I'm new here but thought I would add me current experience with MBC.
I was diagnosed with BC back in 2014, had a mastectomy and only had to take Letrozole for 5 years. I thought it was a fluke and thought nothing more about it. Well, low and behold it is back!! I thought I had pulled a muscle from lifting a heavy flower pot in the summer of 2020 and tried Advil, Tylenol, called my prior oncologist and asked if it was possible that it was BC and he said the odds were slim to none. I then thought it was from the breast implant I had done at the time of my mastectomy to went back to him and had the implant removed. Still was hurting so I went to my Primary Care doctor, she took x-rays of chest and spine but nothing. During this time I was being evaluated for a Lung Volume Reduction Surgery at Barnes Hospital in St. Louis because I have severe emphysema and was meeting with the Surgeon in February, 2021, to schedule the surgery. The day of this appointment I had a CT scan done of my lungs just to make sure all was good to go and low and behold they found bone lesions. When they told me I was dumb founded and couldn't believe it. Naturally the surgery is off the table for good and I was so disappointed because I was looking for a new life of breathing better.
After a PET Scan, Bone Scan, CT of abdomen and pelvis I have MBC with lesions pretty much everywhere in my skeletal areas along with liver. I am on Ibrance 125mg and Letrozole and have had radiation on my sternum for now.
I am still just so shocked and that it wasn't found earlier. I suppose life has its ups and downs for sure and all we can do is fight forward with optimistic thoughts.
Thank you for reading my story!
Written by
peggylz
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Peggy, I am so sorry for the shocking events which understandably resulted in you being shocked. I am beginning to feel that this whole discovery and diagnosis is a crap shoot. No matter how well we self advocate and seek medical assistance, discovery is far from assured. My heart and hopes go out to you, as we do the best we can in such an imperfect system. Yes, I am shocked along side of you, and yet perhaps I shouldn't be, because stories like yours are too many times reported.. We do the best we can.... Proud of us for attempting to be heard and treated.
Thank you for reading my story! I think back on how I should have insisted my previous oncologist check me out and run some blood work but I just wasn't really thinking it was BC. How wrong I was but being on this site helps me get through the mistakes that were made on my part and the doctors.
I do not think that either you or I made the mistakes. We were doing the best we could possibly do with the information and non-medical ability which we had. Self advocacy should not be so needed or hard. Rather I think we need to congratulate each other for continuing on doing the best we can in this crap shoot of a situation. In each other's corners.
I agree 💯. None of this is blameworthy. We do the very best we can with the information we have. It is a crap shoot too often. Hang in there. We are here for you
Most days I still have trouble wrapping my head around the fact I have MBC. Sorry you have had to join our group, but, this is a fantastic group of ladies that will share all the ups and downs of this journey with you.
Of course you were/are shocked. I was too. Sending you hugs. You will find this group helpful - the women on here are brilliant and knowledgable and supportive. I have been so grateful. What I find particularly shocking and unbelievable is the doctor saying the odds were slim to none. What???? When you had had breast cancer previously? I find that just astonishing. I do wish they would give women who have had BC yearly CA153 blood tests and not wait for symptoms. I would have been diagnosed sooner if so... Thinking of you.
I somewhat agree with you on my past oncologist not wanting me to come in and get checked out and run some blood work. I suppose I was in such denial that it was that I didn't push the issue, which I know now I should have!
For me it wasn't denial, it was trusting that the Dr. knew what he was doing. I expect too much of myself when I say that "I should have". I blamed myself for too long for thinking that I had or should have more control than I did.. Now in addition to self compassion I am finding Congratulations for myself and other women who have faced unbelievable odds.
Thank you for reading my story. I certainly should have insisted but I suppose I didn't want to think it was and figured he knows better than me! Won't happen again whenever I have a feeling about anything! I have already started to feel better mentally being on his site with all you beautiful ladies. THANK YOU
Please stop beating yourself up and for taking responsibility for the dreadful neglect of those doctors. You are now on a good path forward towards stabilization and a better, more informed life. Please put that smile back on your face so we can all smile with you. We are in it together and we all contribute to this pool of love and compassion that lifts us up.Welcome to the club none of us want to belong to.
