Resources in Here Be Dust

First, a quick update. My quarterly appointment with my oncologist went well. We agreed that as long as I can manage my carpal tunnel exacerbations, no changes need to be made. But if conditions worsen, he wants to make sure that I indeed have CTS, which would mean getting tested by a neurologist. (I had been diagnosed with CTS based on plain physical observation by a nurse back in the early 90s, which confirmed my self-diagnosis.) We can also try switching my AI, but I told him I’m not ready to cry uncle on the anastrazole yet. I know full well that they all come with side effects, so manageability is the bottom line here.

I enjoy these follow-up visits in great part because they include happy reunions with the staff, complete with boisterous greetings (“Hey! How are you?”). They’ve seen me bald and pale; now they get to see me with my wild chemo curls. Due to a general procedural change, I now go to the chemo bay rather than the lab to get my port flushed, so I get to say hi to the nurses who had cared for me so intensively. It’s also a pensive experience, sitting a few feet away from the chairs I had occupied last year: intimately familiar yet another world. Even while getting my port flushed, I almost felt as though I had dreamt those six months of infusions.

Tomorrow I will guest-facilitate my breast cancer support group, so I got to choose the topic. Immediately I came up with the idea of discussing and sharing resources (both online and offline), recording suggestions on a large pad on an easel so that we could each copy down what is said.

Over the past 21 months, ever since my diagnosis, I have been compiling my own list of online cancer/breast cancer resources. Part of that collection became my handout (I’ve omitted some general medical sites and articles specific to my interests). I reproduce that list below with active links. If you’ve come across resources that you’d like to recommend, please let me know – and thanks!

Selected Online Cancer/Breast Cancer Resources

American Cancer Society: http://www.cancer.org
Information Center and other resources:
http://www.cancer.org/aboutus/howwehelpyou/contactus/index

American Society of Clinical Oncology: http://www.asco.org

National Cancer Institute: http://www.cancer.gov
Annual report to the nation on the status of cancer:
http://www.cancer.gov/research/progress/annual-report-nation
Tumor grade fact sheet:
http://www.cancer.gov/about-cancer/diagnosis-staging/prognosis/tumor-grade-fact-sheet

American Association for Cancer Research: http://www.aacr.org/

Johns Hopkins
Johns Hopkins Kimmel Cancer Center Patient Guide:
http://www.hopkinsmedicine.org/kimmel_cancer_center/patient_information/Patient%20Guide%20Final.pdf
Parts are specific to Johns Hopkins, but this guide includes many useful tools.

Cancer Support Community: http://www.cancersupportcommunity.org/

Livestrong: http://www.livestrong.org/

Breast Cancer Guides
American Cancer Society: Detailed breast cancer guide (The ACS also has detailed guides for many other cancers):
http://www.cancer.org/cancer/breastcancer/detailedguide/index

American Cancer Society: Guide to breast cancer post-surgical exercises:
http://www.cancer.org/cancer/breastcancer/moreinformation/exercises-after-breast-surgery
American Society of Clinical Oncology: Breast cancer guide:
http://www.cancer.net/sites/cancer.net/files/asco_answers_guide_breast.pdf
National Cancer Institute: Breast cancer treatment: http://www.cancer.gov/types/breast
Johns Hopkins: Breast cancer and breast pathology: http://pathology.jhu.edu/breast/index.php

Chemotherapy
American Cancer Society Guide to Chemotherapy: http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/chemotherapy/understandingchemotherapyaguideforpatientsandfamilies/index
American Cancer Society side effects worksheet and other tools to monitor treatment: http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/toolstomonitortreatment/index
American Society of Clinical Oncology: Understanding Chemotherapy:
http://www.cancer.net/navigating-cancer-care/how-cancer-treated/chemotherapy/understanding-chemotherapy
National Cancer Institute: Chemotherapy and You: http://www.cancer.gov/publications/patient-education/chemo-and-you
OncoLink Chemotherapy Primer: https://www.oncolink.org/treatment/article.cfm?aid=495&id=224&c=142
WhatNext: What to bring to chemo: https://www.whatnext.com/blog/posts/be-prepared-22-things-to-bring-to-chemo
WhatNext: What to bring to chemo, part 2: https://www.whatnext.com/blog/posts/things-to-bring-to-chemo-part-ii

Radiation Therapy
American Society of Clinical Oncology: Radiation side effects:
http://www.cancer.net/navigating-cancer-care/how-cancer-treated/radiation-therapy/side-effects-radiation-therapy
Robert Boissoneault Oncology Institute: Navigating Cancer, Part 2 (video):

