Would you share your Stage IV story with us?
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- 29 years ago, age 34, I was diagnosed with stage 2 cancer, ER+ PR+. Did CMF, radiation and Tamoxifen for 5 years. 10 years later, had a recurrence/new disease (could never get a straight answer) in same exact spot of same breast. The radiologist had read my mammogram as clean but BS went over it with a magnifying glass and found spots he felt were suspicious. Had biopsy, confirming cancer, then right mastectomy, with multiple attempts at breast reconstruction which were never right. No chemo at that time and followed with MO for 5 years. Fast forward to July 2019, had what I thought was bronchitis, treated with 2 different antibiotics, never got better. Went to ER when I was having problems breathing, admitted to hospital with pleural effusion, removed 750 ml of fluid. Testing of fluid confirmed breast cancer cells. Scans showed nodules in lungs and mets to sternum. MBC it is. This happened 2 weeks before we moved from Ohio to Wisconsin. Was able to see a local MO before we moved and he did a full work up in a short time so I would have test results to take to new MO. Found a great MO at Carbone Cancer Center at UW Madison. Neither my husband (an OB-GYN) or I had any idea that my highly hormone positive cancer from 29 years ago could return as metastatic. I had regular yearly mammograms, even saw a MO a few years back for genetic testing, saw my PCP every 6 months and was never told about the possibility. Just finishing first round of Ibrance/Femera and trying to organize a home we moved into 2 weeks ago that is 2400 sq ft smaller than the house we moved from. On top of that I have severe degenerative arthritis in feet, hands, knees, shoulders and lower back w/severe adult onset scoliosis that has left me limited in what I can do. But I pace myself - putz around for 15 mins and rest for 15 mins. Repeat over and over. Life is good considering the options!
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GoldensRBest, I enjoyed reading your story. My stage IV was found because of a pleural effusion, too. I had it drained six times, probably just diagnostic. No cancer cells were ever found in the fluid. I do have lung nodules that grow very slowly. The effusion disappeared on Ibrance and Femera within the first few months. There is a very good Ibrance thread that you could check out. I did see your IV starting problem and wonder if you could get a port now. I have had mine for 5+ years and it is used for EVERYTHING. So worth it. Maybe you could ask your MO if a port would be ok'd by your insurance. Worth a try. It's really not a big deal to have it put in. I really wish medical providers didn't think torture was part of their job description. Let them know that the stress from anything involving an IV is harming your quality of life to the extreme. They have to listen. Make them listen.
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Wow, that is one of the most impactful stories that I have read on any support group page. I will be having a bilateral mastectomy in Nov 2019. I have two cancers in my left breast, dcis, idc -1. I have decided to do this for exactly the reasons you spoke of. I want to live with joy, without worry.Happy. I hope this message finds you and your family well. Just know that your story has given me the courage to stand up and fight! Find joy in every day. May peace be with you and your family, and thank you for your story and inspiration.0
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dear labyrinth, I am afraid having mastectomy is not a guarantee it will not return. Nothing is.
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Agree! Diagnosed 6 yrs ago, stagev1 ILC. Bilateral mastectomy, hormone treatment. 7% chance of recurrence. Prognosis looks great!. Fast forward 6 yrs and I am now stage 4, MBC. My cancer returned in lymph nodes in my neck and chest, and my left pec muscle. I am 3 rounds in on chemo. So much forv7% chance of recurrence....
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At age 40, I had a mastectomy with implant reconstruction for extensive DCIS in my left breast. That was almost 22 years ago. In June of this year, I had my annual mammogram, which was normal, as well as a normal ultrasound to investigate a lumpy area in my right breast. Last July, I developed some weird back pain, which has not disappeared, although the intensity varies week to week. An abnormal x-ray led to a bone scan and then a thoracic MRI, which showed widespread ("innumerable") metastatic bony lesions, including a tumour at T10 pressing on my spinal canal and causing a fracture. A later CT scan also showed lesions in my pelvic bones.
So the search was on for the primary cancer. In the interim, I was sent to a neurosurgeon to discuss the T10 lesion. Sometime soon, I'll be receiving radiation, and then undergoing surgery if necessary. Because of my DCIS history, I saw a surgical oncologist, who ordered a breast MRI, which showed multiple suspicious lesions. I had a breast biopsy after that, and although the oncologist is still waiting for the final pathology report, she learned from the pathology team that I have invasive lobular carcinoma. She called me right away to tell me. This was 2 days ago.
