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Self Examination after Mastectomy

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I had an appointment today with my BS. I asked about a small lump I found near my breast bone. It's painful. I guess he couldn't feel it, but it is there, because I can feel it. His comment to me was to "leave the examination to the experts, breast surgeons and medical oncologists and stop doing self examinations!"

I wonder what others with mastectomies are doing. I didn't tell my BS, but I spent years working in a veterinary office and doing agricultural research and my patients didn't talk, so I had to rely on my touch to find out what was wrong with them.

I am ok with waiting until I see my medical oncologist in Sept. It could be fat necrosis. Even if it is cancer, I don't think the end result will be any different in three months. Making an earlier appointment with my MO would undermine my breast surgeon, since both are part of my team. I sure feel like I am caught between a rock and a hard place!

Having had three new breast cancer diagnoses within 20 years, I know I am paranoid. I absolutely believe I will get cancer again. That said, it doesn't help getting the mixed messages from breast doctors! On one hand they say "don't worry, don't examine yourself" on the other hand they say, "you need to be seen by BS or MO every three months for the first two years!"

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  • wondering44
    wondering44 Member Posts: 260
    edited June 2023
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    mavericksmom,

    The best advice I received for breast exams was after my second mastectomy. I wasn't told to do self-exams. I was told to get familiar with my breasts as soon as they healed from surgery because I am still at risk of getting cancer again. I loved the idea of getting familiar with my breasts to help recognize any changes rather than the option to do a self-exam monthly. I found a change (lump) when I took off my bra and had a little itch simply because I was familiar with my breasts. I was sent in for an ultrasound, and the lump was found, put on a diagram in my portal, and listed as benign (scar tissue). However, now it is recorded on an upper-body diagram which is excellent for doctors and me to refer back to whenever needed. The other thing I loved was that I wasn't questioned when I told my MO about the lump. My MO didn't have to find the lump to send me in for an ultrasound. I found a change, and the ultrasound order was placed.


    Regardless of your BS scenario, three times the charm is a lot. I don't see that as paranoid. Three times might have anyone at their wit's end. What is the harm in placing the order to give you peace of mind, if nothing else? I would have requested it. There is no harm in hearing your concern and addressing it, especially after you have been diagnosed three times.

  • mavericksmom
    mavericksmom Member Posts: 1,168
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    Wondering44, I think I was meant to cross paths with you! What I didn't say in my post above was that I also have bone pain, left scapula, right hip, and ribs. I told my BS all about that and he dismissed that too! He said the scapula pain was likely because of my shoulder replacement (both my shoulders have been replaced due to complete tears of rotator cuff) . He blew off my back pain and said it was due to age ( I am in my late 60's) The fact that this pain started about 6 weeks ago didn't seem to be an issue.

    I read your post on bone pain and wow, I need to think of my bone pain the way you do! I was definitely going down the rabbit hole of anxiety! I LOVE your positive way thinking about your bone pain.

    Honestly, I wouldn't mind ditching my BS, I like my MO much better, but since my mastectomy was done in October 2022, I still have a year and a half of alternating every three months between BS and MO. After that I'm sticking with my MO and dropping my BS!

    You are right, I should have insisted on an US, but he made me feel like my pain was in my head. I may end up canceling my Dec appointment with him, but I am waiting until after my MO appointment in September. I don't think I will ever feel free to tell him how I'm feeling or about things that concern me because of the way he completely dismissed my concerns today. I don't have any peace of mind after seeing him today. I would have been better off not having the appointment, definitely wouldn't have been any worse off!

  • wondering44
    wondering44 Member Posts: 260
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    Just curious? Why do you rotate between your BS and MO every three months? My BS who gave the fabulous insight to "get familiar with my breasts as soon as you heal from reconstruction" told me she wouldn't see me again unless I was diagnosed again. Are you still doing reconstruction or did you have reconstruction that required multiple follow ups from a BS instead of your PS?

  • mavericksmom
    mavericksmom Member Posts: 1,168
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    wondering44, Good question! That is just how my doctors set things up for me.

    All three times I had breast cancer, the follow up plan had me alternate between my MO and BS for the first 2-3 years, so I was seeing someone every three months, but seeing each of them, twice a year. Then after the 2-3 years I would alternate between my MO and BS every 6 months, so basically seeing each of them once a year.

    I would be quite happy only seeing my MO and PS. I see my PS again in Sept. I think that is to check on my implant and also to discuss my lymphedema, since he is also a lymphedema specialist. I have no idea when or if he will see me again after September.

  • mavericksmom
    mavericksmom Member Posts: 1,168
    edited June 2023
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    wondering44. I ended up canceling my December appointment with the BS. I didn’t want to be reminded of anything to do with breast cancer during the holidays. I wasn't going to reschedule it, but the office called me this morning and offered to reschedule for January, so I did. I don't mind going to an appointment after the holidays. I will, however, make a mental note not to ask questions, tell him anything about how I am feeling, or give him any new health information. All I am there for is to be checked for signs of a recurrence of breast cancer around my breastbone and mastectomy scars. He doesn't need any information from me to do that!