my GP, surgeons and others that it was early stage, so learning that it was more advanced than I had been led to believe came as a shock.
It took a while to get over the shock, but I have been living with this disease for nearly three years now and am doing well. My life has carried on more or less as normal. The difference now is that I have to factor in doctor's appointments, hospital visits, and be in treatment for life. But I am happy to do that to stay alive and treat this as a chronic condition that can be managed. It takes a lot of endurance to come to terms with the fact that there is no easy fix or that we will get the "all clear" that early stage breast cancer patients do. But at the same time, living with metastatic breast cancer means we have ongoing support from our medical team. I've had friends with early stage disease tell me that they felt like they had been left to fend for themselves without any support after their treatment ended. I would feel lost without the support of my medical team. I rely on their expertise and knowledge.
Sophie
I had dcis in my right breast and idc in my left, diagnosed in april of 2017. Had double mastectomy no further treatment required. My surgeon said i was "cured".In oct/nov of 2019 started having several severe headaches each day and vomiting. My pcp said tension headaches, and then sinus infection. Ended up in emergency room where they did a ct scan and gave me the news. Spent a week in the hospital, where they did a lot of imaging and biopsies and a lumbar puncture. Did whole brain radiation, and now get herceptin and perjeta every three weeks.
I was never diagnosed with Breast Cancer until after I had a biopsy on my hip. For 1 1/2 years I had increasing pain and decreased mobility in my left hip. I was using a walker and in excruciating pain. I also had back and rib pain which I thought was from constantly pulling muscles. My family doctor and an orthopaedic surgeon did not think it was serious. One said I had torn the cartilage in my hip and the other said it was nerve damage. I was referred to a neurologist who I had seen before due to damage from a car accident a decade ago. He took one look at me as I walked into his office and said there was something seriously wrong. He said it wasn’t his department but he was sending me for an MRI of my hip. I cried with relief that he was doing this. The morning after my MRI I received the phone call saying I had cancer. A CT Scan showed nothing (head to groin scan) so they said it was either lymphoma or myeloma. It took a month for them to do a biopsy and when it came back breast cancer I was devastated. The Celt scan did not pick up the tumor nor did a test by my family doc. She poked and prodded and couldn’t feel anything. I was sent for a mammogram and it didn’t show anything but another type of mammogram that is taken like slices showed a small lump in my right breast.
That is some story.
It was a nightmare that I didn’t wake up from.
Hello!! This is my story....I have had 5 negative mammograms ever since turning 40 but noticed a very large 2 inch lump in right breast on Memorial Day in 2018. Within a few days I was fortunate to get immediate screening and biopsy. On June 1st 2018 I was diagnosed with stage 1 invasive ductal carcinoma HR POS Her 2-. The doctor at the breast clinic, the surgeon and oncologist I consulted with ALL agreed it was "no big deal". Given my family history I decided to be aggressive and opted to have a double mastectomy. I went for my pre-op on August 8th and had chest x-ray. The surgeon called me at 7am the next day and said my dear...we have a problem. You are not stage 1.. you are stage 4 and surgery was cancelled. The breast cancer had spread to chest lymph nodes and both lungs. I was told I had 1.5 to 3 yrs possible 5 but that was unlikely. Here I am over 2.5 yrs later still stable with no progression on Ibrance and Letrozole. And there you have it! Hugs
In a way , I can relate to you . My lump never showed up on any previous mammograms. It did not show up even after I found it. I am glad you are doing well. The cancer medications we have are life savers
I am so happy you are stable and you are proving them wrong.
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