Double mast ahead and too scared to read anything...

Joellyn
Joellyn Member Posts: 4
edited March 2014 in Breast Cancer #1
I can't even bear to read about other people -- I am just six days into diagnosis and even though this is my third bout, the first two were non invasive. Now it's a new cancer, invasive, and I am facing a double mast and reconstruction. I am LARGE -- a 42 DDD but not fat; real hourglass figure -- so this is striking at core identity; I was told I probably would not be anywhere near the size I am now with reconstruction, so God knows what I will look like -- it's all so hard, I don't have any answers and I haven't been eating, sleeping poorly and constantly in tears. Please, can someone handle this and talk to me?

Comments

  • tuscanydreamer
    tuscanydreamer Member Posts: 4
    You made a telling point with striking at your core identity. I was about the same size and I underwent a bilateral mastectomy in Dec. I rationalized that I had fun with my breasts when I was younger and that I had other things to offer than my breasts. I looked at living through cancer vs. how I would look like and I chose to do the maximum I could for survival. I was stage 3 at time of dx. We are all different. You may end up going through this better than you think. Sometimes we focus on one fear so we don't have to look at others. The bottom line, is your breasts are not you...and although I won't say it's not difficult.... I'm limited because of treatment to not much size and I've just accepted that oh, well....I'll be able to wear different clothes than I have before. The most important thing is to focus on your quality and quantity of life. Your self image will change as you go through everything. Yes, it's confusing, and scary, and there's so many questions, but you make the decision for your health, not your appearance. Like you, my large breasts were part of my identity, but somehow I found the peace in letting that part go because it wasn't all of me. Best of luck.
  • tuscanydreamer
    tuscanydreamer Member Posts: 4
    You made a telling point with striking at your core identity. I was about the same size and I underwent a bilateral mastectomy in Dec. I rationalized that I had fun with my breasts when I was younger and that I had other things to offer than my breasts. I looked at living through cancer vs. how I would look like and I chose to do the maximum I could for survival. I was stage 3 at time of dx.

