New and anxious!

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eihtak
eihtak Member Posts: 1,473 Member
Hi, I have posted a few times but am still kind of new here. About one year ago I began treatment for Stage3 Anal Cancer...chemo/rad. I had a colostomy bag put in before treatment and still have (may become permanent). For the past several years my husband has been under treatment for Multiple Myeloma, a blood cancer and 3 months ago received a bone marrow transplant. I have many dental issues and am in the process of having partial dentures made, ( this means I have had several teeth pulled ) You would think that along with normal family issues would be enough, but when I went for my last PET scan last month I was diagnosed with Secretory Carcinoma of the breast...a very rare slow growing cancer. It has been difficult finding much info on this rare cancer, tho my docs, who I do have much faith in feel confident in their plan of action. On wed. the 21st I am scheduled for a mastectomy. I have decided to have a double to help lower my future risk. My mother died of ovarian cancer and my aunt is a breast cancer survivor. They will examine only 1-2 lymph nodes but said no radiation and probably no chemo. I am 53yrs old, menopause was goofed up with anal cancer treatment, but doc said no tamoxifin but would put me on Arimdex ??? (I think thats the word) for 5yrs. I would love any input on if this sounds like the right path???? I am NED for anal cancer at this time but at high risk for recurrence. Should I also be thinking hysterectomy because of my moms ovarian cancer? My mind is mush from being a patient/care-giver/mom/grandma/wife....etc. It is after 1am and I can't sleep because I thought I was ready for this surgery and now I'm scared to death. I'm scared of the surgery itself having some unusual complication and also my life and family's lack of understanding my emotional needs. I guess I'm in need of the Pink Bus thing and any advice, prayers, or help you have to offer. This life between myself and my husband both dealing with cancer has been a mental,financial,physical,rollercoaster and I just want to ride steady for a while!! Sorry to ramble, like I said....nervous about Wednesday. Thanks for listening, its so good to have you all there. My prayers to all as well!

Comments

  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
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    Welcome
    Welcome. I know it seems silly to say don't worry because I know you will. Just cut down on worrying. You will find that some things just aren't worth worrying about.

    Get laundry detergent down low, as heavy lifting will be a problem after surgery.

    Also Galons of milk can be heavy. Either buy half galons or take half an put it in a pitcher. Also set fridge shelves up so you do not have to put the milk up high in the fridge.

    Depending on how warm it is where you live you may want to get some tank tops for after surgery. Or beter yet some pajama tops with the button down front. You will have drains and they can be pinned on the inside of the pajama top but even better is to have a pocket on the inside of the pj top just below the breast (off set to the side a bit) for the drain to sit in. I guess you would need one on each side since it sounds like you are having a double masectomy. I had the tank tops and pinned the drain to my tank top and then wore button up blouses over the tank top myself. It's just that the pockets are a little less awkward. I even bought the guys tank tops when I just wanted white ones as they are a bit cheaper. I have them in all colors and still use them today.

    I do not know anything about the kind of breast cancer you have but you can rest assured that since it is a slow growing cancer you probably will not have a late stage breast cancer.

    I know I haven't thought of every thing here but some of the other sisters will chime in on other things I forgot.
  • zahalene
    zahalene Member Posts: 670
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    We are all so alike and so different.
    We all say, 'Well, I had this, and my Dr said this, and I did this, and I had this treatment, and this is what happened to me.....'
    The fact is that each bc case is different and new just because it is US this time and not someone else we know or have heard of or seen on tv. OMG IT HAPPENED TO ME!
    So I just want to say....
    I have survived for over 25 years since I was first dx with bc (a total of 3 cancers over a span of 10 years), and I now live a good life with people who love me. But I didn't get here by accident. It took a lot of hard work, putting one foot in front of the other, having doctors I trusted, leaning on others for support (ESPECIALLY HERE), and sometimes just facing the day about 15 minutes at a time.
    BUT IT IS WORTH IT. Your time will come when you will say I DID IT! I KICKED CANCER'S BUTT! Now it's time to do what I want to do because I did what I had to do.
    God bless.
  • VickiSam
    VickiSam Member Posts: 9,079 Member
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    Welcome
    Welcome. I know it seems silly to say don't worry because I know you will. Just cut down on worrying. You will find that some things just aren't worth worrying about.

