Hard time and difficult decisions

Dawne.Hope
Dawne.Hope Member Posts: 823
edited March 2014 in Breast Cancer #1
I'm having a hard time. I lost my mom last week to bc. She fought a long, hard battle. I was diagnosed with DCIS in August. And while caring for her, I've been trying to decide between radiation or go ahead and get a bi-lateral masectomy. It's an excruciating decision, and one that is even harder now that I'm dealing with the lost of my mom. I talked to a radiation onocologist and he told me that with radiation I have an 11% chance of recurrence, with possible side effects 20-30 years down the road. Eleven percent, is not good enough.

I talked to a breast surgeon last week, and while I know that a prophylatic masectomy isn't fool proof, it is less than 11%. I don't know if I'm paralyzed because I'm grieving, or what.

What should I do? "There is no right or good answer, or an answer that is right for everybody." "It's a personal decision." I know. I've heard those answers but I need to make a decision by next week and I just can't do it. When I think of the radiation I see red flashing lights ... just feel like it isn't a good decision for me. When I think of the bi-lateral mast. it makes me want to cry. Ah, I can't do this. I would like to be a kid again and have someone make the decision for me.

I don't know what I need. I think I've read all I can, talked to all different types of people, I think I just need to lament. I'm having a hard time. I don't want to make this decision. I don't want to lose my breasts. But I also don't want to die from breast cancer.
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Comments

  • mizcaldwell
    mizcaldwell Member Posts: 143
    My heart goes out to you.
    I'd like to wrap my arms around you and just let you lament, cry or whatever! You've had a hard time already - and you are just starting on this path for yourself. I lost my mom two years ago - and I know how hard that is - and then to have it be from BC and having a BC diagnosis - you deserve the right to rant/cry/etc.

    As you said, no one can tell you what is best for you - but pay attention to the red flags. If radiation is such a big flag for you - then that is not the way to go. I do not have DCIS - I had invasive carcinoma - but is a bilateral the only choice? Are both breasts affected by your diagnosis - or are you just thinking of being cautious?

    I am sure others who have the same diagnosis will weigh in on how they made their choices. I wish you peace and strength. You can do this - and we are here to help!

    God bless,

    Lori
  • New Flower
    New Flower Member Posts: 4,294
    Sorry for your loss
    I did not know about your Mom, I am very sorry for your loss.

    Yes, it is a very personal decision and very tough choice.
    16 moths ago I chosen mastectomy for myself. Unfortunately I had to have Chemo and radiation too.
    Every step or treatment has side effects and risks. If you can have immediate reconstruction without Chemo and/or radiation,
    ...
    I wish I can help. I want to be a kid again too, but we can't.
    Just sending you a Big Hug
  • fauxma
    fauxma Member Posts: 3,577 Member
    Dawn,
    My heart just goes out

    Dawn,
    My heart just goes out to you. To lose your mom to this and be in the middle of treatment. I know that Pitt also lost her mom a few weeks ago. And to have to make a decision like this. I wish I could wave a magic wand and make it all better. I don't know what I would do. There are things to look at with either choice. Radiation would spare your breasts but there is that 11% recurrence possibility. But the loss of your breasts is a big thing and doesn't guarantee that there wouldn't be a recurrence just makes it less likely. I think I would ask myself would I be able to handle a recurrence and more treatment if I opted to do the radiation or would I rather have them removed and know that recurrence is less likely but have to do reconstruction. Most of the ladies have had good results and are happy with their reconstruction so consider that as well. You already know that you must be the one to make this choice, but we are here to listen to you, to support you and to say prayers, good wishes, etc for you, but only you can decide which you can live with. And that is really it, which can YOU live with. I think that the overwhelming sense of loss with your mom is making this 100 times more difficult. So vent, rant, complain, grieve you have every right to and then take some calming breaths and reach into your heart and head and make the decision that will give you the most peace of mind.
    Cyber hugs dear Dawn

