Need advice please

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Artbeforeall
Artbeforeall Member Posts: 6
edited August 2020 in Second or Third Breast Cancer

Hey there. In 2015 I had a lumpectomy for stage 2(barely) idc. Negative nodes. Have been on tamoxifen since. This summer I was diagnosed with an extremely rare kind of cancer of the breast on the OTHER side. Its called adenoid cystic carcinoma and is a very low grade, indolent cancer. I had a mastectomy on my right breast about a month ago. At that time, my surgeon told me that if I went for a double mastectomy I could have complications due to the left one having been radiated back in 2015.

I had an extreme reaction to radiation and was in treatment for truncal lymphedema for a couple of years. That has now mostly resolved. My surgeon said I had a 5% chance of cancer on my left side post treatment and radiation and that a mastectomy on that side wouldnt lower that chance by a large number.

Ok. So I decided on a single mastectomy. Then today my oncologist said he thinks I might want to consider a prophylatic left side one just to be “done with it”. I tend to agree but I also strongly, strongly trust my surgeon. He is the director of the Breast Center here.

Has anyone been in even remotely a similar situation? Have you had a mastectomy after radiation and how did it go?

I am also not certain where to post this but thought I would try here. Ideas? Thank you all so much.

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  • Tmh0921
    Tmh0921 Member Posts: 714
    edited August 2019

    I had a lumpectomy, ALND, and radiation on my left breast in 1999 due to IDC. I just had a BMX on 8/5 due to a new cancer in the same breast. I haven't had issues with lymphedema, and I was concerned that this surgery would trigger it, but so far so good.

    I wanted to have reconstruction with DIEP, but didn't have enough tissue. As a result, I'm going the implant route. I had tissue expanders placed in both breasts. The plastic surgeon did advise that the radiation would be an issue. The skin on my left breast was damaged and thin, and had lost elasticity. To solve this he did a Latissimus Doris Flap on that side to support the implant

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  • edwards750
    edwards750 Member Posts: 3,761
    edited August 2019

    I didn’t have a similar experience but I did have one that pitted my BS vs my MO. My BS determined that a micromet that was discovered in my SN would get me chemo. My MO disagreed and ordered the Oncotype test. Thank goodness she did. My score was low so I dodged chemo.

    My BS was a good doctor but it wasn’t his call to decide what my treatment would be. My MO also told me that he staged me wrong. I should have been a 1b not 2a.

    No matter what it’s your call.

    Diane

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  • Jelson
    Jelson Member Posts: 1,535
    edited August 2019

    Artbeforall - not talking from personal experience here, just responding to what you wrote. You had a bad reaction to radiation and lymphodema after your lumpectomy. Might further surgery on that side reactivate the lymphadema? also, because of your severe reaction to the radiation, might your skin be even more fragile than radiated skin normally is? I would hate for you to be dealing with a mastectomy wound that doesn't heal and a flare up of your lymphadema from a prophylactic mastectomy. Your Medical Oncologist's advice might be applicable to the majority of his/her patients but doesn't appear to consider your personal history.


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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2019

    I would get a couple opinions from different surgeons and plastic surgeons regarding how you would heal. I also had a severe reaction to radiation, but had previously had a mastectomy. That reconstructed breast is about an inch higher than the other because my plastic surgeon told me he "wouldn't go near that breast with a 10 foot pole". Sigh. Lat flap would be an option for me, but I live with it. If I did need any surgery, I absolutely would get a few opinions to help me decide on how they thouhgt it would heal, understanding that no one can predict it 100%.

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  • Belinda977
    Belinda977 Member Posts: 381
    edited August 2019

    Having DMX next week with having had radiation in my left breast 7 years ago. Plastic surgeon is going to try for the implant or expanders depending on the blood flow. He said I only have a 50/50 chance of it being successful. I decided to give it a shot.

    How is the recovery from a Latissimus Doris Flap

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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2019

    Hoping the surgery is successful and that you recover quickly!

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  • AnitaLouise
    AnitaLouise Member Posts: 16
    edited August 2020

    Had BC 14 years ago on my right breast. Lumpectomy was performed but they missed the cancer in my lymph nodes, Had chemo and radiation. Advance 14 years and the same cancer came back in the radiated right breast. Had a BLM, skin sparing and had them take my nipples off (since it was in the milk ducts).

    Before my first cancer, I had breast augmentation, saline implants, that were 19 years old and looked fabulous. They were a full C-D. Therefore I did not require expanders and had reconstruction surgery immediately after my breast were removed. They were silicone and when I had the saline implants, the silicone were taken off the market (1998).

    Had an MRI done about a month ago and the right silicone implant has a rupture.

    I'm scheduled to have it replaced in October, 2020.

    My question is; Saline or Silicone?

    I have had three fat graftings to achieve symmetry and I still have a flat spot on the right breast.

    Has anyone recently went with saline implants? If so, how do they feel?

    My PS tells me that they will not feel natural and I might hear them swishing around. I also heard that they are firmer than silicone.

    Since the silicone were taken off the market once and then the textured ones just recently, I'm concerned about silicone leaking into my body.

    I'm 65 and really don't want to spend the next 10-20 years having them replaced. Been dealing with BC and surgeries for a long time and am tired of going through the recovery times.

    Thanks to anyone who can offer their opinion. Time is not on my side. With about a month to go I really want to make the right choice.

    Anita Louise

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2020

    Silicone is a different composition now. It's like "gummy bears". So if you do have a rupture, it's not going to leak into your body. Ask your PS to let you hold & play with one.

    I have the textured implants, but they haven't been recalled from bodies unless there is a problem - only from the shelves. You can still get silicone w/o getting 'textured' - the implants that were recalled. I'm very happy with mine - but it's my understanding they are harder than saline. I always had very hard. dense, fibercystic breasts, so no different than usual. I too have heard exactly what your PS says about saline - sloshing feelings.

    Look up Breast Implants 101, read the header, provide the info and Whippetmom will do her magic. Just be aware she isn't checking in more than once a week anymore.

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