Just Diagnosed- Get Prepared

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  • MBPooch
    MBPooch Member Posts: 40
    edited December 2017

    Good news on the new biopsy date, I know how frustrating it is to wait for results! Good luck on Friday and stay in touch!

  • 4646linda
    4646linda Member Posts: 1
    edited December 2017

    Hi: My wife found a large bump and had a golf ball sized one taken out 1.5 years ago. The doctors removed three nodes and two of them also had cancer and she was stage three. We decided to go totally alternative, no chemo or radiation. We started in an alternative hospital in Mexico and was living there for a month. We have been at home now for over a year from those treatments. The local doctors cannot find any cancers nor lump/bumps. She had her blood tests this week and her CA 15-3 test came back at 16. We have been using several natural treatments at home and are hopeful that she has beat this.

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited January 2018

    4646linda, hi only now saw this post. I'm the thread starter. Your post should have been placed on the alternative thread. They're actually two forums This link is to the Alternative forum

    https://community.breastcancer.org/forum/121

    This link is to the Complimentary and Holistic forum

    https://community.breastcancer.org/forum/79



  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited December 2017

    Repost of Shepkitty

    Dec 3, 2017 01:48AM - edited Dec 3, 2017 01:52AM by shepkitty

    Oooops.....many apologies, I gave the wrong link for Share. It is www.sharecancersupport.org Share is a fantastic resource. The kind ladies there were a tremendous help to me when I was first DX'd. Many Share members are active on BCO - that's how I was guided here way back when!

    Nothing can compare to the special relationships that are formed on BCO. Sometimes folks need more specialized guidance than we can offer. Share can provide the professional help that is beyond us. They also are very active in research and continuously publish updates. And I do not recall ever seeing a "study" there on how our attitudes affect the severity of our SEs from hormonal therapies, ah-hum. (looking of to the side humming innocently)

    From the Share About us page:

    We are breast and ovarian cancer survivors and we're here to help you. We know what it's like to have early stage, recurrent, and metastatic disease. If you've been diagnosed with breast or ovarian cancer, or if you simply want to know more about these diseases, we can help.

    Mission

    SHARE Cancer Support's mission is to create and sustain a supportive network and community of women affected by breast and ovarian cancers. SHARE Cancer Support brings these women and their families and friends together with others who have experienced breast or ovarian cancer, and provides participants with the opportunity to receive and exchange information, support, strength and hope.

    SHARE Cancer Support's work focuses on empowerment, education and advocacy to bring about better health care, an improved quality of life, and a cure for these diseases.

    All Services are Free of Charge

    We provide telephone support, support groups, educational programs, and advocacy activities. Call toll-free 844-ASK-SHARE (844-275-7427) to talk to someone about breast or ovarian cancer -- in English, Spanish, and 10 other languages.

    Telephone Support

    Call 844-ASK-SHARE (844-275-7427), and we can help you face the emotional and practical issues that come with breast or ovarian cancers. These are things like handling treatment side effects, talking to friends and family, dealing with insurance companies, or feeling weaker as chemotherapy progresses.

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited December 2017

    Member Bestbird attended the 2017 SABCS and posted some notes for review. She also noted that her new book on MBC is available free and instructions on how to obtain it

    https://community.breastcancer.org/forum/8/topics/860853?page=1&post_creation=true#post_5107279


  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited February 2018

    Bump


  • msphil
    msphil Member Posts: 185
    edited March 2018

    hello I too have a really good book to read and Inspire on Amazon.com and Barnes&Noble 'The Healings Of Breast Cancer', A Physical and Spiritual Healing Of My Body and Soul. author Mrs Phyllis Alexander some proceeds go to American Cancer Society. God Bless Us All

  • Curious60
    Curious60 Member Posts: 3
    edited March 2018

    OMG ... I am new to this world...  Sooooo many helpful tips to read..  especially about the bills.  My other half lives in the world of "go to work, come home, eat, rest, sleep for the next day...."  I do a good deal amount around the house, now that I am retired (just retired 2 weeks before my diagnosis).. happy retirement ehh??

    All of this is remarkable.  Right now I feel like I am running in circles.  This "thing" is a business all of it's own.

  • rdeesides
    rdeesides Member Posts: 233
    edited March 2018

    Curious60 - Having cancer is a full time job for sure.

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited March 2018

    Curious, I wrote those suggestions a calendar year after both my DH and I were into cancer. The only one I didn't use was the ledger re: money flow. Wish I had. It would have been so much easier to track the money flow.

    If you come up with any questions, I check in every few days. If I'm not here others will pop in to answer questions.

    Have you had surgery yet?