    Stef
  • marywest
    marywest Member Posts: 132
    Radiation
    Nothing wrong with radiation, it sounds scarrier than it is. 11% of reocurrance of it coming back, or you can look at 89% of it not coming back. My heart goes out to your for the loss of your mother, I am so sorry for pain and hurt you are going through. The greatest cargos of life come in over quiet seas, meaning try to get as peaceful as you can regarding this decision. Doctors have to tell you the odds, but it might not ever come back, I personaly choose to beleive that, and if it does then that is another bridge to cross if you come to it. I have a chance of BC coming back, in fact pretty big odds, but I would rather gamble and beleive I will continue to be cancer free. You will get several posts from women to love you and help you come to a decision, it is not an easy one but you have to decide. Sometimes its easier to look at the re-occurance instead of staying cancer free. Cancer no doubt is horrible and scary and when you have fear it make decision making alot harder. Get as quiet as you can inside, pray about it, It is Gods will for us to be healthy and when we are faced with challanges and dont' know what to do, he does. God always answers prayers, some how, some way and through some one, you will get an answer. 89% of it not coming back is a nice thought. I will be praying for you and thanking God to comfort you and to send people to love and bless you though out all of this.
  • chenheart
    chenheart Member Posts: 5,159
    Sweet Dawn~
    Of course you

    Sweet Dawn~

    Of course you want to be a kid again and have the decisions made for you! Losing your mom in the midst of your own treatment can be nothing but devastating. When I was diagnosed at 53, though my mom had already passed some years earlier, I was curled in a fetal position, rocking, weeping and wanting my mom to take care of me. We all understand your wanting to be a child with important decisions looming that only a grown up can take care of.

    I don't know what your decision will or should be. I do know that you will make the one that is right for you, and that your medical team will guide you. And us? We, as your sisters in arms and kindred spirits support you in your decision and hold you in our watch-care as you grieve the loss of your mother~ a fellow Kindred Spirit,and brave warrior to be sure.

    Hugs,
    Chen♥
  • Jeanne D
    Jeanne D Member Posts: 1,867
    marywest said:

    Radiation
    Nothing wrong with radiation, it sounds scarrier than it is. 11% of reocurrance of it coming back, or you can look at 89% of it not coming back. My heart goes out to your for the loss of your mother, I am so sorry for pain and hurt you are going through. The greatest cargos of life come in over quiet seas, meaning try to get as peaceful as you can regarding this decision. Doctors have to tell you the odds, but it might not ever come back, I personaly choose to beleive that, and if it does then that is another bridge to cross if you come to it. I have a chance of BC coming back, in fact pretty big odds, but I would rather gamble and beleive I will continue to be cancer free. You will get several posts from women to love you and help you come to a decision, it is not an easy one but you have to decide. Sometimes its easier to look at the re-occurance instead of staying cancer free. Cancer no doubt is horrible and scary and when you have fear it make decision making alot harder. Get as quiet as you can inside, pray about it, It is Gods will for us to be healthy and when we are faced with challanges and dont' know what to do, he does. God always answers prayers, some how, some way and through some one, you will get an answer. 89% of it not coming back is a nice thought. I will be praying for you and thanking God to comfort you and to send people to love and bless you though out all of this.

    I am so sorry Dawn
    Just saying how sorry I am doesn't seem like enough. I do know how you feel, too well. My Mother passed away 2 weeks after my lumpectomy this year with my 2nd bout of bc. My heart goes out to you and to your family. Having bc is hard enough, then to add this on top of it is just not fair, not fair at all. I know and truly understand. I pray that you will find some peace in this.....

    As far as whether you do rads or not, that is your choice and your choice only. Even if you don't like hearing those words or don't want the pressure of it, it is a choice that you will have to live with forever. I, personally, am very glad that I have chosen the lumpectomy's. But, that is me, my choice and what I knew I could live with. I have had radiation treatments twice, in 1985 and then this summer. They are very doable. My 2nd bc was a NEW cancer in my other breast, not a recurrence. As far as I know, your chance of a recurrence and life expectancy are the same with a lumpectomy with rads as with a mastectomy. I always hate when doctor's give us odds, but, I know that is part of their treatment.

