Would you share your Stage IV story with us?
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Lu77, oh, no, no, no. I did not mean yours was too long. Most peoples' are longer. Mine was probably twice as long as yours. Several people replied to yours (including the mods) and somehow lilly's was skipped over. I just didn't want her to feel ignored. Please accept my apology if I made it seem like there was anything wrong with yours. For me, the longer the better but I thought, even though very short, lilly's was very powerful.
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Hi everyone, I was originally dx 6/2016 stage 1 at age of 36. I had just lost my mom 4 months prior to BC so I knew u had to throw in the kitchen sink with this. I had a double mastectomy (including nipples). 6 rounds of chemo (due to high onco score). Then started tamoxifen 3/2017. I always did labs and went to all of my appts. Then 7/2020 one day I had sudden double vision, about 3 days after I called MO cuz double vision still there24/7, he ordered brain mri. Lesions showed in skull. Then he ordered bone scan and CT to body and showed I had bone Mets. Prior to 7/2020 I had no symptoms, maybe some back pain that started about 2 weeks before my double vision. I did everything I could do from the beginning and got stuck having this. I have 2 kids 17&6. I’m 41 now. I have so much life left in me. Things I still want to do. My son is a senior this year. They need to find a cure for us.
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My Bio says it all!
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Hi Everyone, this is my first post. I was diagnosed with MBC de novo on February 16th of this year with mets to my bones (spine, ribs, sacrum). I am 41, married (8 years, together almost 21 years), and we have two daughters, 5 and 2 (turning 3 this month). These three are my world. I have had back pain since my 5 year old was born but last year it got worse. I was still able to function normally and didn't take anything for it, not even Advil/Tylenol. I assumed it was due to a weakened core from undiagnosed diastasis recti after my second pregnancy. In March 2020 I felt pain under my right arm, did a self exam and didn't feel any lumps. In October I noticed my right nipple was retracting and there was a bit of dimpling. Performed self exam and felt lump under arm. I called my local breast center to schedule my first mammo - was unable to get an appointment until late January. 3 days before mammo, I learned I was pregnant. Couldn't perform mammo so had an ultrasound. They saw a highly suspicious mass in right breast (Bi-rads 5) and performed same day biopsy. 3 days later I began having a miscarriage. 2 days after that, I learned biopsy results - high grade IDC. I informed radiologist of back pain and spent the next two weeks having scans and a mammo which showed calcifications in left breast. I had a stereostatic biopsy which resulted in Dx of DCIS with micro invasion. Scans showed Mets to bones. Both DCIS and IDC are ER+ and PR+. DCIS Her2+ and IDC Her2-. Bone biopsy determined Mets is Her2-. Started Hormonal therapy on March 26 (monthly Eligard, + letrozole). Started Ibrance last night.
All of this has been a whirlwind and a huge shock. My parents divorced when I was young and I saw my dad once a year. I've met his sisters twice. I learned after my diagnosis that my paternal grandmother died of metastatic ovarian cancer at age 55. My aunts have had breast, endometrial, and cervical cancers. My genetic test showed no mutations.
I am staying hopeful that I will get to see my girls grow up and so hopeful they do not have to go through this. I’ve been reading the various threads for a couple of weeks now and am grateful to have found this community.
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((((SunshineDaydream)))) Sending you hugs. We're really sorry for all you have been going through, and glad you found us. Since you just started on Ibrance, you may want to check out this topic, if you haven't already: Ibrance.
We're here for you and message us Mods anytime.
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I'm back! So glad for this site and the helpful information. I was diagnosed with stage 3 ER + PR + bc in 2014. Only detectable on mammogram - which I never miss. Stage 3 because of size. I'm an MD, so when a pathologist friend stated that it looked aggressive and had broken the vascular plain, I decided to go full core press. Had a mastectomy (surgeon wanted to start with lumpectomy). Had lymph node mapping with 5 samples lymph nodes negative for cancer. Had chemo (mid range onco type and the oncologist left it up to me). Took my tamoxifen (never missed), went to all my follow ups, the last being February of this year where I was cleared for another year.
3 weeks later on my birthday in March, I had a blurriness develop in my right eye. Got in with a retinal specialist. I'm thinking retinal detachment- nope, choroid mass. He announces that I have a met and sends me to a ophthalmology oncologist. Down the rabbit hole. Now discover it's in the bones, lungs and maybe liver. Biopsy of a soft tissue mass near my breast bone condirmed ER +PR + mbc. I'm now on aromatase inhibitor, verzenio, zometa and radiation therapy to the eye.
I have to say that I was never counciled on symptoms of mbc, and obviously current screening practices are not sufficient. I'll have to discuss that with my oncologist- maybe it just doesn't matter at this point.
I have a number of friends who are long term survivors and I have no intention of letting this stop my enjoyment of life. Although I'm currently sipping dealcoholized wine and have started flossing again-so QOL def effected.
