• Terrified

    Asked by MariaR on Friday, September 6, 2019

    Terrified

    DCIS stage 0 grade 3. Family history. My Drs suggest a bilateral mastectomy with reconstruction. I know I should not read things on the internet but what I have read about complications, recovery and the emotional toll, I feel like I will not be able to handle all of this!!

    30 Answers from the Community

    30 answers
    • ChicagoSandy's Avatar
      ChicagoSandy

      You CAN do this. Take it one step at a time. Be prepared, but don't overthink or catastrophize. Ask if your hospital system subscribes to the EMMI video program--online videos that take you step by step through various surgeries, procedures & treatments. (I had them for knee replacement and lumpectomy surgeries, and for radiation treatments). Seeing and hearing about what's in store is more readily understood--and less panic-inducing--than just reading it in print. Ask if your cancer center has an oncopsychiatrist or oncopsychologist--(s)he can help you through it emotionally. Finally, ask around for volunteer mentoring organizations (here in Chicago we have "Imerman Angels," a network of cancer survivors who can be matched with new patients with exactly the same conditions to guide the new patients--often meeting in person or via Skype.

      The Internet should be used as a tool to guide you to sources relliable information--chief among them Dr. Susan Love's Breast Book (available in softcover print or e-reader/Kindle formats). It really is the "Bible" of breast cancer. Breastcancer.org is a huge onlline network of physicians (founded by a gynecologist) containing latest research articles (in easily understood lay terms) and forums with tens of thousands of patients with various types and stages of breast cancer (men too)--plus some "diversionary" forums to help you focus on everyday life (which DOES go on) and even fun stuff (eating, drinking, music, spirituality, games, humor...).

      You are not alone. The fact that you found What's Next means you're on the right track. Sorry you had to find us, but welcome aboard!

      9 months ago
    • beachbum5817's Avatar
      beachbum5817

      Welcome to WhatNext. You can find many answers to your questions here. If you are unsure of what your doctors suggest, you should get a second opinion. I had a double mastectomy 5 years ago. For me, it was nowhere near as bad as I imagined it would be. I was able to go back to work 3 weeks after the surgery. @ChicagoSandy has some very good suggestions. We are here to offer support anyway that we can. Let us know how you are doing. Take care.

      9 months ago
    • cllinda's Avatar
      cllinda

      Get a second opinion. And go with the best choice. Breast cancer is scary. Hugs to you as you start this journey.

      9 months ago
    • MLT's Avatar
      MLT

      You can have immediate reconstruction, none at all, or wait to make that decision . Like was said before, get other opinions with breast surgeons and plastic surgeons. Dont feel like you have to be rushed in to procedures you are unsure of. Do you know others that have been thru this, look for a breast cancer support group.
      I prayed for guidance after I had a unilateral mastectomy, and felt the suppirt to remove my other breast and have the DIEP Flap reconstruction I have been very happy with the results, but it is a longer r3covery than other procedures.
      Support and hugs for you during this time of decision making. ( )

      9 months ago
    • GregP_WN's Avatar
      GregP_WN

      I have had different cancer types, but I am living proof that yes, YOU can do it too. 32 years ago I was diagnosed with my first round of Hodgkin's Lymphoma, a year later I had to do it all over again. I was good for 18 years when I was diagnosed for the 3rd time. I thought I couldn't do that one for sure, it was a much worse diagnosis and the numbers didn't look good. But here I am 11 years out from that one. It's a hard road, but you have to travel it. In the end, you will look back and say "yes, I did that". All of us here at WhatNext wish you the easiest, quickest, and the most promising road to success!

      9 months ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      I was diagnosed w/stage IV endometrial cancer. I was scared spitless. Didn't think I had the strength or support to get through treatment. I quickly discovered I'm much stronger than I ever imagined. I handled bumps in the road well - everything from allergic reaction to one of my chemo drugs to a nasty side effect cause leg pain for 2 days after every chemo session. And that diagnosis? It was over 7 years ago, and I'm still like the energizer bunny. Ok, maybe w/more fatigue than energy, but still... If this wimp can do it, I have faith in YOU!

      9 months ago
    • gpgirl70's Avatar
      gpgirl70

      I remember feelings of terror when I was diagnosed. It feels like information is coming at you at warp speed. Take some time to make your decision. Seek a second opinion. I would find out your hormone receptor status because a bilateral mastectomy for stage 0 DCIS seems very aggressive. When you say family history, have you had genetic testing? I’m thinking your surgeon had a reason for recommending mastectomy over lumpectomy. Good news is you caught this very early so take time to understand all your options. I hope you find answers and some peace of mind.

      9 months ago
    • rachelarmom's Avatar
      rachelarmom

      Sometimes, it is overwhelming to look at everything at once. I suggest taking it a day at a time. You will find that chemo is do-able, that rads are do-able, and that nobody gets all of the side effects! It is doable and plenty of us have done it! The treatments aren't nearly as bad as dying of cancer! The great thing is, you will run into ppl during your treatment that can and will help you all the way!

