• Newly diagnosed

    Asked by mistyb on Monday, May 13, 2013

    Newly diagnosed

    I am new to this site.. I was diagnosed in April and am scheduled for a bi lateral mastectomy on May 22. Any tips for me or my family (husband and 2 6-yr old girls)??
    Still a little shell shocked

    20 Answers from the Community

    20 answers
    • ticklingcancer's Avatar

      I was diagnosed in November 2011. I was scared, lost, depressed and everything in between. You find out you have cancer then it's like "now what". I couldn't help but think life was over. I think that's a perfectly normal reaction. But once you get a plan of attack together, it becomes easier to handle. Do you know what the plans are after the mastectomy? Do you know if you'll receive chemo, radiation or both? Cancer is a big scary word but treatment advancements are made everyday so try to not think about the negative stuff because chances are your thoughts will drag down a road of fear that only exist in your head. That was the case for me. You have a long road ahead of you so put on some good walking shoes and keep us posted on your progress. We can't treat your cancer but we can sure talk you through it.

      over 5 years ago
    • GregP_WN's Avatar

      Welcome to our little Family Misty, glad your with us. Here is a set of guides we have developed with the help of lots of WhatNexters on what to expect, how to prepare, and other items that may help you. Take a look at these and see if it helps. Let us know if you need anything. http://bit.ly/10BQKCi

      over 5 years ago
    • pressinfwd's Avatar

      I was diagnosed Nov 2012 and had bilateral mastectomy and immediate reconstructive surgery Feb 2013. I'm now going through chemo. My initial response to my diagnosis was fear, BUT I had to remember that I have 2 beautiful children ( ages 21 & 15) to live for. I also, knew that God has a plan for my life and I will not let the enemy take it away. Those who care for you most will be your greatest strength. Stay positive, ask alot of questions during your treatment and most importantly take care of you!

      over 5 years ago
    • GypsyJule's Avatar

      Make sure to visit your local American Cancer Society office. They have so much useful information. I didn't have breast cancer, but I understand that the ACS has a program that matches up new breast cancer patients with volunteers who are survivors of 1 year or more. Talking to others who have been through all this mess helped me more than anything else, that's why whatnext.com is such a wonderful thing!

      over 5 years ago
    • karen1956's Avatar

      There are some great books out there for little kids....one that I read to my then almost year old was 'the year my mother was bald'...there is another book that is for young kids with something like butterfly kisses in the title...I'm not home so don't have it with me.....Friends took my DD for play dates.....we had friends help with meals....Tell your kids what they need to know for their age....such as that you have a bad ouchy that the doctors need to take out...let you kids help....help bring you a drink or whatever is appropriate for their young age....

      over 5 years ago
    • SandiD's Avatar

      I am sorry. The beginning is the hardest as we have so many fears. Go to www.breastcancer.org. It was my go to site for reliable info. I had a lumpectomy, chemo and radiation, so my experience is different. I had early colon cancer the year before. Please remember that breast cancer is not the automatic death sentence it was once thought to be. Oncology has come a long way and you will join the Survivor Club! I wish you the very best.❤

      over 5 years ago
    • penny364's Avatar

      Be sure to ask your surgeon or oncologist all questions you have, as they are the best source of information. Folks on this site are also very helpful and supportive. I'm having a lumpectomy on May 20, which is nothing compared to your surgery, but I know how scary all of this can be. Don't let the cancer define you- you're still a wife and mother and friend and daughter and so many things to so many people. Accept help when it's offered- people really do want to help. Wishing you all the best next week!

      over 5 years ago
    • leslie48240's Avatar

      My heart goes out to you. I do believe it is much harder to deal with all this when your children are young. I know I thought often that "at least my children are grown" ..but truth is they and all seven grandchildren DO still need me and I think that is a big part of the drive that helped me thru this fight. It gives you something to live FOR and helps you keep going when you hit a rough spot. Do know that the beginning...when it all hits you at once and is so overwhelming is the hardest. Once you get past the surgery...that's a rough spot, for sure...and start treatment (I call it the battle) it's easier to look for the positive results. hugs to you and yours. We're with you!!