    Dawn, I wish you had more time to think about this as with the passing of your Mother, you just have too many emotions going on to make such an important decision. Maybe, try to be alone for a little while and really give this some thought. What do you want, what can you deal with and live with? I will pray for you and your family Dawn.


    Love, Jeanne ♥
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    chenheart said:

    Sweet Dawn~
    Of course you

    Sweet Dawn~

    Of course you want to be a kid again and have the decisions made for you! Losing your mom in the midst of your own treatment can be nothing but devastating. When I was diagnosed at 53, though my mom had already passed some years earlier, I was curled in a fetal position, rocking, weeping and wanting my mom to take care of me. We all understand your wanting to be a child with important decisions looming that only a grown up can take care of.

    I don't know what your decision will or should be. I do know that you will make the one that is right for you, and that your medical team will guide you. And us? We, as your sisters in arms and kindred spirits support you in your decision and hold you in our watch-care as you grieve the loss of your mother~ a fellow Kindred Spirit,and brave warrior to be sure.

    Hugs,
    Chen♥

    Oh Dawn, I am so sorry for
    Oh Dawn, I am so sorry for your loss. I can't imagine how you must feel. Just know that I am here for you if you need me. I wish I could give you a big hug as that is what you need now. I don't know what to say about your decision. Others have given very good advice for you. I am just so sorry

    Sue
  • RE
    RE Member Posts: 4,591 Member
    My Condolences
    Dawne I am truly so very sorry for your loss, I wish I could help you to make this decision but I cannot. It is a choice you must make for yourself. I have had a lumpectomy in 97 and a mastectomy in 07. I am glad I still have one natural breast and am equally pleased with my reconstructed breast. My mom and I went through chemo together in 98 and she passed from ovarian cancer in 99. I was also in treatment when I lost my sister to pancreatic cancer so I know how awful it is to have to deal with cancer and the loss of a loved one to cancer all at the same time. Please take a few days to process the loss of your mom, allow yourself time to grieve then revisit this decision (just not too much time).

    I wish you the best,

    RE
  • Lynda53
    Lynda53 Member Posts: 210
    Dawn I am so sorry for your loss
    I don't know what advice to send. I am having a rb mastectomy in a week (IBC) I have had all the chemo I could, and will have to follow up with radiation. Right now, reconstruction is not at the top of the list.
    You have a tough decision, but I like 89% of not returning!
    Best wishes and healing to you. May your memories of your Mom bring you comfort.
    Peace
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    Dawne, I'm am so sorry for
    Dawne, I'm am so sorry for the loss of your mother. It's a very hard time in your life, I know, because I too lost my mother 3 years ago. Our mom's are supposed to be there to take care of us. Give yourself time to grieve and is it absolutely necessary that you make this decision so soon? Couldn't you, under the circumstances, re-schedule to a later date? It's just a suggestion based on the current situation. We're here for you and will help you get through this! Sending a big hug your way. Take care!
  • Sunrae
    Sunrae Member Posts: 808
    MyTurnNow said:

    Dawne, I'm am so sorry for
    Dawne, I'm am so sorry for the loss of your mother. It's a very hard time in your life, I know, because I too lost my mother 3 years ago. Our mom's are supposed to be there to take care of us. Give yourself time to grieve and is it absolutely necessary that you make this decision so soon? Couldn't you, under the circumstances, re-schedule to a later date? It's just a suggestion based on the current situation. We're here for you and will help you get through this! Sending a big hug your way. Take care!

    Dear Dawn, Sorry to hear
    Dear Dawn, Sorry to hear about the loss of your mom too. I lost my mom to bc several years ago and when I was dxed in Sept. I really wished I had her there for me. Then a calm came over me and I knew she is there for me. I too am wondering if you have to make this decision so fast. Will a few more weeks make any difference? Hope you will receive help in some way and you will know what is the right choice for you. You're in my thoughts and prayers.
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    Sunrae said:

    Dear Dawn, Sorry to hear
    Dear Dawn, Sorry to hear about the loss of your mom too. I lost my mom to bc several years ago and when I was dxed in Sept. I really wished I had her there for me. Then a calm came over me and I knew she is there for me. I too am wondering if you have to make this decision so fast. Will a few more weeks make any difference? Hope you will receive help in some way and you will know what is the right choice for you. You're in my thoughts and prayers.

