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    Breast cancer, how did you survive?

    Asked by WhatNextEmails on Monday, March 11, 2013

    Breast cancer, how did you survive?

    We need your help. This month we are putting together a collection of articles for those newly diagnosed on what actions survivors took to beat their specific type of cancer. Please take a few minutes to share your experiences and advice for those newly diagnosed, and your posts might just get included in our articles. Feel free to share whatever comes to mind. Here are some more specific questions to help get the juices going: What kind of support did you have? Were there things you did that really made a difference? How do you go about finding your medical care team? Who made up your team? What resources did you find that were most helpful to you?

    22 Answers from the Community

    22 answers
    • Ydnar2xer's Avatar

      I already had an oncologist, as this time was my 2nd time with breast cancer.

      However, one thing I did that worked out well was to pack a "Chemo Bag" with crossword puzzles, knitting, snacks, a blanket, etc. and leave it in the hall closet. Each week, I could grab it just before chemo and have everything I needed to get through my 4-hour sessions.

      over 5 years ago
    • DianaL's Avatar

      When I got my diagnosis from my PCP I already knew who my oncologist would be. They recommended a surgical oncologist for my lumpectomy. All of us were surprised that I had microscopic cells in two of my sentinel nodes. Bilateral mastectomy was my option! I had the most wonderful husband who has been with me every step of this journey. My family, friends and work associates were wonderful! They listened when I was down but turned to me and told me I was strong enough to get through this and they were right! My faith in God and how I looked at everything made me realize that I had no choice but to fight. I was lucky and did not have radiation! Chemo was Taxotere and Cytoxin for four sessions every three weeks. My chemo bag contained my Kindle, my blanket, lots of water to keep me hydrated and a neck pillow. I went to work after chemo on Thursday, had the Nuelasta shot on Friday morning (to me much worse than chemo), took my Claritin and kept on going! I am now 4 months out from chemo and 3 weeks out from the first part of reconstruction! God has been good to me and I have been blessed with this disease! If not for cancer I would have missed out on meeting so many wonderful people who had been through this and would encourage me and give me all kinds of tips on how to cope. This website has been a blessing! Life is good and I am so happy after this long year that it kind of scares me! The way I ended up looking at this was better me than one of my daughters. Good luck to everyone who has to go on this journey!

      over 5 years ago
    • karen1956's Avatar

      When people ask if they can help, tell them what you need....be speficic...I was lucky in that I had help from friends and my community....play dates for my daughter who was in grade 2 at the times, meals the week of surgery and the week of chemo, survivors calling me to tell me their stories (stories of hope, not fear), friends treating me as me instead of victim (doing the things we did before Dx), suggestions on what I would need post surgery such as button down tops, what to wear to radiation (2 piece outfits), offers to go to doctor appts with me if my DH was out of town so I didn't have to go alone, rides if I needed them.....as I think of more, I'll post again..

      over 5 years ago
    • Netsy's Avatar

      I had great support from my friends that really pulled together to meet any anticipated needs that came up! This is NOT the time to isolate oneself. I was the giver not the receiver for many years so this was very humbling. When I felt myself getting anxious about something, I started to pray. I learned to walk in faith!
      All my Doctors were recommended by other patients/friends which turned out to be great choices for me! Look for something positive in every situation and laugh everyday even if it's at yourself! Try not to give up things that are important to you! I continued my Bible Studies on Wednesday and tennis on Tuesday/Thursday, church on sunday! Continue to live

      over 5 years ago
    • SueRae1's Avatar

      I was shocked when I was diagnosed with stage 1 TNBC in Sept 2010. I was (and still am) in active treatment for advanced Kidney cancer which was diagnosed in July 2009. I called my oncologist who set up an appointment with my now Breast oncologist, I also saw a breast surgeon. I got a 2nd opinion as there was some question on how to handle my case - I had a lumpectomy in December followed by radiation treatment- which was something everyone agreed on.

