Sperling Medical Group

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If you have bone mets, peer support can bring comfort.

One of the most discouraging aspects of being diagnosed with cancer that has spread to the bone (bone metastasis or bone mets) is feeling alone. Whether the news comes as a shock because your doctor believed “we got it all out” or you were initially diagnosed with Stage !V disease and therefore expected cancer spread, you feel like you’re in a minority of cancer cases. No matter how caring and sympathetic your medical team is, chances are none of them have had cancer, let alone bone mets. It may help to connect with someone who has experienced what you are going through.

Thousands of others who have had bone mets and are currently dealing with this condition want to take advantage of peer support. What does that mean? According to consultant Sherry Mead, it is “… a system of giving and receiving help founded on key principles of respect, shared responsibility, and mutual agreement of what is helpful.” There are many national and local organizations that offer peer-to-peer opportunities to give and receive hope, inspiration and encouragement. Some of them are specific to the particular primary cancer involved (breast and prostate are the most common cancers with bone mets) while others are more general, like many online support forums. Peer support may be in-person or by phone, email, and online posts. Also, check with your cancer center for local support group meetings.

The Sperling Medical Group recognizes that dealing with the anxieties and pain of bone mets can make patients feel isolated. We offer the following resources as a way to start exploring the abundant world of bone mets peer support:

Breast cancer bone mets – The American Cancer Society’s Reach to Recovery Program matches breast cancer survivors, including advanced disease patients, with trained volunteers for phone or face-to-face support at https://www.cancer.org/treatment/support-programs-and-services/reach-to-recovery.html. For those who prefer internet contact, there is an online discussion forum at https://www.bcmets.org/
Prostate cancer bone mets – A “virtual support group” for patients with advanced PCa/bone mets is provided by http://www.ancan.org/. UsToo International has over 200 affiliated support groups; though not specifically for bone mets, these monthly meetings have members with advanced PCa/bone mets, and groups are listed at http://www.ustoo.org/Support-Group-Near-You. UsToo is also affiliated with https://www.inspire.com/ where there are many PCa discussion communities for online peer support.
Bone mets in general – Inspire.com, an extensive peer-to-peer discussion forum, has more than one thread dedicated to living with bone mets. One of the larger threads can be found at https://www.inspire.com/groups/advanced-breast-cancer/discussion/bone-mets-and-long-term-survival/. You will have to register to participate on the site, but it can be very worthwhile.

Remember that you are not alone. Sharing stories, experience and ideas for high quality of life can contribute much to a more positive outlook when dealing with bone mets.

If bone pain becomes a problem, there are many ways to manage and help minimize discomfort. For durable pain relief with no surgery, radiation or drugs, the Sperling Medical Group offers MRI-guided Focused Ultrasound (MRgFUS) using the ExAblate® MRgFUS system. For more information, contact our Center.

Bone mets