Anyone feel devasted about how you look & feel? And guilty too?

Posted by colely @colely, Jan 23, 2023

My Oncologist's reply to my wanting to take Propecia for genetic, and Tamoxifen- induced hair loss and thinning was the following: "This is controversial. There is no data that says it is safe and it could be potentially harmful, ( increased breast cancer risk). We are not in favor of using propecia." Well, there is always a capillus cap. If I had the money. Do any of you feel devastated by how you physically feel and now look from a masectomy and sentinal lymph node removal, and taking Tamoxifen, but feel guilty because other wonderful women are suffering so much more?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@resina

Of course we are all wonderful in our own way, there is no doubt. But the question is how to get there to actually feel it.

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I don’t want people to feel sorry for me, but sometimes I want sympathy.
I feel like a warrior! Sometimes I cry in the shower.
I hate my lymphedema,
but like the “love the
tattoo!” Compliments when I wear my fancy compression sleeves.
It’s ok to feel lost.
It’s ok if you found your way.
My life has had ups and downs long before cancer, just never one that had an online support group I wanted to join until now.

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This is still true for me 18 years later and still living from one day to the next as best I can. Some day I feel like a fighter, @bcwarrior you are a great motivator for these days, thank you. Some days I feel like @resina , you are correct in asking how do I get to warrior? Today I think I will just try to put one foot in front of the other until my courage returns.

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@auntieoakley

This is still true for me 18 years later and still living from one day to the next as best I can. Some day I feel like a fighter, @bcwarrior you are a great motivator for these days, thank you. Some days I feel like @resina , you are correct in asking how do I get to warrior? Today I think I will just try to put one foot in front of the other until my courage returns.

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Thank you, that is helpful. I often feel that when I’m down I’ll never rise again but you remind me there are other days, other phases too. You have managed for such a long time and that is encouraging and inspiring.

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@frogjumper

Sadness and or grief whether it's about being sick or something else that life has thrown us is nothing to feel guilty about in my humble opinion. There is a fair amount of "toxic positivity" in our world that really is toxic! There is this sense that you have to consider what you have to be thankful for, but at the end of the day sometimes you just come up empty And that's OK! Life is not a bowl of strawberries, sometimes it's a bowl of pits!! We all need to feel safe in wrapping ourselves up in a robe of sadness, it's actually healthy and you have to deal with that sadness before you can really get through it all. It's OK to cry and be sad and ask why me, it's not OK to feel guilty about it, at least to me it isn't.

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On January 9th of this year I had a bilateral mastectomy. I tested positive for BRCA. I have yet to cry, but my mind set has certainly changed, sometimes in a good way and sometimes not. I do not like my husband seeing me, I know he doesn’t care and loves me very much, it’s me! I’m an introvert anyway, but it’s gotten worse. I guess I’m hiding from myself. Some days good some crappy. Everyone says well it saved your life and you have to look at the bright side. Please don’t say that to a breast cancer women. Just be there for them, love them and be patient, for this to will pass. I guess I’m having a cloudy day. “COPING “

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@toomanyquestions

I am so glad you brought this topic up. I had a double mastectomy in December. The plastic surgeon left so much extra skin even though I told him to go flat…I look like a freak with rippled skin… mostly on the sides. It’s horrible. I used to be self conscious because my breasts were too big. Now I am self conscious about the bumpiness. I feel like I should make love to my husband with a shirt on. 😞

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Hello. You have a right to have a revision on your mastectomy surgery, to make it more acceptable- looking. I have a small dog ear in my axilla and the surgical oncology nurse wanted to schedule a new consult with the plastic surgeon. I can't go through anymore surgery for what would be a small improvement, for me.. You can go online and see revision surgeries, before and after. You are so lucky you have a loving husband.

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I had bilateral in Nov 2022 and opted for flat. But I should have taken in a picture and asked the doctor if he could get me to this picture for my incision - I didn't. I'm not flat I have the small side bulges and my chest concaves. It should have been a clue when he said he treats all surgeries the same. Everyone that has seen my chest askes when I'm having reconstruction; because that is typically what the incisions look like for individuals that are waiting reconstruction. I have prothesis and because my chest concaves there is a gap between my chest and the prothesis. Fortunately I was never one for low scooped necklines - but inside I still feel self conscious.

But I have a question - after the lymph node dissection during surgery, I now have an intent (concave) in my underarm that I can't seem to shave clean. I also notices that I'm slightly numb there and am afraid to press to hard with my razor. Summer is coming and I want clean shaven underarms for swimming in the pool. Anyone have any thoughts. I've tried stretching the skin and can't seem to get a smooth enough surfaces to shave clean. I'm wondering if an electric razor might work better. Has anyone experienced this and how did you handle? As an FYI I have dark hair so the hair under my arms is also dark.