      9 months ago
    • Teachertina's Avatar
      Teachertina

      So glad you found this site! I get on everyday to check news about my fellow warriors. That’s what we are and you will be too! I felt the same way as you 13 years ago when diagnosed with a huge tumor in my kidney, lost that one and my spleen during surgery. I’ve had 2 more recurrences since, but got great treatment and I’m doing great. Writing down all your questions and concerns to discuss with your doctor helps a lot. I too was so scared at first that I could not remember what I wanted to say when I got there. No matter what kind of cancer you have, it’s a terrible word to hear! Keep posting here for great support and answers and let us know how you are doing! This is a caring place to share!

      9 months ago
    • MLT's Avatar
      MLT

      Always take someone reliable with you to Dr appts. I am very picky about who goes on those days. I want a good set of ears, an awesome notetaker and someone who will also ask questions. That is so helpful later if you need to review what was said.
      Yes, devastation is usually the 1st reaction. But then you will be calmer and more educated so you can ask questions and digest answers. My oncologist was impressed yesterday with my ability to recall testing dates and when the next test should be. But I had reviewed my notes previously. You have to be an advocate for yourself.
      I hope we can help you thru this. This group is wonderful!

      9 months ago
    • fiddler's Avatar
      fiddler

      You are Stage 0 and they're recommending double mastectomy. Please get 3 opinions, each from a different establishment.

      9 months ago
    • sheri56's Avatar
      sheri56

      You are stronger than you think. I found amazing support while on my cancer journey. If you see classes, lectures, support groups, etc. take advantage of them. You will meet so many wonderful people who have been effected by cancer. No two journeys are alike but you will learn something from each and every person you encounter. Also, the people who work with cancer patients are so very special. I call them my Cancer Angels. One day at a time! You CAN do this!

      9 months ago
    • Jesse0218's Avatar
      Jesse0218

      You can do this. It's scary is right. Scared the living daylights out of me. I'd only been retired for a month and just moved when I found a lump in the shower - on my birthday no less. I really thought it was from moving and unpacking and I was just sore - period. I had plans for my retirement and I really didn't want anything to interfere with them.
      Well, all of a sudden they hit me with - you have cancer. I basically said do what you need to do, but I have plans and I'm going to do them. I had an awesome surgeon who told me he wanted me back in the barn asap. I was working with rescued horses. I was back in the barn in 5 days. I did as much as I could and got stronger every time I went out.
      I will say in all honesty, I had a Mastectomy and reconstruction and it wasn't bad. It was much easier than having my hip replaced last Oct.
      I was out of the hospital the day after the Mastectomy and reconstruction. I was in the hospital 3 days with the new hip, then spent 6 days in rehab getting back on my feet.
      I'm not saying a Mastectomy is a piece of cake. It's not. I am saying in my case, that I was back on my feet much faster with the Mastectomy as compared to the hip replacement. Although my hip needed to be replaced and the pain was gone.
      So I'm very sure you can do this too. It's normal to be terrified. But, you will be stronger and healthier after having surgery. As a couple others suggested, get a second opinion and if you need it, get a 3rd opinion. There are a lot of people here to help you and support you.

      9 months ago
    • ChicagoSandy's Avatar
      ChicagoSandy (Best Answer!)

      For everyone here saying a BMX is overkill for Stage 0 (DCIS), that may well be—but there are other factors at play that may ironically make it a logical choice in DCIS (even as many of us with invasive tumors opted for lumpectomy.

      Aggressiveness—hers is grade 3, likeliest to become invasive. Location, size, and “focality”—multifocal, or large tumor or area of scattered tumor in a small breast could produce an undesirable cosmetic result—and even with reconstruction, perfect symmetry with the other, intact healthy breast may not be possible. Hormone receptor status—ER- is commoner in DCIS than in IDC, and that means no endocrine therapy. (And if surgical path results find only DCIS, then chemo is never given, regardless of grade or receptor status, unlike only 15-20 yrs. ago). Mastectomy also usually means no radiation—radiated skin doesn’t take as well to various forms of reconstruction.

      If all these factors are present, it is very tempting to go for the “one & done” solution of BMX: it could be the rare occasion when for all intents & purposes a “cure” has been achieved (unlike those of us with less-aggressive ER+ tumors, who face recurrences as far down the road as 20-25 yrs).

      9 months ago
    • Yeahyeah's Avatar
      Yeahyeah

      Pay attention to ChicagoSandys comments. Also fiddler who advised second opinions. Look for a teaching hospital that is familiar with latest research and techniques. Take someone with you when you go to any meetings with doctors to take notes. They hear what you don't. Get a copy of the diagnosis. You need all the facts about tumors, site complications, etc.

      9 months ago
    • Yeahyeah's Avatar
      Yeahyeah

      Pay attention to ChicagoSandys comments. Also fiddler who advised second opinions. Look for a teaching hospital that is familiar with latest research and techniques. Take someone with you when you go to any meetings with doctors to take notes. They hear what you don't. Get a copy of the diagnosis. You need all the facts about tumors, site complications, etc.

