Tips for newly diagnosed

Hi everyone! I am new to this site and looking to gather information from those of you who are going through all that is involved with breast cancer. I was diagnosed with lobular carcinoma in December 2016 and waiting on my second surgery. The first surgery did not get all of the cancer and found it is an aggressive cancer that has spread to my lymphnodes. I am in stage 2B N1. I will be having a double mastectomy, reconstruction, and chemo port placement in mid March 2017. I am in need of resources to help me financially with the costs associated with this diagnoses. I have met with a social worker and financial advocate at my hospital. They have failed me several times and have done nothing to help me. I am just looking for a little direction in where to turn for help. I would greatly appreciate any feedback!

Be Blessed My New Friends!

Bobbie

12 Replies

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  • Where do you live? If you live in the USA i can give you some suggestion To start off with CancerCare is good place to contact. On the local state level there are small regional charities who might be able to help you Respond to my post or put in a helpline request at SHARE on their website and I will get back to you

  • Thank you for responding. I live in Florida. I will check out Cancercare. I found a list of resources at thepinkfund.org that I am going to look into. The problem i am running into is documentation. I am a full time graduate student (on a leave of absence) and I am self-employed (unable to work due to surgeries etc.) I have moved in with my parents to eleviate the financial burden during the first couple of months when I was without insurance. I have insurance now but no way to pay the thousands of dollars I incurred during that time. I pay taxes at the end of the year but do not have a "check stub" to show proof of my employment. Most of the charities want both the tax info and a check stub. I am continuing to do research. I appreciate you reaching out to me.

  • Maybe on of these organizations can help you

    Sandy B. Muller Breast Cancer Foundation, Inc.

    P.O. Box 565371

    Miami, FL 33256

    305-255-1385

    Dr. Linda Marraccini, Founder

    sandybmullerbreastcancerfou...

    sandybmullerbcf@bellsouth.net

    Sandy B. Muller Breast Cancer Foundation, Inc. provides recently-diagnosed, currently in treatment patients, who live in Miami-Dade County with help with basic living expenses such as mortgage and rent payments, medical insurance premiums, sentinel node biopsy, transportation costs to and from medical appointments, child care payments, food and other life necessities.

    Ribbon Riders

    P.O. Box 952283

    Lake Mary, FL 32795

    407-796-7465

    Carmie and Karen, Co-founder of Ribbon Riders

    info@ribbonriders.org

    ribbonriders.org

    Ribbon Riders provide emergency financial assistance to breast cancer patients which includes: medical co-pays, mortgage/rent, utilities, groceries or even gas to get to treatments. Awards are limited to residents of Orange, Osceola, Seminole, Lake Volusia, Brevard, Marion, Sumter, Flagler and Polk counties in Florida.

    North Central Brevard Salvation Army

    1218 West Main Street

    Titusville, FL 32780

    Social Services, 321-269-3110

    uss.salvationarmy.org/uss

    uss.ncbrevard.org

    The Salvation Army Social Services Office offers assistance with rent and mortgage (evictions), utilities (final notices), and other basic needs. Please call for an appointment.

    Florida Breast Cancer Foundation

    11900 Biscayne Boulevard, Suite 806

    North Miami, FL 33181

    305-631-2134 or 877-644-3222

    Russell Silverman, Executive Director

    ceo@floridabreastcancer.org

    floridabreastcancer.org

    The Florida Breast Cancer Foundation (FBCF) is dedicated to ending breast cancer through advocacy, education, and research.

    They award Education Grants for programs that empower women to play an active role in their breast health with particular interest in programs that target individuals with language and cultural barriers; individuals who live in underserved areas; and intervention that engages health care professionals.

    Connie J. Goodale Breast Cancer Foundation

    4300 Jog Road, #541313

    West Palm Beach, FL 33416

    Debra Moore, President

    561-440-0052

    conniefoundation.org

    The Connie J. Goodale Foundation’s mission is to assist local families in the Palm Beach area affected by breast cancer in overcoming problems relating to this disease.

    The Donna Foundation

    1015 Atlantic Boulevard, Suite 144

    Atlantic Beach, FL 32233

    904-242-0034

    Donna Deegan, Founder/President

    info@thedonnafoundation.org

    donnahickenfoundation.org

    The Donna Foundation raises money to be used exclusively for the critical needs of First Coast women living with breast cancer. DHF partners with Catholic Charities Jacksonville Regional Office, the largest social service agency in the area, to administer these funds.

