post mastectomy, I'm so unsure of everything
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Cancer is overwhelming, isn't it! I don't know what the oncologist is going to recommend, but take a tape recorder along with you and ask for whatever reports he can give you so you can read over them at leisure until you understand exactly what treatment is recommended (if any) and why. They are beginning to be able to stage cancer by type and determine which cancers are aggressive even from very small beginnings. Aggressive cancer needs aggressive treatment. But often they recommend watchful waiting and no treatment when the results from chemo would bring no statistically meanful results. No matter what they recommend, they will leave the decision to you. Go for a second opinion if you have any questions, preferably with a breast oncology specialist. As for the jolts, yes they will get better in time. When the surgeon does a mastectomy, a lot of nerves get cut. Not removed, cut. They still fire when stimulated and getting moved around and cut made them plenty fired up. They can only fire when the chemicals are in the right balance and it takes time (15 minutes or so)for the balance to get just right so they can fire again. Your brain doesn't register the new you, so these nerves send signals that the brain interprets in strange ways. One author explained that she would be eating dinner with her family and suddenly she felt like someone was biting her missing nipple--very disconcerting when you are trying to carry on regular dinner conversation! The nerves and the brain do adopt in time. The first month is the worst. When my stitches were healed and the surgeon allowed it, I found that light massage would make the nerves fire all at once. Then they would stop firing for a period of time. Eventually the crazy sensations died off for the most part. Mind you, as crazy as those sensations were, I didn't want a totally numb breast area. Things might be much flatter on my right side, but there are some areas that still work though the usual landmarks for my husband are missing. I will let you read between the lines here and decide what else breasts are good for besides breast feeding! The doctor appointments are overwhelming when you are newly diagnosed. A friend gave me a great piece of advice. She said she put her cancer appointments on her calendar and never missed them or taking her meds. But the rest of the time she carried on with normal life the best she could. She said it was a little like having a split personality. Cancer was always in the background, but with effort it only took center stage during her appointments. My husband and I look forward to going out to eat at a fancy restaurant when we travel to my apppointments. When I go by myself (not something I recommend until things are under control and you are just going for a recheck), I go shopping. It helps. Eventually you find a new normal and life goes on.0
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I also had invasive intraductal which did not spread to the lymph nodes. I also chose to have a mastectomy, and I'm glad I did, because AFTER the surgery I was tested and found to have the BRCA gene, in which it is recommended to have a mastectomy. In Sept. I will have a preventive mastectomy on my other breast because with BRCA it's more likely to get cancer in the opposite breast. Anyway, I don't know about an electronic jolt, but I experienced all kinds of weird and painful sensations after the mastectomy for an entire month. At times I was very depressed and felt like dying, but I am here to tell you that EVERYTHING WENT AWAY IN TIME. I think it took about one month to feel normal again. So don't despair! I'm sure all your strange feelings will go away, too. Regarding the adjuvant therapy, that means chemo. I did four rounds of chemo: other people may have had a different experience, but I hardly had any side effects at all other than a bad taste in my mouth (which went away) and losing 75% of my hair which will grow back. So hang in there! Ohilly0
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lady, I am a 22 year breast survivor as of this month. I had 2 radical mastectomies at different times followed by chemo, radiation, and tamoxifen.
I chose not to have reconstruction.
I consider myself and my life as normal as anyone else's. I had a 1 and 12 year old when all this began, they are grown now, and I am in a good place, enjoying my life on my terms.
I say all this to encourage you. It all comes out in the wash. But it takes time, some starch, some bleach, and maybe some ironing. But the finished product is spiffy enough for a fancy dress ball!
God bless.0 -
Yes it sure is overwhelming. All of you made sense and I could relate. I didn't feel all that bad while I was still in the hospital, but I have not felt good since they released me. I got to a point where I was not getting up in the night to take pain meds, but now I'm back to setting the timer so I can stay on top of the pain. One day I'm ten feet tall and bulletproof, and the next day I want to die. I move sooo slowly, I hug my left arm to my body for protection, holding it tight there with my right arm. I walk as lightly as I can because every footstep sends vibrations thru my body, those electric jolts. My shoulder curls forward and I'm crampy from holding this unusual posture. My husband looped a rope thru a plant hook and set me a chair under it so I can work my arm by moving the rope from side to side, so I am doing some exercises. But I hurt so bad and I wonder if the exercises are hurting or helping. I don't want ANYBODY around me. My husband's family keeps wanting to come over and babysit me, but they stare and galk at me, it makes me uncomfortable. I want my husband to be able to tell people that 'my wife just had surgery and nobody needs to be at our house until she's better'. But he's such a nice guy, he doesn't know how to be authoritive. Here is it 4th of July weekend and the whole family wants to hang out at our house. While I'm seething, staying in my bedroom because I can't even make myself presentable with a curling iron with one working arm. If I walk into the kitchen to get me somethign to drink, they all stand and stare at me, and oh my gosh I just cring. I'm certainly not making any friends. And I KNOW I'm being a witch but I can't seem to keep it under wraps. I've never been the type to hold in my feelings, ...instead I wear my heart on my sleeve and leave little of what I'm feeling to the imagination. Sometimes that is a good quality, but more often it is not. Like now.unknown said:lady, I am a 22 year breast survivor as of this month. I had 2 radical mastectomies at different times followed by chemo, radiation, and tamoxifen.