Survivorship Tools
American Society of Clinical Oncology: Survivorship Care Patient and Family Resources:
http://www.asco.org/practice-research/survivorship-care-patient-and-family-resources
National Cancer Institute: Coping With Cancer: http://www.cancer.gov/about-cancer/coping/survivorship
Johns Hopkins: Breast cancer survivorship resources:
http://www.hopkinsmedicine.org/breast_center/treatments_services/survivor_care/index.html
Johns Hopkins: Breast Cancer Video Gallery/Survivorship Online Seminar Series
http://www.hopkinsmedicine.org/breast_center/patient_information/videos/survivorship_seminars.html
Journey Forward: http://www.journeyforward.org/ – Provides survivorship planning tools for both patients and health care providers.

Help with Forms and Recordkeeping
American Society of Clinical Oncology Medical Forms: http://www.cancer.net/navigating-cancer-care/managing-your-care/medical-forms
DIY Medical Binder from Lisa Bonchek Adams (1969-2015):
http://lisabadams.com/2013/01/23/day-23-the-must-have-medical-binder-the-key-to-being-an-organized-patient/
Patient Decision Aids from Ottawa Hospital: https://decisionaid.ohri.ca/decguide.html
Planetree Patient Preferences Passport: http://planetree.org/planetalk/the-planetree-patient-preferences-passport/

Online Cancer Communities (including forums, support, and other resources)
WhatNext: http://www.whatnext.com
Cancer Survivors Network: http://csn.cancer.org/
My Cancer Commons: https://my.cancercommons.org/ – A website to collect cancer information donated by patients and caregivers to further advance research.
Association of Cancer Online Resources: http://acor.org/
Cancer Q: http://www.cancer-q.com/
Cancer Connect: http://news.cancerconnect.com/

A directory of healthcare tweet chats, including those related to cancer:
http://www.symplur.com/healthcare-hashtags/tweet-chats/

Online Communities Specific to Breast Cancer (includes resource-rich websites)
Breast Cancer Social Media (#BCSM): http://bcsmcommunity.org/
– #BCSM holds tweet chats Mondays at 9 p.m. Eastern
Breastcancer.org: http://www.breastcancer.org
Living Beyond Breast Cancer: http://www.lbbc.org/
Breast Cancer Action: http://www.bcaction.org/
My BC Team: http://www.mybcteam.com/
Young Survival Coalition: https://www.youngsurvival.org/
Male Breast Cancer Coalition: http://malebreastcancercoalition.org/
IBC (inflammatory breast cancer) Network: https://www.theibcnetwork.org/

Metastatic Breast Cancer
Metastatic Breast Cancer Project: https://www.mbcproject.org/ – Spearheaded by the Broad Institute of Harvard and MIT, the MBC Project is direct genomics research focused solely on metastatic breast cancer. This project seeks to be a game-changer on many levels, not least the level of patient participation and collaboration. There will also be a chance for non-metastatic breast cancer patients to participate and contribute.
Metastatic Breast Cancer Alliance: http://www.mbcalliance.org/
Metavivor: http://www.Metavivor.org
MET-UP: http://metup.org/

BRCA mutations, hereditary breast and ovarian cancer (community and info)
Hereditary Breast and Ovarian Cancer: http://www.cancer.net/cancer-types/hereditary-breast-and-ovarian-cancer
BRCA Fact Sheet: http://www.cancer.gov/cancertopics/genetics/brca-fact-sheet
FORCE online community: http://www.facingourrisk.org/index.php

Lymphedema
Peninsula Medical: free lymphedema alert band:
http://www.reidsleeve.com/alertband.htm
Managing Lymphedema: http://nursing.onclive.com/web-exclusives/Managing-Lymphedema-Educate-Assess-and-Interveneand-Quickly
Lymphedema Treatment Act (introduced in the House in January 2014 and still seeking co-signers in Congress): http://lymphedematreatmentact.org/
LympheDivas: http://www.LympheDivas.com – fashionable compression garments

Oncology Physical Rehab
STAR (Survivorship Training And Rehab) program:
http://www.oncologyrehabpartners.com/
“Oncology Rehab Partners provides hospitals and cancer centers with the tools needed to provide evidence-based, reimbursable cancer rehabilitation to survivors who suffer from debilitating side-effects caused by treatments.”

Palliative Care
(Palliative Care begins from the day of diagnosis. It is not just for end of life.)
National Cancer Institute, Palliative Care in Cancer: http://www.cancer.gov/cancertopics/factsheet/support/palliative-care
– Includes link to a directory of palliative care specialists.