    Get laundry detergent down low, as heavy lifting will be a problem after surgery.

    Also Galons of milk can be heavy. Either buy half galons or take half an put it in a pitcher. Also set fridge shelves up so you do not have to put the milk up high in the fridge.

    Depending on how warm it is where you live you may want to get some tank tops for after surgery. Or beter yet some pajama tops with the button down front. You will have drains and they can be pinned on the inside of the pajama top but even better is to have a pocket on the inside of the pj top just below the breast (off set to the side a bit) for the drain to sit in. I guess you would need one on each side since it sounds like you are having a double masectomy. I had the tank tops and pinned the drain to my tank top and then wore button up blouses over the tank top myself. It's just that the pockets are a little less awkward. I even bought the guys tank tops when I just wanted white ones as they are a bit cheaper. I have them in all colors and still use them today.

    I do not know anything about the kind of breast cancer you have but you can rest assured that since it is a slow growing cancer you probably will not have a late stage breast cancer.

    I know I haven't thought of every thing here but some of the other sisters will chime in on other things I forgot.

    Prayers and Positive thoughts for you ...
    Here are a few suggestions that helped me ..

    Take pain medication as prescribed. Small frozen pea's help with inflammation
    -please check with your Doctor first -- I was instructed no HOT pad's of
    any type!

    Multiple pillows in various, sizes help will you sleep, as your back is the
    only viable option in the beginning. Also, many Sisters in PINK sleep on a
    recliner comfortably.

    Please have cups, saucers, plates at arm level - as well as re-arranging your fridge for more commonly used items at arm levels. Tide/Downy small container sizes - also at arm level. Reaching up and grabbing heavy items -- will tear your stitches, as well as hurt your arms. Muscles and tissue in breast, as well as arm areas will be cut,moved and sewn back together.

    I tried to take a bath ..but hence could not pull myself out of the our spa tub, no muscles or strength in my arms after bilateral mastectomy.. It took my husband, and daughter some time to pull me out of the tub == without hurting me. Not a pretty time, or sight to say the least. So I opted to shower ...My husband removed our shower head, and replaced it with a flex hose type so I could shower maneuvering the flex hose from waist down, as well as place shower water under my arms.

    -- Clean, wash and prepare as many precooked meals as possible -- changes are you
    will not be able to do a lot in first week or two.

    Lastly, please make sure you do your exercises as prescribed by Plastic Surgeon, and Physical Therapist. Exercise is so VERY important.

    Strength, Courage, Hope and Speedy recovery.

    Vicki Sam
  • New Flower
    New Flower Member Posts: 4,294
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    zahalene said:

    We are all so alike and so different.
    We all say, 'Well, I had this, and my Dr said this, and I did this, and I had this treatment, and this is what happened to me.....'
    The fact is that each bc case is different and new just because it is US this time and not someone else we know or have heard of or seen on tv. OMG IT HAPPENED TO ME!
    So I just want to say....
    I have survived for over 25 years since I was first dx with bc (a total of 3 cancers over a span of 10 years), and I now live a good life with people who love me. But I didn't get here by accident. It took a lot of hard work, putting one foot in front of the other, having doctors I trusted, leaning on others for support (ESPECIALLY HERE), and sometimes just facing the day about 15 minutes at a time.
    BUT IT IS WORTH IT. Your time will come when you will say I DID IT! I KICKED CANCER'S BUTT! Now it's time to do what I want to do because I did what I had to do.
    God bless.

