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.

@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 agree with you wholeheartedly about those who say the same old things about cancer scars.
It does not help at all to say things like -- "Scars are a medal that you have won", or "It saved your life." Platitudes only tend to bring the scars to the forefront once again and the entire cancer experience is relived yet another time.
Best thing is not to say anything; buy us a lunch or a box of good chocolates! Be a friend.

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You did not mention your age, and what type of mastectomy, or whether you are married?? All of these are very important to your current feelings. If you are 20 and loose a breast this can feel devastating, but at 70 maybe not so important. If you are happily married, maybe a bump in the road, but again at 20 a lot to overcome. And a caring man in your life can make all the difference. Let up on yourself. You have had to face a MAJOR tradgey in your life. Give yourself time to recouperate, and just be happy for a time. Smile at people and bask in there warm smile back at you (A holy moment). Take a walk, smell the new cut grass, look at the beautiful new spring wild flowers (a holy moment). Fill your life with life, and count your blessings for everyday you have been given.
MayGod bless you and keep you in his tender care.
Gina 5009

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@colely YESSSS! I have felt guilty for feeling sad about how my girls looked after lumpectomy and reconstruction surgery. It took me about a year to process everything that happened. Yes I still had my own breast. The thought of losing both my breast has always made me fearful and I always thought if I ever got cancer I hope I never lose my breast! So when I was diagnosed with cancer and told that I had the option of just having a lumpectomy and a breast reconstruction along with a lift, my first thought was perfect This is going to be easy peasy! I'm going to walk away with perky breast! I had no idea of what this change was going to do to my psyche! I had no real clue the pain that would follow after the surgery and how long it would take for me to physically heal! Everyone kept telling me I should be happy that I still have my breast and at the age of 57 I have perky boobs! It took me some time to get to that place. I felt so guilty for not wanting to look at my new breast in the mirror. I felt so guilty not being happy with going from a double D to a C cup! When I knew that other women that I know intimately was going through so much more than me. It took the plastic surgeon to help me realize that all of my feelings and my emotions was completely normal. And I should not feel guilty. It's not like I chose to make these changes. It's not like I spent months of researching, looking at pictures being mentally and emotionally prepared for what my body would look like after surgery... I was so comfortered by those words and her kindness... She told me to be patient and to mourn what has happened and that's exactly what I did! If anybody said to me I should be happy that I still have my breast I would stop them and let them know that I agree but what has happened to me is not my choice and I am processing it! I will say I was not happy with my nipple on the cancer breast after the first surgery . I express myself to my plastic surgeon and months later she went back in fixed my nipple and removed a lot of excessive fat underneath my arms... It's been over a year since the first surgery and I am finally able to look in the mirror at my breast and accept what I have become and what I am now. I still long for my big boobs but I am grateful for what I have. Be patient with yourself and allow yourself the time you need to process what has happened to your body. It is your journey and only you can travel this road at a pace that's best for you No one can tell you where you should be at on this journey what you should be thinking or feeling. Your original post was earlier this year so it is my hope You have evolved and you are doing well.

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Hi @colely -- So we meet again on another topic. I agree with another poster who said not to compare your problems to those of others. There will always be people who have it better or have it worse, but that doesn't change what you're going through and feeling.

I sometimes have friends say to me, "Oh, I shouldn't even mention my issues with what all you are going through." I tell them of course you should talk about your issues. It's all relevant and if your issues are impacting your quality of life then that makes them important, worth discussing and worth seeking a solution. 🙂 Zebra

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@californiazebra

Hi @colely -- So we meet again on another topic. I agree with another poster who said not to compare your problems to those of others. There will always be people who have it better or have it worse, but that doesn't change what you're going through and feeling.

I sometimes have friends say to me, "Oh, I shouldn't even mention my issues with what all you are going through." I tell them of course you should talk about your issues. It's all relevant and if your issues are impacting your quality of life then that makes them important, worth discussing and worth seeking a solution. 🙂 Zebra

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I absolutely agree, I tell my friends “everyone has “stuff” none better, none worse, just different”.