Fatigue, muscle aches, bone pain with zometa and lousy vision in my right eye- still spread 30 cu ft of mulch!
I'm holding out hope for CRISPR technology- hopefully they can rewrite my genome to cure the cancer and turn me into a 120 pound blond! Hang in there sisters, all is impermanence, water your seeds of joy!
Namas-cray - the crazy in me honors the crazy in you😂
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Hi, this is my first post. I thought I was in my prime at 37, running marathons and eating healthy until I felt a lump in my left breast and was diagnosed soon after. I have always been in control of my life and wanted to stay this way so I initially didn't get along with many doctors. I got so many opinions, it was exhausting to hear the doctors disagreeing with each other and even accusing each other of only pushing what they offer to their patients regardless of the benefit. It was such a terrifying experience. They recommended chemo due to my age although my Oncotype & Mammaprint didn't recommend the same. I followed the science which was difficult because my doctors didn't agree and I was taking full responsibility for my decisions. The reason I had to go against them is because I lost a sister to lupus when I was 12. She developed lupus during puberty and died at 14. I watched her suffer for 2 years. They tried the standard of care and it didn't work, then they tried everything else just because they didn't know what to do and her body fell apart. I didn't want to end up the same. I wanted to make sure that science supported my treatment decisions.
I decided to get a bilateral mastectomy which I later regret because my cancer recurred in the breast anyways. I asked my doctor how cancer can return in the breast if you don't have any breast tissue remaining. She said cancer cells don't need any breast tissue to grow!! I was dumb founded. Here I am thinking that removing all the breast tissue including the healthy breast will provide a safe guard. WTF is the point of bilateral mastectomies?! So the cancer comes back at all the scar areas which I later find out is common. Seems that we are driving in the dark and only seeing the red lights after we cross them.
When I had the recurrence I insist that my doctor order a new Oncotype because she is telling me I need to do chemo and we still haven't determined if I benefit from chemo this time. She refuses and I had to be aggressive to get her to cooperate. The Oncotype still didn't recommend chemo so I stayed the course on the hormone therapy and added targeted therapy plus I got an oophorectomy to make certain that I was in menopause. Some doctors believe that the medications won't achieve menopause so I didn't want to take that chance. I started the hunt for a new doctor and eventually found my current doctor which I am very happy with. It's so important to have a doctor you trust!
I recently had a recurrence, this time mets to my left femur which we found in a follow up scan since I don't feel pain. Since the bone mets is stable, my doctor did not recommend changing my treatment. I am due for another scan in 4 months.
I continue to run, but now I also bicycle, lift weights, eat healthier, drink a ton of water, stretch a lot and take better care of myself. I have one adult child which I had as a teenager. I feel lucky that I have the privilege of putting myself first since I don't have to care for another these days.
I've grown a lot in the last 5 years. Every morning I am thankful for waking up and breath in deeply to enjoy the sensation of my lungs expanding. I'm committed to this journey and prepared to face whatever life has in store for me, bring it!!
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Hi
I am new to this forum and would be grateful to chat to anyone on similar treatment.
I am 37 and was diagnosed straight to secondary breast cancer in March 21. It has spread to my bones mainly spine and ribs, liver and lungs.
Throughout January I suffered with back pain which gradually got worse, the doctor gave me pain killers for a pulled muscle. I then saw a chiropractor who thought I had a slipped disc. Eventually after 7 weeks of pain I went to A&E and that's where it all started.
I was told I also had lots of mini compression fractures in my spine which was probably causing all the back pain. When I went into A&E I could barely walk and the pain was unbearable.
I was told my cancer was ER positive so I have been put on Ribociclib, letrozole and zoladex. I am tolerating this treatment really well with little side effects. My first scan last week showed the tumours in the liver had started to shrink and my blood markers had also reduced dramatically. My oncologist was really pleased with the scan redults.
My next scan will be in 12 weeks so for now I continue on the treatment. I find it really hard to carry on with life not knowing if the medication is still doing the job. Has anyone else taken this combination? How long is it effective for?
I have 2 young children, 5 and 7 so this helps to keep me busy. I'm positive minded and am determined to see my little ones grow up!
Any tips for this journey would be greatly appreciated and would love to chat with others going through a similar journey.
X
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Hi Hamer1l, sorry you find yourself here.
I would recommend you join some of the super active threads for specific mets & treatments.
We have a liver mets thread https://community.breastcancer.org/forum/8/topics/...
Bone mets https://community.breastcancer.org/forum/8/topics/...
The ribociclib thread is here https://community.breastcancer.org/forum/8/topics/...
also feel free to jump into Mel's living room where we just hang out https://community.breastcancer.org/forum/163/topic...
hope to see you around
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Hammer1l, I’m so glad you found the group. moth and JavaJana gave you some great threads.
