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

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?

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.

I think I may have told you I was 36 when I had the surgery and I am sure this probably had a great deal to do with my excellent recovery. It took one year for me to be able to raise my arm straight up in the air, and gradually I regained full strength but it took a lot of work with Rehab to get there. Unfortunatley about 10 years ago (age 80) I took a fall at Wal Mart) and fractured my right shoulder in three places).. I now have an artificial shoulder replacement and cannot reach very far or place my arm behind my back or lift the arm above shoulder height. I do manage quite well with a metal grabber and my left arm (radical mastectomy arm) is excellent. I have learned to use it almost as well as my right arm use to be. I think I did mention to you, my Radical involved taking all the way to the chest, and enough muscle into the arm pit. They were able to stretch this muscle, (over time, this is part of why it took about a year to regain the use of this arm). Believe it or not, my doctor told me to get a brush and to brush and brush. Best therapy for that arm. As I also mentioned, I am 92 and beginning to loose strength in both arms(old age), but I have large bottles of distilled water and I use them as weights to lift each time I need to use them and I think this has helped to keep the arms strong.
I know when I tell people about my surgery, they are almost horrified at the extent of the surgery, but the one thing they cannot know about is Cancer in 1968 was almost a death sentence. There were no lompectomies, radiation (only if lymph involvement) and definitely no Chemotherapy. It was a one shot deal. I tell everyone, "YOU CAN'T FAULT SUCCESS'.
So after all of that, Your arm will be fine, just takes a little work. Smile, God is good, The Sun is Shinning, and you have a very long life ahead of you.
Gina5009

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.

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.

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

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.

Fortunately or unfortunately, I have never had any of these tests (55 years). I did find a DERMATOFIBROSARCOMA in my right leg which required a wide recission,and a SQUAMOUS CELL CARCINOMA in the skin above my collar bone (looked like a pimple). But other than this, nothing to worry about. I still believe we can be the best cancer detective. If it looks strange, TAKE IT OFF. We know our body better than anyone else. Don't let someone pat you on the head and say "you are just worring to much". "IF IT BARKS LIKE A DOG, IT PROBABLY IS A DOG"
Gina5009