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@jixs

@colely YESSSS! I have felt guilty for feeling sad about how my girls looked after lumpectomy and reconstruction surgery. It took me about a year to process everything that happened. Yes I still had my own breast. The thought of losing both my breast has always made me fearful and I always thought if I ever got cancer I hope I never lose my breast! So when I was diagnosed with cancer and told that I had the option of just having a lumpectomy and a breast reconstruction along with a lift, my first thought was perfect This is going to be easy peasy! I'm going to walk away with perky breast! I had no idea of what this change was going to do to my psyche! I had no real clue the pain that would follow after the surgery and how long it would take for me to physically heal! Everyone kept telling me I should be happy that I still have my breast and at the age of 57 I have perky boobs! It took me some time to get to that place. I felt so guilty for not wanting to look at my new breast in the mirror. I felt so guilty not being happy with going from a double D to a C cup! When I knew that other women that I know intimately was going through so much more than me. It took the plastic surgeon to help me realize that all of my feelings and my emotions was completely normal. And I should not feel guilty. It's not like I chose to make these changes. It's not like I spent months of researching, looking at pictures being mentally and emotionally prepared for what my body would look like after surgery... I was so comfortered by those words and her kindness... She told me to be patient and to mourn what has happened and that's exactly what I did! If anybody said to me I should be happy that I still have my breast I would stop them and let them know that I agree but what has happened to me is not my choice and I am processing it! I will say I was not happy with my nipple on the cancer breast after the first surgery . I express myself to my plastic surgeon and months later she went back in fixed my nipple and removed a lot of excessive fat underneath my arms... It's been over a year since the first surgery and I am finally able to look in the mirror at my breast and accept what I have become and what I am now. I still long for my big boobs but I am grateful for what I have. Be patient with yourself and allow yourself the time you need to process what has happened to your body. It is your journey and only you can travel this road at a pace that's best for you No one can tell you where you should be at on this journey what you should be thinking or feeling. Your original post was earlier this year so it is my hope You have evolved and you are doing well.

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It sounds like you have found a raod that is right for you. I have had a very long time to accept my situation, and I was left with far fewer decisions to be made. I had a Radical Mastectomy. Unfortunately there is no reconstructions from this surgery. Everything is taken down to the chest wall. My second surgery was a simple mastectomy. Reconstruction was not offered due to the fact the left side could not be reconstructed. Again, this was 1968 and I was 36 years old. I had two children age 6 and 8, a wonderful husband and life moves on. I have been lucky to have a very long life. Perhaps it was easier for me, because there absolutely was no choice. You are right it is your journey, but I think if you can accept the help that is offered to you from your family and friends the journey may not be so cold and lonely. You have a long time to enjoy this life "Gift" you have been given. May it be long and filled with love, and laughter, and many many years of happiness and joy.
Gina5009

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@gina5009

It sounds like you have found a raod that is right for you. I have had a very long time to accept my situation, and I was left with far fewer decisions to be made. I had a Radical Mastectomy. Unfortunately there is no reconstructions from this surgery. Everything is taken down to the chest wall. My second surgery was a simple mastectomy. Reconstruction was not offered due to the fact the left side could not be reconstructed. Again, this was 1968 and I was 36 years old. I had two children age 6 and 8, a wonderful husband and life moves on. I have been lucky to have a very long life. Perhaps it was easier for me, because there absolutely was no choice. You are right it is your journey, but I think if you can accept the help that is offered to you from your family and friends the journey may not be so cold and lonely. You have a long time to enjoy this life "Gift" you have been given. May it be long and filled with love, and laughter, and many many years of happiness and joy.
Gina5009

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Hi @gina5009

When I was a kid and I first heard about radical mastectomies, it freaked me out, but not for the usual reason. I was born unusually strong for a girl and I was so happy for that gift especially since I only had brothers so it allowed me to keep up with them in sports. So I worried my whole life about getting breast cancer and losing my strength. When that fear started, I didn't even have breasts yet so I was too young to relate to that part of it.