I will be meeting with a medical oncologist in the next week or two to discuss systemic treatment and radiation.
It takes so long to tell this story, and I've left so much out -- including my emotions surrounding all this. I am fearful, disbelieving, and amazed. Grateful to have clarity. Afraid to think that this is the best I will be. Medical questions are being answered, at least. They are replaced by the existential ones.
Thanks for listening and for being here. I have already learned so much from all of you.
Jody
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Jody - so sorry you are going through this. ILC is a sneaky sucker and goes wherever it wants. For me, neck and chest.
I am in treatment and hopeful. We do another CT and PET on 12/2 to see if the chemo is working. We know tumors are shrinking, but is it enough?
I do my best to stay beat, but there are days I just get mad!
I am around if you want to vent@
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JodyJ, we are here for you and routing for you through your next treatment. Thank you for being open and keeping us posted.
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vbishop, thanks for your response. I love reading your words "I am in treatment and hopeful." Not yet in treatment, but I may adopt that as my mantra.
Mods, thanks for your support! This forum is helping to keep me sane.
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We are so happy to be here with and for Everyone
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Let's keep on touch, Jody! We are both ILC ladies. Which puts us in the minority. ILC behaves differently, not as much research done for us, but improving. Regardless, we are in this fight together. I dont plan on going anywhere anytime soon. My main mantra? Keep dancing!
I dance while I wait on lab results to start chemo. I'd dance during chemo if they weren't icing my feet and hands (to help prevent neuropathy). People look at me weird, but I dont care. Dancing makes me happy
Check out my blog ..
It might help. https://vjbishop.blogspot.com
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In July 2008, a 2.5 cm tumor was found during my mammogram in my left breast. I had a mastectomy with flap reconstruction two weeks later, followed by four rounds of TC chemo two months later. I began the normal follow-up - tamoxifen, then aromasin. At my gynecologist's suggestion, I had a prophylactic oophorectomy in December 2010; to everyone's surprise, microscopic evidence of cancer was found in my ovaries. Thus began my Stage IV journey. After a series of scans, almost joining a clinical trial due to a misdiagnosis of a hemangioma on my skull (one radiologist said it was a lesion), I started on monthly injections of Fulvestrant. Boy did they hurt - but they kept the cancer under control for over 5 years, and with every one of those - please pardon my language but it's the only way to describe them - motherf#$%!*ing needles, I vowed I'd take them forever if they did the job. In 2016, spots showed up on my spine, and a biopsy revealed that the breast cancer had spread. This began my experimentation with treatment after treatment - Xeloda, Ibrance, Afinitor, and then the chemos - eribulin, gemcetabine, vinorelbine, doxil, liposomal doxirubicin, and brings me to where I am today. I have been extremely fortunate in several aspects of this illness. First of all, I love and implicitly trust my oncologist. He is at the top of the field, is always honest with me, and will refer to for any consultation I request. I have tolerated most treatments fairly well, given what I have read on this and other forums. And I am still working - I didn't begin to experience cancer-related symptoms until late 2017. I have had two brief hospitalizations due to ascites and partial bowel obstructions (the cancer is growing on the outside of my small intestine), and 4 paracenteses to drain fluid. I am currently on a 4 week medical leave - the longest since my chemo in 2008, but it is my intention to go back to work after Thanksgiving. I am a teacher, and my work is so important to me - it's the hardest job I've ever had (I became a teacher two years before I was diagnosed, at age 46), but the one that keeps me going.
I know my cancer is getting ever more serious, but I want to live - every day - I have a lot more to do. I'm so glad I found this forum.
Thanks for listening.
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wmukluk -
Thank you for sharing your journey! So inspiring! ILC is such a sneaky sucker, but you have shown it who is boss for several years now. I hope I can follow in your footsteps. I've just started down the MBC path, so it is comforting to see you continuing the battle.
I love your spirit, your grit, and your determination!
Good luck heading back to work. I am sure your students are looking forward to your return. Keep in touch!
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About 18 months ago at a staff meeting, a colleague described her recent experience with an early stage breast cancer and subsequent treatment. She urged everyone to get a yearly mammogram.
I had no concerns as I considered myself low risk – no family history, late puberty, early pregnancies and I breastfed my two children. It had been awhile since my last mammo, but my colleague's story prompted me to schedule an appointment.
