How long have you been metastatic?
My oncologist made a comment that really has me shook, and said ‘you’ve had a good run at it’ talking about me avoiding chemo for almost 4 years. I thought about it the entire 5 hours drive home, what kind of thing is that to say to someone! Like is that the end of the road for me?!? I just cannot get over it.
I am so happy that you have not get chemo for 4 years! He should be happy not to put poison in ppl body. I am hoping have the same outcome as you. I was super worry past week when they found a lump and then somehow the lump disappeared and I didn't need biopsy. I did took 60 pills in 2 days to increase my immune system and fight whatever the lump was between my under arm and back.
How long have you been metastatic?? And specifically where are your mets at?
Also what meds are you currently on?
I was dx with metastatic on January 4th 2019.
Cancer came back to the same spot in my right breast and spread to my spine T6 only.
My next scan is this monday. I am hoping still stable the lesion in my spine.
Has your onco tried Tamoxifen? I was where you are exactly 3 years ago and tamoxifen worked for almost three years. I would also request stereotactic rads at t6 you may be able to buy quite a few years by doing that
Yea when I was early stage on 2017, but they made me very tired, not desire to get out of bed, like I have the flu. So I stop take them. They removed my ovaries this year so I can take letrozole, 4 months later they start with Ibrance and 3 months later I start with xgeva. I could not tolerate zometa, so they give me xgeva. Then, the doctor told me the xgeva was better than zometa and dont damage my kindney like zomete. Thanks god that my body could deal with zometa. I did got high dose of radiation in my spine. The lesion decrease the last 2 scans, but I have 3rd scan this monday and i hop to get a good one with God's help!
Hoping for the best for you! And hope your scans are good too.
Hi,
That was a very insensitive thing for your oncologist to say. I'm sorry to hear that. Let's hope you continue to do well and avoid chemotherapy.
I was diagnosed in March 2018 and found out the disease was metastatic two months later.
Sophie
I thought it was very insensitive too, still cannot get it out of my mind.
Your fairly early in the metastatic disease, thank you for replying. My cancerversary is Jan 11 (4 years)
Yes, it was. I remember my oncologist telling me I was lucky I wasn't triple negative. I know she didn't mean to be unkind, but I did not feel lucky to be told I am ER+ HER2-. I feel like I have been living with this disease for a long time (perhaps I have, but just didn't know it). I can't really remember what life was like before my diagnosis. It just feels like it has been a part of me for so long.
I can understand why your were upset, i would be too. But thankfully your still doing good in-spite of it all, thank you for commenting too. All the best to you
Thank you so much! I wish you all the best too. x
Triple negative is the "bad" breast cancer. If it harder for them to treat as there are not many medications that work for that type since they are negative in all three areas and usually does require chemo. I was told when I was diagnosed that I had the "good cancer" ER/PR+ and Her2- because they had several lines of treatment for that type of cancer and that many women lived for a longer period of time.
My sister has Triple Negative and would like to hear from more friends that also have this type....prayers for all
I've been diagnosed at TN. Feel free to give me a message.
Thanks for replying. So far my sister's is contained and her oncologist said there are many more options out there if her treatment stops working. She has been TN now for 2 years now starting out being er+her2-. She has lots of pain in her pelvic bone as that's where the mets are, and her spine. She had her hip radiated once at MD Anderson and got relief and may possible have to go there again. We live in Amarillo Texas.....she's been fighting cancer for 8 years now...
Yes, that's my understanding too. But I view all cancers as "bad". I don't feel fortunate to be ER+/PR HER2-. I get what you are saying though.
Well it goes without saying that any type of cancer is bad. But some are more treatable and have more options for treatment than others. Ours has more option treatments than say someone who has a triple negative breast cancer which is much harder to treat because they cannot use the drugs that are hormonal for that.
Yup- being TN sucks all those new fancy drugs don’t work- spent the summer trying them hoping I was still a tiny bit positive- now back on IV chemotherapy after 3 years of xeloda- lost my hair again - weekly infusions of Abraxane- it’s getting old and I’m getting tired-
It's been two years for me and I already feel like its getting old and I am tired also. I hope we both have a better New Year and hopefully more positive than negative thoughts.
Yesssssss I was diagnosed Triple Negative metastatic breast cancer in August 2007, and I was told I would not live to see 2009. I did not have a lot of options back then. I had chemo, and radiation treatments. I realized I did most importantly have GOD, and God is the reason I am still here in the land of the living in this place we call earth. Amen XoXo Happy 2020 New Year
Thanks for the lovely comment, i really appreciate you putting it all in a different perspective.
I am feeling similarly SophSp. Perhaps you onc could have been a little more sensitive in how she said it or qualified her statement but it feels like she might have been giving you encouragement. Which is to say, you survived 4 years without the need for more aggressive treatment and you will probably still do well now that we need to move on.
I congratulate you for such an outstanding outcome fir 4 years. Go course we are all different and goodness knows our tumors certainly behave differently but for me it was only 6 mos on a de novo diagnosis until we started chemo. I remain ever positive that I will get many more years. Science is actually far outstripping the application of outcomes these days. That is, science is moving so rapidly these days that having meaningful comparisons of treatment out there and published is somewhat limited.