      Last May a biopsy confirmed that a new lesion found on my liver (where I have my 2 kidney cancer lesions) was TNBC. I saw both my oncologist on the same day, and started treatment the next week. I also spoke with my 2nd opinion doctor who agreed with the treatment plan, and recommended I see a Breast Oncologist who "is doing interesting research and work with TNBC"

      I saw her at the beginning of July, and I am so glad I did. She agreed with my treatment plan, but most importantly she recommended specific genetic testing options to peruse. 1) have my pathology slides sequenced my Foundation medicine to see what mutations they could find in the cancers. Unfortunately they were unable to use my kidney slides. 2)sent me to a geneticist who specializes in cancer to find out what if any mutations I might have. I had a BreastNext Panel that showed no mutations, we are doing more testing now that we have the foundation medicine results to see if any of my genes have the same mutation found in my cancer.

      My advice to anyone with a cancer diagnosis 1)get contact info for members of your team - you never know when you may have a question or need clarification. I communicate via e-mail with my teams 2) for your first few appointments have someone with you and take notes, there's a lot of info coming at you. 3)go with you gut, if you do not like the doctor find some else. 4) get 2nd opinion - another pair of eyes and experience can only help you get the best possible treatment plan in place. also confirmation of your primary plan is very comforting. 5)use the social workers to see what services are available. 6)be prepared to hurry up and wait. Bring lots of reading material an ebook reader is great, music if you like, and food. I sometimes feel like I'm going on a one day camping trip on treatment day. 7)remember the staff is as unhappy, if not more so, then you are when things go awry and appointments start running late. Treat them with respect - and get to know them. Some of the nicest people I know work in the oncology and testing areas at Columbia Presbyterian. We see each other a lot, and always ask about how each other families. Thank them, their jobs are very hard to do.

      over 5 years ago
    • Nellie's Avatar

      My family was amazing during my chemo I had every 3 weeks 4 times. I tried to stay positive at ALL times. After the first chemo I didnt feel like myself and felt angry and i told everyone I'M DONE, NO MORE CHEMO. Of course I relented and I did finish all four rounds. I kept thinking to myself you have TO DO THIS. And now I'm glad that is all behind me now. My PCP gave me the results of my biopsy, then made the appointment for the oncologist and asked if I had a preference for a surgeon, I didn't have a surgeon, so she suggested a woman physician here in my town. Little did I know how highly recommended and an AWESOME surgeon she is!!! I did not see the oncologist until one week after surgery. I find that a little odd I think you should see oncologist and then surgeon. I have had wonderful doctors and nurses through out the journey. Most resources was probably the internet, Susan G Kommen was a very good one for me. And of course whatnext.com!!!!!!!!!

      over 5 years ago
    • Nancebeth's Avatar

      I just decided that I would live, no matter what. I had lost my mom and dad both to cancer and I was going to be the one that beat it.

      I decided on the most aggressive form of treatment and I managed to get through it alone, since my family was all deceased. My extended family and friends pitched in but ultimately, I made all og my health care decisions myself.

      I was lucky in that my plastic surgeon was a friend from elementary school and he helped me navigate the health care system and choose my team to save my life.

      My attitude made the difference in whether I would survive or not. I did everything in my power to stay healthy during surgery and chemo. I made decisions that I thought ere the best ones for me, whether my friends, doctors or other breast cancer patients/survivorsd agreed with me. I took a proactive role in my treatment. I turned to websites like whatnext and some breast cancer blogs for advice and support. I started my own blog at www.breastcancerbattlescars.net and I tweet as the Nippleless Wonder (@Nancebeth). I am a volunteer mentor for Imerman Angels.

      I am a survivor and I want to be the inspiration for others to survive as well.

