Help I've entered into an unknown world

sunshine_62
sunshine_62 Member Posts: 2
edited March 2014 in Breast Cancer #1
I'm 46 years old and have just been told I have breast cancer. I've gotten my pathology report and I have Inflitrating Ductal Carcinoma and was told by my doctor that I can choose lumpetomy, mastectomy or double mastectomy, radiation and chemo will depend upon my choice and the findings. Just like all of you that found out you had cancer, I feel like I am walking into this unknow world, I find myself speaking language that I have never spoken before. I'm coming here to find comfort and strenght from my fellow sisters and knowledge on how to make this decision on what to do, please help. I've just recently remarried in June and I feel so bad for my new husband and his children the youngest 8 who we have full time. I look forward to you wise words of wisdom.

Comments

  • nancyh1314
    nancyh1314 Member Posts: 11
    Unknown World
    Hi Sunshine,
    First let me say that my thoughts are with you and I can share your feelings. I was diagnosed with ductal carcinoma invasive breast cancer, stage 1 two years ago at age 57. At first it was a feeling of disbelief, then sadness, then I got angry. I guess it's a pretty normal progression of emotions. I had been extremely healthy, hardly even a cold. My experience had been go to the doctor once in a great while for maybe strep throat or something and the medical advice was pretty clear : take this and you will feel better. Not too much decision-making on my part. The strangest part about the breast cancer diagnosis is suddenly having so many choices and it's up to you to decide your path. Getting a second opinion helped me to truly make the diagnosis mine, embrace it if you will. It firmed it up in my mind and allowed me to move onto the next step in decision-making. I had a lumpectomy and before I received the pathology report about 'clean vs non-clean margins' I had decided I would have a mastectomy if margins were not clean. I chose to not have a second lumpectomy. I made a decision but was never 100% convinced it would be the right one. How can you be totally sure? The margins were not clear so I did have a mastectomy. When the tumor was analyzed after the lumpectomy, it was a grade 4 so it reinforced my decision to move forward with a mastectomy. I had reconstructive surgery using tissue from my abdomen (tram flap) at the same time as the mastectomy. I was a good candidate due to overall good health, weight, non-smoker. Recovery is longer due to two surgical sites (about 4-5 weeks) but that has to be considered in light of your personal choice and life's demands. Other types of reconstruction are possible as well. I opted for my own tissue instead of an implant beacause implants have about a 10 year life span and need to be replaced. Also, using my own tissue allows for weight gains/losses and maintaining two even-sized breasts. An implant size doesn't change as the body changes. On the bright side, although I have a scar across my lower abdomen, the procedure amounts to a tummy tuck. How Beverly Hills !

    I did not have radiation but did have chemotherapy and other drugs called mon-clonal antibodies. I started off with the strongest stuff (Adriamycin and Cytoxan) and then was infused with the easier-to-tolerate stuff. My total treatment time was 14 months. At first it looked like a long tunnel with no light at the end. But I found as I went along that after the AC, the other treatments were much easier and became pretty routine. I worked through most of it with time off when I needed a couple of days off after treatment.

    That's a quick summary with lots of other stuff in between. I hope it helps a bit and I look forward to hearing from you. A loving husband is great and like most stuff, he will take his cues from you so it takes some adapting. Same with kids. I wish you well and, if I can, I would like to help you along the way.
  • dbs1673
    dbs1673 Member Posts: 203
    unknown
    So sorry for your news Sunshine but glad you found this site. There are so many things that swim through your head. I'm 48, was diagnosis DCIS in May in my right breast and had a double mastectomy in June. Things I would encourage you to consider are your own family history, previous biopsies that you may have had, your breast size/shape and confidence with your dr. Initially it seemed as if having the double mas would eliminate the need for any further treatment but my final patholgy report indicated that radiation is necessary. I chose to have reconstruction at the time of my surgery and had expanders placed. I've got one week to go for the radiation. Like all of us, we didn't choose this path and yet some wonderful bonds have been formed. I wish I didn't have to make any choices but I can say that I have no regrets about what I chose for me. Use the strength of your new marriage bond and the faith and belief of your 8 year old to help chose what is right for you. We're all right here when you need.
  • GrandmaJoy
    GrandmaJoy Member Posts: 1
    Take a deep breath
    Hi sunshine_62. I'm a couple years older than you, and found out I had IDC in July, just like you. Even my doctor was shocked, since I went in for a simple cyst removal. My husband and I were shocked. You are going to be seeing alot of doctors who will be giving you alot of information. Feel free to take a tape recorder, I did. My mind was reeling and I would forget some of what was said. Even with my husband going with me, I hated to call him at work two days later to ask about something said I should do at the Dr. appointment.

