34-year old newly diagnosed - don't know how to go on

mimivac
mimivac Member Posts: 2,143
edited March 2014 in Breast Cancer #1
I am 34-years old and newly diagnosed with stage IIa breast cancer (no nodes involved). As is the case for many young breast cancer patients, I am not ER positive. I am falling apart and keep thinking that the being ER negative is going to kill me. I had a lumpectomy with clean margins, and I start chemo on Friday -- I'm terrified of that as well. How does one go on? I keep thinking that I will not be around for much longer, and it's destroying any joy in life I might have. My poor husband is doing all he can to take care of me, but this has been the most difficult and lowest point in our lives. You guys seem to really know how to cope on this board. I just want to have some hope for my future, and I can't seem to muster that right now. How long does it take to start living again?
«1

Comments

  • zahalene
    zahalene Member Posts: 670
    Mimi, as you spend more and more time with us here (and we do urge you to do just that in the days to come), you will meet many ladies with excellent advice such as RE just gave you. However, we are not medical professionals, and we keep reminding each other to ASK YOUR DOCTORS any and all questions you have. Make lists of things you need to know, take notes in the doctor's office, or better yet, take someone with you to be an extra pair of 'ears' in case you miss something. You will be given a lot of information and you can't possibly process it all at once.
    And on the top of your list write "GET A SUPPORT SYSTEM IN PLACE". Whether it is family members, friends, a church group,...get people organized to be available to just drop by and call and check to see if there is anything they can do, and when they DO ask, be ready with a specific task or need that they can take of for you. People really do want to help and usually just need specific suggestions as to what you need at the moment. Don't be shy. Soon you will be 'paying it forward' to someone else who needs your help and support.
    Your hubby sounds like a real gem, but he needs to take good care of himself too so he does not become overwhelmed and burnt out in his care of you. I would suggest that the two of you work out a time when he can just go off and 'chill' in whatever way he enjoys while friends and family look after you for a day or two.
    Most of the time you are going to feel capable of carrying on with your life pretty much as normal while on chemo, but there will be days when you need to simplify things as much as possible, and stay out of public places where flu and cold germs are running rampant, etc. So don't expect the worst or the best but just know that you will get through the next few months and before you know it, you will be out there 'movin and shakin' again. Hugs and God bless. :)
  • RE
    RE Member Posts: 4,591 Member
    Moving Forward
    Hello Mimi,

    I am sorry you have to deal with this, that said I am glad you found us welcome! The feelingS you are having are very normal, hearing one has cancer is so very scary. The early days before treatment can be very difficult indeed. You are in a fairly early stage with no node involvement which is very good. I know it feels devastating right now, but trust me it will get better.

    Chemo is doable and you will get through it. You will be tired, have aches and some nausea but the doctors have meds to make all of this tolerable. Take it one day at a time Mimi, and know that the treatments you are having are a good thing; they will sustain your life and allow you to get back to a healthier you.

    I always say that cancer cannot have my joy and you too will get there, it is just early on and very difficult to to see a future right now. Please believe me there is a future for you and many happy days ahead. Please continue to come here with any questions you have or just to vent when you need to. We have all been down the path you are on.

    Sending ((((HUGS))))

    RE
  • Joycelouise
    Joycelouise Member Posts: 482
    I promise you, it will get
    I promise you, it will get easier. You will get through this. And you will become one of the women you admire...with a strong and beautiful spirit.
    And you will probably need to whimper a little or a lot a long the way. That is okay and part of the healing. I think that chemo messes with our moods. I cried on a daily basis. YOu can write us here with any emotion you have. Someone, or all of us, will have been there too.
    I am glad that you found your cancer early. Remember, with the lumpectomy you are cancer free, medically. Now the chemo is just being done to make sure you stay that way. You are already a survivor.
    I know I went through some hard times in my marriage. My husband seemed to understand that I needed the freedom to express anger, pain, and even inappropriate wild emotions. Maybe let your husband know how much you appreciate his support and help him understand that it is going to take you a fair amount of time to deal with it. When I was first diagnosed, the nurse told my husband and me, in a no nonsense voice, "It's going to be a rough year". It was. But that was good advice because a year has passed, and it is MUCH better now. Keep the faith.
    Know that we are here for you. Write often. Love, Joyce
  • mimivac
    mimivac Member Posts: 2,143

