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Today I made the decision to have a double mastectomy. I have IDC I am stage 2b. er pr positve and her 2 negative. I feel like the meltdown is coming. I have been strong through all of these decisions but this one is getting to me. Any suggestions

Susie Que Profile
Asked by

anonymous

Stage 2B Patient almost 6 years
 
  • Diana Foster Payne Profile
    anonymes
    Stage 4 Patient
    Hi Susie...I'm so sorry you're going through this. But you're not alone & everything you're feeling is normal & to be expected. I was diagnosed last May with IDC as well. When I first found out I had cancer, I experienced a wide range of emotions. Shock, disbelief (why me), fear, confusion, anger I was stage 3C, ER/PR positive, HER2 neg as well. I had chemo first, my double mastectomy, then more chemo after my surgery. Be kind to yourself. Allow yourself to cry when you need to. It's o.k. When letting the bad feelings out...you'll have more room to let the good ones in. And good feelings will return. Talk to as many survivors as you can, read inspiring books (like "There's No Place Like Hope by Vickie Gerard), & surround yourself with good friends, family, & positive people. Just take one day at a time. If thats too much, do a few hours at a time. I mourned the loss of my breasts. But the good news is.... I finished my chemo last month and on Feb 8th i was told my PET scan was free of cancer!!!! I will be able to begin radiation next week. And later this year I will have reconstruction. I feel truly blessed to be alive. Im getting stronger every day & I've come so far! You'll get there too Susie. When is your mastectomy date? Please come back & post again. There are some awesome women who have been in our shoes and are willing to listen whenever you want to talk. They're true angels. You'll be in my thoughts & prayers. Hugs Susie
    almost 6 years Flag
    • Susie Que Profile
      anonymous
      Stage 2B Patient

      Diana, You have a way with words. Yes it's so true when you first find out it IS such a range of emotions. I took like a week for me to come to reality and change my attitude about this. I am very strong woman who up to now everyone else...

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      Diana, You have a way with words. Yes it's so true when you first find out it IS such a range of emotions. I took like a week for me to come to reality and change my attitude about this. I am very strong woman who up to now everyone else looked to for support. The good news about that is I have great support system with my family and friends. I found the lump near the end of December. I was diagnosed in January. My biopsy was January 18, 2012. I had a lumpectomy on 2/9. I was told this week I do not have clear margins and my sentinel is positive. I will undergo my next surgery on 2/23. I too have to finish my treatment before I can do reconstruction. It's so wonderful to hear you're cancer free. Hope is a powerful thing. You have positive words and great advice. You are in my thoughts. I am so happy for you. Hugs to you.

      almost 6 years Flag
    • Diana Foster Payne Profile
      anonymous
      Stage 4 Patient

      You're very welcome Susie. Yes, hope is a powerful thing. You'll be in my thoughts and prayers on Thursday. Hugs Susie.

      almost 6 years Flag
    • Susie Que Profile
      anonymous
      Stage 2B Patient

      Thank you so much Diana! Big hugs for you

      almost 6 years Flag
    • Susie Que Profile
      anonymes
      Stage 2B Patient

      Thank you so much Diana! Big hugs for you

      almost 6 years Flag
  • Anne Marie jacintho Profile
    anonymous
    Survivor since 2003
    Susie when I made my decision to have a double mastectomy in 2003. With reconstruction, So many things ran through my mind and even though I was confident that was what I wanted I too had melt downs. Let yourself cry. I would be fine until I'd get in the shower many a night I cried as I showered knowing that my body would be different in a few weeks. That is all normal feelings and it is okay I even started to write my eulogy in my mind. But then I'll tell myself look at all the survivors before you. Look at all the hundreds of women who have breast augmentation or breast reductions. Yes ours comes because of cancer but with reconstruction you don't have to have that empty feeling. You have to focus on the positive you are getting rid of the evil cancer and you are a survivor. I use to also tell myself that boobs are only fatty tissue it's not an important functioning organ. I can survive without extra fat on my body. Everyone is different on how they deal with the loss of a breast all the women I've known do adjust and are happy with their decision peace of mind that the cancer has been removed is awesome even if further treatment is required you can move on just being alive. Sending some positive vibes your way. And remember its okay to cry. Take care.
    almost 6 years Flag
    • Susie Que Profile
      anonymous
      Stage 2B Patient

      Ann Marie, Thank you for sharing with me. I feel better knowing that other women have experienced these same emotions that I am currently dealing with. I had been telling myself that many women have gone thru this before me. It's a small price...

