Men MBC HER2 Negative in bone

cushmape

I was just told I have MBC HER2 negative, after bone scan and CT they told me that it is in my ribs and spine too as well as lymph nodes . They are going to put me on CDK-4/6 soon along with another inhibitor. They told me they will inject me with something to shutdown my Testosterone production.

I am reading lots of stuff on internet that confuses me. I really like to know given the latest medication in the market, realistically, how long to I have to live? I see in some places talk about 2 years, 3 at best. I see some people say they are being treated for the past 7 years and some doctors talk about 10 to 12 years plus.

I am confused. My doctors keep saying no one can say how long do I have. Is there anyone here who has this MBC HER2- in bone and how long you have beef fighting it? Or, do you know someone with MBC in bone and how long they have been fighting it. I just need to get a realistic time frame so I pull my life in order. Thank you all.

moth

Hi cushmape, I'm sorry you find yourself here. The thing is, your doctor is right. We just cant tell how long we have - though as disease progresses, you usually get notice that you're running out of treatments. I was diagnosed less than a year ago and one helpful thing someone said to me is yeah, you're dying, but not today and not tomorrow either. No need to panic but some plans might need changing.

Individuals can have wildly differing responses to treatment. Median survival for all MBC is reported as 3 yrs but the data is very shaky because of huge holes in how it's collected. Some hormone profiles do better than others. From what I've read, Bone only HER2+ seems to have best outcomes, triple negative visceral mets (that's me!) has worst. Statistically everyone else is somewhere in between but again, each individual will respond differently to treatment & some achieve stability ( or even no evidence of disease) for years.

Were you diagnosed de novo stage 4? ie were you ever diagnosed with a breast cancer at a lower stage or straight to stage 4? That does seem to affect survival as well.

I will pm traveltext and ask him to pop in & direct you to the men with breast ca resources as you have some unique challenges.

I will also suggest you check out the bone mets thread: https://community.breastcancer.org/forum/8/topics/... There are tons of people on that thread with your hormone profile. I'd suggest not reading back more than about 2 years but if you start somewhere in 2019 and just scroll through you'll learn an amazing amount in a few hours. If you look in the signature lines, that's where most people put their diagnosis and hormone marker etc so you can see how their dx compares to yours. Consider adding your dx to your sig line (in profile, and then go to settings to make it public)

Pts experiences with treatments, medicines, side effects, radiation, mobility etc - it will all start lodging in your brain & you will have a way better understanding of how it *might* play out, and I think you'll start seeing the variation in people's responses too.

Pls continue to ask questions. We're a great resource & there's tons of support and information here. From clinical trials, to new theapies, to dealing with side effects, to just hanging out and commiserating, it's all here.

Hang in there. The beginning is the worst but after a few months, it does get better. You can't imagine it ever will, and yet it does.

Traveltext

Hi cushmape. Welcome to BCO. There’s not many men here, but plenty of women like moth have MBC experience and lots of good advice based on their experiences. The questions you are asking don’t have simple answers. Prognosis depends on so many factors. I know lots of men living with this disease and several who have unfortunately passed. Of the latter, five years from diagnosis would be an average time. However, treatments are improving all the time and patients are living longer than the average. Before we can help you further, it’s best if you post your statistics in your signature. This disease has so many variations. Look through the website in my details here as well. We’ll help you navigate this as best we can, you’ve come to the right place.

KBL

cushmape, I’m sorry you find yourself here. I know it’s very scary when you’re first diagnosed. Let me just let you know I had a missed diagnosis and was told in May 2019 that I had de novo Stage IV to my stomach, but not telling the whole story here, it was actually throughout my spine since 2013. I went six years with no treatment and was finally put on Ibrance and Letrozole in 2019. I am still doing fairly well and am in my ninth year. I’ve only known for a little under two years. I wanted to give you some hope. I am also Her2 negative.