  • 2BoobiesNoMore
    2BoobiesNoMore Member Posts: 3
    edited March 2018

    OMG.. that was more overwhelming than my diagnosis.. I must take baby steps

  • 2BoobiesNoMore
    2BoobiesNoMore Member Posts: 3
    edited March 2018

    So overwhelming. Just diagnosed Feb, 2018. I am 64, and run a business.. i still work 9-10 hours a day, and do not know how i will get thru this. Very lucky, caught on routine screen.. stage 0 ductal (?) Don't know all the new words yet. Double mastectomy scheduled, though.. should cure with no radiation or chemo... i live in a world where no one talks about these things! Like disappearing in the 60"s when a young girl got pregnant. I haven't taken a 2-week vaca for 20 years... how do I say I have to be out for a few weeks?? I am the strong one... not the one who needs help and support..😢

  • moderators
    moderators Posts: 8,699
    edited March 2018

    Hi 2BoobiesNoMore, and welcome to Breastcancer.org,

    We're so sorry for the reasons that bring you here, but we're really glad you found us. We know this information can certainly be overwhelming when you're first diagnosed, but we can promise you it will get easier. The more you learn about your diagnosis, the more things will start falling into place, and the better you'll feel about your treatment and recovery.

    It sounds as though you were diagnosed with Stage 0 Ductal Carcinoma in Situ (DCIS), does this sound correct? If so, this is a very treatable diagnosis! You can read more about DCIS here on the main Breastcancer.org site. And, you can chat with others about their experiences with this diagnosis on the DCIS forum. Start a thread there to introduce yourself, and you're sure to get great support!

    Also, it's understandable to have concerns about how your job will be affected by your diagnosis and treatment -- the Breast Cancer and Your Job section on the main site has lots of great advice on working during treatment, talking to your boss and co-workers about your diagnosis, and taking time off work for treatment.

    We look forward to hearing more from you soon, and supporting you throughout your diagnosis and treatment.

    --The Mods

  • 2BoobiesNoMore
    2BoobiesNoMore Member Posts: 3
    edited March 2018

    Oh my gosh. Thank You! for the links and resources. I appreciate your comments so much.

    ThumbsUp

  • jpBCfree
    jpBCfree Member Posts: 72
    edited April 2018

    FYI

    My breast cancer surgeon, Dr. Kristi Funk (who is amazing) has written a book called BREASTS: THE OWNER'S MANUAL which is a guide to reducing cancer risk, making treatment choices and optimizing outcomes. There is nothing like it out there. I've read a pre-release copy and it's brilliant-- so straightforward and practical-- I wish I had read this years ago and maybe I wouldn't need to be on this board! :0

    She offers a free download of one chapter on her website so you can see for yourself...I highly recommend for those of us going through this BC journey as well as cancer-free women to increase odds of staying that way. It's a great mom's day gift for women in your life.

    More info and pre-order here https://pinklotus.com/elements/breasts-the-owners-...

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited April 2018

    Thanks jp :)



  • Sblackmon47
    Sblackmon47 Member Posts: 1
    edited April 2018

    thank you so much

  • moderators
    moderators Posts: 8,699
    edited April 2018

    Dear Sblackmon47,

    Welcome to the BCO community. We hope that you will share a bit of your story and help our members get to know you. We hope you will find support here. Let us know how we can be of assistance. The Mods

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited April 2018

    Hmm no idea why the Mods deleted jp's post. ????

  • Maemay
    Maemay Member Posts: 1
    edited May 2018

    I just had bilateral mastectomy on April 30, 2017. Cancer found in left breast. Er+ HER2 negative. No lymph node involvement, clear margins. However , cancer was > 5cm. I’m praying for no chemo . Who has insight?

  • moderators
    moderators Posts: 8,699
    edited May 2018

    Hi Maemay,

    We are sorry you have had to join us here, but glad you found our community. There are a number of factors that determine if you'll need chemotherapy. One step at a time.

    Thinking of you and all the others here Medicating

    The Mods

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited May 2018

    Maemay, They're so many threads. Look at the Just Diagnosed Forum. Wander through them. You may have to lurk to see if it's a topic that fit's your need.

    You've had the surgery with a breast surgeon. You should also have a Medical Oncologist. abbreviated MO. The MO is the one that will determine what your treatment should be from here on out. If you don't have a MO, ask for a referral. The breast surgeon should not be figuring it out. Surgeons are cutters. MO do the overall medical management. MO's will determine risk. MO's determine chemo recommendation. Mo's determine whether radiation is appropriate and then would refer you to a Radiation oncologist.(RO). But will still be doing the OVERALL management.

    MO's are the center of your treatment for the next few years. Good Luck.

