What stage were you before you found out you were MBC?

[connect222]

Did anyone go from stage 1 to directly to MBC?

[Aimee95]

Me!!! I had 5 negative mammograms starting at age 40....I skipped the 6th year because my appointment was on a holiday... I had the day off and thought big deal...I am fine. That was Feb 2018 fast forward a few months to May 2018 I felt a huge lump in my right breast. My gynecologist and the breast clinic both said it grew too big and too fast for it to be cancer and likely just a fluid filled cyst. Biopsy said Stage 1 IDC no big deal...breast MRI was fine too. I was going to be proactive and opted for Double mastectomy. The surgeon ordered a chest x-ray for pre op and thought insurance would deny it but thankfully they approved it. Got a call at 7am the following day from surgeon and said "my dear we have a problem.....you are not stage 1 you are actually stage 4....your lungs are full of cancer. We were all stunned. How could it grow so fast and out of control?!? They gave me 1 1/2 to 3 yrs...5 at the most. But here I am....3 yrs later still on 1st line of treatment with stable scans and some cancer is resolved. Feel very very lucky! Hugs to you!!

[Hidden in reply to Aimee95]

Hi, I was diagnosed with de novo metastatic breast cancer in Feb 2021. I had a normal annual mammogram in August but developed severe pains in my arms, chest and back in mid December 2020. I had no palpable lump in my breast but a scan showed that I had extensive bone mets throughout my spine, sternum, pelvis, ribs scapulars and skull. I went from feeling fine to Stage 4 in 6 weeks. It was an enormous shock. A mammogram showed a 3 cm tumors in my left breast. I’m now on Ibrance and Arimidex and getting used to my “new normal.” I find great strength from all the ladies here and hearing about their experiences gives me hope.

[Iwasborntodothis in reply to Aimee95]

Very similar story here little bump and a diagnosis of bronchitis to Boom stage 4 spread to lungs after years of mammograms and my sister’s testing showing no hereditary factors. Glad for this group and modern medicine now almost 2 years in.

[hopenowandtomorrow]

Stage IIIA only 2.5 years after my original extensive surgery, Chemo, radiation I was Dx with MBC.

[Topood]

I had Stage 2 or 3 Breast Cancer in 1995, then was declared cancer-free after chemo, and lived that way for 23 years until I got my diagnosis of MBC in 2018.

[connect222 in reply to Topood]

can i ask if you got a mastectomy in 1995? or a lumpectomy?

[Topood in reply to connect222]

Sure! I had a full mastectomy on my right side....and it was the lymph nodes on my right side that led me to discover that I had MBC in 2018. Without them I think it all would have been much worse....I wouldn’t have noticed anything for months more, probably....so I’m weirdly grateful to them!

[connect222 in reply to Topood]

how did the lymph nodes on your right side led you to know that you got MBC? i don't understand.

[Beryl71 in reply to Topood]

Similar to you 26 years thinking I'd got away with it, then a few niggly symptoms and chest x-ray for a bony chest lump. The seemingly impossibly had happened. They said it could have been spreading slowly for ages. Nothing showed in mammogram. Even the mammary lymph nodes.

[Shelly1009]

Stage IIIA in Fall 2016 with invasive lobular. Mastectomy, chemo, radiation, reconstruction and then declared cancer free. Spent the next 3 years complaining about abdominal pain and was finally diagnosed with MBC with mets to my peritoneum in Feb 2020. Pretty sure it was stage 4 from the start as I'd been dealing with abdominal pain prior to my first diagnosis.

[Topood]

They were swollen, as was a node right above my right clavicle. They’ve been a good indicator for me throughout....while Ibrance was working they became smaller, then when it stopped working they grew again, right in my right arm pit. Now I’m on Xeloda, and it’s working (I am so relieved, it’s my 5th treatment!) and I can barely feel them...they’ve been gradually shrinking since November.

[Bettybuckets in reply to Topood]

How much time do most women get onc Xerox?

[Fpmeehan]

Was diagnosed with lobular carcinoma in-situ in my early 30s (no stage) and was advised to keep a close watch on it. Several years later, two guy doctors said that it was past the time for it to develop into cancer. WRONG!

I stopped being concerned about it and went about my normal business, then BOOM my back cracked when I fell into a deep hole while hiking. The pain specialist ordered an x-ray and more diagnostics. A biopsy of my hip bone after a PET scan determined stage 4 breast cancer with mets to my spine and hip bones.

At that point, I needed emergency surgery to remove two lumbar discs that had eroded due to the cancer. I could’ve been a quadriplegic had I not fallen and seen a doctor. So grateful for the effective targeted hormone therapy that’s kept the cancer from spreading for nearly seven years now.

[Bettybuckets in reply to Fpmeehan]

Please tell me more! Sounds like me. My dr told me I could be a quad... so whT did you do to avoid for 7 years?

[Topood in reply to Bettybuckets]

It’s different for everyone. I have a cancer that seems to change quickly so that treatments become useless and I have to change treatments pretty often...not good. But I think many people stay on Xeloda for years! I hope my pattern changes and that I am one of them!!!

[Bettybuckets in reply to Topood]

Thank you Snd may it continue to work for you

[SunshineBoss]

I was at my fifth year marker for being cancer free when I went to the emergency room. I thought I was having a heart attack. It took the doctors four months to figure out what was wrong with me. I had cancer in 80% of my bone marrow. I went from feeling great to barely being able to get out of the chair. This was in 2019. I’m doing great on Ibrance and faslodex. Praying it will continue for more years to come. ❤️

[debbiedo2063]

Stage 2 lumpectomy 2012, then stage 2 again2018 in same breast mastectomy. I was on Tamoxifen until 2017 no issues but was switched to letrozole 2018 after mastectomy. No chemo either time as I was borderline told I needed radiotherapy only in 2012, none in 2018. MBC Nov 2020.Doing ok on 125 Ibrance , fulvestrant and Xgeva.

