New Member - De Novo MBC: Hi everyone... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer
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New Member - De Novo MBC

Anna1954
Anna1954

Hi everyone,

My name is Anna and I am new to the forum. Diagnosed in March 2019 with MBC straight out of the gate at 65 with 4 small bone mets on ribs and pelvis. Was quite a shock since I was completely asymptomatic! I’m ashamed to admit it but I had never had a mammogram (lesson learned the hard way) and the mass, though quite large at 4.2 cm, was not palpable until the end. Not surprisingly the beast was quite aggressive, ER >90%, PR 40%, HER2 neg and Ki67 23%.

My MO believes in possible cure for oligometastatic MBC and is treating me quite aggressively with curative intent. I had neoadjuvant dose dense AC + T followed by a PET which showed complete resolution of bone mets! I had a mastectomy and axillary node dissection (6/18 positive) followed by RT to axilla, breast and bone mets. As you can see I had the full works!!! My next PET was NED!

I am on Arimidex, Kisqali, Xgeva and remain NED so far. My MO is checking PET scans every 3 months and TMs monthly. My CA15-3 was normal at diagnosis, bumped up to a peak of high 30s during treatment and now back down to 20s. I am doing great now almost at 15 months!!! I’ve lost a ton of hair and have to wear a wig now which sucks (I know I’m vain) but otherwise feel great except for mild fatigue. Nice to meet you all!!!

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Welcome Anna. I'm sorry you have to be here but it sounds like Germany treats MBC very aggressively and with the minimal mets you had to begin with you likely will have longevity with this disease. I'm thrilled for you. I was diagnosed De Novo as well in May 2018 at the age of 55. MBC is treated differently here where I live so no surgery etc. Treatment is systemically and symptomatic with no mention of ever being cured. My Ca 15-3 is not a good indicator for me as I had very extensive bone mets when diagnosed yet an almost normal reading. I've been on Ibrance and Letrozole for 2 years with Zometa infusions every 3 months. I had horrendous pain when I was diagnosed but the treatments really helped with that. This is a wonderful group of ladies and we all totally get it. Hope you can continue to join us.

Sandra

When I was diagnosed with secondary breast cancer three months ago I'd just had a clear mammogram, so dont beat yourself up about that. Good luck with your treatment.

Hi Anna, I too was diagnosed with oligometastatic disease in June 19 at age 60 . Like you it’s was De Novo as it was a different breast cancer from the one I had in 2012 that was er + her 2 negative . Don’t beat yourself up about mammograms mine was clear 6 months before and nothing picked up on pet / ct/ mri and mammogram at diagnosis in 2019 . Except the one lesion on my spine ! This was discovered on a routine virtual colonoscopy for diverticulitis. My ca153 was in the 40’s now 37 goes up and down so my oncologist does not think a reliable indicator. My regimen is different to yours beacause it’s her2 positive . I had cyber knife to the one lesion and it’s gone . This is a great site and so informative . I’ve just ditched the wig and 😂 I miss it never a bad hair day ! Sorry you have to be here though . Kevina

Hi Anna,

Welcome on board! It sounds like you are receiving excellent care for your cancer management. I hope it continues to work for you. I would not beat yourself up for not having a mammogram sooner. There are many ladies who have had mammograms and the breast cancer still did not show up on the scans. I didn't have one until my diagnosis, as mammograms are not routinely offered to people in their 30s. Rather than look back, I try to look forward. I wish you all the best.

Sophie

Hello Anna,

Welcome to the group. We are all here for you. You will make many new friends. We are all stage 4 so we all understand. Best wishes! Blessings, Hannah

Welcome on here ... like you , I was de novo ,with low volume bone mets ( to two areas of pelvis), so we have some similarities . I am in England ...where are you ? It is interesting to see how different countries treat MBC.

Mine was discovered after a second routine (3 yearly over 50’s) mammogram , aged 53 , but as I had dense breasts , it took some finding , despite later discovered to being widespread in my right breast, and involving some painful biopsies. ( I had had a ‘clear’ mammogram at 50) . I went from being told I would only need a lumpectomy to needing a full right mastectomy and a right axillary clearance ( it was discovered at my mastectomy that I had 16 out of 18 positive nodes! ), and I had an implant reconstruction at the same time .

