Just diagnosed with a bone met

lisajo6

Hi,

I need some encouragement. Just diagnosed with one small bone met on my pelvis and one lymph node. Getting a biopsy and radiation. My onc says this is not a death sentence. I just read on this site if you get a met there are more mets that just have not shown up yet on a pet scan. I don't understand. So basically i am terminal? I only have a 22% change of surviving 5 years? I am asymptomatic. And 17 years out. ER+. ny advice? Help! So depressed.

theresa45

I'm so sorry you've been diagnosed with a bone met. I'm being monitored for a possible recurrence of my cancer, so I've been reading a lot about metastatic cancer. My understanding is that women can live many years with bone mets alone. Also, the fact that your cancer took 17 years to progress to your bones is a VERY good sign. Since your cancer is ER+, you have a lot of treatment options. Hugs and best wishes with your treatment.

Hopeful82014

Very sorry to hear that both of you are in this situation.

If it is any help, my 2nd opinion MO told me in June that if my ER+ cancer DID recur it would likely be in the bone but that there were MANY good treatment options even in that situation and she would expect that I would have many good years ahead. I hope she's right and I hope you will both be getting better news than expected. Good luck to both of you.

cookiegal

OK I am not stage 4 but it's late Saturday night so I am going to explain what I can, then head over to the stage 4 boards where they can be a lot of help.

It seems like are two ways of looking at mets.

The classic is what you mentioned above.

Traditionally stage 4 treatment is about prolonging life and quality of life not a cure.

But look at the threads for ogliometastatic.

Basically some women with a small quantity of mets are being treated with the goal of a cure. It sounds like your onc is of this school.

It seems like a common strategy is going after the one met with radiation.

This is a newer and not universal way of dealing with stage 4, but there are outliers who make it many years.

Good luck!!!!!

exbrnxgrl

Hi lisajo,

Here is the thread on oligometastasis.

https://community.breastcancer.org/forum/8/topic/7...

Generally defined as less than 5 mets to a single site (i.e. Bone, lung etc.), it is still not an idea accepted by all oncologists, but, increasingly, there is more focus and attention paid to it.

I just started my 5th year at stage IV with only a single bone met (upper femur). It was discovered, by accident, about six weeks after my bmx. I had no pain, no symptoms and like the cancer in my breast, it was grade 1. It was treated with radiation, with intent to kill it, and that it did. I have been NED ever since and also take Femara. I still have no pain and lead an almost completely normal life, working,traveling, family etc. This not the case for everyone at stage IV and I know I am fortunate, but for some of us, with limited mets, it is possible. Check out the thread I linked above and this one as well:

https://community.breastcancer.org/forum/8/topic/8...

Feel free to pm me if you have any concerns and check out threads I linked above.

Caryn

Jenv

I too have recently been re diagnosed after 15 years remission with mets in pelvis, ribs, right shoulder and sternum..absolutely no pain other than degenerative pain...am on femera and a monthly injection of xgeva.

My oncologist says I can live many years but it is 'incurable'..just treat like a chronic illness. I know treatments have come along way but I don't want to be 'incurable'..I want life!

Ironically, I am fit and well and living as normally as possible.....I plan to kick its arse. Doctors are not too keen on alternative treatments so I don't tell them.

It is very hard not to go to that 'dark place'..but just got to keep on keeping on and hope for the best.

Jenni v

wleeky1952

Started a month ago with pain in sternum and lower back. Thought it was after effect of chemo and the herceptinwhich I finished in 2013, 6 months of TC and year of herceptin. Onc suggested bone scan which I did. Just received call Friday afternoon my scan was abnormal. Will be having CT and MRI next weeks. So afraid I have mets to the bone. The pain I have been experiencing has been very manageable with ibuprofen. So I was surprised with my bone scan. Any advice or thoughts?

MaineRottweilers

What I had hoped had been a cure was short lived. I finished treatment in May 2014. I've been Dx'd with spinal metastasis. I fractured L2 in late July, sneezing of all things. I didn't know it was a fracture at the time. After bone scan, CT and MRI, they have determined I have multiple small lesions along my spine.

After a bone biopsy, it is clear that not only was I not cured, I am no longer in remission. Interestingly, the pathology has changed (great guess, Becky!). In addition to strongly HER2 positive, I am now PR+. It was suggested to me, that as long as we can keep it confined to bone, that I could live a long productive life like this.

It certainly is frightening but don't give up hope and don't let the reaction of uneducated people steal your positive outlook.