    We are all different. You may end up going through this better than you think. Sometimes we focus on one fear so we don't have to look at others. The bottom line, is your breasts are not you...and although I won't say it's not difficult.... I'm limited because of treatment to not much size and I've just accepted that oh, well....I'll be able to wear different clothes than I have before. The most important thing is to focus on your quality and quantity of life. Your self image will change as you go through everything. Yes, it's confusing, and scary, and there's so many questions, but you make the decision for your health, not your appearance. Like you, my large breasts were part of my identity, but somehow I found the peace in letting that part go because it wasn't all of me. Best of luck.
  • live42day
    live42day Member Posts: 64
    I wasn't nearly your bra size and only had my left breast removed, so my story is not the same as yours. But I told my breast good bye the night before the mastectomy and prayed for God to see me through this whole ordeal. It put me at peace and now I am 2 yrs post chemo. I had reconstruction 1 year after mastectomy and was never very bothered by the way I looked after surgery. Take care and God bless you.
    janet
  • SusanAnne
    SusanAnne Member Posts: 245
    Hi Joellyn. So sorry you are going thru all this. I'm not large, but the year before my dx I had taken charge of my health and lost 45 lbs and looked the best I had in years, then bam! My advice to you is to focus on taking care of yourself. You don't say if you need further treatment after the surgery, but regardless, you need to eat right, exercise, sleep enough and learn all you can about your care and treatment. If you need help in any of those areas, your local breast cancer coalition can point you in the right direction. Ask your doctors questions about anything you worry about, anything. You might not like the answers, but at least your mind won't make stuff up. Once you know what you're up against and take charge of your health, you will feel more in control and better about the whole situation. If you haven't tried a support group, perhaps that might help. Take advantage of all the help that's out there for breast cancer patients. I just went last night to my first yoga class (free) at a local cancer center and it was fantastic! Remember, what you focus on is what you will experience. Change your focus. Please let us know how things go, I'll be thinking about you.
    Susan
  • Ronee33
    Ronee33 Member Posts: 25
    I had my double mastectomy on Feb 26, 2004. And I tried to focus on all the good things about having a mastectomy (with no reconstruction). Oh, like, not having to wear a bra and get those red marks on my shoulder. Throwing on a tshirt if I was just running around the house. How better my shirts would fit. I told myself that my breasts did not define me as a woman. And that I was glad to be alive and that was more important. But truthfully, there are times I miss my breasts. But the only reason I'm here to miss them is because I had the mastectomy and I'm alive. You'll get through this somehow. And you'll be alive.
  • EllenM6246
    EllenM6246 Member Posts: 27
    Hi Joellyn, I too had a bilateral mastectomy in Nov '03. I did not have reconstruction and probably will not having found that the loss of all that weight suits me!! It does take time to adjust to a new image but the important thing is your health. You are not just your breasts, you are a woman with a long life ahead. Keep positive and have faith. We are all here to support you. Ellen
  • DJC
    DJC Member Posts: 52
    Joellyn-like all the other women who have posted responses to your note, I, too, can certainly understand your anxiety associated with losing size in your bustline due to this type of diagnosis - for some women,it does strike at our core indentity. I was a 36D before dx, skin sparing right breast mastectomy and reconstruction - now, I am a 36B - but I tell you what, my plastic surgeon did a beautiful job - my breasts match in symmetry - even though the right breast has an implant and the left was just reduced - now I am downright perky, plus this size is very utilitarian - I can jog now - clothes fit so much better - activities involving my upper body are easier - even my posture is better - sure, I don't have the hourglass figure I once had, but now I'm sleek and my boyfriend thinks I'm even sexier. And, remember, you can always dress to look larger if you want. This process doesn't have to be a complete nightmare. Best of luck to you as you go through all the upcoming processes. All of us are here for you. DJC
  • hounddog
    hounddog Member Posts: 115
    Hello my name is Marilyn and right now you are going through a storm in your life it is alright to be scared during the storm .Keep your trust in the Lord John 6:14-21 talks about the storm . Also keep a positive attitude during this and remember you are not alone through this storm we are here for you and you are in our prayers .I had breast cancer 13 yrs ago and a new breast cancer came back in February of last year I to was scared it is normal to be scared .Tell your doctor about what you are felling they can put you on effexor for depression . Because alot of us that go through cancer get depression and that is normal.
    Marilyn
  • seeknpeace
    seeknpeace Member Posts: 259
    First of all, bless you and I wish you the very best honey. I understand totally how you feel.

    I was not as large as you, but, personally, I did not like my breasts. I don't know your age but for me, at 52, there was a lot of tissue under my arms, and they were flappy and just felt like sacks of fat that left indentures in my shoulders and back from the bra. And, all the bras looked like harnesses.

    Now, since the bilateral and tram flap reconstruct, my cup size is actually larger, but, my breasts are really much nicer. They are perky, and not under the arm and I do not need a bra. So, maybe you can find something in that aspect to help you.

    I have always kinda felt that my hair was my thing and I am losing it. Not due to chemo, I did not have to take that, but, due to iron deficient anemia and the ten hour surgery. That has been hard for me. So I understand when you lose that thing that you feel is so much a part of your idenity. I have wigs, but, they are not the same.

    Good luck. What are you doing about reconstruction?