I’m so glad you’ve come here you will see many with Stage IV living quite a few years

cushmape

Thank you very much for your encouraging words. Sorry I have replied late as I was busy with doctors and appointments and unpleasant news. I have been told that I have to get Lupron to stop production of testosterone in my body as the body can convert testosterone to estrogen. Then, they took me off Tamoxifenand put me on Ibrance 125mg and Letrozol 2.5mg.

More than me, my wife and my mother are upset. The thing is that I went to my cancer specialist on summer of 2018 with soreness in my breast. The mammogram did not show anything, so as my bone scan. in 2019 summer My breast started to shed skin and my nipple started to sink. I thought it is the side effect of radiotherapy I received for my Hodgkin when I was young. in 2020 I went back to my doctor and expressed concern. The second mammogram showed two tumours. He told me, don't worry, this is not a fast growing cancer and we just remove the breast tissue and it should be okay. They put me on Tamoxifen and started to plan for breast removal surgery. Then they decided to do another bone scan and CT. Then at the end of December. they told me that the cancer is in my ribs and spine. I just don't understand that how on earth in one year it can expand like this.

The other problem is that I have severe heart disease with 2 calcified valves and inoperable coronary artery disease in addition to type 2 diabetes. So I hope these medication give me few more years so I can take care of things properly. I know and understand that we all will die some day, I just didn't expect for my number come up so early.

The doctors told me that there is no need for surgery anymore as the damage is done and it will not change anything. So I am kind of puzzled as how this will effect my life and how much I should think about it. Adding lock down depression to this depressing situation makes it seriously tough to smile and pretend that I am okay. I am really not okay.

Thank you again for your kind words. Please let me know if you find out about any better treatment.

Traveltext

Welcome back cushmape. I'm sorry to hear your bad news, but remember the shock of the diagnosis is often the worst part of this whole process for the patient, and your family and friends. The Lupron will help for starters, and Ibrance is a very effective first-line treatment. My Stage 4 friend, Barry, has been on this for three years now without progression. Remember that there are several lines of treatment you and Barry will receive if the Ibrance fails fails. As to your other medical problems, I'm sure you will alert your medical team to this. I get it that you're not okay. I get it that you feel the situation is hopeless right now. But, just remember that there are very many people in your situation who have years of quality life ahead of them. Please keep posting here, we'll try to help as much as we can.

exbrnxgrl

cushmape,

As others have said, it is fairly impossible, especially this early on, to predict the course of mbc. Having a mastectomy at stage IV when it’s an initial dx is uncommon.

I have lived almost ten years with mbc, bone only. I will be retiring in June when the school year ends and lead a fairly normal life. No one could have, including all my docs, predicted this nor is there any good explanation for why I have done so well. My point is that unless all signs clearly point to terminal, no one can really answer your questions.

Breast cancer is complicated. I never missed a mammogramyet still ended up with mbc. Don’t look for an expiration date and all the best.

moth

cushmape, the thing is, we really cannot predict the course of the disease for an individual, just like we cannot tell who will get cancer. What we do know is that population wide, there are some observable trends, but where each individual will fall is really impossible to predict.

You might have a better sense after you see how you respond to your first treatment but even that will not be an absolute predictor as things can change - a new treatment might start working amazingly well for example. Many people maintain stable disease, localized treatments (like standard radiation or SABR) are being increasingly used, and new therapies are in the pipeline. Clinical trials are available too.

What might be reasonable is to ask your MO to tell you when they think you have 6 months (or 3 months or whatever duration you think you'd like to know). MOs can usually tell when they're running out of treatments or when the body is starting to run down of reserves.

If you want to know how stage IVs do as a *whole*, from a population approach, this study examined 2010-2015 de novo cases. So treatments might be different and prognosis might be better but it would give you a feel. Scroll to Figure 3.

Your 'type' of cancer is in the top left corner & the blue line is bone mets only. Again, we have no way of knowing how each individual will do - you might not be on that line at all. I'm not going to post the image in case you decide you don't want to see it after all - or others don't want to.

https://bmccancer.biomedcentral.com/articles/10.11...

plan to be around for a while yet & enjoy each day as much as you can. Best wishes