Would you mind putting your diagnosis in. Are you ILC or IDC? There are more With IDC on here, but I have ILC. I’m not on ribociclib, I’m on palbociclib (Ibrance) and Letrozole. I’ve been on it 24 cycles and have been stable but not no evidence of disease or NED, as they say. I hope to see you in the other groups.
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Hello Moth
Thank you very much for sending me the thread's, I will take a look.
Also thank you everyone for the warm welcome! It's great to be able to chat with others on a similar journey.
X
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Hi KBL
Thanks for your reply. To be honest I don't know if I am IDC or ILC. My oncologist has never mentioned it. He just said it is ER positive. I will certainly ask them on my next visit.
Great news that you have been stable for such a long time. I hope it continues for you.
How do you deal with things in between scans? Do you just put it to the back of your mind until the scan comes round?
I find it hard living life not knowing if my medication is still working. I know I had positive results on 1st scan but now I'm worried it will stop working and my 2nd scan won't be as good. My next scan is not due until August.
X
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I’ll private message you.
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Hello Hamer,
I’m 41 and was diagnosed with Stage IV de novo in February of this year. I also have two young children, ages 3 and 5, and am also determined to watch them grow up! Please send me a message anytime you would like to talk.
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Hamer - I am also in the UK, a and was diagnosed de novo at age 42 almost 2 years ago now. I also thought I had a disk problem... for almost 5 months! My combo is working great and holding everything stable and has promoted my primary tumor to shrink by about 40%. Some of the ladies on the ribociclib thread have had awesome responses, and it sounds like you are doing well also.
In living between scans well, at some point it will progress, but whether that is today or in four years who knows. In the meantime you can choose to either let it play on your mind constantly or let it go and live with the time the drugs are giving you. It takes time and, in some cases therapy or anti depressants, to get to a place of acceptance, so don't beat yourself up over it. Be sure to ask your GP or BCN if you think you will need some assistance in managing the anxiety.
Did you receive a letter from your breast clinic appt? That would have the further information on type (IDC/ILC etc), size and hormone markers. its helpful to pop in the signature line so others can see what you have going on and respond accordingly (and you won't have to constantly repeat yourself!). Sorry, looks like you went to A&E - not sure if someone sent A Letter somewhere and you would have received a copy? GP may know (depending on the quality of your GP).
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Hi SondraF
Thanks for your reply, it's great that you have been stable for so long. I have read some positive articles on ribociclib but it makes such a difference talking to people who are actually taking it and seeing results. My first scan showed it was working which was fantastic news, but now my head is doing overtime about the next scan and what the results might be and if ribociclib continues to work.
But as you say it's important to live in the time we have got. I think I will get there its just getting my head around everything. I don't know about you but I'm still in shock, before Christmas I was the healthiest and fittest I had been since the girls were born then suddenly this diagnosis totally out of the blue.
No I haven't had any letters in relation to my diagnosis, I was just told I was ER+ and these are the drugs you will go on. The next time I'm in I will certainly ask for more info.
What is the hormone marker? The last time I was in she mentioned the CA marker which she explained as an enzyme that is in the blood when there is cancer present. Is this the same thing?
Thanks x
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Hi everyone. I was diagnosed first with cervical cancer in 2010. I had a complete hysterectomy and oopherectomy. Whilst healing from the surgery, I felt a lump in my right breast. Went to the doctor - after biopsy, diagnosed with stage 2 breast cancer. Started chemo and then radiation. The two diagnosis were 3 months apart. I did the genetic testing but there was no correlation - just bad luck. I was 39. Two young boys. Fast forward to 2021, have had no health issues or anything - random pain sent me to ER where they thought I had appendicitis - what they found was something minor but the CT scan showed 2 nodules in my right lung. Since diagnosed with mets to lung. Had surgery last week - wedge resection on right lung to remove the two nodules and will be meeting oncologist next week to discuss treatment. Shocked would be a mild word for how I felt - I’m talking it a day at a time
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This is my first time back since 2016-17 when I originally treated for breast cancer. Of course I prayed that this would be the end of it for me. I had "clean" mammograms as recently as November 2020 but had been experiencing what I thought was sciatica pain for about a half a year. In April 2020, my pregnant daughter suffered from pre-eclampsia and our granddaughter was delivered at 25 weeks. With great care and commitment from the NICU staff and my daughter's commitment, after over 100 days in the hospital our dear granddaughter came home. She is our miracle baby. But at that time, I thought perhaps my pain was psychosomatic and was trying all kinds of meditation,yoga, ETC to manage 10 pain. Finally a pain management doc ordered an MRI for me with the idea that if it was ok, I could get a cortisone shot. That's when a sacral mass was discovered pushing on my spine. It looked like Metastatic Breast Cancer and after many tests (which I know you have gone through)my diagnosis was