    I went through so many emotions, and even after I thought things were under control, I would break down in tears. I called those my Jello moments, because just like Jello, I thought I had my emotions firmly in my grasp, they would slip through my fingers.

    I also had the choice of a lumpectomy, mastectomy and concidered a double mastectomy for myself, due to calcifications in my other breast. I chose the mastectomy, and that was the hardest decision I ever made. It was three weeks ago, and glad I chose that, the pathologist found another spot of cancer that the MRI missed, and would have been left behind if I had chosen the lumpectomy. I cried all by myself the nite before my surgery, mourning the loss of my breast. I did not think I would be able to make it to the hospital the next morning, I was sure fear would take over and I would want to chicken out. But the tears the nite before cleansed me, and I was cool, calm and collected going to the hospital and into surgery. I have a grandson on the way, and chose life over a perfect exterior body. I am just as jovial, professional and looking forward to things I have planned to do as before. My biggest problem is trying to slow myself down to recover from surgery. I am very active, and not being able to do work around the house and yard really bothers me. I know it is only temporary and I joke about only being to supervise at this point.

    I will get some of the book titles I found helpful, and get them to you. Don't go all over the internet looking for info - keep to sites like this, it is more factual and accurate. You are not alone, though at times it feels that way. I have met some very wonderful people on this large speed bump in my road of life. They have aired my tires and even helped me push uphill when I needed it. ;)

    Grandma Joy
  • zahalene
    zahalene Member Posts: 670
    Thank you, thank you, thank you!
    Sunshine, you have been hovering over my house in N.E. Arkansas for several days now and doing a SPLENDID job. Thank you so much, and keep up the good work. (Teehee)
    Ahem, now...down to business.
    I lost both breasts, one in '86 and one in '88. Had to make all these decisions you are facing now. Had two young kids to consider. The whole nine yards. (Chose not to have recon).
    From a perspective of some passage of time let me reassure you about something: You are going to take the information and good old common horse sense God gave you, and you are going to make the best decision you possibly can. Then you are going to implement that decision with the help of your doctors, friends, family, and US. THEN (here comes the best part), you are going to move on through and beyond this challenge and live your future with NO REGRETS. Because you will know you have done what had to be done, and who can ask more of themselves than that?
    We must get together for a celebration when you are ready to toast YOUR 22 year survival. :)
  • seetha
    seetha Member Posts: 6
    For my mom - please advice
    Hello All,

    Today is one of the darkest days in my life. I just learnt that my mom has stage 4 - breast cancer!!

    She has been complaining about having small lump in her left breast and decoloration of the skin for the past 6-7 months. I asked her to go to a doctor and she failed to take mammogram(she lives in India, while we live in Seattle). She visited us and during her stay of 3 months, she had a increase in swelling and breathing trouble, hence we send her back to get full medical attention (lacking medical insurance here). Now after 2 weeks of tests, we hear that she has got Stage IV breast cancer. We are getting the reports tomorrow. Its very shocking and I feel horrible that we didn't take good care of her.

    Is this curable? What do we do next? (the doctors are going to suggest the next steps, but looks like the chance to survive is bleak). I am scrambling for information on cancer now (too late?). I would like to hear from friends, experts and others in this forum.