      9 months ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Ask if they mind if you record the consult--your smartphone is faster than your pen and more accurate than your perception. Then when you get home, condense it down to notes.

      9 months ago
    • Sheryl88's Avatar
      Sheryl88

      I had stage 2b dcis. I opted a bilateral mastectomy with reconstruction. Diagnosed in 2016, I was 51. No regrets. I am here in Tampa. You have lots of great choices for treatment. Definitely get a second opinion and go where you feel most comfortable. Reach out anytime to talk. Best of luck to you.

      9 months ago
    • Chrisg51's Avatar
      Chrisg51

      I was 51 when diagnosed with Stage 2B. Grade 3 and my Dr at MGH recommended lumpectomy with chemotherapy and radiation because my BRACA test came back Negative even with Family history. I will be celebrating 5 years cancer free I January. I would not do it without Braca screening first.

      9 months ago
    • Dawsonsmom's Avatar
      Dawsonsmom

      I would definitely find out about BRCA status. I am BRCA1 positive and had prophylactic oopherectomy but was having breast health closely monitored. MRI revealed 2 suspicious spots......long story short, I was stage 1 bc. I would have been treated w lumpectomy, chemo & radiation but the brca mutation increases the risk of recurrence to 85% for both breasts. Therefore, I elected for bilateral mastectomy. I have no regrets other than wishing I had considered prophylactic mastectomy before actually getting bc.

      9 months ago
    • Sparkplug's Avatar
      Sparkplug

      I am going to get through this. Repeat: I am going to get through this! ( Now say it ! )

      9 months ago
    • Dawsonsmom's Avatar
      Dawsonsmom

      Sparkplug, you definitely will get through this!! Remember that everyone’s experience is different but we get through it. The importance of following post op course is imperative. Women who try to do too much too soon seem to have bigger issues. Take good care of yourself and realize that asking someone to make you a bowl of cereal will feel ridiculous but it’s important to do so. Hang in there, breathe, breathe, breathe and get lots of rest. Nutritious food will make you feel better and the exercises they give you actually give you immediate relief after the first few days. Sending healing thoughts....

      9 months ago
    • MariaR's Avatar
      MariaR

      Thank you for all your encouraging responses. Wow what you have been through is amazing! Strong people you all are!! I think the shock has worn off. Gone through the why me, crying, anger stages. Now ready to get through this. Have lots of support from family and friends. My surgery is set for September 26. Bilateral mastectomy with reconstruction. Been staying very busy. Not sure how I will be the morning of surgery, A little worried about being under for 5 hours. Not too worried about pain. I think I can handle that but the idea of extreme fatigue bothers me. Not one to sit around. Maybe I will be an exception. I hope!!

      9 months ago
    • Dawsonsmom's Avatar
      Dawsonsmom

      MariaR
      I’m so glad you are starting to move through this some. My experience was the pain was pretty manageable but the fatigue knocked me into the dirt for the first 3 weeks but has gotten significantly better as I get close to 6 week post op. Be very, very careful about doing too much. It can lead to seromas and lymphedema. A friend developed lymphedema by doing too much too soon and she tells me I definitely don’t want it!! Try to stay positive and watch funny YouTube videos!

      9 months ago
    • MLT's Avatar
      MLT

      MariaR, eat lots of protein now and after surgery. It helps with healing. Didn't know that until I had my DIEP Flap surgery. Glad that you are feeling more in control now. Helps to get some tough decisions behind you.

      9 months ago
    • beachbum5817's Avatar
      beachbum5817

      @MariaR, good luck on Thursday. I will be thinking of you. Give yourself plenty of time to heal. Go at your own pace. Let us know how it goes. Take care.

      9 months ago
    • Gabba's Avatar
      Gabba

      Will be thinking of you on the 26th - my birthday! - and praying for sure and steady hands for your surgeon and a quick and easy recovery for you. Good luck!

      9 months ago
    • Teachertina's Avatar
      Teachertina

      Hope all goes well for you with your surgery and recovery will be happen quickly. Just remember to take it slowly at first. I learned a lesson when I felt somewhat better and tried to vacuum one day, spent the next 3 days in bed after that! Everything can wait! Let us know how you’re doing, everyone here is cheering you on!

      9 months ago
    • Jesse0218's Avatar
      Jesse0218

      Good luck on Thursday. I'll be praying for you too. Just take your time healing, like everybody says. But, hope you're at least back on your feet and walking soon.

      9 months ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Eat all the protein you can get: eggs, meat, fish, nuts, peanut butter, beans, full-fat dairy. (There will be time enough to diet and save the planet later). Your body needs it for strength now and healing post-op. (After I had my wisdom teeth out, I drank milkshakes with protein powder added and ate scrambled eggs and refried beans with melted cheese. I healed super-fast).

      9 months ago

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