Long, long story short: I was diagnosed with lobular breast cancer with innumerable mets to the bones at age 49. This was only after having a unilateral mastectomy with plans for a port and chemo. After the mastectomy, a CT scan was ordered and the mets were found. I have the privilege of being "De Novo". Why do they not scan before surgery? After the mets were discovered, plans changed to treat with hormone therapy. I feel ambivalent about the mastectomy because I no longer have a site for measurable disease, but on the other hand the "mother ship" has been eradicated.
There was the no-brainier oophorectomy, and Ibrance and letrozole along with monthly Xgeva as the first line treatment. It has been about 15 months of this medication regimen. Since that time I lost more than 50% of my hair – it is so thin! Other than that, my life has been pretty much the same. I work full time, no aches or pains from the mets or meds, same ups and downs of life, only now I have this to contend with.
Reading others stories here really helps. Thank you.
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I have Lobular, diagnosed as stage 1a yrs ago. Diagnosed with mets in lymph nodes in neck, 6 yrs from original diagnosis. Location of tumors is the concern for me. Doing chemo now, tumors are shrinking, lobularvisxa sneaky sucker ....
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My name is Meme and I am 54 years old. I have been battling breast cancer off and on for more than 15 years. I had two mastectomies and my ovaries and a lobe of my lung removed. I went through chemo twice and had lots of other treatments. I had 7 1/2 years of remission after the metastasis, which is a miracle. In 2017, the cancer reemerged in my spine and lungs. I underwent radiation and started on a hormonal therapy. That has stopped working and the cancer has spread further. I am now on oral chemotherapy (Xeloda). At this point, the oncologist says that slowing the progression is the best hope. I am handling this well, with just a bit of fatigue and a rash. I do not yet know if the treatment is working - waiting on the scan. I know the prognosis is not good and I am coming to terms with that.
I count myself as one of the luckiest people in the world, even given these challenges. I married my soul mate and have loved him deeply for over 30 years. I have the two most amazing sons in the world and I am immensely proud of the men they have become. I have siblings and parents who would do anything for me. And I have reliable friends at the ready to help. I have had exactly the career I wanted and have achieved my goals. My colleagues have become some of my closest pals. Given all of this, I am at peace with the inevitability of what will come. My goal is to handle this next phase with grace.I hope my story will provide hope for women who have recently learned they have metastatic disease. It is possible to continue on for years with this miserable disease, while loving and living well
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All you women here are really amazing, and we greatly appreciate you sharing your stories with others here.
As the newest poster here, Meme123, we welcome you too warmly to our community, and appreciate you sharing your personal story with us here.
We hope you all continue to find much love, support and effective medical treatments in this new year, and that you connect with others in our community.
Gentle hugs,
The Mods0 -
I'm new to all this my name is Lisa and I'm from Ireland 🇮🇪 I'm married with three adorable kids who were only 5 ,7 and 9 when I was diagnosed at the age of 37 ....
I was originally diagnosed with stage three grade 3 breast cancer 7.5 cm in the left breast .I was sent for ct and bone scan which I was told were all clear so I had surgery left side full breast removed and ten nodes removed three of which were positive .
In November 2013 I had ovaries removed and tubes to try stop this fecker coming back
Did six months of chemo and 12 months herceptin then 4 years tamoxifen as I was having pain in my back so had mri .Results showed stage four multiple mets to my spine ,pelvis ,ribs ,shoulder ,chest wall one cm in the liver and adrenal glands. So stopped tamoxifen as it wasn't working .
I'm currently 43 and have been stage four for nearly two years I'm on constant treatment two weeks in a week off with chemo have herceptin every three weeks and get zometa every three months since 2015
My kids are now 12,14,17 and I plan on going nowhere for a long time yet love to all
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wanting to ask the same question I’m 2 years stage four nets to spine pelvis ribs shoulder collar bone liver and adrenal glands
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Dear Lockey,
Welcome to the BCO community. Thank you so much for sharing your story. We know that it means a great deal to members old and new who frequent these discussion boards. We hope that you will get connected and stay active here and enjoy the support that is readily offered by our wonderful members. Please let us know if there is anything we can do to help you to navigate your way around. We look forward to seeing you.