      over 5 years ago
    • Anglav's Avatar

      I was diagnosed last Sept, due to uncertainty of spread I went through chemo first and had bilat mastectomy April 1. The mastectomy was not as awful as I expected and no-one could have really told me that. I have 3 girls, 15 mths, 3 & 5 1/2. By 2 weeks I was feeling very normal and back to resuming normal life, pain not awful at all, I had Cesarean births so somewhat similar, I felt. 1st week was not bad either. I had 20 weeks of ACT chemo and it was very doable, side effects were limited to cosmetic, hair & nails. Adequate rest as in a healthy nights sleep, good nutrition as in fruits and veg and hydrate, hydrate and a little exercise, for me walks but however you can. The pathology from surgery showed chemo worked. Radiation is to follow. Your children will keep you busy and smiling as they have always done and you will fight for your husband & children.

      Good luck and very importantly surround yourself with positive people. as mentioned in another post, once you have a plan of attack it helps with feeling safer.

      over 5 years ago
    • suebo's Avatar

      I am newly diagnosed and still shell shocked also so I know how you feel. (not the same cancer but mine is in-operable). My advice is to go online and research and learn as much as you can. I have been on the internet for months now and have adjusted my lifestyle, eating habits, way of thinking and have actually found a treatment for my very rare disease in Germany! If you are proactive in many ways it will help you fight cancer, heal better, feel better etc. Ill add you in my prayers and am so glad you found this site.

      over 5 years ago
    • Gabba's Avatar

      You have received wonderful information here already, I would add getting a copy of Kelly Tuthill's book or google her and watch her online videos that took her through her diagnosis, surgery and treatments...she is a reporter here in Boston that was dx'd as a young working mother of two...I have gone to hear her speak in person and she is so inspiring...I am sure you can get her book on amazon or the library but please watch her snippets that aired on the news...I will be thinking of you and praying for you and your family...the ACS has helpful books in helping you deal with the children and learning your dx...good luck and God bless!

      over 5 years ago
    • BuckeyeShelby's Avatar

      It's already been suggested, but I'll reinterate -- ask questions. No question is too "silly", whether you are asking it here or of your treatment team. After I was diagnosed, one of my first questions was whether my cat could get sick by licking me after I started chemo. Even called the vet's office on that one... Ask, ask, ask! Can't give any advice on the issue of kids, as I don't have any. I wish you and your family all the best.

      over 5 years ago
    • thil2633's Avatar

      Feel free to read my blog about my experience with diagnosis and double mastecomy and chemo. www.adventuresoftraci.blogspot.com

      over 5 years ago
    • PrettyToes' Avatar

      Being told I had breast cancer devastated me. I cried and cried. I had heard horrible stories over the years about chemo and radiation. I was terrified. Afraid of what would happen. Felt like I had a death sentence. After my mastectomy, met with the oncologist. By then I was ready to fight. Still scared. Recommend you take a list of questions, and someone with you for a second pair of ears. I took notes as the onc told me the plan. Even though I thought I understood, I went back to my notes several times. Every visit I took my list of questions, and a notepad. You may not need chemo, but if you do, the chemo was not nearly as bad as I had imagined. The doc gave me lots of anti nausea medicine. I worked thru my treatment. Had chemo on Fridays (a flex day for me). Sometimes, I went to work after my chemo.

      Radiation was not as bad as I had imagined. Fatigue is common with all this. Don't be afraid to let people help you. Be specific.... "It would be great if you could pick the girls up from ..." , "it would really help if you could make a casserole ".... It really helps to have someone go to chemo with you. Your husband may not be able to go every time. If someone volunteers to help, ask if they would go with you. The American Cancer society offers a free class called "Look Good, Feel Better." You can check with your local cancer society, or go online. Well worth your time.

