Metastatic breast cancer: Anyone else?

In 2008 I was diagnosed with invasive dutcal carcinoma. I had a lumpectomy with 17 lymph nodes removed, 2 were cancerous. I underwent chemo therapy and then radiation. I was put on Tamoxifen and in 2011 my oncologist decided to put me on Letrozole. At that time I was experiencing some back pain so my oncologist decided to do a bone scan as well as a CT scan which showed activity in the medulium. I was immediately put on Letrozole and followed up with CT and bone scans every 6 months. The scans indicated “hot spots” / intense activity sometimes in various ribs and on the most recent in July with “moderate to intense uptake present within the manubrium which has increased in intensity and extent since the prior bone scan and corresponds to a lyric bone lesion within the manubrium.” Throughout these years I have not experienced any actual bone pain other than joint pain which is a side effect of the medication. A recent bone densitometry confirmed Osteoporosis. I discussed going off Letrozole with my Oncologist and she agreed with a 3 month redo of the CT and bone scans. This has really confused me as if it has metastasized into my bones why do I not have the pain? Has anyone else experienced this?

Hi @18dee,

You may notice that I moved your discussion and combined it with this existing discussion on metastatic breast cancer. I did this as I thought it might be beneficial for you to meet other members who are talking about this type of cancer.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I can imagine that you are worried. I'm tagging @wandering @rae3 @joancecilia2017 @tula @theda to get their thoughts. According to this information about bone metastasis, "Bone pain is often the first symptom of cancer that has spread to the bone. The pain may come and go at first. It tends to be worse at night and may get better with movement.
https://www.cancer.org/treatment/understanding-your-diagnosis/advanced-cancer/finding-bone-metastases.html

@18dee, has your doctor prescribe any bone-building medications for the osteoporosis?

I was diagnosed with MBC bone mets in September 2013. I have been on Xgeva the whole time - started out once a month and now get shots every three months. I haven't had a bone scan in a while but my last one showed a great deal of improvement in the bone mets. I am now on Ibrance (cycle 4), Faslodex every 4 weeks and Xgeva every three months. My tumor markers have slowly been going up which is why my oncologist put me on the Ibrance. He wants to do a PET scan if the tumor markers continue to go up. I hear it takes a while for the Ibrance to take effect so I am not concerned. Taking a cruise to Alaska in two weeks so I can worry about the MBC stuff when I get back. Keep a positive attitude. There are so many great meds out there. I am on an Ibrance blog which has some very positive input and information from others. If you get on Ibrance you might google that and get on there. It is very specific to that and MBC. Very supportive. Best wishes.

Thank you for that info. I live in Canada so in October when I get my next CT and bone scan results I will look further into that treatment if my results show an increase or my oncologist discovers more of what my situation really is. Enjoy your cruise to Alaska! That was something my husband and I planned to do before he died of a hard fought cancer

Thank you for moving my post for me as I now have had a very good response. Yes I have been on fosamax for many years (long before my breast cancer diagnosis), due to first osteopenia and now osteoporosis. We have a lot of various arthritis’ on both my mother’s and father’s side of the family. Will be anxious to see what my next bone and CT scans show in October after being off the Letrozole.

Sorry to hear about your husband. Always a harsh wake up call (had one of those myself before I met my husband). I have had MBC for 5 years. I woke up about 6 months ago and realized I was not getting any younger. The Alaska Cruise was on my bucket list so we decided to "gut up" and do it. Since we no longer go to Arizona for the winter, we are spending our "snowbird" money on this cruise. Hope things go well for you. Keep in touch. I do not check this blog very often so if you don't hear from me that is why.

Hi everybody,
Sorry I was busy accepting my latest cancer result & couldn’t be there for you. I was experiencing some strange prins around my right era, inside. I met my oncolog for a month ago and after some x-rays they found that mets have spread on my head bone. They have a meeting and want more & thorough examinations and x-rays, before starting the treatment. For the time being I am on Capecitabin 500 mg pills, hoping to keep my tumors as they are.
Wow, a Cruise to Alaska sounds wonderful. I have no list to what I Wish to do, I just take the days as they are and try to have at least one long walk in the woods for about an hour. Next is to visit our grandchildren as much as possible, read and read and talk to my family. Then I have to do all the tests and more. Nobody believes that I suffer from cancer stage 4 which has spread. I have cancer, so what? I try to find positive thing in my life and the world around me to keep me alive. Of course the anti-depression medication helps more than possible, lol! Love you all,

Hi @saltis, I’m searching for words to write to you about your recent news about new spread found to bone mets to your skull (if I understood correctly). Everything I could say sounds like a predictable platitude. But words are all I have so I will find some.
I take great strength from your day by day, hour by hour attitude, and apply it to my life. A walk in the woods and spending time with family has been intense focus for me the past week as I spent time at the cabin with family. And I read 3 books. I hope you realize how your words inspire. Thank you.

How many grandchildren do you have?

How are you doing with Capecitabin? Are the side effects manageable?

Hi @colleenyoung,
Thank you for your mail. Sorry about confusion. I have this auto correction which try to change almost every word to Swedish. The result is always interesting, confusion or laughter... yes you guessed right I have mets on parts of my skull and in one lung. It was expected or at least I thought it was expected. I mean nobody lives forever and now both my body and mind are at peace, a bit sad but I feel ok. They are going to start with Zoledronsyra drops at the beginning av September, every six weeks and afterwards every 6 or 7 months.
Honestly don’t know what to say about Capecitabin. The first 6 months was awaful, I had terrible rashes on my arms, back, under my feet, in mouth, on my skull, hands and bleeding & itching on my clitoris. They tried to give me lower dosage and rashes on my arms and back disappeared but still the skin on my arms shows the traces of those terrible rashes. I easily lost my balance and fell down. I gained liquid in my lungs and was operated twice. Now I take only 1 000 mg per day, without any pause in between. Less side effects but some of them are still there. Now that I have mets on my skull and probably in one of the lungs (I have already three tumors on my breast and chest), don”t know if I continue taking it or change to something else...I have not received the complete treatment plan, yet.
I have two wonderful grandchildren . A smart beautiful girl who becomes 4 in two weeks time and a boy who is almost three months old.. i feel really lucky and satisfied with my life. I have done my best to see the positive aspects of my life and do whatever I can for others. I have lived in war, gave birth while they were bombing our city, lost two unborn childtrn, was forced to seek asylum in Sweden which became our home. Lost a lot of loved ones but every problem, took me to new paths and let me discover the strenght in myself and the love and friendship around me. Have made wonderful friends and mostly have been happiness and laughter in my life. When down the nature helps me with long walks and time to accept my life.
Friends we have so much to enjoy and love to share with others. Share your love and warmth with others, please❤️

Confirming diagnosis this week. Found a distortion on r breast in September 3d mammogram, continues to find that I needed a mastectomy. Three lymph nodes removed from the armpit. Was to start chemo and then diverted to Pet scan. Found suspicious spots in my hips. Having a bone biopsy on Wed. The current plan is hormone treatment for 6 months, then chemo if not responding. The spots found were pin prick size.
Had lumpectomy 4 yrs ago on l side. Caught by surprise to reoccur.
Anyone here with Mba? Feeling a little scared and uncertain.