Best Of
Re: How long have you been Stage IV?
2001 - divorced after 27 years and moved to Florida home built in 2000 where I worked.
ER PR +
December 2003 - mammogram. Told nothing concerning. Reviewed doctor notes after diagnosis in 2004 and there were “calcifications but nothing to suggest malignancy.” I wasn’t told this by radiologist.
July 2004 - 53 years old. 2.5 cm tumor right breast discovered on self exam. Used estrogen / progesterone patch for 1.5 years which was immediately stopped by surgeon. Lumpectomy and brachytherapy (not a picnic but shorter treatment and I needed to get back to work). 4 lymph nodes removed. Opted out of chemo even though recommended by surgeon and oncologist. Started with eximestane and Celebrex in clinical trial. Celebrex taken off market so switched to tamoxifen. Used vagifem tablets for vaginal dryness for a few years.
2006 - 7 mm tumor on tail of right breast. Lumpectomy (2x because margin not clean), chemo, 8 treatments with IV without hair loss, beam radiation for a couple of weeks, twice a day with lower dose.
Followed by oncologist and CT scans every six months at major cancer center.
Mom passed away from Alzheimer’s.
2006 - moved from Florida back to Midwest. Built new home in 2007. Started new job. Switched jobs in 2008 and commuted 60 miles one way and traveled several times a year for meetings.
2010 - tamoxifen stopped by oncologist (dismissed). No medication.
Dad passed away from old age at 92.
Nov 2012 - son had serious accident in NYC, hospitalized for eight months, transferred to Midwest after 1.5 months in NY, and moved home on HCBS waiver in August 2013. Lots of trips to NY and Mayo Clinic, and rehab facility. Complex and stressful time.
Dec 2014- self exam-nipple pink with erythema and tenderness. Mammogram and ultrasound. Radiologist diagnosis was sebaceous cyst. Surgeon (new) did not biopsy, and I did not see oncologist on that visit. Big mistake!
July 2015 - self exam-skin puckering and orange peel look on entire underside of breast with oozing from lumpectomy scar at bottom breast crease. Mammogram, ultrasound, biopsies (cancer), fine needle aspiration of enlarged distant lymph node (adenocarcinoma) left side, lymphadenopathy in lungs on left, mastectomy, heavy duty chemo with loss of all hair). Tumor encompassed 10 cm with skin invasion and Grade III. (That’s some cyst!) Still working in fairly stressful job. Led board retreat in another state 2 weeks after mastectomy and continued as CEO with lots of events and responsibilities and public meetings. Wore caps, wigs, and “hats with hair.”
Letrozole for 5 years max with 3-6 month CT scans (with contrast- meaning IV) and oncologist/surgeon appointments.
2016 - retired, but worked part time until 70, built accessible home with apartment for disabled son in 2020-21, got through COVID, and switched to local oncologist in 2019 at major cancer center. Continuous advocacy for son, insurance company battles, caregiver management, etc. Stuck at home because I was evening and overnight caregiver for several years until 24/7 care was authorized.
2020 - CT and MRI showed hepatic metastasis with 1 cm largest tumor and 7 mm Mets on spine. Stopped letrozole. Switched to IBRANCE, Xgeva (for bones), and monthly fulvestrant injections and blood draws. Switched to Verzenio 100 mg because of abnormal liver enzymes and eventually to 50 mg twice a day.
CT scans and oncologist visits every three months that continue to this day.
2021 - osteonecrosis of the jaw on left lower area which is side effect of Xgeva. Stopped Xgeva. Doctor consults, antibiotics for 2 months, and ended up seeing oral surgeon monthly for 8 months who eventually was able to pull out dead bone in two pieces.
2022 - I was cleaning a crab leg during a visit from my daughter at thanksgiving when my left hand was poked. Not sure if this was the cause, but very shortly thereafter I was stricken with lymphedema in my right arm after 18 years! Lymphedema is no fun. It is time consuming to treat, a chronic condition, and weakens the arm. One must wear a sleeve almost 24 hours a day and visit a PT regularly for treatment and sleeve replacements. I can still use my arm for gardening, reaching and doing crafts, but forget bowling, golfing, or lifting heavy objects. I sometimes think it is worse than cancer.