I wonder if it would be helpful to have a scan at 10 years… so many of us would have been found with minimal disease if that was done
Your shock and pain at the diagnosis is palpable and my heart goes out to you
I found that I need to feel empowered on this journey and really lead my healing journey. Now I know everyone is different but I thought I would share what’s working for me
Two books I would highly recommend are
- Sophie Sabbage Cancer Whisperer which is helping me from an emotional perspective
- Jane McLelland’s How to starve cancer which is enabling me to target the metabolic pathways of cancer.
My Oncologist is surprised by how positive a response I am having and has started to really probe for what else I am doing. So far I have shared the fact that I am taking repurposed drugs (metformin and statin to help cut the fuel supply off cancer and membendazole which helps combat angiogenesis the process by which cancer forms new blood supplies which is needs to spread) this was off the back of Jane recommendation for COC (Care Oncology Clinic they operate in UK and US) Note I don’t take the doxycycline they recommend as I am also working on gut health. I’ve also shared the diet changes I have made but not gone into detail on the supplements.
I am sure you will make the right choices for you whatever path you choose but know that you have on here a group of supportive friends and coaches to help you on your journey
Thanks Big Hugs. Took your suggestion. I just ordered The Cancer Whisperer from Better World Books: Second hand for under four dollars in very good condition. I like ordering from this group which has no shipping costs. They also do excellent work getting books out free to organizations in need around the world.
I feel Your pain I had breast cancer in 20 10..was on Anestorsol saw for 3 year Dr. Told me to get off, and I wasn't sure I should so he gave me one more year Prescription, after my hair wasn't coming back I thought I should stop. Then in 2017 I was having problems breathing, and coughing alots, laying down You could hear me wheezing in the room. No one could explain it. Then on my yearly check with my oncologist. I was told I had fluid on my right lung. I was told the cancer was in my lung.I am now on letrozole and ibrance. I've made a 89% improvement.
Thanks so much for this group .reading and communicating has help me understand some of my symptoms.
I am now too. Diagnosed on 1/25/21 with MBC. I am pain free and symptom free. Last July at my 6 month check up with onc, I asked for a lung cancer screening since I am a former smoker and never had one.
The lung CT showed a slight dark spot which I was told was a blood filled cyst and was told to get retested in January (6 months) before seeing onc again. So I had another lung CT in January and then they could see several cancerous lesions in my liver.
Had more CT scans, bone scan brain MRI. Other than the liver, there wasn't cancer anywhere else.
I am on Ibrance 125 and Faslodex and am tolerating both well.
I am have my first PET scan on 7/14. Onc said the PET scan might pick up cancers the CT scans hadn't, but that I shouldn't freak out. Right. Like that's going to happen! I asked if I would have another brain MRI and she said only if I become symptomatic.
I am terrified, but not as much as I was. I am glad I asked for that lung cancer screening test.
I am glad you asked for it too! I to was a smoker but quit 13 years ago due to my emphysema back then. I can't believe I don't have any spread to my lungs since they are so bad and only 20% lung capacity. It just shows there is no rhyme or reason to who gets it where in our bodies! Prayers for you!
I'm sorry to hear about your diagnosis. I've had MBC with extensive bone mets since 2016. I'm a physician and trained at Wash. U in St. Louis. The lung reduction program is awesome there! Did they say you can't have surgery due to the MBC diagnosis? Treatment is about quality of life and it sounds like the surgery would make you feel a lot better. Do they exclude cancer patients?
Yes, the surgery is off the table now that I have cancer again. I was able to have the surgery because I had gone past the 5 years from my initial BC in 2014. It was very disappointing to myself and family. My lung capacity is 20% I was right on the border line of getting it done. I just hope the treatments don't increase my shortness of breath.
Thank you for responding and I pray good things come your way!