confirmed. I returned to the center I was treated at in 2016-17 and started radiation then faslodex and ibrance but my ambulation suffered and after a biopsy, I had become incontinent and had a Foley catheter inserted. After a fall in Feb2021, I went to the ER (had been there 3 times before for pain) and we decided to switch treatment to this hospital as they seemed to take my complaints more seriously. In fact they found that I needed neck surgery immediately and they insisted I stop bearing weight on my left foot because of impending fractures. I was in the hospital and then rehabilitation for about a month. On March 2nd I "celebrated" my 65th birthday in rehab. I learned to walk with "toe touch stepping on my left foot using a walker and I was taught intermittent self catheterization. I really thought that my life was over. But I am happy to say just 3 months later I am walking again (just use a cane outside) and I am in a PT bowel (yes troubles there too) and bladder program and am getting closer to more natural urination. I am on an antidepressant which just seems to be working. My granddaughter is the light of my life and don't think I mentioned my wonderful husband who has dedicated every minute to my care. Regular life with it's troubles continues and I realize they won't stop because of my illness but it has taught me a lot about what really matters in life and I have become determined to live as best as I can as long as I have.0 -
My story starts on 6 June 2020 when I was diagnosed with Multifocial IDC left breast had a mastacmy and 19 lymph nodes removed which where negative was told my cancer was er postive pros neg and her2 neg choose not to do chemo and go for hormones therapy was told margins where clear so no rads either. I started on tomoxifen and zoladex after going back and forth about chemo as my mother in law had breast cancer and took chemo told was cured but died within 4 years as it had spread all over I was convinced chemo had not helped so desided against it. I now think was bad choice and was problem already spread when she was diagnosed but they didn't do any scans to check. I don't think they explained anything properly to me. Anyway about 3 month after starting hormone treatment I started getting pain in arm so phoned breast nurse to tell her which she told me lymphedema and sent me for massage there was no swelling and didn't seem like lymph edema but didn't request a scan so then about 8 weeks ago my lymph noges swelled under right arm I knew straight away it was cancer but breast nurse said cos it was on opposite side I would need to be refurred again though my doctors this is so wrong but I did as they said but was going to have to wait 2 weeks to be seen so I paid to go private for biopsy which confirmed cancer then had ct scan which showed swollen lymph nodes both sides but still they needed another biopsy of left now before going forward I new was cancer but they did biopsy and ordered pet scan it was confirmed after 8 weeks of scans and biopsys that it was cancer and it was in both underarms and in middle lymph nodes under breast bone so I requested to see oncologist who told me she carnt cure me and just slow cancer down iam going to start treatment in 2 weeks of taxol chemo to see if it will help. My question is many people on here have not been stage 4 until its in a organ or bones brain etc is it right what they are telling me? My bone scan was clear and pet scan only showed lymph nodes just would like some advice from people going through similar things I am grade 3 er postive pros neg her2 but oncologist is saying we need to treat it as triple neg as only weakly postive I scored 4 on scale out of 8 thanks
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Touchedbyanangel- I'm so sorry you've had such a rough road for the last year. The waiting for appts and scans and results is so frustrating when you just want answers! I don't know the answers to your questions - others may chime in on that, but I suggest a second opinion, preferably at a major (NCCN) cancer center, if possible. Even if they just concur with your current treatment plan, you'll have peace of mind that you're on the right path.
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I'll chime in with my story. A lump was found in my breast through mammogram on February 3, 2016 (my 26th wedding anniversary). After our anniversary trip to Hawaii, it was time to get started with treatment. Lumpectomy in April, high Onca score brought me to Chemo and then radiation. All was well after that. In October of 2020 I had a stiffness in my neck. My friend gave me a quick friendly neck massage and noticed the lumps on my neck. How clueless was I??? Anyway...tests revealed mets in several places in my bones, liver, lungs...and...get this...my eye. I started taking Femera and Verzenio and have responded very well to the meds. Aside from some Verzenio side effects I'm living life pretty normally right now. I am involved in my church, work out 1-2 hours every morning, Kayak at least once a week, hike, travel...even during COVID...and have a lot of gatherings with friends and family. My husband and I decided just to continue to make the most out of life like we have always done. Stage 4 BC is the ultimate test of dealing with being totally out of control!! I really have a sense of peace about my future but obviously struggle a bit with not knowing how much future of have left. it is what is is!! Life is good!!
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I was asked by my sister to share my story with her company during their Breast Cancer Awareness activities. Here is a link to my interview. I hope it helps and maybe inspires others.
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Thank you for this.
It was decided I was not metastatic after all. Then just two weeks ago, it has been reversed again and I am about to start Ibrance and Letrosole. Thank you for the encouraging words. Hoping you are well.
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Thank you. Thank you.
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