2025 - it’s been a long journey. I’ve had great support from medical team, family and friends and try to live every day in peace. Today, my son’s care is well established, although it still seems to be a moving target, especially now. I find joy in gardening, being there for those who need help, and going through the motions of my treatment, not burdening others with my situation or thinking about it very much. My oldest brother and sister in law have been particularly kind and supportive for which I am immensely grateful.
I’m so happy to be alive today after 21 years and 10 years MBC. I find myself thinking about recurrence now since I’ve been on fulvestrant and a CDK/4 inhibitor for 57 months. The hepatic tumor has shrunk (as did the lymph node and lymphadenopathy after chemo), so I’m hopeful. My lungs are damaged from surgery, cancer and radiation. I was athletic all my life, so it’s tough to get winded just walking up a slight incline from my garden. I was unable to have reconstruction because of skin involvement and it’s not fun having to wear special bras and a prosthesis which I have to maintain. And the lymphedema sleeves and continuous treatment is not fun. I hate the monthly blood draws and IVs every three months. I had an IV infiltration when contrast was given and that hurt so much I was in tears.
This summary of my experience with breast cancer is merely a summary. There are many more intricacies to this journey, and I congratulate and love everyone on this page who is battling this along side me.
I do miss my beautiful cleavage, thicker hair, and the sexuality I had before having all the estrogen sucked out of me. But, I’m alive and here to help my son who is suffering so much more than me. Thank you for reading this. I hope it sheds a bright light on the fact that MBS is survivable and definitely makes one more alive and definitely stronger.
Re: How long have you been Stage IV?
@livinglifenow thanks for the info. I will ask my oncologist about the signatera. I still have scattered hepatic metastasis and one tumor that has shrunk to .5 cm and a small Mets of 7 mm on spine. I guess I’m not at NED yet. I get CT scans every 3 months with contrast. I had an MRI in 2020 to definitively diagnose liver metastasis. I’ve had one PET scan and bone scan several years ago. Blood work is always abnormal, although normal for me-ha! I couldn’t believe I metastasized again in 2020. The 2015 could have been avoided if I had the right diagnosis when I first noticed my breast seemed different. The treatment was brutal. It’s nice to come here periodically as most people don’t understand what it’s like to be living with MBC. Thanks, again. Love and hugs from me to you and continued good health and peace. Mary
Re: STEAM ROOM FOR ANGER
Thanks for this thread. I have nowhere else to get out my anger and sorrow over my husband's behavior and I really need to do that right now.
My hearing has been deteriorating over the past few years, resulting in my avoiding social situations because of the embarrassment of not understanding what people are saying combined with my sensitivity over significantly thinned hair. I considered hearing aids, but didn't want to spend the money, as I expected to die soon (I've been stage IV for 40 months). Other than my husband, family and friends do not know about the cancer.
Finally got hearing aids at Costco yesterday and was wearing them when my son and daughter in law stopped by. My daughter in law commented on the hearing aids and I asked if she could see them. She said "sure, when you turn around".
That's when I realized that I don't have enough hair to conceal even small hearing aids.
After they left I told my husband how sad her comment made me and he said "Why don't you grow more hair?" I told him that I would love to do that, but I'd have to stop Kisqali and Faslodex for that to happen. He shrugged and walked away. I hate him.
Hearing aids are going back tomorrow. Wish there was a place I could return him for a refund.
eleanora
Re: I say YES. YOU say NO....Numero Tre! Enjoy!
We are terribly saddened to hear about Illinoislady's passing. Thank you @betrayal for sharing this update.
We've added Illinoislady (Jackie) to our In Memoriam thread. Jackie has been such an integral part of our community here; she will be very greatly missed. Sending gentle hugs and wishes of comfort to all of her friends and family.
Re: I say YES. YOU say NO....Numero Tre! Enjoy!
