Posted by Kims1961 on Sep 10, 2020 1:30 pm
My tumour was 2.5 cm and the surgeon wanted to do a lumpectomy. As i was 56, and knew i would not do reconstruction, i asked for bilateral mastectomy. Although the right breast had no cancer, for symmetry, risk of recurrence, I was comfortable, going flat ( or in my case concave). I was also fine, if this wasn’t approved to go with just one breast - single mastectomy.
I had a number of reasons, mostly personal in that i felt my breasts had served me well, but i was also fine to let them go. I knew my husband would support whatever decision I made, but i also felt strongly that it was my body, my decision. I looked at images of what that might look like, as we just don’t see women or men - with no breasts or one breasts. It was a woman at my local YMCA, with one breast, that showed me, we are not less without a breast - in fact - i saw her as strong and courageous. Still....a very, very personal decision.
It is definitely worth discussing with your surgeon. Some won’t perform a prophylactic surgery - so you may need to advocate for yourself. I was sure to discuss health risks and benefits with my surgeon.
I found images on www.breastcancer.org - In case this is helpful for you. Sometimes if you goggle breasts - you never know where you end up! Lol...
Good luck with your decision - feel free to ask me any questions. Take care, KIm
Posted by ashcon on Sep 10, 2020 6:46 pm
Kims1961 and Lacey_adminCCS have offered some great perspectives and considerations.
I learned that even for something as common as surgery for breast cancer, where there are national and international standards of care and procedures, doctors - even those within the same operating hospital - sometimes have different opinions and ways of doing things.
For example, you said your tumour is 5cm? For some surgeons, that automatically means a mastectomy, because it's over 2cm.
Some surgeons won't do a double mastectomy if the other breast is not showing signs of having cancer, or if you do not have a BRCA1 or 2 gene mutation.
If wondering if your surgeon can switch from doing a lumpectomy to a mastectomy (single or double) once in there and looking around... well they may not have that luxury. Mastectomies take longer to do than lumpectomies and the OR time that your surgeon booked for your surgery may not allow for a change in plans. It's not uncommon for OR rooms to be booked back to back, like an assembly line, especially now if hospitals are playing catch-up with surgeries pushed out due to Covid.
Like Kim, I opted for a prophylactic double mastectomy (no reconstruction) 6 months after my initial lumpectomy. The original plan was to only go in and grab additional lymph nodes that showed up as positive after my chemo started, but I advocated for a double mastectomy to be done at the same time. Why?
- I had dense breast tissue. I learned that this meant there was an increased risk of developing contralateral cancer (another new cancer in the other breast). Do you know if your breast tissue is dense? I needed peace of mind. The fear of developing another cancer, and maybe having it missed on a mammogram again, far outweighed the importance of my breasts to me. I decided that they had served me well and were no longer needed.
- Despite having smallish breasts, I didn't want to be lopsided. Always having to wear a prosthetic on the other side, depending on what I was wearing. As someone joked once, "I didn't want to swim in a circle whenever I went swimming!" For some reason, the freedom of just throwing on a t-shirt and going was incredibly liberating for me. Also, saving money on bras. And not having to endure mammograms anymore!
- I did not want reconstruction, because I knew this would extend my recovery time considerably, and I needed to get on with my life. Plus, for me, I can't help but think I don't want anything foreign in my body again - the cancer was enough.
Lacey is right - If you can arrange another discussion with your surgeon to discuss your thoughts, questions, concerns, priorities for your wellbeing (physical and emotional), it may help.
Meanwhile keep in touch here. You are amongst friends who know what you are going through.
Posted by Lucy77 on Sep 10, 2020 7:24 pm
I really have not had much support since I started immunotherapy ( aromasin) last Dec. to help shrink my tumour, which it did not do significantly. I’m ER positive.
You are absolutely right it is a personal decision. I guess I really want a guarantee that all the cancer will be removed. Realistically it’s impossible.
My surgery is Oct. 1 . My surgeon after we discussed the pros and cons the other said I can change my mind if I want to.
Lots to still think about........
Posted by cancertakesflight on Sep 13, 2020 11:54 pm
You are certainly not alone. The lumpectomy versus mastectomy question is very popular one. I fortunately or unfortunately didn't have to make the choice. DCIS was the first cancer that was discovered. It covered about 3/4s of my left breast so there was no other choice. It took a long time for even that to be diagnosed. I struggle to remember exactly how many mammograms, ultrasounds, and biopsies I had. At one hospital, two doctors requested an MRI and each time the radiologist rejected their request, which I didn't know was even possible. Ultimately I was sent to another hospital, in another city, and had many of the same tests again, including an MRI. It wasn't until I had the MRI that the full extent of my DCIS was found. I was told that there was one other test that could be done, but the doctor was not convinced I needed it. It was an MRI biopsy, which is not even available in all hospitals. This test also found aspects of my cancer that had not shown on other tests. It ended up that I had both invasive and non-invasive cancer (DCIS and IDC). Each time I went to the surgeon's office after tests, the potential stage of my cancer got a little higher. Even with all these tests, the surgeon was surprised to discover that my DCIS was even more widespread than anticipated. So, a mastectomy was the right answer for me.
I wish my decision had been whether I wanted one or both breasts removed. It never occurred to me and no one mentioned it to me either. I had never had a mammogram prior to going through the diagnosis process. I had blood coming from my nipple which was the give away. While my first biopsy was taking place the radiologist commented about just how dense my breast was. Now, after chemo, I am in menopause and the consistency of my breasts has changed drastically. They in no way feel similar to what was normal for me. They are now very lumpy, which makes it hard for me to determine if there is a new lump. The position of my lumps is not consistent, so I almost throw up my hands trying to do a self-exam to determine if my cancer has returned. At this point, almost 10 years after my initial diagnosis, part of me wishes that I had had both breasts removed. It would take away the uncertainty of whether something is a potentially cancerous lump or not.
Right now I am waiting for test results to determine if my cancer has returned. I had a mammogram and ultrasound on September 4th. I requested it. Something just didn't feel right to me. I don't know why. It was mostly just a feeling. Something looked suspicious on my test results and I had to go back on September 9th for another mammogram (3D this time) and another ultrasound on a specific spot). I then had a biopsy. When the radiologist did the biopsy, the lump ruptured, which indicated that the lump was a cyst, but I won't know for sure until the pathology results come back whether there were any cancerous cells.
So while breast cancer may be common to all of us, the experience for each person has unique aspects and, as everyone has said, what is right for one person is not necessarily right for the next person.
It's great that you are doing all this research ahead of time so you can make an informed decision.
Whatever your decision, it will be right for you.
Posted by Justscared on Sep 14, 2020 2:11 am
thank you so much for your post. I also was first diagnosed with IDC, then my path report showed DCIS( just in the mass they removed). So now I’m like hmmmm, ok so how much of my breast is covered with DCIS? I have mentioned getting a mastectomy a few times and my surgeon is against it. Apparently now I am waiting for the referral of both the chemo oncologist and radiation oncologist to make the decision to go back in for more surgery or continue with a treatment plan. I really want a mastectomy because of my family history, and now not knowing the extent of the DCIS. Oh yoi. Ok so now I’m waiting for the next step. I cannot stress enough how much I am waiting very patiently to meet my oncologist. How can I just go back into surgery without knowing how much DCIS I have if the only sample there going on is the mass they removed. This is all very confusing to me. I also read my path report in which it shows me negative for receptors, which I know can’t be a good thing. I feel like I’m being kept in the dark at this point. I guess my oncologist (whenever I get to meet him/her) will give me the low down on everything.
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