The Mods
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I'm Elizabeth, I'm 42. In February of 2018 I was diagnosed with stage 2 grade 2 IDC with 1 of 3 positive lymph nodes. I had a lumpectomy and did 4 infusions of Taxotere/Cytoxan which was a rough go for me. I ended up hospitalized with neutropenic fevers twice during that time. I did 28 rounds of radiation treatment to the breast and thought that by the end of September 2018 I had made it and was done with cancer. I started on Tamoxifen but by February of 2019 had quit because I just couldn't take the emotional lability and brain fog. I'm a critical care nurse and it was having too much of an impact on my job to try and function like that. By all expectations my treatment was successful and I had a low risk of recurrence so my doctor and I both felt comfortable staying off of the Tamoxifen.
In October of 2019 I developed hip pain and at the time thought I had pulled my groin muscle or perhaps a labral tear moving wrong or overdoing it in my yard work. By mid November it had progressed to not being able to weight bear and my oncologist ordered an MRI which showed a large lesion encompassing the entire femoral neck, a smaller lesion in the sacrum and one at T8. On December 7th I was diagnosed with MBC and had an IM nailing to the right femoral neck and shaft to prevent fracture. I just finished 10 sessions of radiation to T8 and the right hip and a bone biopsy of the sacrum has revealed this is in fact the same breast cancer, with the same receptors as before. I am still reeling from all of it.
Last week I did my first injection of Falsodex and Xgeva and will begin Verzenio as soon as it arrives in the mail. I think when stage IV gets diagnosed it's probably natural to freak out a little, and I did. I'm learning, through this community, that this is not the end of my life. I'm committed to trying to live my life as fully and functionally as possible for the time that I have. I still have hope that a cure will come. In the mean time I am trying to focus on the positive and roll with the major life changes being thrown my way. I may not be able to return to bedside nursing, which I love, and the physical challenges and changes I have had are the ones I find most frustrating and the easiest to be discouraged over. Still, I have faith, good friends and family to support me through this so in the end I still count my blessings.
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emac, I am wondering why your team hasn't considered Ibrance. To me, it has a better side effect profile. Verzenio comes with a free bottle of Imodium. D seems to be a very consistent problem. I've always had an issue with D so have avoided Verzenio. Something you might want to consider.
I "enjoyed" reading your story as much as that is possible. I hope your next steps go smoothly. Stick around BCO. You will get tons of info and support here.
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Jaycee49 - my oncologist had considered both the Ibrance and the Kisquali and they are still on the table as options for me if Verzenio doesn't work. In 2018 when I did the Taxotere/Cytoxan regimen I had a horrible time being immunocompromised from those drugs. My ANC was zero on more than one occasion and I was hospitalized twice with neutropenic fevers. She felt that the Verzenio would be easier on my immune system than the Ibrance so as a precaution, given my history, she chose to go with that.
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emac, I did see that about your fevers on another thread. That makes sense, then. I have huge problems with diarrhea so I stay away from meds that cause that. If you do get Verzenio, hang on to the free Imodium. That stuff has gotten expensive.
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Thank you. I will ask about that. I'm 5 days in to the 150 mg dose twice a day and so far so good. I don't seem to have any unpleasant side effects to date.
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I’m living with mbc for a little over 2 years now. 17 years cancer free. Mets to Spine, hips, both arms, liver, and rt. lung. I was taking Kisqali, however my wbc is not letting me. Faslodex 500mg monthly and Zometa . I’m 64 and feel like a train had its way with me. I accidentally got on the site for young mbc and they have young kids and work full time. What is wrong with me? I was feeling sorry for me until I read there stories. So I have decided to put my big girl panties on and move forward. I just want to live without pain and not have people feeling sorry for me. I’m strong enough and a retired RN. I hope to hear from anyone else who has mostly bad days. Thanks Lesli
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Welcome, Leslie45. We're so sorry you find yourself here, but we're so very glad you've joined our community and shared your story. There's no right or wrong way to feel about this, and your feelings are valid. We're all here for you as you continue on this journey!
The Mods
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JavaJana, sorry you are joining this group, we're sending loads of hugs to you! Hope treatment stops any progression and is kind to you. And please remember you're not alone in this wonderful Community, we're all here for you!
Best wishes,
From the Mods
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Hello.
My mom has breast cancer that has spread to her liver. Her onco advised her to take Xeloda which has a relatively mild side effects after two cycles. However, I cannot help but notice that she is getting more bloated and the right part of her abdomen (I am presuming it is her liver becomes stiff to touch. Is it normal to have that side effect?
With the lockdowns easing in our place, the onco decided to switch treatments to IV chemotherapy which is taxotere.
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