      over 5 years ago
    • jimmy60011's Avatar

      Whatever you do, get a second opinion! Or even a third opinion!! Get out of town, away from the local community hospital. Go to a university medical center. No one told me these things. I was told that it was a tiny stage I BC. After surgery, I was told it was stage IIA and the sentinel node was positive. So the surgeon took a total of 12 nodes - 11 were negative, he said. I took the first guy's diagnosis and was pushed through surgery in two weeks. Then he left town for a three week vacation and I HAD NO DOCTOR FOR FOUR WEEKS! During that time I got an infection that raged for about seven weeks. Pictures are available if you want to see the horror I lived through. I am still in pain - 2 years later. Don't have full use of my arm. I live alone. No support system. So I took what was offered. BIG MISTAKE. They only know two words: cancer and radiation. When I used my head and refused radiation (to protect my heart and lung) I was dropped like a hot potato. Finally got to see an oncologist nearly three months after surgery. I am now a walking encyclopaedia about breast cancer. I constantly read and research. Was very happy to see the article on aol home page today about New Orleans hospital research. Time magazine, April 1, 2013, has wonderful article on cancer treatments. Celebs in Hollywood are demanding, and getting, cancer cures! I won't be caught off guard again!! I don't have glowing stories to share. But I have learned more than I ever dreamed that I would. NO, I don't consider cancer my friend as some people do. It's my enemy and I will treat it as such.

      over 5 years ago
    • Snooks' Avatar

      I think attitude is so very important when you hear the words "you have breast cancer", I didn't give a thought of how I was going to cope; my main concern was how to tell my husband and daughter. They immediately rallied around me and were my biggest supporters. We laughed (when I went bald) since my hair is my best asset. Yet, being bald was not a big deal, I didn't have to wash, style or color it for about 10 months. Yeah! In fact as a show of support my husband shaved his head upon me losing my hair. Unfortunately we all know so many women who have been through this disease before us, but I found them to be such a support system when I had so many questions. Trust in your doctor, don't turn down any help from family and friends, and know that you are not alone! God Bless

      over 5 years ago
    • Pdale's Avatar

      My dear husband was my greatest source of support to me. He actually found the tumor when it was barely palpable.I do self breast exams but the tumor was in the far upper outer quadrant of the left breast and hidden from my touch when I reached over with my right hand due to my body habitus. I am a stout lady and heavy breasted but thank God I was lying on my right side when my spouse reached over to pat me good night and asked how long I had had this knot? It was not until I reached for that quadrant with my left hand that I could feel the little nodule that caused me great concern
      The thing that I did that really made a difference was find a stellar pain management physician. My oncologist flat out told me he would not treat my pain and I had the side effect of excruciating bone pain and they really don't like to treat cancer patients in the ER.It was the worst pain I have ever known next to the herniated disc that had 2 nerve roots compressed, requiring surgery. Another thing I did that really made a difference was purchase Dr. Susan Love's Breast Book. You can get a new one from Amazon for less than $15.00 and a used one for less than $3.00. Her book is a must.

      If you live in San Antonio,TX area, Naji Kayruz is the best surgeon bar none and one of the kindest most supportive people I have ever met. Otherwise, I would Google best breast surgeon for cancer and best medical oncologist. A radiation oncologist may or may not be needed but you could do that the same way, and then check their records at the Board of Medical Examiners in the state in which you live.

      The resource that was most helpful to me again was Dr. Susan Love's Breast Book. Easy to read, and once you get started, it is hard to put down. It has charts for you to fill in the blanks with medical information that is very important for you to know, information that you must get from your doctor like a copy of your pathology report, operative report, and so on.

      Good luck and God bless all of you.


      about 5 years ago
    • Shel19's Avatar

      I was routinely referred to a lymphadema specialist for education on how to be mindful should lymphadema occur. Unfortunately, my speciailist was very new and erred so much on the side of caution that she diagnosed lymphadema in the right arm, left arm and chest. Over the period of one and one half months I was fitted for two compression sleeves, a swell spot and compression garment on the chest as well as taught how to do lymphatic massages which she initially said had to be done twice a day. When she started talking about putting me in compression gloves, I knew I had to get a second opinion. So I went to my oncologist and he referred me to a seasoned lymphadema specialist who said there was no indication whatsoever of lymphadema. The lesson I would relate is to go with your gut and get a second opinion if you believe the diagnosis is inaccurate.