    Try when you can to look at this thread from the beginning as time goes by, MANY have offered pearls of wisdom of logistical stuff that helps. Plus, they're links to other threads that help for particular things. But you are in recovery phase for the surgery and are healing. Healing is your focus right now. Blessings, sassy

  • Hopfull
    Hopfull Member Posts: 1
    edited May 2018

    May 16, 2018. I feel all types of emotions right now, but feel like I should be stronger at my age emotionally, however we've been hit with a lot this year all within a few weeks.

    I'm 71 and received my diagnosis today ILC. It's very small and I'll know more once I speak with the surgeon tomorrow. Everything is happening very fast, which I'm assuming is a good thing, but a bit overwhelming.

    My biggest concern is telling my youngest daughter who is 47 and under chemotherapy for breast cancer now; she's on her 4th session out of 5. Afterwards (4 wks) she has to go through radiation. She had a double-mastectomy 2 years ago and now the cancer is back. She & her husband wanted to fight the cancer 100% holistically. No one knows if this is why it came back, but it did. Every minute of everyday, I pray and think of her. She would not accept my not telling her. I live in PA with a great husband and she lives in Colorado, 3 beautiful children and a husband (not much support from him). She's a real fighter and I've been amazed at her strength. I hate not being with her, but I also had surgery 3 weeks ago for a pacemaker.

    Just like most of you young, courageous ladies, I did not expect this for myself, let alone my daughter. I was under the myth that breast cancer only hits those that have had Mothers who had BC and if you're older, you don't need to be concerned. On my Dad's side, I had 2 aunts die from BC, but not my Mom who is 98 and always in very good health including now.

    I've been healthy and active up until two years ago and I don't look sick. However, the bottom line is that I'm scared for so many reasons. I don't know this Dr, but her reviews are good. I'm afraid of going in for surgery again, I'm afraid of the cancer coming back or being somewhere else. I can't think straight and I keep crying. I came upon this site and felt it might help.

  • edwards750
    edwards750 Member Posts: 1,568
    edited May 2018

    Bless your heart Hopful. So sorry you and your daughter are dealing with this insidious disease. For the record my sister and I both have BC as did our mother. My oncologist said 70% of BCs are not genetically driven. Hard to believe since my sister and I have always been considered high risk. Of course we could be carrying the gene. Neither one of us has been tested.

    As for telling your daughter. I would eventually but not sure about now given what she’s going through. Btw my sister’s came back too. She had a MX and was 4 years out. I will be 7 years out this August. I have a mammogram scheduled for next Friday so let the anxiety begin. We know there are no guarantees.

    Try and keep the faith. I know it’s hard because it’s hard to comprehend why seemingly healthy people like yourself draw the unlucky card but BC isn’t discriminatory. More and more young women with small children are being DX every day. That’s really sad.

    Keep us posted.

    Diane


  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited May 2018

    Hopful, sorry that you are here, you're words and sorrows are well known. I suggest going to the STeam Room-------for dealing with suggestions and the anger.It is a great group. I will bring back the link. It is a very specific place to voice anger.

    It a;so can be a place to find answers

    I will be back with the link Back

    https://community.breastcancer.org/forum/102/topic...


  • moderators
    moderators Posts: 8,699
    edited May 2018

    Dear Hopfull,

    First, we want to welcome you to Breastcancer.org. We're terrible sorry for the circumstances that bring you here, but we're glad you've found and joined this wonderful Community. As you can already see, you'll get tons of support and understanding here, so please stay connected, keep us posted on how you're doing and remember, you are not alone - we are all here for you sending nothing but good thoughts!


    Best wishes,

    The Mods

  • Dmarsh329
    Dmarsh329 Member Posts: 1
    edited June 2018

    wonderful, valuable info and I'm glad I seen it on day 2.

    Thank you

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited June 2018

    Dmarsh---whooohooooo me too. Come back with questions if you have them and I or someone will get you off in the right direction :)

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited June 2018

    Found out abbout a couple three patient assistant programs b/c of my macular stuff.

    Gooddays Foundation......... no funding for BC this year, but may have drugs or other condition's that are covered

    https://www.mygooddays.org/

    Patient advocate Foundation---it's a very extensive web site.

    http://patientadvocate.org/

    I've posted in the past about Need Med.org. Needy Meds is a great clearinghouse, but I have found it's not easy to use. It takes patience.

    https://greatnonprofits.org/org/needymeds

  • Artista964
    Artista964 Member Posts: 376
    edited July 2018

    "Just 53 days after saying 'I do', Tommy was diagnosed with stage 3 cancer. Determined to help her husband, Jessica created the Better Book to track questions, medications and more. That book is now used by patients across the country."

    https://www.google.com/amp/s/www.ktvb.com/amp/article?section=syndication&subsection=heartthreads&headline=wifes-better-book-for-husband-battling-cancer-helps-hundreds&contentId=507-574365308