Surviving Metastatic Cancer.

[lilia47]

I was BC survivor for 16 years. Invasive ductal carcinoma. Had lumpectomy and 28 radiations and 5 years with tamoxifen/arimidex. Last year cancer came back as Metastatic BC. Had 16 chemotherapy treatments, four surgeries included mastectomy. I was also told that I have lupus. My Journey ended one month ago with 33 radiations. I was told by the surgeon that I may have a recurrence. I need to know more about this type of cancer. Thank you. Blessings.

[Nancyjw]

Hello Lilia47, I also am a BC survivor who recently learned I now have metastatic BC. Wall of fear hit me -- until I found this site and have learned so many people with MBC are surviving years after the diagnosis! My fear has lessened and the encouraging messages on this site is making such a difference to my mental health!!! Knowledge is power but the most important piece of knowledge I have learned so far is that people survive the horrible treatments and side effects and we can look forward..... Remember you have survived 16 years and prayers for you for another 16 years!

[lilia47 in reply to Nancyjw]

Thank you Nancy for your thoughts. We can't live in fear. I believe in God and He know when the time will come. I wish you the best and May the Lord heal us and send us the cure for cancer. God Bless you.

[Kats3]

Hi lilia47,

I would say that a good place to start learning about your BC is with your Oncologist. He should have the most knowledge about your metastisis. Where did it metastisize to? Where were you radiated the 2nd time around? What subtype are you? Ex. ER+, PR+ Her2-. Do you have this information? Look at your Pathology Report. The fact that you survived cancer-free for 16 years is fabulous!

Are you currently on any drug treatment plan? I don't think your journey has ended. It continues as it does for all of us who have metastasized BC. You need to be under an Oncologist's care for the rest of your life.

You can always look up your type of BC on the internet or in books. But the best thing to do in my opinion, is to have a heart-to-heart discussion with your Oncologist. Ask him/her what types of treatments are available to you now or clinical trials that you may be eligible for.

Please let us know more about what steps you're taking in going forward in your journey. We care.

Blessings to you too! Kats2

[lilia47 in reply to Kats3]

I will look for the information I have it somewhere in my papers. I did 1 I am not under any kind of medication. I have an appointment with my oncologist in May and I will ask. Thank you for the information you provided and I will keep you informed. I hope and pray that you will be ok and let us up for a miracle and God will send us the cure for cancer.

[Ibelong]

I was diagnosed metastatic right out of the gate. IDC ER/ PR + and Her2 -. My tumor was a grade 3. Meaning it was very aggressive. My mets were found in 3 rib bones and a spot in the pelvic bone. My diagnosis was 10 years ago May 9th. I was 36. Since my diagnosis I have had chemotherapy, hormone therapy, therapeutic radiation and targeted therapy. I also have had two recurrences. One 7.5 yrs after initial diagnosis. It was found in my chest and lung. The second a year later in the bone of my shoulder, 2 spots in pelvic, different from initial diagnosis, and 2 vertebrae. All scans show clear except the bone. Currently taking targeted therapy they are looking stable.

Once you are metastatic you will be on treatment for the rest of your life. I know that is a scary proposition. The reason is your cancer has decided to take a trip in your circulation system and even if you cannot see it on scans or other imaging it will be a constant presence. It may stop and grow anywhere in your body at anytime. Most common in bone. However, the new therapies and treatments are helping to keep the cancer from growing for many years. You may have to go through a few different treatments. Your cancer has a 10% chance of changing hormone receptor. For example if you are positive it may change to negative. Which is how they match your treatment. Also it is like a virus in that it can learn to adapt to the medication and resist it and begin to grow and spread.

My best advise is to always keep a record of all concerns or aches and pains. Anything that last longer than 2 weeks and or has come out of nowhere contact your physician. Note, the onset, what you where doing to notice it, what helps it go away, what makes it worse and when does it happen most. Very important tool along with communication with your oncologist.

I am very sorry you have to walk this path. May you have the best of luck with many years of good health.