    Can I save her? I am under heavy distress now. :((

    God bless and thanks,
    Kumar
  • Joycelouise
    Joycelouise Member Posts: 482
    Hi, sunshine! Nice
    Hi, sunshine! Nice name...Yes, you will have a lot to learn and decide. You can't do it all at once. Please do decide to be as loving as possible to yourself as you go through this and allow yourself to feel all the feelings. And take it one day at a time.
    Here is my experience. I was 49 at DX (11 months ago). I have it "worse" than you with a stage 2 with 2 nodes positive. I had a mas, chemo, and radiation. I cried a lot but got through it all and am now busy growing my hair back and putting my trust in life back.
    One thing I didn't understand when I went into this was that radiation damages the tissue and some doc.s don't want to do expanders on radiated tissue. Expanders are implants that are gradually filled, stretching the tissue to allow for the final implant. Radiation makes the tissues less flexible. Also, I didn't understand that you need to have a bit of excess body fat to do a non-implant reconstruction. I have not enough so an implant is my only choice. You can have an implant at the time of the mas. but it may complicate radiation a little. Talk to your doc. about all this.
    One piece of advice is to find an oncologist now, as well as a surgeon, to help you make treatment decisions. It is the onc. who will pick up after the surgery and is the expert. I did switch a couple of doctors when I decided they were not the best for me and I encourage you to be sure you are happy with your care.
    For the day to day struggles with emotions and need for support, count on us to help in anyway we can. Dealing with the emotions was hard for me, and still is sometimes. Being part of this sisterhood helps SO MUCH! Welcome and best wishes. Love, Joyce
  • mmontero38
    mmontero38 Member Posts: 1,510
    seetha said:

    For my mom - please advice
    Hello All,

    Today is one of the darkest days in my life. I just learnt that my mom has stage 4 - breast cancer!!

    She has been complaining about having small lump in her left breast and decoloration of the skin for the past 6-7 months. I asked her to go to a doctor and she failed to take mammogram(she lives in India, while we live in Seattle). She visited us and during her stay of 3 months, she had a increase in swelling and breathing trouble, hence we send her back to get full medical attention (lacking medical insurance here). Now after 2 weeks of tests, we hear that she has got Stage IV breast cancer. We are getting the reports tomorrow. Its very shocking and I feel horrible that we didn't take good care of her.

    Is this curable? What do we do next? (the doctors are going to suggest the next steps, but looks like the chance to survive is bleak). I am scrambling for information on cancer now (too late?). I would like to hear from friends, experts and others in this forum.

    Can I save her? I am under heavy distress now. :((

    God bless and thanks,
    Kumar

    advice for mom
    Hello Kumar: Sorry to hear of your mom's troubles but there is little we can tell you until you get the results back. There are many on this board who have survived stage iv breast cancer. I think it would depend on where it has metastasized whether it be bones, lungs, etc. At which point I think they would treat not only the breast cancer but the other cancer as well. You have come to the right place. Here you will meet many women and men that have gone down the path your mother will be going. And they are all wonderful. I was dx with IDC last June and am now done with all treatments and reconstruction. Luckily, I was at Stage 1 with no lymph node involvement but still had to go through chemo because of vascular invasion. Chemo was not easy but it is doable. Please post again as soon as you have your mom's pathology report and maybe we'll be able to advice you further. Hugs to you and you mom, Lili
  • mmontero38
    mmontero38 Member Posts: 1,510
    Hi Sunshine: Thank God you
    Hi Sunshine: Thank God you have found this site. The women and men here are a God send and we will all try to help out in any way we can. I was also dx with IDC like you. Luckily, I was Stage 1 Grade 3 Tumor with vascular invasion, which means they found some cells in my blood vessels in the breast, therefore, I had to go through chemo. But backtracking some, it was a time in my life that I would not wish on my worst enemy. The fear of the unknown, and the uncertainty of what to do were tremendous pressures. I thank God every day for my husband who was a tremendous support during my whole episode of going through cancer. It affects everyone in the family not only you.

    Just know that you will get through this. It will be a difficult time but it also depends on your attitude and disposition. If you take everything one step at a time, you will be ok.