Dear Peggy, thank you for sharing your story. I'm sorry it took so much time to get a proper diagnosis. It is quite a shock to find out you have MBC. I had a right breast mastectomy in February of 2013 and went on Anastrozole for 5 years. I tried to push my doctor to let me take it longer for extra protection, but she said there was no proof there was a benefit but that there could definitely be some long term risks to staying on it beyond 5 years. After going off the Anastrozole in 2018 I went 2 1/2 more years with good tumor markers, etc. I thought I was in the clear. I was diagnosed with MBC in October of 2020 after an elevated tumor marker, CT, bone scan, MRI and bone biopsy and was devastated. I thought I was doing all of the right things, eating healthy, exercising, etc. I felt the only "bad" thing I was doing was drinking red wine a couple times a week. I think my doctor was as shocked as I was as my genomic testing after my mastectomy indicated that I would have a 93% chance of no recurrence. Guess that is not always an accurate test! You have been through so much more than I have and I send you out some hugs and positive thoughts. I am also on Ibrance 125 mg and letrozole and have had 10 sessions of SBRT but am doing well so far. Hoping that you have much success with these medications and that all of your lesions will go away and that you will be able to have the surgery you need on your lungs. Stay strong and keep fighting.
Thank you for your story as well! I wouldn't say my experience is any worse than yours or anyone else, for that matter, but being on this website does bring a certain type of calm to me reading all the stories both good and not so good. Prayers for all of us.
What a shock and disappointment. So sorry you are were you are. I am wondering why you can't have the surgery? I had surgery after my diagnosis. Left breast plus lymph nodes removed. Not the same as lung but if it makes you more comfortable. Why not? In any case, doesn't hurt to ask.
Thank you for your reply. Lung volume reduction surgery is a high risk procedure and you have to be in excellent overall condition, other than your lungs, to have it done.
Peggy, I am so sorry for what you have been going through. I think everyone was probably shocked to the core when diagnosed with MBC. But, you will meet amazing women here and you will hear great stories that give you hope. Every time you read a story about stable scans or NED results, you want to throw your arms up in victory. This is a real marathon and the emotions are a rollercoaster but having this group of amazing women lending supports makes things a whole lot better.
Sister/warrior I am sorrrrry to hear your previous oncology Dr. didn't R-e-a-l-l-y listen to you. You know your body better than anyone else, on this earth. I also know these Dr.'s are human, and also make mistakes. I am glad it was caught on the chest scan now.😇 There are newer drugs, and natural supplements that are able to fight, and I believe can cure this disease. I hope/pray crappy c will be evicted from your temple ASAP. I was misdiagnosed for an entire year, and had metastatic Triple negative breast cancer. 10 of the 12 lymph nodes removed were cancer laden. 😕 At that time 14 years ago I imagined the ways I would hurt the DR. who misdiagnosed me. I was told by the referral Oncology Dr., who set up my treatments in early 2007, that he was buying me some time, and that I was not going to live to see 2008. Well I am here/present talking to you through my keyboard on this site 13 years after 2008. LORD, DR. GOD has kept me here 13 years NED with no pharmaceutical drugs, or additional chemo, or radiation treatment. Hallelujah 😇 I pray you too will have many many more years to enjoy with your loved ones.🙏😀.
Definitely can relate to the feeling of being shocked and trying to make sense of it all. It took a while for it to soak in however I am a miracle and I owe it to God and a whole bunch of people who took good care of me and saved my life 1 year ago this month. I pray you can find your peaceful place and try not to focus on the bad what ifs and can focus on the good what ifs. What if I live a long life, what if I can live stable or even Neds (No evidence of disease) for years etc. You will find that this group is a bunch of women who have been through alot and have alot of compassion as they can relate. Also they have a ton of wisdom to offer when needed! I am saddened that you have to go through such an evil disease but know you are loved here in this group! Hope you can enjoy this July 4th holiday!
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I hope/pray crappy c will be evicted from your temple ASAP. I was misdiagnosed for an entire year, and had metastatic Triple negative breast cancer. 10 of the 12 lymph nodes removed were cancer laden. 😕 At that time 14 years ago I imagined the ways I would hurt the DR. who misdiagnosed me. I was told by the referral Oncology Dr., who set up my treatments in early 2007, that he was buying me some time, and that I was not going to live to see 2008. Well I am here/present talking to you through my keyboard on this site 13 years after 2008. 
LORD, DR. GOD has kept me here 13 years NED with no pharmaceutical drugs, or additional chemo, or radiation treatment. Hallelujah 😇 I pray you too will have many many more years to enjoy with your loved ones.🙏😀.
First line of treatment 
Recently diagnosed metastatic 
Possible Progression 
Long timer-choice between Faslodex + Picray or Tamoxifen 