I chose not to have reconstruction.
I consider myself and my life as normal as anyone else's. I had a 1 and 12 year old when all this began, they are grown now, and I am in a good place, enjoying my life on my terms.
I say all this to encourage you. It all comes out in the wash. But it takes time, some starch, some bleach, and maybe some ironing. But the finished product is spiffy enough for a fancy dress ball!
God bless.
I am very glad to read that the electric jolts will get better, and will try to focus on the hope that these horrible feelings are temporary. I know I'm not the first woman in the world to go through this... but in my own little world in my own little body, ...I feel very alone. If I can just get myself a little better, then I know me and I'll get more proactive. I know it lifts my mood when you all to tell me it gets better and when I read other's stories. I know me, a support group will be good for me... but I can't drive yet, I can't hardly even dress myself yet. And like I said I am an impatient person, I'm a get-r-done kind of person. So not having control over what I'm feeling, ...it's just not in my nature and very hard for me to deal with.0 -
Take your pain meds and start stretching to the point it is uncomfortable. Never stretch to the point of pain. But do stretch! The hospital I went to gave me a set of 10 exercises to begin the day after the mastectomy. I had to do 10 reps of each. It took about 20-30 minutes to finish the lot and I had to do them twice a day. It kept my shoulder from freezing. That would have sent me to rehab and those guys work you even harder! Most of my exercises I did with a wooden dowel about a yard long and an inch thick (like a sawed off broom handle). I had to hold both ends and raise it to the right, parallel to the ground for example. Another one I had to hold the stick with both hands behind my back and raise it toward the wall. And another was holding the rod in front of me and raising it parallel to the ground till it was as high as I could go. I felt like a blasted cheerleader, but it did the trick and it gave me something to do. You can make a mark on the wall and practice walking your fingers up as high as they will go also to stretch your arm. I hope you feel better soon!ladys229 said:Yes it sure is overwhelming. All of you made sense and I could relate. I didn't feel all that bad while I was still in the hospital, but I have not felt good since they released me. I got to a point where I was not getting up in the night to take pain meds, but now I'm back to setting the timer so I can stay on top of the pain. One day I'm ten feet tall and bulletproof, and the next day I want to die. I move sooo slowly, I hug my left arm to my body for protection, holding it tight there with my right arm. I walk as lightly as I can because every footstep sends vibrations thru my body, those electric jolts. My shoulder curls forward and I'm crampy from holding this unusual posture. My husband looped a rope thru a plant hook and set me a chair under it so I can work my arm by moving the rope from side to side, so I am doing some exercises. But I hurt so bad and I wonder if the exercises are hurting or helping. I don't want ANYBODY around me. My husband's family keeps wanting to come over and babysit me, but they stare and galk at me, it makes me uncomfortable. I want my husband to be able to tell people that 'my wife just had surgery and nobody needs to be at our house until she's better'. But he's such a nice guy, he doesn't know how to be authoritive. Here is it 4th of July weekend and the whole family wants to hang out at our house. While I'm seething, staying in my bedroom because I can't even make myself presentable with a curling iron with one working arm. If I walk into the kitchen to get me somethign to drink, they all stand and stare at me, and oh my gosh I just cring. I'm certainly not making any friends. And I KNOW I'm being a witch but I can't seem to keep it under wraps. I've never been the type to hold in my feelings, ...instead I wear my heart on my sleeve and leave little of what I'm feeling to the imagination. Sometimes that is a good quality, but more often it is not. Like now.