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      Ann Marie, Thank you for sharing with me. I feel better knowing that other women have experienced these same emotions that I am currently dealing with. I had been telling myself that many women have gone thru this before me. It's a small price to pay to have your life. I do realize this. Thank you so much. You take care.

      almost 6 years Flag
  • Sharon Danielson Profile
    anonymous
    Survivor since 2007
    Susie, I had the same diagnosis as you in 2006. IDC 2B ER/PR Positive Her2 Neg. When you hear you have breast cancer, you can't believe it, you think you are going to die, you are going through some pretty major surgery, chemotherapy, you are going to lose your breast or breasts which are such an important part of your femininity! It is a total and complete shock to you. You are on a roller coaster of emotions and this is something we have all gone through. I can tell you, you get through it, and you get over it but you do go through a period of mourning. That's about the only name I can give it. You do have the option to choose reconstruction. You are just at the beginning of this journey we have been through. You don't realize it but you have support out here because we have all walked this path before you. We completely understand all of these very complex emotions that are hitting you right now. I am very happy for you this cancer was found and it is operable and treatable! You have the most common form of breast cancer, about 80% of breast cancers are IDC. You will be able to take a hormone blocking drug that will keep these cancer cells from getting what they need to grow. My primary care doctor said to me..... "You got the good kind of breast cancer". Even with the diagnosis of breast cancer.... there are things to celebrate. You have made a very brave decision and it was a very difficult one. You will make it through this challenge in your life but you will come out the other end a much stronger woman. You are probably facing the more terrifying thing you have ever had to do in your life. You will do this and know there are millions of women who have been where you are and survived to live a full and wonderful life. Susie, we are here for you to support you every step of your journey. Remember.... BREAST CANCER AIN'T FOR WIMPS! Hang in there darlin' you will be ok. Healing hugs, Sharon
    almost 6 years Flag
    • Susie Que Profile
      anonymous
      Stage 2B Patient

      Sharon,
      What wonderful and inspiring words you offer. I find strength in your strength. I met some great ladies here. I just signed up yesterday. Yes, my journey is just starting. I hope this will be my last surgery for a good long...

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      Sharon,
      What wonderful and inspiring words you offer. I find strength in your strength. I met some great ladies here. I just signed up yesterday. Yes, my journey is just starting. I hope this will be my last surgery for a good long while. In my case surgery was first then comes chemo and radiation.
      Thank you for your positive words. I'm feeling very positive and thankful. Thanks again and hugs to you.

      almost 6 years Flag
  • Thumb avatar default
    anonymous
    Learning About Breast Cancer
    I also had the same diagnosis as you, stage 2, ER, PR pos, HER2 neg. being a woman I of course wondered what I would do if I ever got the news that I had breast cancer and I always thought I would make the decision to have them both removed but when I did hear those words I started to second guess myself. But as time went on the more thought I gave it the more I tended to go back to my original choice to have a double mastectomy. It was the only decision I felt I would be comfortable with. I new that if I had a lumpectomy or only one breast removed I would wake up from the surgery and regret it straight away. So in Nov I had both of my breasts removed, I woke from the surgery feeling very confident that I had made the right choice and have never regretted it, not for one second. I did the only thing that would give me peace of mind. I am now going through my expander/implant reconstruction and can't wait to see my new breasts or foobs as they are sometimes called. I have had a couple of small meltdowns but am taking one day at a time and staying positive. It is not an easy journey and you don't have to try and be strong all off the time, cry whenever you need to but laugh when you can. Good luck, you are doing the right thing.
    almost 6 years Flag
    • Susie Que Profile
      anonymous
      Stage 2B Patient

      Thank you for your inspiring words. I'm sorry that you have to experience this too. I'm glad to hear you are moving in the right direction though. You have given great words of wisdom to stay positive. Good luck

      almost 6 years Flag
  • Susie Que Profile
    anonymous
    Stage 2B Patient
    Hey ladies. , I just wanted to let you all know I'm doing well. I had my surgery on Thursday. I'm getting around ok. Emotionally doing much better than I expected. I really don't know what I expected. I feel stronger today than I did yesterday. I know there will be good and bad days as part of the process. You wonderful sisters of mine offered an ear, wisdom and reflection. I needed to hear all of it. I am so glad I asked. I am also thankful for the strong women before me. Please don't misunderstand I'm not happy any of you has to experience any of this. You all help more than you know. Thank you from the bottom of my heart. BIG HUGS to you all. Sue
    almost 6 years Flag
    • Anne Marie jacintho Profile
      anonymous
      Survivor since 2003

      Just was checking in on how you are doing I know for myself once I had the surgery it was like a heavy weight was lifted off my chest and what ever was thrown my way I could handle I was on the road to recovery you go girl and keep the positive...