    Jan
  • nancyeob
    nancyeob Member Posts: 19
    Joellyn, My heart goes out to you. Having to deal with this nasty disease three times now. You are a very strong person just getting this far and that proves a point. You would not be any less strong if the outside of your body changes, strength comes from within.
    I have only had my left breast removed and have not had reconstruction. I told my Surgeon that if it was up to me I should have had her remove both breasts. Much less trouble all around. I don't know how old you are but I think we tend to care what other people think or perceive a little less with each birthday. Knowing that we are all considered "cured" until the cancer comes back (that's what my Oncologist told me) we will all have to face the same decision one day. I'm sure you had a stunning figure but age alone would eventually change that anyway. Be proud of what you have conquered and feel pity for those who don't understand.
    Good luck and God Bless, Nancy
  • elizagain
    elizagain Member Posts: 43
    Hi, Joellyn, wish I had read your message earlier - BUT I just got hom on Saturday from having a bilateral mastectomy with no reconstruction myself! I was getting near the magic 5 year after having stage 1 in my left breast with a lumpectomy. Then they find DCIS with some invasion. Right breast was fine, but I decided I AM NOT DOING THIS AGAIN. So I told them to take both off. Everyone, including my aunt who had the same thing in 98, told me to have r econstruction right away. but I bought a book called a woman's decision which covers all the reconstruction options. While reading through and finding that these surgeries can create beautiful breasts, I also stopped to look at the 'before' pictures of woman with mastectomies. They looked like little girls without nipples. My husband looked at some pictures as well, and told me that whatever I wanted to do was up to me. He would be fine with it and in fact, seeing breastless women didn't bother him at all. I decided to postpone my reconstruction - perhaps not even do it. It depends on how I feel. I sailed through my surgery and am feeling great right now, even with 2 drains in my chest. I have had no pain, very little fatigue, and I know I made the right choice for me. You have to see this through yourself and do what is right for you. Sometimes, you are too frightened to know what that is. My main objectie was to get this cancer out of my body ASAP - and think about my former breasts later. My husband has seen my very flat chest - and trust me, the first time I saw it it was very strange. But it was not devastating, not even sad. Like the other woman on this email thread, I said goodbye to my breasts, and it wasn't as hard as I thought it wold be. Everyone is different. I had a much harder time losing my hair with Chemo the last time. (Am really really hoping they don't tell me I have to do that this time.) But the breasts are different. Start looking around at all the flat chested women out there. Do you really notice it at all? If it is as you say core to your identity, then you know you can have a gorgeious reconstruction - even better than before! So really, it's your choice. Your health is what matters. Please let me know how you are doing.
  • elizagain
    elizagain Member Posts: 43
    Hi, Joellyn, wish I had read your message earlier - BUT I just got hom on Saturday from having a bilateral mastectomy with no reconstruction myself! I was getting near the magic 5 year after having stage 1 in my left breast with a lumpectomy. Then they find DCIS with some invasion. Right breast was fine, but I decided I AM NOT DOING THIS AGAIN. So I told them to take both off. Everyone, including my aunt who had the same thing in 98, told me to have r econstruction right away. but I bought a book called a woman's decision which covers all the reconstruction options. While reading through and finding that these surgeries can create beautiful breasts, I also stopped to look at the 'before' pictures of woman with mastectomies. They looked like little girls without nipples. My husband looked at some pictures as well, and told me that whatever I wanted to do was up to me. He would be fine with it and in fact, seeing breastless women didn't bother him at all. I decided to postpone my reconstruction - perhaps not even do it. It depends on how I feel. I sailed through my surgery and am feeling great right now, even with 2 drains in my chest. I have had no pain, very little fatigue, and I know I made the right choice for me. You have to see this through yourself and do what is right for you. Sometimes, you are too frightened to know what that is. My main objectie was to get this cancer out of my body ASAP - and think about my former breasts later. My husband has seen my very flat chest - and trust me, the first time I saw it it was very strange. But it was not devastating, not even sad. Like the other woman on this email thread, I said goodbye to my breasts, and it wasn't as hard as I thought it wold be. Everyone is different. I had a much harder time losing my hair with Chemo the last time. (Am really really hoping they don't tell me I have to do that this time.) But the breasts are different. Start looking around at all the flat chested women out there. Do you really notice it at all? If it is as you say core to your identity, then you know you can have a gorgeious reconstruction - even better than before! So really, it's your choice. Your health is what matters. Please let me know how you are doing.
  • Joellyn
    Joellyn Member Posts: 4
    elizagain said:

    Hi, Joellyn, wish I had read your message earlier - BUT I just got hom on Saturday from having a bilateral mastectomy with no reconstruction myself! I was getting near the magic 5 year after having stage 1 in my left breast with a lumpectomy. Then they find DCIS with some invasion. Right breast was fine, but I decided I AM NOT DOING THIS AGAIN. So I told them to take both off. Everyone, including my aunt who had the same thing in 98, told me to have r econstruction right away. but I bought a book called a woman's decision which covers all the reconstruction options. While reading through and finding that these surgeries can create beautiful breasts, I also stopped to look at the 'before' pictures of woman with mastectomies. They looked like little girls without nipples. My husband looked at some pictures as well, and told me that whatever I wanted to do was up to me. He would be fine with it and in fact, seeing breastless women didn't bother him at all. I decided to postpone my reconstruction - perhaps not even do it. It depends on how I feel. I sailed through my surgery and am feeling great right now, even with 2 drains in my chest. I have had no pain, very little fatigue, and I know I made the right choice for me. You have to see this through yourself and do what is right for you. Sometimes, you are too frightened to know what that is. My main objectie was to get this cancer out of my body ASAP - and think about my former breasts later. My husband has seen my very flat chest - and trust me, the first time I saw it it was very strange. But it was not devastating, not even sad. Like the other woman on this email thread, I said goodbye to my breasts, and it wasn't as hard as I thought it wold be. Everyone is different. I had a much harder time losing my hair with Chemo the last time. (Am really really hoping they don't tell me I have to do that this time.) But the breasts are different. Start looking around at all the flat chested women out there. Do you really notice it at all? If it is as you say core to your identity, then you know you can have a gorgeious reconstruction - even better than before! So really, it's your choice. Your health is what matters. Please let me know how you are doing.

    Eliza, I'm doing much better now, thanks so much. I have chosen to do immediate reconstruction -- found a FABULOUS plastic surgeon in Boston...saw her 'gallery of stars' before and after pictures and I have to agree with both the patients of hers that I've spoken to and with her staff: "Dr Hertl makes REALLY good boobs." (!) I am going with implants, don't need to have more of my body put out of action (TRAM, DIEP etc.) and will see what they say from the node dissection. I'll go from a 42DDD to a 36-38 something or other, but they will BE there, and we can go on from that point.

    Your words were so helpful. Bless you.

    Surgery is 6/30 10:30am at Newton Wellesley Hospital in Newton MA. All prayers gratefully accepted.
  • elizagain
    elizagain Member Posts: 43
    Joellyn said:

    Eliza, I'm doing much better now, thanks so much. I have chosen to do immediate reconstruction -- found a FABULOUS plastic surgeon in Boston...saw her 'gallery of stars' before and after pictures and I have to agree with both the patients of hers that I've spoken to and with her staff: "Dr Hertl makes REALLY good boobs." (!) I am going with implants, don't need to have more of my body put out of action (TRAM, DIEP etc.) and will see what they say from the node dissection. I'll go from a 42DDD to a 36-38 something or other, but they will BE there, and we can go on from that point.

    Your words were so helpful. Bless you.

    Surgery is 6/30 10:30am at Newton Wellesley Hospital in Newton MA. All prayers gratefully accepted.

    Hi, Joellyn, I'm so glad that you found your solution! I've been checking back to see if you had any updates. I think the implants are a good idea. If I do reconstruction (I probably will once my chemo (yuck) is over) I'll do an implant on the right side and a latissimus dorsi on the left. God bless you!
  • PinkRibbonPal
    PinkRibbonPal Member Posts: 1
    Hi Joellyn...I came across your message and could certainly relate. I had a double mastectomy with immediate reconstruction 5 years ago. I was wondering how your surgery went and how you are feeling? Please write and let me know. Thinking of you,
    Debi
    Founder of FriendsInTouch.net