Ultimately, I had a double mastectomy at 54, but luckily the simple mastectomies of today's medical mindset. Difficult for sure, but I was happy I wouldn't lose strength. Then when my cancer came back in chest wall and pectoral muscle, and on my dominant side, there was that fear of losing strength again that might leave me feeling weak and helpless. They only had to take a small amount of my pectoral muscle and it didn't go all the way through. I did have side effects including loss of range of motion, but no real noticeable loss of strength. Then again, I was 61 for that surgery and not nearly as strong as I used to be anyway.

Gina - My question to you, if you don't mind me asking, is how did the radical mastectomy affect your strength and daily living activities? Is/was it as hard as I imagined?

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@californiazebra

Hi @gina5009

When I was a kid and I first heard about radical mastectomies, it freaked me out, but not for the usual reason. I was born unusually strong for a girl and I was so happy for that gift especially since I only had brothers so it allowed me to keep up with them in sports. So I worried my whole life about getting breast cancer and losing my strength. When that fear started, I didn't even have breasts yet so I was too young to relate to that part of it.

Ultimately, I had a double mastectomy at 54, but luckily the simple mastectomies of today's medical mindset. Difficult for sure, but I was happy I wouldn't lose strength. Then when my cancer came back in chest wall and pectoral muscle, and on my dominant side, there was that fear of losing strength again that might leave me feeling weak and helpless. They only had to take a small amount of my pectoral muscle and it didn't go all the way through. I did have side effects including loss of range of motion, but no real noticeable loss of strength. Then again, I was 61 for that surgery and not nearly as strong as I used to be anyway.

Gina - My question to you, if you don't mind me asking, is how did the radical mastectomy affect your strength and daily living activities? Is/was it as hard as I imagined?

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Hello. My question to you is how did they find that the cancer had returned to your chest wall and pectoral muscle? My tumor was stuck to my chest wall and I can't stop worrying that it will return in that area. My oncologist even, calmly, pointed to my right chest and lung, as one of the sites where cancer could return. My one year check- ups consists of a nurse feeling around my right mastectomy site and asking me if I have any new pain. Then a left diagnostic mammogram. No Scans on my right side, no CTC, circulating tumor cell blood test. NOTHING.

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Hi @colely

Thanks to my now bony chest, I accidentally felt the lump myself. I thought, “Uh oh, this can’t be good.” Luckily my annual ultrasound was just two days away so no waiting there. They did the ultrasound and immediately started telling me about their great cancer team. Uh oh.

I received an ultrasound every year even after 7 years after my mastectomy. I think you should request one for the right side each year. Very reasonable. My group PPO insurance always covered it without question. Now I have a chest, abdomen and pelvic CT scan every 6 months (every 3 months the first year after surgery and radiation).

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@californiazebra

Hi @colely

Thanks to my now bony chest, I accidentally felt the lump myself. I thought, “Uh oh, this can’t be good.” Luckily my annual ultrasound was just two days away so no waiting there. They did the ultrasound and immediately started telling me about their great cancer team. Uh oh.

I received an ultrasound every year even after 7 years after my mastectomy. I think you should request one for the right side each year. Very reasonable. My group PPO insurance always covered it without question. Now I have a chest, abdomen and pelvic CT scan every 6 months (every 3 months the first year after surgery and radiation).

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Hi. Thanks for information. Have you ever had a CTC test, or asked them about having one? I was told that they used to do ctc, but MALE head doctor decided they weren't useful. If I had the money I would ask for a chest and abdomen mri once a year. My check- up comes July 6th. They make me fill out questionnaire Am I losing weight, turning yellow, having pain in chest, abdomen, or Spine? My blood pressure goes sky-high at these, " check- ups." BTW, have you heard of the Galleri blood test that detects 50 different cancers? It is suppose to be FDA approved this year. I can't seem to find out if it can detect recurring breast cancer.

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