      about 5 years ago
    • bec55's Avatar

      I was diagnosed with stage 2, grade 3 invasive ductal carcinoma in March 2011. I had a wonderful surgeon that went over all my options and gave me a large notebook with lots of information in it I was put in touch with a nurse navigator, that stayed in touch with me thru my treatments. My oncologist, at the clinic where I was to get my chemo, put me in touch with a resource person, that was able to get me a grant to pay for my neulasta shots I needed . A positive attitude and strong faith played a major part in getting thru my treatments and recovery. Having friends that brought in meals and co workers that took me to my chemo treatments was such a blessing. Neighbors came in and did laundry and light housework. I was able to work thru my chemo with very little nausea. I scheduled my chemo's for Wednesday's, once I learned my nausea hit on the 3rd day after treatments, giving me the week end to recover and go to work.

      about 5 years ago
    • evelynburris' Avatar

      My best support was my immediate family, husband and daughters, then friends. Things I did to make a difference was getting my life affairs and money in order before the surgery to ease my mind, getting the house cleaned, carpets and ducts cleaned so I would come back to an organized house and I could relax and recooperate. Also connecting with all the people I thought were important in my life before surgery and telling all of them to get a mammogram! I am with Kaiser Permanente and they found my medical care team and it has been great. I had a primary surgeon, a plastic surgeon, the oncologist team and my family doctor. Resouce most helpful was friends of friends who also had gone through this already and the internet resources such as this.

      almost 5 years ago
    • mcshap's Avatar

      I had a cousin who went thru breast cancer before me. She told me to find a focus to get through it. My husband and I had a dream to backpack the PCT trail, ( a 2650 mile trail from Mexico to Canada), one section at a time. Before I was diagnosed, we did 100 miles. When I was told I was going to have to have surgery, chemo/ IV treatments for a year (!) and radiation we thought the dream of hiking the trail was over. After the initial shock,and being on a wine and tears diet, I became determined to keep going on with our goal. It was my focus to refuse (or try) to let cancer ruin another day for me. In between treatments we have so far hiked 150+ additional miles. When I get out there and I can focus on where I am instead of cancer. We plan to do another 45 miles Labor Day weekend. I felt powerless over my health initially. My medical team did what they knew would heal me. But I empowered myself by filling my soul, my spirit, my strength with the trail. It also helped me to journal/ blog about what I called Hiking Cancer and comparing mountain hiking with cancer treatments.
      I also got a lot of strength and knowledge from joining a support group. Honestly I was surprised I would because I'm not really the type to do that. But it really helped.
      I need to really mention my husband as well who was my rock through all of this.

      almost 5 years ago
    • Mariangreig's Avatar

      I recalled a doctor's advice; he remarked that we had the same blood group and it was a good motto for life-B positive. So I laughed my way through. I wore fun wigs for chemo sessions.I got through 'with a little help from my friends.'

      over 1 year ago
    • marycamp's Avatar

      I had a great family support, my daughter & I made our chemo days a fun day! I just wanted to keep my normal routine so I put a smile on my face worked everyday I could. took the bad days with the good days. my medical team was wonderful.Iam a survivor now for 3years

      over 1 year ago
    • Judytjab's Avatar

      I would advise to definitely get second opinions on your breast surgeon, plastic surgeon (if your having reconstruction) and your oncologist. Do tons of research before you make decisions. You will know what's best for you. I couldn't have made it without my family and friends support and the support of the whatnext family! Oh and make sure you have someone with you at all appointments taking notes. That is so important. You will be too anxious to remember everything. Praying and staying positive is very helpful.

      over 1 year ago
    • Teachergirl's Avatar

      Usually the helper for others, I let others help by cooking dinners for my family. I personally believe that my attitude had some control over my treatments. I practiced visualization and talked frequently to my body that we were in charge and NOT cancer. I also continued to do everything I could including working. I felt it really helped me.

      over 1 year ago
    • paintmare's Avatar

      I didn't have a lot of support. My relationship was failing when I was diagnosed so he (the XXX...never mind) was no support.

      I've been pretty independent most of my life so I can't really expect a lot of support.

      I don't rely on other people. I get my strength from myself. I love my family but I mostly rely on myself.

      10 months ago
    • Carool's Avatar

      I attribute my survival (18 years since dx., thus far) to my wonderful doctors at MSKCC and to my having found my tumor when it was still stage 1. My chemo and radiation, plus Tamoxifen and Femara, did what they were supposed to. I'm still concerned that the cancer will return one fine day or that I'll get a new primary cancer of some kind, but so far, so good.