    I promise you, it will get
    I promise you, it will get easier. You will get through this. And you will become one of the women you admire...with a strong and beautiful spirit.
    And you will probably need to whimper a little or a lot a long the way. That is okay and part of the healing. I think that chemo messes with our moods. I cried on a daily basis. YOu can write us here with any emotion you have. Someone, or all of us, will have been there too.
    I am glad that you found your cancer early. Remember, with the lumpectomy you are cancer free, medically. Now the chemo is just being done to make sure you stay that way. You are already a survivor.
    I know I went through some hard times in my marriage. My husband seemed to understand that I needed the freedom to express anger, pain, and even inappropriate wild emotions. Maybe let your husband know how much you appreciate his support and help him understand that it is going to take you a fair amount of time to deal with it. When I was first diagnosed, the nurse told my husband and me, in a no nonsense voice, "It's going to be a rough year". It was. But that was good advice because a year has passed, and it is MUCH better now. Keep the faith.
    Know that we are here for you. Write often. Love, Joyce

    thank you
    Thank you for your wonderful responses. I am feeling better and more hopeful today. It is good to know that it does get better, at least emotionally. I was getting so very anxious that I began to feel that I was losing my vision as well. I made an appointment with my eye doctor, and I just got back -- my vision has actually improved over the last year. It's crazy how the emotional aspect of this can be so overwhelming. I have never felt that I was a particularly strong person, so there are times when I just don't know how to get through this -- or if I will. Three doctors have so far told me that I am not going to die, but then I will read something on the internet about young women's cancer and start to doubt. Has anyone dealt with this kind of thing? My doctors seem optimistic, but in my worst moments I am certain that they are wrong. I can't seem to trust anything right now.
  • zahalene
    zahalene Member Posts: 670
    mimivac said:

    thank you
    Thank you for your wonderful responses. I am feeling better and more hopeful today. It is good to know that it does get better, at least emotionally. I was getting so very anxious that I began to feel that I was losing my vision as well. I made an appointment with my eye doctor, and I just got back -- my vision has actually improved over the last year. It's crazy how the emotional aspect of this can be so overwhelming. I have never felt that I was a particularly strong person, so there are times when I just don't know how to get through this -- or if I will. Three doctors have so far told me that I am not going to die, but then I will read something on the internet about young women's cancer and start to doubt. Has anyone dealt with this kind of thing? My doctors seem optimistic, but in my worst moments I am certain that they are wrong. I can't seem to trust anything right now.

    Get OFF the net!
    Except for us of course. :)
    You can read tooooo much stuff on the internet that is based on too few studies and is too slanted to fit the writers opinion, etc, etc.
    Listen to your doctors. They are the ones who know YOU and your situation.
    You might enjoy coming to our chat room. It's a hoot. Guaranteed to give you a good belly laugh if you stay very long and sometimes that is the best medicine. But we also 'serious down' when it is called for and do our best to support and uphold each other. Hope to see you there.
  • mmontero38
    mmontero38 Member Posts: 1,510
    Hi Mimi and welcome to the
    Hi Mimi and welcome to the club no one wants to join. It is very overwhelming being diagnosed with cancer. You need to have a support group in place. Your husband is a start, but you will need family members or friends to help out also. The first advise I can give you is to accept all the help everyone is willing to give you. Have a note pad handy and write down every question that pops into your head so that when you go back to the doctor, you won't forget what you wanted to ask him. Take someone with you at all times. We tend to not hear everything the doctors tell us because sometimes it is too much information and we go on overload. We aren't doctors, but we can all tell you the experiences that we have had. Your best source of information is the doctor and his nurses. Keep them on your side because they will be there for all your needs more than the doctor. They are a great source of knowledge. Then take a deep breath because you have gotten rid of the disease as soon as you had your surgery and the margins came back clean. It will be a hard year, don't kid yourself, but it is doable and with the support of your family and ours here you will get through it. Please post any questions you may have as we will try to answer to the best of our ability. Hugs to you and your family, Lili
  • mimivac
    mimivac Member Posts: 2,143