    Good luck with your surgery
    Sending positive thoughts it will go well for you. As far as other treatment please wait until your pathology report comes back. Base on your mastectomy pathology your oncologist and you will develop your future treatment plan. Since you have a family history you need to see a genetic counselor first get genetic testing and made decision on hysterectomy. Please ask your doctor for anti-axiety medication to help you feel confident about your upcoming surgery.
    Good luck
    New Flower
  • Ann2800103
    Ann2800103 Member Posts: 31
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    zahalene said:

    We are all so alike and so different.
    We all say, 'Well, I had this, and my Dr said this, and I did this, and I had this treatment, and this is what happened to me.....'
    The fact is that each bc case is different and new just because it is US this time and not someone else we know or have heard of or seen on tv. OMG IT HAPPENED TO ME!
    So I just want to say....
    I have survived for over 25 years since I was first dx with bc (a total of 3 cancers over a span of 10 years), and I now live a good life with people who love me. But I didn't get here by accident. It took a lot of hard work, putting one foot in front of the other, having doctors I trusted, leaning on others for support (ESPECIALLY HERE), and sometimes just facing the day about 15 minutes at a time.
    BUT IT IS WORTH IT. Your time will come when you will say I DID IT! I KICKED CANCER'S BUTT! Now it's time to do what I want to do because I did what I had to do.
    God bless.

    Oh wow thats great
    I just read your post. I am out 14 years and reading your post made me feel great. I had a reoccurence in 2009 went to hip and femur. they replaced both. Now on Lupron and femara Your post give many hope....thank you so much
    Hugs
    Annie
  • eihtak
    eihtak Member Posts: 1,473 Member
    Options
    VickiSam said:

    Prayers and Positive thoughts for you ...
    Here are a few suggestions that helped me ..

    Take pain medication as prescribed. Small frozen pea's help with inflammation
    -please check with your Doctor first -- I was instructed no HOT pad's of
    any type!

    Multiple pillows in various, sizes help will you sleep, as your back is the
    only viable option in the beginning. Also, many Sisters in PINK sleep on a
    recliner comfortably.

    Please have cups, saucers, plates at arm level - as well as re-arranging your fridge for more commonly used items at arm levels. Tide/Downy small container sizes - also at arm level. Reaching up and grabbing heavy items -- will tear your stitches, as well as hurt your arms. Muscles and tissue in breast, as well as arm areas will be cut,moved and sewn back together.

    I tried to take a bath ..but hence could not pull myself out of the our spa tub, no muscles or strength in my arms after bilateral mastectomy.. It took my husband, and daughter some time to pull me out of the tub == without hurting me. Not a pretty time, or sight to say the least. So I opted to shower ...My husband removed our shower head, and replaced it with a flex hose type so I could shower maneuvering the flex hose from waist down, as well as place shower water under my arms.

    -- Clean, wash and prepare as many precooked meals as possible -- changes are you
    will not be able to do a lot in first week or two.

    Lastly, please make sure you do your exercises as prescribed by Plastic Surgeon, and Physical Therapist. Exercise is so VERY important.

    Strength, Courage, Hope and Speedy recovery.

    Vicki Sam

    You are all so kind!
    My husband installed a flex hose for me after my anal cancer last year to help wash my ever so sore bottom...guess it was a good idea! I have always worked out a bit and have "muscle arms" so hope to get them back before too long.
  • eihtak
    eihtak Member Posts: 1,473 Member
    Options

    Welcome
    Welcome. I know it seems silly to say don't worry because I know you will. Just cut down on worrying. You will find that some things just aren't worth worrying about.

    Get laundry detergent down low, as heavy lifting will be a problem after surgery.

    Also Galons of milk can be heavy. Either buy half galons or take half an put it in a pitcher. Also set fridge shelves up so you do not have to put the milk up high in the fridge.

    Depending on how warm it is where you live you may want to get some tank tops for after surgery. Or beter yet some pajama tops with the button down front. You will have drains and they can be pinned on the inside of the pajama top but even better is to have a pocket on the inside of the pj top just below the breast (off set to the side a bit) for the drain to sit in. I guess you would need one on each side since it sounds like you are having a double masectomy. I had the tank tops and pinned the drain to my tank top and then wore button up blouses over the tank top myself. It's just that the pockets are a little less awkward. I even bought the guys tank tops when I just wanted white ones as they are a bit cheaper. I have them in all colors and still use them today.