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@bpknitter53

I had bilateral in Nov 2022 and opted for flat. But I should have taken in a picture and asked the doctor if he could get me to this picture for my incision - I didn't. I'm not flat I have the small side bulges and my chest concaves. It should have been a clue when he said he treats all surgeries the same. Everyone that has seen my chest askes when I'm having reconstruction; because that is typically what the incisions look like for individuals that are waiting reconstruction. I have prothesis and because my chest concaves there is a gap between my chest and the prothesis. Fortunately I was never one for low scooped necklines - but inside I still feel self conscious.

But I have a question - after the lymph node dissection during surgery, I now have an intent (concave) in my underarm that I can't seem to shave clean. I also notices that I'm slightly numb there and am afraid to press to hard with my razor. Summer is coming and I want clean shaven underarms for swimming in the pool. Anyone have any thoughts. I've tried stretching the skin and can't seem to get a smooth enough surfaces to shave clean. I'm wondering if an electric razor might work better. Has anyone experienced this and how did you handle? As an FYI I have dark hair so the hair under my arms is also dark.

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I can’t help about the reconstruction woes, but I can definitely tell you a battery operated lady Wellington electric shaver saved my sanity in the underarms.
Although I don’t have a lot of hair there anymore, like you it is uneven and pulled, and the nerves were cut.
You definitely do not want a cut here. Invest in an inexpensive electric and I hope you will be as happy as I am.

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@mossa

I don’t want people to feel sorry for me, but sometimes I want sympathy.
I feel like a warrior! Sometimes I cry in the shower.
I hate my lymphedema,
but like the “love the
tattoo!” Compliments when I wear my fancy compression sleeves.
It’s ok to feel lost.
It’s ok if you found your way.
My life has had ups and downs long before cancer, just never one that had an online support group I wanted to join until now.

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@mossa, well said. Your paradoxical sentences are spot on. I, too, think triump and grief, strength and vulnerability, clarity and confusion can co-exist.

I'm really glad that this support group spoke to you and motivated you to participate.

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@nanahatton65

On January 9th of this year I had a bilateral mastectomy. I tested positive for BRCA. I have yet to cry, but my mind set has certainly changed, sometimes in a good way and sometimes not. I do not like my husband seeing me, I know he doesn’t care and loves me very much, it’s me! I’m an introvert anyway, but it’s gotten worse. I guess I’m hiding from myself. Some days good some crappy. Everyone says well it saved your life and you have to look at the bright side. Please don’t say that to a breast cancer women. Just be there for them, love them and be patient, for this to will pass. I guess I’m having a cloudy day. “COPING “

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I am so sorry for your grief. I have been there and done that. I had a Radical Mastectomy when I was 35 and a simple mastectomy two years later. I have had doctors see my chest and say "we would never do that to a woman today". My reply "you can't fault success, I am 92 years old." I am sure your husband looks at you and thanks God you are still with him. You are the most important person in the World to him. If it is possible to have reconstruction, give it some serious thought. Look at the world and see how beautiful it is, and how lucky you are to be here. I believe there was a book titled "The Power of Positive Thinking". You are so much more, then your breasts. Give that husband a big kiss, imagine how much he needs you now, after all he has experienced when he thought he might lose you. Love him, and all your family who love you so much. God has been good to you. Life is wonderful, enjoy every day, the gift that was given to you. It comes around only once.
Gina5009

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@gina5009

I am so sorry for your grief. I have been there and done that. I had a Radical Mastectomy when I was 35 and a simple mastectomy two years later. I have had doctors see my chest and say "we would never do that to a woman today". My reply "you can't fault success, I am 92 years old." I am sure your husband looks at you and thanks God you are still with him. You are the most important person in the World to him. If it is possible to have reconstruction, give it some serious thought. Look at the world and see how beautiful it is, and how lucky you are to be here. I believe there was a book titled "The Power of Positive Thinking". You are so much more, then your breasts. Give that husband a big kiss, imagine how much he needs you now, after all he has experienced when he thought he might lose you. Love him, and all your family who love you so much. God has been good to you. Life is wonderful, enjoy every day, the gift that was given to you. It comes around only once.
Gina5009

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I can tell what a wonderful women you are with your sweet words. Thank you for responding. I’m 76 and have decided not to have reconstruction. Yes my darling husband is my rock and you are so right. Loved hearing from you, stay as sweet as you are ❤️🥰🤗

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