    Hi Mimi and welcome to the
    Hi Mimi and welcome to the club no one wants to join. It is very overwhelming being diagnosed with cancer. You need to have a support group in place. Your husband is a start, but you will need family members or friends to help out also. The first advise I can give you is to accept all the help everyone is willing to give you. Have a note pad handy and write down every question that pops into your head so that when you go back to the doctor, you won't forget what you wanted to ask him. Take someone with you at all times. We tend to not hear everything the doctors tell us because sometimes it is too much information and we go on overload. We aren't doctors, but we can all tell you the experiences that we have had. Your best source of information is the doctor and his nurses. Keep them on your side because they will be there for all your needs more than the doctor. They are a great source of knowledge. Then take a deep breath because you have gotten rid of the disease as soon as you had your surgery and the margins came back clean. It will be a hard year, don't kid yourself, but it is doable and with the support of your family and ours here you will get through it. Please post any questions you may have as we will try to answer to the best of our ability. Hugs to you and your family, Lili

    You guys are great
    Lili, thank you for the encourgaing email. Is it normal to think that maybe your doctors are wrong and that the disease is far more advanced than they know? Everytime I have a minor ache, I think, "I knew it, the cancer is in my bones!" It is driving me crazy. You are right that I need to get off the internet. If I were to read that stuff, I would (and did) believe that I am a goner in 1-2 years. None of my doctors has suggested that this is the case, but I am super paranoid. Does this type of thinking get better? I keep thinking that there is something they missed -- something really bad. How awful to be tortured by these thoughts. They really get in the way of life. I really, really want to make it through this. I would love to join in a chat. How would I do that?
  • Joycelouise
    Joycelouise Member Posts: 482
    mimivac said:

    You guys are great
    Lili, thank you for the encourgaing email. Is it normal to think that maybe your doctors are wrong and that the disease is far more advanced than they know? Everytime I have a minor ache, I think, "I knew it, the cancer is in my bones!" It is driving me crazy. You are right that I need to get off the internet. If I were to read that stuff, I would (and did) believe that I am a goner in 1-2 years. None of my doctors has suggested that this is the case, but I am super paranoid. Does this type of thinking get better? I keep thinking that there is something they missed -- something really bad. How awful to be tortured by these thoughts. They really get in the way of life. I really, really want to make it through this. I would love to join in a chat. How would I do that?

    Yes, yes! It is normal to
    Yes, yes! It is normal to think that every pain is bad news. Just knowing that will help. So will having a few checked out and being told that it is nothing!, so get them checked out with your doctor when you are worried. As surely as I can tell you it will get easier, I will tell you it won't happen right away. The image of a roller coaster has been used many times as we have good days and bad days. Your desire to get through this and not be tortured by these thoughts is going to get you through. It is important when you start your chemo to remember that the chemo is going to mess with your body, but it is the CURE doing that, and not the illness. I tried to stay away from the internet and from the charts and statistics. It is not just a desire to bury my head in the sand. The statistics are complicated and there are many important factors that we do not always know when viewing them. Like the many recent advances can not possibly show long term affects yet because they haven't been around for more than five years! love, Joyce
  • RE
    RE Member Posts: 4,591 Member
    mimivac said:

    You guys are great
    Lili, thank you for the encourgaing email. Is it normal to think that maybe your doctors are wrong and that the disease is far more advanced than they know? Everytime I have a minor ache, I think, "I knew it, the cancer is in my bones!" It is driving me crazy. You are right that I need to get off the internet. If I were to read that stuff, I would (and did) believe that I am a goner in 1-2 years. None of my doctors has suggested that this is the case, but I am super paranoid. Does this type of thinking get better? I keep thinking that there is something they missed -- something really bad. How awful to be tortured by these thoughts. They really get in the way of life. I really, really want to make it through this. I would love to join in a chat. How would I do that?

    SURPRISE.....YOU ARE NORMAL!! :-)
    Mimi being fearful of more cancer is such a normal way of thinking, don't feel bad it does get better. For me it has never totally gone away, but it is leaps and bounds better. In a way it is a good thing to because it lets the docs know when something seems wrong, don't ever think something is not important enough to tell your doctors let them check out your concerns. Sometimes the aches and pains are just scar tissue or spasms from surgery. I am 11 out from my first surgery and I still get muscle spasms sometimes.

    Lili is right, this year will have its mountains to climb but we have all done it and we know that you will too. We are here for you on days when you just need the gals (and even a few guys).