    I am so sorry Dawn. To lose
    I am so sorry Dawn. To lose your Mother now is horrible. My sympathy to you.

    Is there anyway that you can wait longer to make your decision?

    Diane
  • always
    always Member Posts: 256
    DianeBC said:

    I am so sorry Dawn. To lose
    I am so sorry Dawn. To lose your Mother now is horrible. My sympathy to you.

    Is there anyway that you can wait longer to make your decision?

    Diane

    peace and calm
    I am praying for peace and calm to settle over you and around you. I am so sorry for your loss. I am certain that your mom is watching over you and wishing you peace as well. Take the advice to grieve and feel comfortable wishing you didn't have to make these decisions. Then the answers will come and you will battle on. We are all with you in spirit and sending as much goodness your way as we can. Take Care
    becky
  • Calleen
    Calleen Member Posts: 411
    always said:

    peace and calm
    I am praying for peace and calm to settle over you and around you. I am so sorry for your loss. I am certain that your mom is watching over you and wishing you peace as well. Take the advice to grieve and feel comfortable wishing you didn't have to make these decisions. Then the answers will come and you will battle on. We are all with you in spirit and sending as much goodness your way as we can. Take Care
    becky

    I too
    Lost my Precious Mother due to Breast Cancer. It was 13 1/2 years ago but I still completely understand how it feels. Her battle was different than mine and her choices were limited becasue hers was advanced. My reason for having a bilateral with immediate reconstruction was partily due to what my Mom went through but also what I knew was best for me long term. I didn't want to go through radiation. and I didn't want to worry about it coming back in either breast. I do know there is still a chance but if it does the chances are very slim and since I'm also aware of the possibility I know what to look for... I am at peace with my choice...

    Your Mom will always be with you..but now you have to listen with your Heart!!!

    Big Hugs and Prayers!!

    Calleen
  • ginann
    ginann Member Posts: 2
    I am so sorry for your loss.
    I am so sorry for your loss. I the last two years have been really hard on me and my family. I lost my father to lung cancer and 3 months later my big brother was murdered and 4 months after that my mother-in-law died. And then I got my diagnosis of breast cancer. This Quote from Walter Anderson helped

    “I am responsible. Although I may not be able to prevent the worst from happening, I am responsible for my attitude toward the inevitable misfortunes that darken life. Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have – life itself.”


    I know they are only words but know your not alone. Again,I'm sorry for your loss I know how you need your mom now more than ever.
  • lynn1950
    lynn1950 Member Posts: 2,570
    You have so much to grieve
    You have so much to grieve for; this is such a tough situation. Just remember: "no decision" is a decision too. Is that what you truly want? There is no obviously right decision to make...so any decision you do make is the right one for you. Feels like a roulette wheel doesn't it?

    If this helps....I had a bilateral mastectomy 18 months ago and I am still on the fence about reconstruction. But I am fine with my body for now. I am so glad that it is healthy and that it works. I don't have to wear a bra (yeah!), or worry about nipples, and I just strut my stuff! (My husband is a sweetie.) I also went through radiation; it wasn't a cakewalk, but 6 weeks is not forever and the future s/e's are just that, in the future for now. The current s/e's (scarring and stiffness) are way better than the alternative!

    It sounds like you need someone to reflect your thoughts and feelings off of. Have you spoken with a counselor or a social worker at your cancer center? Working through the decision process with a professional might be really productive for you.