In memory of Jackie:
“Like a bird singing in the rain, let grateful memories survive in a time of sorrow.” – Robert Louis Stevenson
betrayal
Re: Ibrance (Palbociclib)
After persistently telling my Oncologist I was feeling some activity in my left breast, where my tumours were found at metastatis in 2020, I opted to get a breast surgeon to give me a referral for a mammogram and Ultrasound. I was right coz they discovered a 0.5cm lesion. Upon further investigation via an MRI, three more wre seen, in the same breast, plus the original 3 metastases lesions originally seen in the liver, and which PET-SCANS of 2024, and April 2025 did not see. So I guess a biopsy is next. I'll know for sure when I discuss this outcome with the Oncologist plus a second opinion.
The moral of my story......always follow your gut instinct. And if the doctor of whatever specialisation isn't listening, go to someone who will listen. Having said that, I really wonder if doctors ever stop to listen to their patients?? Do they know how to listen when the patient, the owner of the body they are treating, actually opens their mouth to speak? Is there any part of their training that teaches them to listen? Or do they all have tunnel vision? Too often, they outrightly dismiss a development that cannot be explained by their book learning or personal experience with other patients. FYI, im good, I'm moving on to the next treatment step. I've no anger because this happens anyway. Medications do stop being effective at some point. Anyone want to comment?
Will update you
Re: Ribociclib/Kisqali with Letrozole - Any one on this combo?
Thanks for giving me hope.
I am on Kisqali/Faslodex/Xgeva and like you, I seem to have no SEs from Xgeva. I also do not have a port and have "difficult" veins. I see that you were also on Zometa. How long ago did you switch to Xgeva? I have been getting it every 4 weeks for 3 years and based on a study I found comparing the effectiveness of dosing at 4 weeks, 8 weeks and 12 weeks, I will be switching to 8 week dosing next month with my MO's approval. My concern is the ONJ potential.
Keep on keeping on!
Eleanora
eleanora
Re: Can we have a forum for "older" people with bc?
Thanks to Sandy, I found my original post :
Hi Sandy,
I’ve been following your fire and move and very soon move back, on “Older Women…” But life has intervened. I started to fall on Fathers Day, slammed into the dining room table, very shaken up.It turned out I had a compression fracture on T6. But it’s a pathologic fracture. After numerous scans, MRI, and a tortuous bone biopsy, I have a metastasis to T6 . But, of course, it’s complicated. All the cells in the biopsy were necrotic- no breast cancer cells. Dr. M believes the bone was seeded from the get go in 2019, that Arimidex killed the cells, but not before they ate away at the bone. All scans were clear except for MRI which lit up at T6. There could perhaps be a cell or two floating around somewhere and his assumption is that they would be BC cells because there’s nothing else on the scans.His plan: 10 sessions of radiation to T6 to help the fracture heal and to clear the surrounding area, Letrozole which I dread, dread, dread and a Zometa infusion every 3 months.
I obviously hate that this has happened. Have been in a state of terror. Dr. M is optimistic and encouraging , states that I will live as long as my cohort of 91 year old women and wrote in the aftervisit summary, “ I offered that overall survival for several years after diagnosis of breast cancer metastatic to bones isanticipated.”
Re: Can we have a forum for "older" people with bc?
Thank you Sandy.But the question is “Do I want to make it to a 100?” Depends( no pun.) I’ve been unable to find my post.Couldn’t remember it was Side Effects. Wanted to repost it here. Started my first Letrozole, Arimidex was before, much trepidation, thrown back into the horror of being diagnosed in 2019,but doing better now with a plan. Radiation Oncologist did say that to take Letrozole and have radiation was like wearing a belt and suspenders, but that’s what Dr. M says to do when and I’m still at 91 basically a good girl, though a saddened one at this stage 4 diagnosis.
Re: Nervous about switch from Letrozole to Exemestane
great discussions. I’m having a heck of a time with Letrozole and only 6 months on it. Symptoms are getting worse and not manageable. I see my med onc Aug 20 and will see about switching.