    My words of wisdom: Take someone with you to all your dr appts. They will give you so much information that you just go into overload. At least, the other person will be able to hear much more than you will.

    Keep a notebook handy. Any questions, that you have you jot down and then ask the doctor when you go to the next visit. Believe me, you get so overwhelmed that you forget half of the questions you may have had.

    Don't rush into a decision. Go for a second opinion and visit with a plastic surgeon. That way you will be much more informed and make an educated decision. Either way, the decision is ultimately yours, and you have to feel comfortable with whatever you decide.

    Lastly, don't feel bad for anyone other than yourself. You have the battle of your life. Surround yourself with positive people, if anyone offers to help accept all the help you can get because you will need it. Anytime, you feel the need to talk, vent, cry, or even rejoice, we are here for you. Post anytime, we will all try to help in anyway we can. Hugs to you and God Bless, Lili

    PS Keep us posted.
  • Eil4186
    Eil4186 Member Posts: 949

    Unknown World
    Hi Sunshine,
    First let me say that my thoughts are with you and I can share your feelings. I was diagnosed with ductal carcinoma invasive breast cancer, stage 1 two years ago at age 57. At first it was a feeling of disbelief, then sadness, then I got angry. I guess it's a pretty normal progression of emotions. I had been extremely healthy, hardly even a cold. My experience had been go to the doctor once in a great while for maybe strep throat or something and the medical advice was pretty clear : take this and you will feel better. Not too much decision-making on my part. The strangest part about the breast cancer diagnosis is suddenly having so many choices and it's up to you to decide your path. Getting a second opinion helped me to truly make the diagnosis mine, embrace it if you will. It firmed it up in my mind and allowed me to move onto the next step in decision-making. I had a lumpectomy and before I received the pathology report about 'clean vs non-clean margins' I had decided I would have a mastectomy if margins were not clean. I chose to not have a second lumpectomy. I made a decision but was never 100% convinced it would be the right one. How can you be totally sure? The margins were not clear so I did have a mastectomy. When the tumor was analyzed after the lumpectomy, it was a grade 4 so it reinforced my decision to move forward with a mastectomy. I had reconstructive surgery using tissue from my abdomen (tram flap) at the same time as the mastectomy. I was a good candidate due to overall good health, weight, non-smoker. Recovery is longer due to two surgical sites (about 4-5 weeks) but that has to be considered in light of your personal choice and life's demands. Other types of reconstruction are possible as well. I opted for my own tissue instead of an implant beacause implants have about a 10 year life span and need to be replaced. Also, using my own tissue allows for weight gains/losses and maintaining two even-sized breasts. An implant size doesn't change as the body changes. On the bright side, although I have a scar across my lower abdomen, the procedure amounts to a tummy tuck. How Beverly Hills !

    I did not have radiation but did have chemotherapy and other drugs called mon-clonal antibodies. I started off with the strongest stuff (Adriamycin and Cytoxan) and then was infused with the easier-to-tolerate stuff. My total treatment time was 14 months. At first it looked like a long tunnel with no light at the end. But I found as I went along that after the AC, the other treatments were much easier and became pretty routine. I worked through most of it with time off when I needed a couple of days off after treatment.

    That's a quick summary with lots of other stuff in between. I hope it helps a bit and I look forward to hearing from you. A loving husband is great and like most stuff, he will take his cues from you so it takes some adapting. Same with kids. I wish you well and, if I can, I would like to help you along the way.

    Im so glad that everything
    Im so glad that everything has worked out and you are finished with treatment. I have never heard of a grade 4 tumor. Do you know what your scores were on the individual tests were?
  • sunshine_62
    sunshine_62 Member Posts: 2