      My emotional support team of my partner, my brother, my friends, and the Adjuvant Treatment group that MSK offered non-metastatic breast cancer patients were of great help, too, and contributed to my maintaining a degree of emotional stability.

      And WhatNext is a great source of information and support and friendships across the miles!

      10 months ago
    • Ejourneys' Avatar

      I made two phone calls on the day I was diagnosed:

      1. American Cancer Society, which pointed me to some great resources, including their 130+ page breast cancer guide. That guide gave me most of the 20+ questions I asked my surgeon.
      2. My local breast cancer support group, which I attended later that same month and which has been a terrific source of support.

      When my PCP gave me my diagnosis, she offered to make an appointment then and there with a surgeon. I told her I wanted to research the options myself and asked her how soon she needed an answer from me. Within 24 hours I had done online research plus gotten guidance from the breast cancer support group facilitator. I faxed my PCP my first and second choices for surgeon (I got my first choice). Whenever I was asked to make a decision, I asked, "How long before I have to give you my answer?" That let me research my options without feeling rushed and made me more comfortable with my choices.

      I gathered together a support system as best I could. I'm also a caregiver, so I checked in with a home health care service in case I needed it. I didn't, but doing the legwork before my surgery gave me peace of mind. I also wrote out a memo to give the nursing staff, because my caree came with me to the hospital and had very high anxiety. My memo detailed her condition and needs, so that she was kept comfortable -- which made things easier on her, on the nursing staff (which was wonderful), and on me.

      I prepared as much as I could in advance, from body pillow (to keep me from rolling onto my surgical side) and other comforts, to foods that I could eat during chemo, to OTC remedies for side effects. I also tailored a chemo bag to take with me to infusions.

      I kept records of any and all side effects, which I gave my medical team so that they were able to treat me for them. Sometimes they could provide a remedy immediately; other times we had to do some problem-solving. I also gathered my questions and comments into a file that I printed out before each appointment. Even if I came up with a question far in advance, I created a file then and there so that I wouldn't forget.

      I stayed away from crowds as much as possible while chemo compromised my immune system and relied on home delivery where I could. When I went out in public I wore a homemade badge so that I wouldn't have to keep explaining why I was not hugging people or shaking their hands. I also timed my errands for my "good days" between chemo infusions.

      Eating healthy and exercising (even at reduced intensity) helped get me through treatment, including chemo. The endorphins from exercise helped keep my mood up. Hydration was also crucial, especially during chemo.

      Chemo trashed my concentration for creative writing and for reading anything but short articles, but I still kept a journal, which let me vent, brainstorm, etc. I also did digital art, which saved my creative sanity and was a form of meditation for me. So was listening to music. Another creative outlet was photography. Even when I was mostly "out of it," I found joy where I could.

      I cut myself a lot of slack. When I was diagnosed I emailed my clients and let them know, in case they needed to go to a Plan B. (They didn't. I continued to work through treatment.) When my body needed a nap, I napped. I've had to set boundaries as a caregiver, and cancer made me set even more boundaries. I was very up-front about my limitations. Communication was and continues to be key.

      Sometimes I asked the same question of every member of my medical team because specialists view things through their own lenses. I could get different opinions and different info from my surgeon, medical oncologist, radiation oncologist, and pharmacist. I also kept up to date on research and treatment options as best I could, especially via breast cancer social media (#bcsm on Twitter, bcsm.org). I learned to be a patient advocate as a caregiver and I now advocate for myself as a cancer patient.

      I kept my support network in the loop. Facebook friends became my cheering section. I was also active here and on #bcsm, along with my in-person support group, and still am.

      10 months ago
    • grammyk's Avatar

      My first advice is take your time researching your diagnosis. Get a second opinion and make sure you understand the different types and stages of cancer. Our first reaction is panic: get it out!! It isn't the emergency you may think it is. If you are estrogen receptive positive, get an oncotype test. It can tell you if chemo is necessary. Remember, you are not alone!

      8 months ago

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