Breast Cancer Reports
The Breast Cancer Landscape (Department of Defense Breast Cancer Research Program):
http://cdmrp.army.mil/bcrp/pdfs/bc_landscape.pdf
National Comprehensive Cancer Network Guidelines for Patients for Stages I and II Breast Cancer:
http://www.nccn.org/patients/guidelines/stage_i_ii_breast/index.html#2/z
Metastatic Breast Cancer Landscape Analysis:
http://www.mbcalliance.org/docs/MBCA_Exec_Summ_Landscape%20Analysis.pdf

Coordinating help among family and friends
Caring Bridge: http://www.caringbridge.org/ – Includes journal, guestbook, and planner for coordinating tasks

Local Financial Support
Citrus Aid: http://citrusaid.org/
Florida Cancer Specialists Foundation: http://foundation.flcancer.com/

General Financial Support
American Cancer Society: Finding and Paying for Treatment: http://www.cancer.org/treatment/findingandpayingfortreatment/index
American Society of Clinical Oncology: Financial Considerations: http://www.cancer.net/navigating-cancer-care/financial-considerations
Breastcancer.org: Paying for Your Care: http://www.breastcancer.org/tips/paying
Cancer Financial Assistance Coalition: http://www.cancerfac.org/
Livestrong: http://www.livestrong.org/we-can-help/#sthash.Higp59S7.dpuf
Cancer Care: http://www.cancercare.org/connect_workshops/439-managing_costs_of_living_with_cancer_2015-02-04
Freebies and Discounts for Cancer Patients: http://www.1uponcancer.com/freebies-and-discounts-for-cancer-patients/
Patient Assistance Programs for meds: http://www.needymeds.org/

Yvette0516, a member of WhatNext.com, has compiled these lists of financial resources:
https://www.whatnext.com/questions/financial-resources-part-1-of-8
https://www.whatnext.com/questions/financial-resources-part-2-of-8
https://www.whatnext.com/questions/financial-resources-part-3-of-8
https://www.whatnext.com/questions/financial-resources-part-4-of-8
https://www.whatnext.com/questions/financial-resources-part-5-of-8
https://www.whatnext.com/questions/financial-resources-part-6-of-8
https://www.whatnext.com/questions/financial-resources-part-7-of-8
https://www.whatnext.com/questions/financial-resources-part-8-of-8
https://www.whatnext.com/questions/financial-resources-a-good-one-for-lodging
https://www.whatnext.com/questions/financial-resources-child-and-elder-care
https://www.whatnext.com/questions/financial-resources-clinical-trial-costs

Workplace Support
Anthem: Workplace Transitions for People Touched by Cancer: http://thinkanthem.com/insight/anthem-launches-workplace-transitions-people-touched-cancer-etoolkit
Cancer and Careers: http://www.cancerandcareers.org/en
Cancer and Your Career: The Road to Preserving Employment Opportunity: http://www.axiumhealthcare.com/cancer-and-your-career-the-road-to-preserving-employment-opportunity/

Caregiver support
Help for Cancer Caregivers: http://www.helpforcancercaregivers.org/
Caregiving.com: http://www.caregiving.com – very active grassroots network. Holds #carechat tweet chats on alternate Sunday nights. Has podcasts, webinars, forums, groups, chats, and other resources.
The Caregiver Space: http://thecaregiverspace.org/ – another excellent grassroots network. Also has webinars, forums, etc.
Caregiver.com: http://www.caregiver.com – more corporate than the other two but also a good source of support. Sponsors one-day Fearless Caregiver Conferences across the US, free to family caregivers.

Oncology Periodicals (online subscription is free)
Cancer Network, home of the journal Oncology: http://www.cancernetwork.com/articles/oncology-table-contents
Oncology Times: http://journals.lww.com/oncology-times/Pages/resourcecenter.aspx
The ASCO Post: http://www.ascopost.com/
Artemis (Johns Hopkins Breast Center): http://www.hopkinsbreastcenter.org/artemis/

Other
Oncology Tube: cancer and oncology video sharing site: http://www.oncologytube.com/
150 Breast Cancer Blogs: http://list.ly/list/MsP-150-best-breast-cancer-blogs
Imerman Angels: One-on-One Cancer Support: http://imermanangels.org/
Cleaning For a Reason: http://www.cleaningforareason.org/ – “Our mission is to give the gift of free house cleaning for women undergoing treatment for any type of cancer.”