My lovely breast surgeon , she put me in for a ct scan and a bone scan straight away because of the very high number of positive nodes , ( I was a asymptomatic otherwise) , which confirmed the bone mets and then I had my first meeting with my wonderful oncologist, who rushed through the paperwork there and then to get me on Ibrance ( with Letrozole) as it was just before the Xmas holiday , 2017. I am in the U.K. and NICE had just approved Ibrance on the NHS. I didn’t have chemo or radiation . I am starting cycle 33 (2 1/2 years) of Ibrance 125mg and tolerating it well so far ( occasional tiredness and some hair thinning ) , and I am stable (my bone mets to pelvis had ‘sealed over’ after my very first scan after treatment ), but always in the back of my mind I know that at some stage I will have to change treatments ...just hope it’s not some time soon ! My tumour markers CA15-3 have always been at 18-22 , and I probably have negative marker disease , but my onc nurses still do a test every 3 months . My bloods have so far been within normal range (taken after my week off Ibrance) , so I have been ‘fortunate’ in that sense. I was considered well enough at the time to have a breast reduction on my left unaffected side a year ago , whilst on the Ibrance protocol , which my very supportive onc and my lovely breast surgeon arranged for me , and it did help pshycologically too . I have been blessed to have these two wonderful people looking after me ( both women in their forties and very empathetic ).

I am pleased your PET scan was NED , and I hope that it continues for a very long time, especially if you are being treated for oligometastatic MBC. Please do keep in touch here , and you will find the ladies on here all lovely and supportive . Take care! x

Hi Anna! Good to hear your doctor treating it the new way and using the word cure. He means business! 😀 I like people who aren’t afraid to do things that others say can’t be done. Here’s to many years of being NED...and that your doctor will continue in a positive spirit! I believe that makes a difference...😀

Hello Anna,

Welcome to our informative group. Sounds like you are doing amazing being NED. I am so pleased for you.

I also take Kisqali 400mg and have for 17 cycles. Getting ready to start on 18. Actually I started on 600mg for a couple of months but quickly moved to 400. I am also NED and have been since August of 2019. My TMs are rising so I am holding my breath until the next PET/CT scan. My last one was at the beginning of April and it was also NED.

I wish you the best and a long life of NED.

Audrey

Hi Anna

You certainly are being well looked after! I was also diagnosed de novo after (I later learnt) a fractured back which caused me so much pain. It took a GP’s visit, her referral to a back clinic (to see if I qualified for an MRI under the NHS), an MRI, which showed a lesion and the fracture, and then a biopsy to discover the MBC. This all took several long months. I had a clear mammogram 7 weeks before being diagnosed in November 2018 and have never had any breast cancer treatment (only for secondary - Letrozole, Ibrance & Zometa) as a lump or tumour was never found. I was told I must have a high pain threshold at diagnosis - ah noo! I used to beat myself up emotional about having missed any signs of bc but then I figured if the expects couldn’t find a cause, except by carrying out a biopsy, then I shouldn’t be so hard on myself. About six years before this I had had found a lump when we moved countries and had it checked out. I was told I had many cysts and given the all-clear. They returned again about a year later when I was again under stress with the unexpected death of my father while he was visiting. But again had the lumps checked out and was given the all-clear. In retrospect I think something was missed and it went on to be undiagnosed and untreated. I have learnt to let go of the “what ifs”. At 55 I am moving forward and enjoying the life I have. I hope the aggressive treatment you have received works and has a better outcome. I once had an unforgettable conversation with a well known cancer centre volunteer. She said I must feel like “an imposter”. I don't have the surgery scars or the bald head but I also didn’t get the hope that I could win this battle and may survive this disease. I just got the slam dunk of stage 4. The introduction of new drugs like Ibrance and treatment like you have received gives us hope. People need to be made aware of this and to know we live in a world where we can be treated to enjoy a quality of life that past generations of cancer patients could only dream of.

I will step off my soap box now. I wish you all the best.

Welcome! This group is wonderfully supportive!

Hi and welcome to this wonderful site. I was diagnosed DeNovo in December 2017. I spent 1 1/2 years with excruciating pain in my left hip and lost mobility in it. Finally my neurologist sent me for an MRI of my hip because the ortho doc wouldn’t. I had missed one mammogram but had the problem with my hip before that. My lump was small and wasn’t even picked up on the first mammogram even though we knew it was breast cancer. Took a second try with a stronger machine to find it. Woman that have mammograms every year still get diagnosed. I don’t understand it but it happens.

Welcome to this site. Don't worry about not having a mammogram. I had mine faithfully for 30 years and my aging dr with out of date equipment missed a tumor on the side of my mastectomy. It was very large-a soft mass- and she even felt it at my last exam with her. Taught me that we need to be aware of equipment that is out of date and perhaps change doctors when things don't seem right. We live and learn. This site is so helpful.--madlyn

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