    I do not know anything about the kind of breast cancer you have but you can rest assured that since it is a slow growing cancer you probably will not have a late stage breast cancer.

    I know I haven't thought of every thing here but some of the other sisters will chime in on other things I forgot.

    Great ideas
    Thank you for the helpful hints...I love the idea about the inside pockets. How long did you have the drains? Also I have already scheduled an appointment to talk about genetic testing. I'll do whatever I can to help my daughters and grandchildren in the future. My posts may seem random but my mind is so full right now, my surgery is tomorrow, so keeping busy and getting things ready at home. Thank you all for your prayers and support!
  • eihtak
    eihtak Member Posts: 1,473 Member
    Options
    zahalene said:

    We are all so alike and so different.
    We all say, 'Well, I had this, and my Dr said this, and I did this, and I had this treatment, and this is what happened to me.....'
    The fact is that each bc case is different and new just because it is US this time and not someone else we know or have heard of or seen on tv. OMG IT HAPPENED TO ME!
    So I just want to say....
    I have survived for over 25 years since I was first dx with bc (a total of 3 cancers over a span of 10 years), and I now live a good life with people who love me. But I didn't get here by accident. It took a lot of hard work, putting one foot in front of the other, having doctors I trusted, leaning on others for support (ESPECIALLY HERE), and sometimes just facing the day about 15 minutes at a time.
    BUT IT IS WORTH IT. Your time will come when you will say I DID IT! I KICKED CANCER'S BUTT! Now it's time to do what I want to do because I did what I had to do.
    God bless.

    zahalene...
    WOW...I will read your posts whenever I need a lift, you are a true survivor of this and I will plan to join you!!!
  • MNLynn
    MNLynn Member Posts: 224
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    surgeries etc
    I was diagnosed with breast cancer 2 years ago and did a single mastectomy. My doctors would have been fine with me doing a lumpectomy, but I do have a family history, so decided to fight this aggresively right from the start. I was post-menopausal at the time of my diagnosis, so am on Arimidex for 5 years. I have not had any side effects from the drug. Also, it is available in a generic form, so much cheaper than it had been when I first started on it.

    My oncologist wants me to do the BRCA test, but so far I have not done that. However, since I do have a family history of breast cancer, she gave the "ok" to have my ovaries & fallopian tubes removed . . . and we just did the whole hysterectomy thing along with that.

    I have been very much at peace with the decisions I've made to do the mastectomy (no reconstruction) and the hysterectomy etc. surgeries. I do feel like I've given myself the advantage over cancer by making these choices.

    My prayers are with you as you head into surgery tomorrow. You have been through so much already . . . I hope you know that we are there with you in our thoughts & prayers.

    ~ Lynn ♥
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
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    Ramble away...we dont'
    Ramble away...we dont' mind...

    I TOTALLY get lack of family understanding..sorry so much going on in your life...

    Denise
  • juliebookoch
    juliebookoch Member Posts: 11
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    Get plenty of sleep
    My prayers are with you! I hope your surgery went well yesterday.

    I opted for bilateral mastectomy w immediate reconstruction and followed many of the suggestions people have posted here for you. They are great. I would also add how important your sleep is for you, especially during the first weeks after surgery. I found I needed naps some days and if I was able to actually get even a short one, I felt much better. If you have trouble sleeping at night, I would talk to your doctor about meds to help with that. I thought I would need help sleeping as I am (was)a belly sleeper, which is not possible during recovery from surgery. However, I was able to sleep the first week or two simply with the pain meds. I got off them onto just some ibuprofen then needed a little bit of help with a low dose of over-the-counter sleep aid sometimes to get a full nights' sleep.

    I will be saying a prayer for you and your family after I post this. My husband was diagnosed with advanced head and neck cancer almost exactly one year before I was diagnosed with breast cancer. He is doing well after chemo, rad & surgery. We have seen huge blessings in our lives during this time of trials.

    Blessings to you!

    Julie