    Cancer Alliance of Help and Hope

    P.O. Box 3038

    Tequesta, FL 33469

    Greta Jean Fischer, Project Director

    561-748-7227

    canceralliance@gmail.com

    cahh.org

    The Cancer Alliance of Help and Hope, Inc. provides assistance to breast cancer patients of all ages who experience financial problems while undergoing treatment. They provide grants for rent/mortgage, utilities, car payments, car insurance and health insurance. These funds are reserved for women living in Palm Beach County or receiving treatment there. Qualification are based on Susan B Komen income standards.

    I have many more listings so let me know if you need more help

  • I live in Brooklyn NY. Any help group you could suggest will be very helpful. Joyce

  • Where do you live? I'm new too. My bilateral mastectomy was Jan 19. I had full reconstruction and I'm very satisfied. I'm only 10 days out of first of four Chemo treatments. I've been quite sick.

  • Hi, I live in the Orlando, Florida area. I am having my bilateral done on March 20th. They are putting in expanders for my reconstruction but the final surgery won't take place until after my radiation. I have not started chemo yet. They are waiting until April 28th to allow my body to heal before starting chemo. Are you taking the Neulasta shot after your chemo? If so I was told to take Zyrtec for the bone pain it causes. I hate to hear you are sick. I have no idea how i am going to react to the chemo.

  • Several ideas: contact an organization called Family Reach. They help with rent, mortgages , utilities, etc. Set up a GoFundMe page and tell all of your friends and family so that they will publicize it to support you. Contact an organization called PRAYnksters; they organize flash mobs for people in need. Visit amp.insideedition.com to see how they raised $13,000 to help a woman suffering from cancer!!!!

    Are you religious? Ask the minister of your church to do a fundraiser for you, bake sale, etc.

  • Here's a tip for all newly diagnosed patients....You are the patient and remember to make sure you request copies of diagnosis and test results from doctors, as well as all of your labs. (When I started, I did not know you could do this. I really didn't. But, they are your records and you are going to need some of this information for items that you will be asked or that you will need to fill out.)

    If you have any insurance paperwork or cancer-related paperwork to fill out regarding staging, type of cancer. etc., it will be in that paperwork. I was assigned a case worker by the insurance company, a nurse, to help navigate care. She suggested this, but also asked me all sorts of questions at first, that were rifled off that I didn't know. Those reports will help answer the questions. I also wanted a record of my progress so I kept a folder. You may need to see a specialist later on, and you will have a mini summary of what has happened. No one can speak better and clearer about you than YOU.

  • Thank you so much for that information! I just had my bilateral mastectomy March 20th. I haven't had a lot of time to deal with all the rest of this or to even say thank you to everyone who has reached out to me. I appreciate you taking the time to give me this information. I am learning slowly how to navigate through all of this.

  • Bobbie,

    If you have any questions, please feel free to ask me. I went through the whole process (chemo, double mastectomy, chemo again!, radiation, a year of Hercepin, breast reconstruction, lympedema (in left arm - and two surgeries at MD Anderson Houston). I've also had probably every side effect you can think of and a few years ago I was diagnosed with an immune system disorder, which they said I was born with, but they don't really diagnose until people are in their 30s or 40s. I've also had soooo much fun with insurance companies. 🤥

    Laura

  • Thank you Laura, i am starting chemo April 28th. 8 wks of AC bi-wkly and 12 wks Taxol weekly. I also have Type 1 diabetes that I have had since I was 11. I am 46 today so it's a struggle trying to keep my blood sugar under control with my body trying to heal. I've already been told the chemo is going to do a job on that as well due to the steroids. They started the Reconstruction process when they did the mastectomy and I'm having pain with that as well. The expanders like to move and take residence in my armpits. You truly do not know what someone goes through until you've gone through it yourself. All of these things I never knew anything about. So many things no one talks about or even warns you about. You are a true warrior and one day I will be standing on that side with you.

  • Hi Bobbie. You might try your church- they can also refer you. Another resource would be any local breast cancer organizations, Komen or American Cancer Society. Some people use "GoFundMe". I don't know much about the process. My only other thought is to see if someone would help you with an online search. Kind regards, Tina

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