Please keep the faith that in fact you have done so well and there are brighter days ahead. My hospital has a support group only for women with stage IV BC and I find such inspiration from these women. Many have been living post targeted therapy for 5-15 years. So hang in....we definitely have hope and science on our side!
Peace
I wish physicians could understand the weight their words carry. I look for meaning and hope in everything they say...even in their small talk.
My guy is a critical care doc and we have some testy moments with some of his comments. He loves to say, "I don't think that's right" when I tell him about something I'm feeling. I used to be polite and listen to him tell me I wasn't feeling what I was feeling. Not so polite anymore! However, I remember he loves me, and he is desperate to help me. He just gets out over his skid sometimes!
Hopefully your oncologist was trying to say that you have done well with targeted therapy and expects you to do well on chemo. Maybe you could just ask for clarification to ease your mind. It would help you, and possibly help your onc communicate with a little more sensitivity.
After 3 or 4 months on Ibrance, I told my doc I was experiencing some significant pain. He said, "I think you're just a little somatic." I was in the emergency room with a severe kidney infection within days. Don't think I don't poke at him about that!! I'll say, "I know I'm just somatic, but I have a fever of 102..."
Remember, they're human. They say stupid sh#* just like us. Back them up. Make them explain what they're saying until you're satisfied.
I'm hopeful you will do just as well on chemo as targeted therapy!! Maybe even better!!
Andi
I could write a book on the insensitive things oncologists and nurses have said to me. I try to put it down to them being human and not thinking about the implications of what they say. But it can be difficult.
My subject at university was linguistics and one of the things I studied was medical interactions between doctors and patients and how their formulaic nature leads to misunderstandings on both sides. I would love to be able to do training courses with doctors on better communication with patients.
When first reading the remark the onco said to you, I immediately took it to mean that you were luckier than most in NOT having to do chemo at all during the four years you have had MBC. I didn't read anything else into it. I think, depending on how we are feeling, we can sometimes misconstrue what somebody says to us, whether it be a doctor or a friend. I did not take it to mean that it was the "end of the road for you." I am going on a bit over two and a half years with MBC.
I had DX of MBC, ER+, PR-, HER2- in April 2016. Mets to the bone, liver, lungs.
I've been on/off chemo several times during that time.
You asked how long we've had mets. I was first diagnosed with bc on 3/1/2004, almost 16 years ago. I call that my month from hell! Initial staging revealed "extensive bone mets" in several vertebrae, two on the pelvis, 2 or 3 on a shoulder blade and one on a rib. Testing also showed the primary and the mets to be E+P+ and her2neu -. March is also my birthday month. Anyway I started treatment on April 2, with Letrozole and I got my first Zometa infusion later that month, I don't remember exactly when. But turns out I am allergic to Zometa, so we manged that with pre-Zometa infusions of Benedryl and hydrocortizone, plus half dose of the Z, extra fluids and two hour infusion time. I got almost five years from the Letrozole. Faslodex came next and in those days the standard dose was just one injection, rather than two. I got over 9 years from the Faslodex, and did start getting 2 shots as soon as that was FDA approved. Now I have been on Exemestane for 2 years. I did switch to Xgeva for my bones as soon as it was approved. I don't know that Xgeva is "better" than Zometa. I think in trials it did do a tad better, but only months, a few months, and it does have a slightly higher risk of ONJ.
I was on Ibrance for about 9 cycles in 2016, but it damaged my lungs which later led to atrial fib. So, I am not a fan of that med, but that is me.
I still have bone mets only with not alot of of progression when I have had progression. We've always waited until scans show progression and I've sometimes gone a few years between scans. My onc retired about a year ago and I really miss her! She was very experienced and not one to get nervous about rising tumor markers. She suggested a second opinion after initial staging, with a bc specialist at one of hte Comprehensive Cancer Centers, the top tier of cancer treatment places in the US. There's a link to a list of those on this group's home page under resources, on the right side of the page. I went back there a few months ago at the suggestion of my new onc and the top onc I saw told me that if he'd been treating me, he would have done just what my closer to home oncs have done. He also said that I probably have years left. (Of course nobody knows an even the best doctors guess, is just a guess!)
My way of coping has been to learn all I can, and I have joined the National BC Coalition and the Metastatic BC Network and attended some of their conferences and went to NBCC's ProjectLEAD, a week long intensive educational program for bc patient advocates. Early on I heard of women living 20 years with mets, and there was a 30 year survivor at a MBCN conference.
I am now 73. The last two years have definitely been the hardest but I am not sure how much is age, how much is cancer/cancer treatment, and how much is other stuff. I've had lower back issues since my mid 20s and had some pretty painful back issues about 15 months in and was referred to physical therapy which didn't help. By the time I saw a neurosurgeon and had surgery, my sciatic nerve has damage and that caused neuropathy down my legs and into my feet. Then in 2012 I fell on the ice and broke three bones in my ankle and dislocated everything that could be dislocated in that ankle. I had to be off that foot for about ten weeks and had alot of atrophy. My balance isn't great now. I walk well on solid surfaces but am uneasy on uneven ground. That and the breathing issues are harder on me day to day than anything cancer related! How crazy is that! I've also developed eczema . I am pretty tired alot of the time. But I'm still here! And able to love my family, enjoy our pets and keep in touch with my friends. Not the later years I expected but certainly "better than the alternative!"
