Single spine bone met diagnosed after 19 years in remission.

CMHA22

My mother was just diagnosed with bone mets. She has only one tumor on one vertebrae in her upper spine. She had breast cancer 19 years ago and had a lumpectomy, lymphnodes removed, radiation and chemo followed by several years or tamoxifen. They told her she was in remission. Cancer free. She was having back pain and went in and they found the mass. The biopsy just confirmed cancer. Looking for some hope. I'm terrified. "Dr Google" is making this all sound so horrible. She feels fine. Is rarely sick has had clear mammograms for years and still does. Clear blood work ups. Any feedback will be helpful. What can we expect now? She will meet with the oncologist tomorrow morning.

Thanks in advance and thoughts with everyone going through this.

CM

DaughterOfStageIV

Sorry about the situation. It is a shock. My mother was also diagnosed stage iv about 18 years after her original diagnosis (mastectomy, chemo, tamoxifen).

We are now 3.5 years with stage iv. Started with a few bone mets. She now has many bone mets but still feels good. When she has new pain we usually go for a scan and many times there is progression- then it's time to switch treatments. First year was the hardest emotionally, but it has become a new way of life. Depending on where you live there are support groups for both patients and family members that can be very helpful.

Pm me if you need any support or have questions.

Bestbird

I am so glad you have found this forum on behalf of your mother although I'm terribly sorry for the circumstances that brought you here.

The initial weeks and months after a mets diagnosis are the hardest. Dealing with the shock and fear can be very difficult. But as others have said, over time it gets a bit easier.

If it's possible, your mother should have the met(s) biopsied to see what their estrogen (ER), Progesterone (PR) and HER2 status are, since they may differ from the original cancer. If the cancer is ER+ and/or PR+, then the oncologist should be considering hormonal treatment, and if it's HER2+ then Herceptin and Perjeta may be considered along with a Taxane. Additionally, you may want to request testing to see whether the tumor has Androgen Receptors (AR), since there are some promising clinical trials that target Androgen Receptors in a similar manner as current hormonal therapy targets Estrogen Receptors (ER).

This is very important: Please remember to have your mother keep copies of all tests results and scans in case there eventually is a need or desire to have a second opinion from a specialist outside her medical network.

You both may also want to seek a second opinion at any point about her treatment.

I've compiled a 119 page booklet about Metastatic Breast Cancer treatments, side effect mitigation, and cutting edge research regarding the disease.You are welcome to request a complimentary copy by visiting the top of this page: https://community.breastcancer.org/forum/8/topics/831507?page=2#idx_32

Two published books which you and your mother may want to read are:

"Anti Cancer: A New Way of Life" by Dr. David Servain-Schreiber.The author, an MD, was diagnosed with a malignant brain tumor which he survived for nearly 20 years by following the science-based principles described in his book.It contains excellent information about diet and supplements, as well as emotional well-being.

"Life Over Cancer" by Dr. Keith Block, an expert in integrative oncology who combines cutting-edge conventional treatment with individualized and scientifically-based complementary therapies.This book is an excellent resource for those who are interested in combining conventional and complementary therapies.

Please post if you have questions, and wishing your mother a great outcome!

DivineMrsM

CM, what kind of treatment is your mom going to be having?

While you may dredge up scary information from Dr. Google, here on this forum, you will encounter real women, many living mostly normal lives. We don't consider ourselves statistics. You will find stories of stage iv survival of many years. Please try to take this one day at a time

kayrnic

I was in the same situation. One single bone met after 10 years of remission. I am currently 4 years out from the metastatic diagnosis and doing really well. I still work, travel, and live a pretty normal life. It is possible!

CMHA22

DaughterofStageIV - It's nice to know I'm not alone. Relationships with our Mom's are like none other. It's so hard to see this happen again.

BestBird - Thank you for the information and response. I will request a copy and take a look at those books.

TheDivineMrsM - We will hopefully find out today what kind of treatment. I'll keep you posted.

Kaymic- The information found on the internet is terrifying. The 2 year life span average is making me sick to my stomach. So glad to see that maybe that's not how this is going to be.