I am very glad to read that the electric jolts will get better, and will try to focus on the hope that these horrible feelings are temporary. I know I'm not the first woman in the world to go through this... but in my own little world in my own little body, ...I feel very alone. If I can just get myself a little better, then I know me and I'll get more proactive. I know it lifts my mood when you all to tell me it gets better and when I read other's stories. I know me, a support group will be good for me... but I can't drive yet, I can't hardly even dress myself yet. And like I said I am an impatient person, I'm a get-r-done kind of person. So not having control over what I'm feeling, ...it's just not in my nature and very hard for me to deal with.0 -
After my mastectomy in Nov I had those strange feelings. It does get better. The cut nerves cause that and it takes some time for your brain to catch up. You need to move your arm, if you don't want frozen shoulder. I had it before cancer and it is extremely painful. The American Cancer Society or you surgeon has a booklet with the excercises some one else mentioned. Many of the therapies are for cancers that feed on hormones. If you are er/pr- they aren't helpful. As for chemo or other treatment it depends on alot of factors. You should ask all the questions you have when you see your Onc. I always write the questions down so I remember to ask them. You will become good at reading reports and test results before you finish, until then ask to have them explained. Be patient. It will take time to get where you are comfortable with all the changes you have experienced.ladys229 said:Yes it sure is overwhelming. All of you made sense and I could relate. I didn't feel all that bad while I was still in the hospital, but I have not felt good since they released me. I got to a point where I was not getting up in the night to take pain meds, but now I'm back to setting the timer so I can stay on top of the pain. One day I'm ten feet tall and bulletproof, and the next day I want to die. I move sooo slowly, I hug my left arm to my body for protection, holding it tight there with my right arm. I walk as lightly as I can because every footstep sends vibrations thru my body, those electric jolts. My shoulder curls forward and I'm crampy from holding this unusual posture. My husband looped a rope thru a plant hook and set me a chair under it so I can work my arm by moving the rope from side to side, so I am doing some exercises. But I hurt so bad and I wonder if the exercises are hurting or helping. I don't want ANYBODY around me. My husband's family keeps wanting to come over and babysit me, but they stare and galk at me, it makes me uncomfortable. I want my husband to be able to tell people that 'my wife just had surgery and nobody needs to be at our house until she's better'. But he's such a nice guy, he doesn't know how to be authoritive. Here is it 4th of July weekend and the whole family wants to hang out at our house. While I'm seething, staying in my bedroom because I can't even make myself presentable with a curling iron with one working arm. If I walk into the kitchen to get me somethign to drink, they all stand and stare at me, and oh my gosh I just cring. I'm certainly not making any friends. And I KNOW I'm being a witch but I can't seem to keep it under wraps. I've never been the type to hold in my feelings, ...instead I wear my heart on my sleeve and leave little of what I'm feeling to the imagination. Sometimes that is a good quality, but more often it is not. Like now.
I am very glad to read that the electric jolts will get better, and will try to focus on the hope that these horrible feelings are temporary. I know I'm not the first woman in the world to go through this... but in my own little world in my own little body, ...I feel very alone. If I can just get myself a little better, then I know me and I'll get more proactive. I know it lifts my mood when you all to tell me it gets better and when I read other's stories. I know me, a support group will be good for me... but I can't drive yet, I can't hardly even dress myself yet. And like I said I am an impatient person, I'm a get-r-done kind of person. So not having control over what I'm feeling, ...it's just not in my nature and very hard for me to deal with.0 -
Oh Ladys229, we are in the same boat, I'm 41 newly married June 6th. I had my total mastectomy april 29th, I got my prosthetic Boob 2 days before the wedding. your family loves you, they are just as lost and confused as you. I told my family to just be there and apologized ahead of time for being a crab. My nipple itched all the time the first month, only occasionally 2 month and now its gone. The sharp pulling pains are gone also. Remember to do your exercises I am back at 100% arm mobility. It does get better, You have to get into and keep a positive attitude, call on your friends for help, I use humour alot, I got a pink mohawk the day before chemo I figured What the heck! I am T2N0M0 stage 2 also triple negative with the hormones. Use this site, it answers alot of questions, these ladies are wonderful. GOD BLESS and Keep the faith Patty BLindaR48 said:After my mastectomy in Nov I had those strange feelings. It does get better. The cut nerves cause that and it takes some time for your brain to catch up. You need to move your arm, if you don't want frozen shoulder. I had it before cancer and it is extremely painful. The American Cancer Society or you surgeon has a booklet with the excercises some one else mentioned. Many of the therapies are for cancers that feed on hormones. If you are er/pr- they aren't helpful. As for chemo or other treatment it depends on alot of factors. You should ask all the questions you have when you see your Onc. I always write the questions down so I remember to ask them. You will become good at reading reports and test results before you finish, until then ask to have them explained. Be patient. It will take time to get where you are comfortable with all the changes you have experienced.
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PattyB5533,PattyB5533 said:Oh Ladys229, we are in the same boat, I'm 41 newly married June 6th. I had my total mastectomy april 29th, I got my prosthetic Boob 2 days before the wedding. your family loves you, they are just as lost and confused as you. I told my family to just be there and apologized ahead of time for being a crab. My nipple itched all the time the first month, only occasionally 2 month and now its gone. The sharp pulling pains are gone also. Remember to do your exercises I am back at 100% arm mobility. It does get better, You have to get into and keep a positive attitude, call on your friends for help, I use humour alot, I got a pink mohawk the day before chemo I figured What the heck! I am T2N0M0 stage 2 also triple negative with the hormones. Use this site, it answers alot of questions, these ladies are wonderful. GOD BLESS and Keep the faith Patty B
I have had a mastectomy March 2008. I had breast reconstruction a tram flap done at the same time. My abdomen is very tight. I try to stretch as much as possible but my abdomen is still very painful after 4 months. Do you know how long this condition will last? My boss wants me to go back to work the end of July but I am concerned that my health may suffer from sitting at a desk all day and not stretching to stand up straight. I am also trying to get off of Adivan. I am down to 1/2 a pill and will be reducing it to 1/4 pill in two days! I am really down in the dumps.... Am I doing the right things? I want my life back. My abdomen is so tight I hate the feeling. Other than walking does anyone have any suggestions? Thankyou from dancingfan0
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