With bone mets only and a E + cancer, you have alot to be hopeful about!
May we all have a wonderful 2020!
Your story is inspiring PJB, thanks for sharing all the details. I'm waiting for lab and scan results, worrying about the next step if Xeloda has stopped working so it's great to hear about longer term successes. May the New Year bring you more lovely times with family, friends and pets.
PJB , wow. I am so happy you shared your story. Thank you. I feel so much more optimistic. I have bone mets since 2018 and on ibrance and arimidex. After reading your story I am less afraid if my current treatments needs to end and I have to try different treatments. Would you mind sharing the comprehensive cancer center you got your second opinion from?
Thanks again
Those of us who do well on first line treatment often do well on the next treatment as well, especially those of us with a E+ cancer who respond well to hormonal treatment. I go to U of Michigan Comprehensive Cancer Center, but that's because I live in Michigan and it is the closest one for me. I went there right after initial staging, and then again a few months ago. Alot of changes there in 15 years, new building, didn't see a med student too this recent time. I've also arranged to donate my body to the med school there , partly because I value education and that's a way to help educate the next generation of med students, but I'm also tight with money and that's the least costly way to handle our bodies once we are no longer in them! They'll cremate it once they are done and mail it back to my family. My parents and grandparents were cremated, so it's become a family tradition.
WOW! Not very well chosen words but I would just hope he meant them as encouragement to “keep it up!” Forget his somewhat tactless way of discussing your journey!! ALL OF US simply say HOORAY!! ❤️❤️😘😘👍👍
I’ve been on Ibrance for almost two years, and recently have had low neutrophils so needed to take extra weeks off. I’ve been more tired lately, but don’t have many complaints to talk about! I have a GREAT cancer team and am constantly encouraged. I will have a PET scan January 9th. I’m nervous, but try to stay optimistic! I live each day the best I can and enjoy my life,family and friends! No one knows when and how they are going to die, but I’m 77 years old and want to live longer! We have no choice in this matter! ONLY GOD KNOWS! Try not to pick up on what everyone says,even the docs! They are doing their best and they see those of us that haven’t done as well as we have, which is why they are telling us when we had “a good run”! Hang in there and remain positive, that’s half the cure! God bless! Kathy
Doctors can and do slip and make mistakes. Wrong comment by your doctor, but I suspect he /she was trying to be positive stating you have done well for 4 years. Stay positive. We are all unique. Doctors can tell us the diagnosis but not the prognosis. We cant predict the future and neither can the doctors.
Remember you, new treatments are being worked on everyday. Faith
That was a very insensitive thing to say. I would be upset too
I’d be a weeping willow if I was told that...I’m very sensitive at this point since my lungs are being drained weekly...it fluctuates each week..get my results tomorrow and praying all is stable...I hate CANCER...but who doesn’t....I’m not a good writer but I pray for all and may God or who ever you believe in have a healthy beautiful New Year..
I was dx at 31 - mets to liver at 48 in 2018. I am 49 now.
I took Tamoxifen - 10 years. Now I take Ibrance/Falsodex. Since 2018.
Idk really how long I was metastic bc I never had scans until 2018. Actually, I had a MRI in 2009 before starting Tamoxifen. Looked good at that time.
Kelly
Chemotherapy isn't the "end of the road" either. Just saying.....And, if you do need it, as I do, I think of it as helpful, not poison. 
I'm sitting here perplexed as to my situation. I have not had good cancer care here in Las Vegas. In fact, NPR released a study in 2017 that women with breast cancer in Las Vegas have a substantially lower survival rate than women anywhere else in the country. I have also gone to Denver where I did have some good doctors but my oncologist there let me down too, as well as the ones I have had here. I have mets in my spine, pelvis, skull (2) and liver mets (4). My Denver onc was perplexed as to why chemo just doesn't work on me. I have ER+HER-. I don't know but suspect there are several reasons, one being that I am very sensitive to chemicals and two, that a very corrupt surgeon here left a deep margin of cancer in me in 2009 after my lumpectomy and NEVER called me back to get a clean margin, which is despicable. Then in 2009 the Nevada Cancer Institute radiated me for six weeks though I didn't have a clean margin. My oncologist and radiologist at the time allowed it and didn't protect me at all!!!! You can imagine how outraged I am! I was just told by my new radiologist/oncologist's nurse that you NEVER EVER allow radiation when the margins aren't clean! Of course at the time this happened, I didn't know. Also, NCI was having financial problems and ended up going bankrupt! The medical care in Las Vegas for breast cancer is a travesty and until this type of criminal behavior is stopped, women are not safe here. It's ALL about money!
ER Visit
Hi Ladies,
Beautiful ladies