    In regards to chat just go to the home CSN page and in the middle section you should see "chatrooms" just click on it and wait while it redirects you to the chatrooms. It does take a bit of time sometimes so be patient, there are a lot of caring folks who visit chat.

    Now, take a deep breath and say....I AM A SURVIVOR AND I AM GONNA BEAT THIS CANCER! Remember we are but a keystroke away!

    (((((HUGS TO OUR NEWEST SURVIVOR)))))

    RE
  • Jadie
    Jadie Member Posts: 723
    Slow down Mimi. Some people
    Slow down Mimi. Some people might tell you to take one day at a time but, I say to live in the moment. Don't let your mind rush into tomorrow, next week or next month. You do have a rough road ahead of you for the next few months. Just remember to keep your eye on the light at the end of the tunnel. It does get better.

    Surround your self with positive people and people you love. Be careful who you talk to (or what you read on the internet).

    Remember chemo is a good thing. Think of it as your friend. It is here to help you and make you better.

    ((((Hugs))))
    Jadie
  • zahalene
    zahalene Member Posts: 670
    Jadie said:

    Slow down Mimi. Some people
    Slow down Mimi. Some people might tell you to take one day at a time but, I say to live in the moment. Don't let your mind rush into tomorrow, next week or next month. You do have a rough road ahead of you for the next few months. Just remember to keep your eye on the light at the end of the tunnel. It does get better.

    Surround your self with positive people and people you love. Be careful who you talk to (or what you read on the internet).

    Remember chemo is a good thing. Think of it as your friend. It is here to help you and make you better.

    ((((Hugs))))
    Jadie

    I am weird.....but....
    You said when you get an ache or pain you think, "I knew it, its worse than my doctors said it was!" Well, I was just the opposite. I was never ill from cancer (chemo nearly killed me for a few days after each treatment), and after recovering from each treatment I would think, "I don't believe I even have cancer...I feel too good...cancer should be a REAL sick feeling."
    Anyway, maybe you could turn your thinking around and when you have a good day, just assure yourself that everything is going great and you are on your way out of this maze FOREVER. Then in the not-so-good moments remind yourself of the more positive times.
    We do whatever works. :)
  • mimivac
    mimivac Member Posts: 2,143
    Jadie said:

    Slow down Mimi. Some people
    Slow down Mimi. Some people might tell you to take one day at a time but, I say to live in the moment. Don't let your mind rush into tomorrow, next week or next month. You do have a rough road ahead of you for the next few months. Just remember to keep your eye on the light at the end of the tunnel. It does get better.

    Surround your self with positive people and people you love. Be careful who you talk to (or what you read on the internet).

    Remember chemo is a good thing. Think of it as your friend. It is here to help you and make you better.

    ((((Hugs))))
    Jadie

    Living for the day
    I know I should live for the moment, but it is very difficult for me at times. I am by nature a very, very forward-looking person. If I'm taking a relaxing bubble bath, I think, "I really like this moment, maybe I'll take a bubble bath every week." So, now I am at a loss. I can still be happy for the moment, but then I start down the dark road of "what if this is the last time..." Very self-defeating. But, thanks to you guys, I have been more hopeful and less despondent today. The evenings are the hardest for me. I tended to become anxious at night even before the diagnosis, so now you can imagine....

    On the good side, it is a beautiful day here in the DC area -- 65 degrees and a wonderful scent in the air.
  • Joycelouise
    Joycelouise Member Posts: 482
    mimivac said:

    Living for the day
    I know I should live for the moment, but it is very difficult for me at times. I am by nature a very, very forward-looking person. If I'm taking a relaxing bubble bath, I think, "I really like this moment, maybe I'll take a bubble bath every week." So, now I am at a loss. I can still be happy for the moment, but then I start down the dark road of "what if this is the last time..." Very self-defeating. But, thanks to you guys, I have been more hopeful and less despondent today. The evenings are the hardest for me. I tended to become anxious at night even before the diagnosis, so now you can imagine....

    On the good side, it is a beautiful day here in the DC area -- 65 degrees and a wonderful scent in the air.