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      Just was checking in on how you are doing I know for myself once I had the surgery it was like a heavy weight was lifted off my chest and what ever was thrown my way I could handle I was on the road to recovery you go girl and keep the positive juices flowing hugs

      almost 6 years Flag
  • Becky G Profile
    anonymous
    Stage 2A Patient
    I actually have a question from these answers. I too was diagnosed, 11/31/11, with IDC, grade 2c, er and or , HER2 negative, 8 cm tumor in right breast with 2 lymph nodes biopsied positive. BRCA 1 and 2 genetic test came back negative. Going through neoadjuvent chemotherapy right now to shrink tumor. Surgery will be coming up in April (mastectomy) then radiation. My question is: did those of you that chose to do a double mastectomy do so because you were BRCA positive? Or testing showed cancer in both breasts/lymph nodes? I was told that you can't have a double mastectomy just because and insurance won't cover it. I am a bit worried about reoccurrence. Was I given bad information?
    almost 6 years Flag
    • Anne Marie jacintho Profile
      anonymous
      Survivor since 2003

      Becky I chose to have a double mastectomy basically for peace of mind and having the mastectomies i didn't need to have radiation my surgeon was concerned that radiation would cause pulmonary fibrosis and damage to my aorta since my cancer was...

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      Becky I chose to have a double mastectomy basically for peace of mind and having the mastectomies i didn't need to have radiation my surgeon was concerned that radiation would cause pulmonary fibrosis and damage to my aorta since my cancer was close to my chest wall, and I do have a strong family history of breast cancer even with that I was somewhat frustrated because it took 6 months for insurance approval. They did question my family history since it was my great aunts (my grandmothers sisters) and their daughters not my grandmother or mother. My surgeon was going to fight for me if it didn't get approved. And to be honest with you I was planning to lie about my family history if need be. Insurance companies can not request your families records they can only review yours to base there decision. I didn't do genetic testing until I had a reoccurrence. But even with my strong family history my BRCA 1 and BRCA 2 were negative

      almost 6 years Flag
    • Susie Que Profile
      anonymous
      Stage 2B Patient

      I hadn't thought about insurance. I was trying to make sound decision based what I deemed medically important. We all know insurance companies don't always view it the same. I am considered high risk . Fibrocystic and atypical hyperplasia. That...

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      I hadn't thought about insurance. I was trying to make sound decision based what I deemed medically important. We all know insurance companies don't always view it the same. I am considered high risk . Fibrocystic and atypical hyperplasia. That changed my whole thinking process. I checked on this. I am told this will be covered. I do like pink sisters better. Your sister, Sue

      almost 6 years Flag
    • Becky G Profile
      anonymous
      Stage 2A Patient

      Thank you for helping me understand. I am still trying to decide what I will do. There are sooooo many factors to take into consideration! I have a friend that had a recurrence and they found out that the second cancer was there all along. They...

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      Thank you for helping me understand. I am still trying to decide what I will do. There are sooooo many factors to take into consideration! I have a friend that had a recurrence and they found out that the second cancer was there all along. They didn't catch it. It was a different kind of cancer and didn't respond to chemotherapy.
      I guess I can't control everything.
      Still praying about it. Thanks again for your answers!!! There is power in the pink sisterhood!
      Hugs

      almost 6 years Flag
    • Anne Marie jacintho Profile
      anonymous
      Survivor since 2003

      Becky the best advise I can give you is to know all your options get second opinions. Ask questions my doctor had told me to go home and research, and educate myself No matter what, you have to do what is best for you. Once you have chose your...

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      Becky the best advise I can give you is to know all your options get second opinions. Ask questions my doctor had told me to go home and research, and educate myself No matter what, you have to do what is best for you. Once you have chose your treatment course you will feel at ease to get the show on the road. At least that was how I felt. Take care hugs

      almost 6 years Flag
    • Becky G Profile
      anonymous
      Stage 2A Patient

      Thanks Anne Marie! Sound advice. My chemo nurse told me today that I also shouldn't make any more decisions while on chemo. Which I hadn't really thought of. But, also sound advice. So, I'm weighing all my options and will be able to make the...