      Wishing you the best. It is a scary journey, but you have lots of friends here,

      over 5 years ago
    • Nonnie917's Avatar

      I too had a BL mastectomy. No special tips except be prepared for that first look in the mirror. It is a shock and you will cry. Hopefully your husband will be a supportive person for you and those tears. You will cry a lot the first month or so and I would try not to cry in front of your child if you can help it. She wouldn't understand and it would only upset her and scare her. Tell your husband what to be prepared for in advance so that he is prepared too. This is a scary procedure for everyone. You, your husband and all your family are going to be concerned about you so don't be afraid to talk to them. Help them understand where you are coming from with your feelings. It was hard for me for 5 months because in that time I had 3 surgeries. I didn't have to have chemo or radio because I was localized and stage 0, but still it was hard to explain to my kids and other family members why I made the decision for the BL all the surgeries that followed and how I felt both physically and mentally. So be prepared for the mental part as well. You may suffer some depression and if you do, talk to your doctor so he can help you with that. I wish you all the best and good luck with all that is on your mind and how you are going to deal with it.

      over 5 years ago
    • Snooks' Avatar

      Welcome to the "What Next" family. Everyone else who is diagnosed with breast was also "shell shocked" when they received their diagnosis. The best advice I can give is to take each day one day at a time. There is so much information coming your way that some days you will feel overwhelmed. Ask questions; there are no dumb questions. Seek out others in your community (through the Cancer society, through your hospital, or right here on this forum) who have traveled this road before. There are numerous books on breast cancer that your doctor can recommend. Some days you will feel that your are on this journey alone, but always remember you are not. Good Luck and God Bless

      over 5 years ago
    • scootersmom's Avatar

      I had a bilateral with tissue expanders placed immediately. It was tough but very doable. Make sure that you have someone really close by that can help you out. I wasn't able to lift my arms for awhile let alone wash my hair. Make sure when they give you pain meds you take them as scheduled. Don't try to "tough it out" as it will just make your miserable. Get yourself some pants that don't require zippers as even that will be difficult until you heal. Shirts should be button up and you will not be able to lift your arms for awhile. You should sit down with the kids and let them know that mommy will not be able to lift things and play for a little while as you mend. You didn't say if your were having reconstruction or if they were going to be removing lymph nodes or not.

      Good luck to you.

      about 5 years ago
    • mistydkw's Avatar

      Looks like we have alot in common- my name is Misty also and I was diagnosed when my children were 1 and 7. I was "shell shocked" for months. How could this possibly happen to a young, healthy mother? Unfortunately, it does and no one knows why. I, too, had a bilateral mastectomy. The hardest part of the surgery was not being able to pick up my youngest. You'll have to rely on others to help. That was hard for me to learn, but I finally realized that if I didn't take care of me first, then I wouldn't be able to care for them. The surgery itself isn't that bad (probably nothing like you'd imagine). The drains are annoying. You'll need help for a few days with draining them and also getting dressed/washing hair. Start doing your stretches asap. That's how you'll get your range of motion back sooner. Will you be having immediate reconstruction? Chemo/rads?? Would be glad to answer any questions for you. Best of luck on the 22nd!

      about 5 years ago
    • Mel's Avatar

      First off Welcome!!.. Second Best of Luck to you...
      I remember the shell shock myself being told you have BC. (day my life forever changed). I also had a bi-lateral mastectomy lets see lots of stretchy pants, button down shirts, saftey pins (pin drains to bra helps keep out of way) they gave me some special bras to wear, wet ones if your husband empties drains it helps to run fingers down easier plus anti-bacterial :) my mom thought of that plus a few times mine got clogged so it helped. Just rest but get up and around and move when can after first few days i started moving more but can't do anything as far as lifting etc.... I was off work 4 wks had drains in for 3 solid weeks cause of to much fluid. every few days mom made me hair appointments cause I couldn't take showers and she washed me up. Nothing like feeling helpless. Now my sister hers was different and she could shower ect. so I guess just depends on doctors also. Stay strong and you can do this... :)

      about 5 years ago
    • mistyb's Avatar

      Thank you all for your advice! I appreciate every single one of you and the advice you had to give! :D It is so good to read your encouragement, especially on the days when it's tough to keep being positive.
      I have picked up a good pair of walking shoes ( :D ) and a big bat along the way to take with me on this first step towards beating this.
      Planning on immediate reconstruction, so hope that is how I wake up after surgery.

      about 5 years ago

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