    I used to have trouble
    I used to have trouble living in the moment and I coupled that with a real need to be in control. Well, it may be hard to say there are good things about this battle with the beast, but as some sort of parting gift, cancer has given me an ability to appreciate life that I (almost) think I wouldn't trade back. Yes, there are some rough times ahead, but there are actually some blessing waiting for you too. No need to deny the bad (and sometimes it feels great to just let a good complaining session out) but please know, there are some jewels along the way.
    All that being said, I still had a hard time and found that a prescription of Ativan helped me through some of the worse nights. You might ask your doctor about it. It is a common anti-anxiety drug that was not habit forming for me and was easy to put aside when I didn't need it.
    love, Joyce
  • mimivac
    mimivac Member Posts: 2,143

    I used to have trouble
    I used to have trouble living in the moment and I coupled that with a real need to be in control. Well, it may be hard to say there are good things about this battle with the beast, but as some sort of parting gift, cancer has given me an ability to appreciate life that I (almost) think I wouldn't trade back. Yes, there are some rough times ahead, but there are actually some blessing waiting for you too. No need to deny the bad (and sometimes it feels great to just let a good complaining session out) but please know, there are some jewels along the way.
    All that being said, I still had a hard time and found that a prescription of Ativan helped me through some of the worse nights. You might ask your doctor about it. It is a common anti-anxiety drug that was not habit forming for me and was easy to put aside when I didn't need it.
    love, Joyce

    Good to know
    Good to know that there may be a silver lining to this, as awful as it is right now. I also have a need to be in control, so this is very difficult. I think my doctor did mention Ativan. She prescribed Effixor, which made me really nervous and jumpy so I stopped taking it. I have a previous Xanax prescription that she said I could also use for anxiety. The xanax doesn't have any side-effects for me, so I will go with that. The only problem is that it's fairly short-acting, so if I take it for sleep I end up waking up in the middle of the night anyway. I have been doing it pretty much on my own, but I am definitely not averse to getting some help once in a while.
  • mmontero38
    mmontero38 Member Posts: 1,510
    mimivac said:

    Good to know
    Good to know that there may be a silver lining to this, as awful as it is right now. I also have a need to be in control, so this is very difficult. I think my doctor did mention Ativan. She prescribed Effixor, which made me really nervous and jumpy so I stopped taking it. I have a previous Xanax prescription that she said I could also use for anxiety. The xanax doesn't have any side-effects for me, so I will go with that. The only problem is that it's fairly short-acting, so if I take it for sleep I end up waking up in the middle of the night anyway. I have been doing it pretty much on my own, but I am definitely not averse to getting some help once in a while.

    Hi Mimi, I'm so glad you are
    Hi Mimi, I'm so glad you are posting with us. To get into the chat room is easy. It is in the same box when you first sign in as the discussion board just further down. Make sure you have java installed on your computer because you need it. I hope to see you there. Hugs, Lili
  • kbc4869
    kbc4869 Member Posts: 159
    Hi Mimi
    Welcome, Mimi. I'm so sorry that you have to be here, but glad that you found us.

    I was 34 when I was dxed -- Stage 2b with 2 lyphmnodes. Did lumpectomy, chemo, rads, and now tamoxifin. It's been five years and I'm still here -- happy, healthy, and living my life. So, yes -- you will absolutely get through this. There are a lot of us out here.

    So, how do you do it? You take it day by day. You do all the treatment. You ask your doctor lots of questions. You accept help when you need it. You lean on your wonderful husband. When you're tired, you rest. When you're sad, you cry. When it all gets to be too much, breath. When you're mad, come on here and scream and tell us how much it sucks. We'll agree with you.

    Yes, that first chemo is scary. I was pertified. But it's never as bad as you think it is. It's not like the movies make it out to be -- there are great drugs out there that will help you. Take them. If you still feel lousy, talk to you chemo nurse. Try something different. Your chemo nurse will be your best friend for the next few months.

    You're going to get through this. And you'll come out the other end -- stronger, wiser, a little different -- but you. And you will smile and laugh again. I promise.

    Love,
    K

    BTW, there is another board -- youngsurvival.org. Lots of people your age on there. CSN BC ladies are awesome, but if you feel the need to connect to others your age, try there. And of course, feel free to reach out to me through personal email if you would like to talk. Best to you!
  • KathiM
    KathiM Member Posts: 8,028 Member
    I agree with others....
    Keep in mind that this is something with an end...and then you pick up living again!