Have a lovely day

Sunny in North East England, off to the Yorkshire Moors for weekend.

Debra xxx😍

[Andibo]

I had a yet another clean yearly mammogram in June of 2012. In October I was having some breast pain and bammm...stage 3. 2 types of chemo, surgery, radiation, reconstruction . Remission until October 2019 when I was diagnosed with MBC. I am not a fan of October,

[Teddielottie]

Hello and welcome on here ! I don’t know if you are newly diagnosed stage 4 de novo but this is my story . Hope it helps ! Do ask on here if you have any further questions ... we are a very supportive bunch of ladies ! Also you can personal message individual ladies.

I went straight to mets , stage 4 ( referred to as de novo ), late 2017 . I had had my routine 3 yearly mammogram at 53 which identified a problem ,( the mammogram at 50 hadn’t picked anything up ). But it took biopsies to identify the extent of the problem . I was told I had dense breasts once diagnosed with bc . Initially they were talking about doing a lumpectomy and then as concerns grew , (once four tumours were identified), I myself decided on a right mastectomy. ( along with axillary clearance and reconstruction ) . It was the right decision as the axillary clearance identified that I had 16 out of 18 positive nodes and my tumours were 10.5 cm in total . It was then suggested by my breast surgeon that I have a ct scan and bone scan to see if the bc had spread to anywhere else ... it was found to be in my bones ( hip mainly and small foci on spine )

I was transferred to the oncology unit and was immediately started on Ibrance / Letrozole , ( I didn’t have chemo or radiotherapy ), which thankfully has worked well so far for me , having been on this combination for 3 years and 4 months now , and tolerated it well , and I remain ‘ stable ‘.

I don’t know your particular situation but I hope you are soon on a treatment plan and do well on it . Take care ! x

[TLLS in reply to Teddielottie]

Hi, this is exactly what happened to me,Inc tumour sizes. I had a mammogram and biopsies after finding a rather large lump early Oct 2020, got BC results on my 31st birthday, was referred for ct & bone scan as it was already in my lymph nodes and it came back it had covered nearly all my liver(I was told that the drs still didn't know how it was still functioning), some small nodes in my lungs and bones too. I had the scan on Friday 8th Nov, results on the 11th Nov and started chemo on the 13th.I have an amazing oncologist who started me on paclitaxol, monthly hormone injections and monthly bone infusions. Luckily the chemo has shrunk my liver tumour enough for it start functioning properly now and I'm currently stable, I'm now on Ibrance and Anastrozole as well as monthly goserelin and zomeda.

So glad to hear your stable and doing well with your current meds. X

[Wildcat1]

I had my apt with the gynecologist in January of 2013. Felt a lump that the mammogram didn’t pick up due to dense tissue. He said it was nothing to worry about because it moved so it was a cyst. But if I wanted to have further testing to ease my anxiety then go ahead. So in March I had further testing then more testing then a biopsy. Diagnosed stage 1 In March 2013. Then when the oncological surgeon ordered more tests I had another tumor same breast stage 0. Had a double mastectomy. Lymph nodes clear. Was on tamoxifen. Then in October 2016 I was having bad pains in my sternum my doctor put me on 800 mg of ibuprofen. Said this type of pain is not cancer pain. I asked if I could have a couple pain pills as we were leaving for vacation. He made me do a CT. Ct showed tumor on my sternum, spine, hip, femur, tailbone and ribs.

Was put on Ibrance and letrozole. Worked til June 2020. Til mets to my liver and more extensive bone mets. Have had verzenio, flasodex, and one other one I can’t think of. But all caused more progression. Now on Xeloda and bones are stable, my liver enzymes are back to normal, tumor markers are falling. Will get a CT in June to see if working on my liver. Hopefully I will continue on this path.

[hurricaneheather]

the initial dx staging, prior to biopsy, was IB. after the biopsy, IIA.

[cpidacks]

I was Stage 2 at diagnosis in 1991. I had a lumpectomy, radiation and chemo. Fast forward to August 2018 when lab work which showed a slightly elevated alkaline phos (liver function test). Repeated the test in December 2018 and again it was elevated. More testing started in January 2019 - ultrasound, CT scan, MRI, and liver biopsy. Showed MBC in liver. I have been on Faslodex only (because I cannot swallow pills) since March 2019. My scans have been stable and my alkaline phos is in the normal range. Also tumor markers have always been in the normal range. I never thought that this would happen after 28 years being cancer free. Good luck to all of us in our journey.

[Adele_Julia]

I was Stage 2. ER/PR+ Her2- in Feb of 2019. Went through a lumpectomy on my right breast and full lymph nodal extraction. 4 months of Chemo, 2 months of radiation which ended Nov 2019. Do not rely on Oncs. They didn't do a follow up except for blood tests. In August 2020 a boil appeared on the same lumpectomy scar. Everyone thought it was Edema. Turns out boom stage 4. So in my case, it was within 18 months.

[SeattleMom]

Hello!

I was treated for primary BC (Stage 1B) in 2000. I elected to have a double mastectomy and had no follow-up treatment. Leap forward 17 years; and I detected a lump in my right armpit. Stage IV MBC diagnosed in November 2017 with mets to spine and iliac bones. I have been under treatment since then, and am currently being treated with monthly injection of Faslodex.

Hope you are doing well!

Linda