DivineMrsM

CM, I was diagnosed stage iv from the start, it's not a case where I progressed from an earlier stage to bc with bone metastasis like your mom. But I had chemo, lumpectomy, radiation and have been taking anti estrogen meds since 2011 the year I was diagnosed and continue to be stable. Meaning, no progression of bc which is in my hip, rib and scapula. I am dealing with estrogen positive her2- bc, ( invasive lobular carcinoma).

That makes more than five years I have been living with this disease. I continued working part time for four years and have experienced some of my best times since getting the diagnosis, not because of bc but in spite of it. The first months are a huge adjustment but you and your mom will make it thru. It will also help when a treatment plan is in place. At some point, I had extreme anxiety, so now I take a daily antianxiety med that takes the edge of fear off and I move forward with my life. Some women find help with antidepressants. Please have your mom look into these if she feels the need. And you too

Many of us like to frame this as living with bc and not dying from it. Best wishes.

dlb823

Absolutely... living w/mbc. I was dx'd a little over 2 years ago (after almost 6 years) with diffuse and extensive bone mets. Like you, and like just about everyone else, the often old stats on Dr. Google made me feel like my life was over, or at least headed downhill very fast. But what a turnaround getting on a good med (as well as getting a surgery I needed) was! I'm now on my second regimen (2 meds this time, including one that's only been on the market a short time), and in spite of some ups and downs, living a fairly "normal" life -- even with extensive (but stable or improving) bone mets in many places.

The fact that your mother did not recur for 19 years -- as devastating as it is, especially after all that time -- is probably a very favorable thing, as is the fact that she only has one bone met, which hopefully will respond beautifully to a hormonal tx or perhaps a bit of radiation.

(((Hugs))) and hang in there! I'm glad you've found us! If I can offer one piece of advice, be sure the oncologist she sees is as positive as we are here! If not, run to another one! The last thing your mother needs is any doom & gloom or even a shred of doubt from one who isn't on the "living w/mbc" and "managing it similar to a chronic condition" page! Deanna

CMHA22

My Mother will start treatment asap. First radiation and then Chemo. The tumor isn't surgically removable b/c it has affected some of the bone in her vertebrae. The Dr. said that the cancer found in her spine is totally different than the bc she had 19 years ago which is fairly unusual. He also said it is not hormone reactive which is opposite of what she had the first go around. She was treated after surgery/chemo with tamoxofin but obviously this time around that wouldn't help.

Does anyone have any information about hormone receptor negative bone mets? Will there be drugs after chemo?

Thanks,

CM

ibcmets

CM,

With stage IV, they usually radiate bone mets in spine only when in pain or getting too close to spinal cord. I did targeted radiation on my spine several times and have no pain today. It was about 10 days of radiation just to the area. Depending on where mets are, your Mom may be tired and have heartburn or some pain lasting for about 2 weeks. I'm just about 7 years out and we still only treat the bone mets if mobility is compromised or having a lot of back pain. I started ER+ and now triple negative. I've already exhaused hormonals so I'm back on chemo for other cancers I have.

I think your Mom will do fine.

Terri

CMHA22

Hi ibcmets,

Glad to hear you're 7 years out. She has a single tumor on her spine, close to her neck. I believe the T1. As far as we know this is the only tumor that exists. She's also doing 10 days of radiation followed by 2-3 months of chemo, once per week. Is it possible for the radiation to shrink the tumor(s) completely in someone with spinal bone mets or is it simple to shrink them or control pain?

Thanks for your response

CM

CMHA22

Thank you Bon. Great to see that you are four years out. Best wishes to you.

EnglishMajor

remember that those statistics are usually based on median survival...half lived longer. It is "good" that your mom has only one spot and no organ involvement. If the disease is now triple negative, that somewhat restricts treatment options (no targeted therapies as with triple negative there is no target) people can often do well with bone-only disease... Good. Luck..

Shutterbug73

CMHA I just wanted to welcome you. I'm sorry for your mom's recent recurrence. I've heard it said that the longer someone goes between the initial cancer and recurrence the better their prognosis is likely to be, and 19 years is a very long time. She may also be considered oligometastatic (with few metastasis) which some still consider curable.

Stats can be very scary, but EnglishMajor has a good point about half living longer. Besides BCO I am also on several Facebook groups, and between the two there are quite a few women living 10+ years with metastatic breast cancer.

All the best to you and your mom as you navigate this new world.