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      Thanks Anne Marie! Sound advice. My chemo nurse told me today that I also shouldn't make any more decisions while on chemo. Which I hadn't really thought of. But, also sound advice. So, I'm weighing all my options and will be able to make the right decision in about 3-4 more weeks!
      Hugs.

      almost 6 years Flag
    • Anne Marie jacintho Profile
      anonymous
      Survivor since 2003

      Afternoon Becky was just checking on you and how things are going. Hugs

      almost 6 years Flag
  • Susan Green Profile
    anonymous
    Patient
    Hi, Susie Q, I was diagnosed with the same thing. They did an incisional biopsy, because I had a pretty big lump in my left breast, and it came back positive. My doctor advised me to have a mastectomy, so I did. I have read some of these ladies' stories on this site and wonder now if they could have shrunk the tumor first and done a lumpectomy instead. They also removed three lymph nodes which came back negative. The oncologist said that even though they were neg. that the cancer still could have spread. So she ordered bone and ct scans. I had those last week and they all looked good. Now I am waiting on the onco dx results. I will find out about that this week. The oncologist wants me to have chemo, radiation and take the hormone inhibitors because of the size of the tumor. Good luck to you in your journey and hope this gives you another outlook. Our prayers are with you.
    almost 6 years Comment Flag
  • NancyStradley- Pezzi Profile
    anonymous
    Learning About Breast Cancer
    I always thought I was tough. Now I am humbled and not so sure. Thank all of you for you words of hope and encouragement. I am scared to death.
    almost 6 years Flag
    • Susie Que Profile
      anonymous
      Stage 2B Patient

      Nancy
      I'm sorry you are feeling scared. If I were with you I would give you a hug. I think it's normal emotion to feel afraid. We as women have twenty different things going on in our head at one time and mastering it all under normal...

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      Nancy
      I'm sorry you are feeling scared. If I were with you I would give you a hug. I think it's normal emotion to feel afraid. We as women have twenty different things going on in our head at one time and mastering it all under normal circumstances. We are tough. I can't speak for anyone else but for me I think I have times of extreme strength and times when it's the opposite. I have met some wonderful ladies that offer their experience and wisdom. They are true angels. I think it is scary because of the stigma involved with the c word. It's not close to the way it used to be. It has changed so much. We are the pink ladies and we are warriors. Big hugs for you. I hope this helps.
      Sue

      almost 6 years Flag
    • Anne Marie jacintho Profile
      anonymous
      Survivor since 2003

      Nancy as Sue said we are all scared of the big "c". But breast cancer is not the cancer of our grandmothers time so many new treatments better procedures and most of all we are all sharing our experiences so you are not alone. Know that your pink...

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      Nancy as Sue said we are all scared of the big "c". But breast cancer is not the cancer of our grandmothers time so many new treatments better procedures and most of all we are all sharing our experiences so you are not alone. Know that your pink sisters are holding your hand to help you through it all. When I had my first diagnosis in 2003 breast cancer was still hush hush even in my own family I literally had to pull teeth to get my aunts to admit they had breast cancer and even then they didn't tell me what form or what there treatment was. I couldn't understand why. Chat rooms where only started and having to figure out a user name and the sign in was just as frustrating. I was lucky being a nurse I had other resources. My nurse friends that were now taking care of me. They always took my call when I needed that extra reassurance. This site is filled with wonderful women. That totally understand , have been there or are currently still traveling their journey. Different journeys but still the same battle. People use to tell me I was so brave. I wasn't brave I was just as scared as the next person. You don't get to choose the hand that was dealt to you, you just have to play that hand the best you can to win. Stay strong Nancy, there is light at the end of the tunnel

      almost 6 years Flag
  • Susie Que Profile
    anonymous
    Stage 2B Patient
    Susan, Thank you for sharing. I know. I have read a lot of stories this week. Some of them are down right scary. Especially the reconstruction stories. I thought I had made up my mind. Now I'm not so sure... above all I don't want to worry about what I cant see or feel. Good luck to you. My prayers are with all of you.
    almost 6 years Flag
    • Anne Marie jacintho Profile
      anonymous
      Survivor since 2003

      Afternoon Susie. Just checking to see how you are doing on your journey. My thoughts and prayers are with you and all our pink sisters

      almost 6 years Flag

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