Mab60

Bmx in June no rads or chemo recommended. Femara only. Was on it 5 weeks when I had to get off due to the extreme back pain. Had a ct. Ct showed 2 ovarian masses. I have an aap with surgeon on Monday. Ct also showed area of concern on spine in t2 area. Had a bone scan this week. Just went by and picked up report which states highly suspicious for bone mets. Have not talked to oncologist yet. I am terrified

Robbin-M

Hello, This is my very first time writing on this board. I was just recently diagnosed two months ago with bone mets after being cancer free for five years on Tamoxifen. I have four spots total. Two in my pelvic which are less than 1cm and two in my spine with the largest at 2cm. I have been reading these discussions for awhile now and hoping to find more answers of what to do. I am so worried about my little girl who is 8 years old and I want to live to raise her and see her graduate high school and get married. I have researched everyday since this has happened in hopes of prolonging my life anyway I can. I think what upsets me the most about this cancer is theres nothing I can do to cure it. The helplessness of it. My husband and I have been so devastated by all this. I love my family so much. Not knowing how long I will be around is the hardest. I have been searching out stories of long term survivors and hoping I am one. Along with everthing else I have a Doctor who doesn't like questions at all and just thinks I should just leave that all to him and it has made me very upset and all my family members. I want to say how wonderful all you ladies are that are going through this as well. So much to say but don't want to overload this message.

Moderators

Robbin-M, we send you gentle hugs, and understand just how scary and overwhelming this all can be. Not knowing where you live, or what options you have, have you considered trying to switch doctors to someone who may be more open to questions and concerns? It makes it that much more scary if you can't feel that you have any control in your own care.

gindugirl

Dear Robbin-M - Please check out "Anti-Cancer" by David Servan-Schreiber. This book has changed my life! It gives you so much great WELL RESEARCHED info on prolonging your life with cancer. I've read a lot of books on cancer and this one has been the most moving and life altering for me. Good luck to you! I also have young children. A 6 year old daughter and 3 year old identical twin boys. I will do anything to be around for them! Lots of love to you! xoxo

Robbin-M

Thank you so much for your thoughts and advice and I will get that book. I am going to change dx. My Doctor did look me in the eye and told me that I would see my daughter graduate high school. I said you promise and he said I promise. That kinda took me for a loop like he knows something I don't about my cancer. I was just glad to hear it.

Anonymous

Robin- I was in remission for 18 years. I was dx at 44. I now have been diagnosed with a few mets to my bones. I was told I have many many years left. I always suggest that second opinions are so important no matter how much you love your onc. My second opinion really benefited me and gave me a great treatment option. Hugs.

Robbin-M

Thank you for that information. I am going for a second opinion. I am so glad to see how well your doing. This gives me hope. I was wondering if you could tell me what you think about whether the her2 positive verses her2 negative has somewhat a better outcome. I see alot more of her2 positive stories for longer survival than her2 negative. Does it really matter you think.

pajim

Robbin, first of all, you are likely to live for years and years and years yet. I'm still on my first treatment (albeit with a couple of tweaks) after three years. I don't plan on dying for a long time.

You need a doctor who will answer your questions. If yours won't, find another. You are entering a long term relationship and need to feel comfortable.

That said, here's a little primer. You are ER+ which means your cancer is fueled by estrogen. So the first set of treatments are anti-hormonals. They block estrogen in your body and will keep the cancer from growing. Treating mets is an art, not a science, and not all doctors agree but a common start for you would be an ovarian blocker (Lupron or equivalent, it's a shot), an aromatasse inhibitor (Femara or the like), plus a bone strengthener (Xgeva or Zometa). The first two block estrogen and the last makes the bones inhospitable to cancer cells. Your doc might start you on Femara plus Ibrance, due to the recent research, or not.

You'll take this treatment until is stops working for you. At that time you'll move on to a different anti-estrogen med, such as Faslodex. So it will go until you run our of treatments which work. There are dozens of treatments. Think of it this way. If each worked for a year you'll have no trouble seeing your sons graduate from school. (Hormonals work a long time for a lot of women)

If your mets are amenable or causing you pain they can radiate them. You can ask about it, but with four spots they may not be willing to radiate them unless they hurt or are very close together.

You're still in what we call the "shock and awe" period just after diagnosis. Life will settle down, promise.

Robbin-M

Thank you so much for your encouragement. I really needed that more than you know. I am on Flasodex and Ibrance along with Xgeva shot. I feel very good with no pain currently. My Onc seems to think that I have a slow grow cancer and that I respond very well with hormone therapy. I am also eating vegan and juicing. I also take b17 and tumeric and wheatgrass shots. No caffeine. Drink alot of water and am not eating anything sweet. I am trying to keep my immune system as strong as I can. Maybe this helps. Do you think so?

Robbin-M

And I meant to say that I had my ovaries removed three weeks ago. Thanks.

pajim

For the immune system, who knows? If juicing makes you feel good, and feel positive, you should do it. Some women swear by it, others don't. We are all different. On Ibrance your white cells need all the help they can get.

I mostly carry antiseptic wipes. I'm spending a lot of time on airplanes this spring and trying not to catch a[nother] cold. When you don't have neutrophils, colds are hard to deal with.

Come on over to the Stage IV forum. There's a thread for women on Faslodex and Ibrance (like me!). We share tips and tricks on how to take Faslodex without pain and how to handle the ups and downs of Ibrance.

There's also a thread called "Life does not end with a Stage IV diagnosis, REALLY" which might help too.