    My heart goes out to you.

    xoxoxoxo Lynn
  • xskeetshooter
    xskeetshooter Member Posts: 169
    sorry about your lost
    my doc told me, even after chemo and radation i have 75% chance of it comeing back. but i still went for it, i figure 75% is better than no chance at all. hang in there girl and do eveything you can to beat this
  • ppurdin
    ppurdin Member Posts: 1,181
    Desiding
    Hi,I feel so bad for you.Bless your heart,lossing your mom and this this terrible decision.I lost my Mom when i was 22.So I really didn,t get to have her with me much in my adult life.I am doing radiation now.I have had 16 treatments.The treatment it self is not bad.I have to drive 80 miles to get their and back.I am getting tired more,but I am thinking the drive down their is part of me being tired.Like you said the decision is yours to make.I have had a lumpectomy,limph nods removed,Chemo and now radiation.And the dr. wants me to take the cancer pill for 5 yrs.That gives me a 11% of reacurance.This is just me,we all feel different about it,but God Forbid if it ever comes back I probley will have a masectomy.I may feel different at the time.But I don,t think so.I feel I have already done everything that I could.And that was important to me to know that I have.I will pray for you that you make the right desion.God bless you.all us sisters in pink are here if you need to talk.You can pm me any time.Love and Prayers.(Pat).
  • crselby
    crselby Member Posts: 441
    ginann said:

    I am so sorry for your loss.
    I am so sorry for your loss. I the last two years have been really hard on me and my family. I lost my father to lung cancer and 3 months later my big brother was murdered and 4 months after that my mother-in-law died. And then I got my diagnosis of breast cancer. This Quote from Walter Anderson helped

    “I am responsible. Although I may not be able to prevent the worst from happening, I am responsible for my attitude toward the inevitable misfortunes that darken life. Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have – life itself.”


    I know they are only words but know your not alone. Again,I'm sorry for your loss I know how you need your mom now more than ever.

    Great quote from the
    Great quote from the artist/madman.
  • jk1952
    jk1952 Member Posts: 613
    ppurdin said:

    Desiding
    Hi,I feel so bad for you.Bless your heart,lossing your mom and this this terrible decision.I lost my Mom when i was 22.So I really didn,t get to have her with me much in my adult life.I am doing radiation now.I have had 16 treatments.The treatment it self is not bad.I have to drive 80 miles to get their and back.I am getting tired more,but I am thinking the drive down their is part of me being tired.Like you said the decision is yours to make.I have had a lumpectomy,limph nods removed,Chemo and now radiation.And the dr. wants me to take the cancer pill for 5 yrs.That gives me a 11% of reacurance.This is just me,we all feel different about it,but God Forbid if it ever comes back I probley will have a masectomy.I may feel different at the time.But I don,t think so.I feel I have already done everything that I could.And that was important to me to know that I have.I will pray for you that you make the right desion.God bless you.all us sisters in pink are here if you need to talk.You can pm me any time.Love and Prayers.(Pat).

    Dawn, I am so sorry to hear
    Dawn, I am so sorry to hear about the loss of your mom. I can understand why you are having such a hard time making a decision: grief can really impact your decision-making abilities and your confidence.

    Someone else asked if you have to make a decision this week, or can you put it off for a month. My experience with DCIS is that, although you shouldn't delay forever, you do have some time to make a decision that's right for you. But, it really depends on what advice your doctors give you about how long you should go before you need to decide.

    My circumstances are a lot like yours. I was diagnosed with DCIS and LCIS (same as DCIS but lobular not ductal) in 2000, along with a very small amount of invasive lobular cancer. I had the lumpectomy and radiation done at that time. Earlier this year, DCIS was discovered in the same breast and I chose a bilateral mastectomy (instead of only the right side) and immediate DIEP reconstruction. I am very happy with the decisions that I made: they were right for me at each time in my life. By doing the radiation in 2000, I was able to keep my own breasts longer, and I was able to have the DIEP reconstruction (which is quite new in the US) which I am very happy with. I don't think that I would have been satisfied with the implants, just because they require so much 'maintenance', and fortunately, there have been a lot of medical advances since 2000.

    When I finally decided on the bilateral mastectomy this spring, instead of one, I had a great deal of peace that this was the right thing. I pray that you can also sense that peace, with the decision that you make.

    Joyce