    It's wonderful that your hubby is so supportive...having support makes it sooo much easier!!!

    My suggestion...think of something you can do AFTER treatment is over...I planned a trip to Palm Springs to a resort I know...it got me thru some low points to remember this is where I was going AFTER...

    Hugs, Kathi
  • phoenixrising
    phoenixrising Member Posts: 1,508
    Hi Mimi, I can't add much
    Hi Mimi, I can't add much to what these wise women have already said but I do want to welcome you and let you know you have one more person here to help support you. I do know about Joy being destroyed and can tell you you will get it back. We need to first let go of the fear. Thank goodness you have such a supportive husband. We wish you well. Come here often.

    Warm wishes
    jan
  • mimivac
    mimivac Member Posts: 2,143

    Hi Mimi, I can't add much
    Hi Mimi, I can't add much to what these wise women have already said but I do want to welcome you and let you know you have one more person here to help support you. I do know about Joy being destroyed and can tell you you will get it back. We need to first let go of the fear. Thank goodness you have such a supportive husband. We wish you well. Come here often.

    Warm wishes
    jan

    Bad day
    Thanks. I am having a bad day today. I took a personal day from work and just can't keep the dark thoughts away. I keep thinking, what's the point of planning something for after treatment when I don't how things will work out. What if treatment doesn't work b/c of my particularly aggressive cancer? I know that these thoughts do not help, and makes things much worse for my emotional state. My husband begged me to get up and go to work this morning, but I just couldn't do it. He doesn't want me to sit at home and stew in morbid thoughts all day. I don't either, but going in was just so difficult. We're having a holiday lunch and the thought of getting together with everyone at work and talking about the holidays and hearing how happy everyone is was just too overwhelming. I want desperately to let go and be able to live in the moment and also believe that I will be OK, but I keep thinking of all the things against me living. What a mess.
  • KathiM
    KathiM Member Posts: 8,028 Member
    mimivac said:

    Bad day
    Thanks. I am having a bad day today. I took a personal day from work and just can't keep the dark thoughts away. I keep thinking, what's the point of planning something for after treatment when I don't how things will work out. What if treatment doesn't work b/c of my particularly aggressive cancer? I know that these thoughts do not help, and makes things much worse for my emotional state. My husband begged me to get up and go to work this morning, but I just couldn't do it. He doesn't want me to sit at home and stew in morbid thoughts all day. I don't either, but going in was just so difficult. We're having a holiday lunch and the thought of getting together with everyone at work and talking about the holidays and hearing how happy everyone is was just too overwhelming. I want desperately to let go and be able to live in the moment and also believe that I will be OK, but I keep thinking of all the things against me living. What a mess.

    Dark thoughts are ok, for an hour or two...
    but longer than that, call your oncologist and ask for help....

    To respond to your thoughts....none of us know whether treatment will work or not, but we MUST believe!!! (Just like the song). I talked to alot of survivors that were VERY long-term....25 and 30 years. This was uplifting.

    My first cancer (rectal) was diagnosed the day after Thanksgiving. "Well, Kathi, we know it's cancer, but we don't know how to treat it. You need to get your affairs in order, we don't know how far it has spread." My daughter came home to live with me when my beau's father died a week before treatment was to begin. I said "I DON'T want ANY Christmas...how can I even THINK about celebrations right now." She said "I'm going to decorate anyway, if I'm going to live here!" She did, and it was the BEST! Even on Christmas day, after a full week of chemo and radiation when I was sick, exhausted and in bed, my family still came and we had dinner (well, actually, THEY had dinner, I had tea...lol). Long story short, they picked the right treatment, and I was well enough after surgery to start treatment for my 'other' cancer, breast cancer. I am now 4 years post-diagnosis, and am cancer free! (officially a semi-colon, but no cancer..lol).

    Laughter was a big part. I found something every day to laugh about, even if it was small. Mel Brooks movies, and MASH got me thru many loooooong days. It DOES get easier. They first times were hard to laugh, and when they told me I had cancer AGAIN, well, I just said "I am so weary, I can't go on." One oncologist said it best "Kathi, you have battled so strongly and suffered so much already, why would you throw that away by not continuing the battle until the beast is vanquished?"

    Hugs, Kathi