    Unknown World
    Hi Sunshine,
    First let me say that my thoughts are with you and I can share your feelings. I was diagnosed with ductal carcinoma invasive breast cancer, stage 1 two years ago at age 57. At first it was a feeling of disbelief, then sadness, then I got angry. I guess it's a pretty normal progression of emotions. I had been extremely healthy, hardly even a cold. My experience had been go to the doctor once in a great while for maybe strep throat or something and the medical advice was pretty clear : take this and you will feel better. Not too much decision-making on my part. The strangest part about the breast cancer diagnosis is suddenly having so many choices and it's up to you to decide your path. Getting a second opinion helped me to truly make the diagnosis mine, embrace it if you will. It firmed it up in my mind and allowed me to move onto the next step in decision-making. I had a lumpectomy and before I received the pathology report about 'clean vs non-clean margins' I had decided I would have a mastectomy if margins were not clean. I chose to not have a second lumpectomy. I made a decision but was never 100% convinced it would be the right one. How can you be totally sure? The margins were not clear so I did have a mastectomy. When the tumor was analyzed after the lumpectomy, it was a grade 4 so it reinforced my decision to move forward with a mastectomy. I had reconstructive surgery using tissue from my abdomen (tram flap) at the same time as the mastectomy. I was a good candidate due to overall good health, weight, non-smoker. Recovery is longer due to two surgical sites (about 4-5 weeks) but that has to be considered in light of your personal choice and life's demands. Other types of reconstruction are possible as well. I opted for my own tissue instead of an implant beacause implants have about a 10 year life span and need to be replaced. Also, using my own tissue allows for weight gains/losses and maintaining two even-sized breasts. An implant size doesn't change as the body changes. On the bright side, although I have a scar across my lower abdomen, the procedure amounts to a tummy tuck. How Beverly Hills !

    I did not have radiation but did have chemotherapy and other drugs called mon-clonal antibodies. I started off with the strongest stuff (Adriamycin and Cytoxan) and then was infused with the easier-to-tolerate stuff. My total treatment time was 14 months. At first it looked like a long tunnel with no light at the end. But I found as I went along that after the AC, the other treatments were much easier and became pretty routine. I worked through most of it with time off when I needed a couple of days off after treatment.

    That's a quick summary with lots of other stuff in between. I hope it helps a bit and I look forward to hearing from you. A loving husband is great and like most stuff, he will take his cues from you so it takes some adapting. Same with kids. I wish you well and, if I can, I would like to help you along the way.

    Nancy, thank you so much for
    Nancy, thank you so much for your story and taking the time to tell it.I know that I will need your help through the mountains and valleys that are ahead of me. I never realized how widespread breast cancer is until it happened to me. Thank you for being an example of strength and encouragement.
  • nancyh1314
    nancyh1314 Member Posts: 11
    Eil4186 said:

    Im so glad that everything
    Im so glad that everything has worked out and you are finished with treatment. I have never heard of a grade 4 tumor. Do you know what your scores were on the individual tests were?

    Grading of Tumor
    Hello !

    Just as a point of info for anyone who might be interested, you can read about tumor grading on the American Cancer Society website. Just enter 'tumor grade' in the search section and the first hit covers staging and grading. From what my dr told me, patients might not always be aware of the grade of the tumor that is removed but that the grading is an important factor in determining course of treatment.

    My best to all of you !

    Nancy
  • BOWMAN57
    BOWMAN57 Member Posts: 4
    zahalene said:

    Thank you, thank you, thank you!
    Sunshine, you have been hovering over my house in N.E. Arkansas for several days now and doing a SPLENDID job. Thank you so much, and keep up the good work. (Teehee)
    Ahem, now...down to business.
    I lost both breasts, one in '86 and one in '88. Had to make all these decisions you are facing now. Had two young kids to consider. The whole nine yards. (Chose not to have recon).
    From a perspective of some passage of time let me reassure you about something: You are going to take the information and good old common horse sense God gave you, and you are going to make the best decision you possibly can. Then you are going to implement that decision with the help of your doctors, friends, family, and US. THEN (here comes the best part), you are going to move on through and beyond this challenge and live your future with NO REGRETS. Because you will know you have done what had to be done, and who can ask more of themselves than that?
    We must get together for a celebration when you are ready to toast YOUR 22 year survival. :)

    I couldn't have said it
    I couldn't have said it better myself. You're so right. So many people say "attitude" makes the difference and I think yours makes "mega sense".