My mum has stage 1 breast cancer in the left breast so it is non-invasive. She has had 3 lumpectomies over the past 6 weeks but they have not worked so she needs to have a mastectomy where she will have reconstruction at the same time. The Dr has recommended that she has a bilateral mastectomy because she has dense breasts. If she has a bilateral it means she won’t need hormone therapy. She has to decide in the next few days whether she will have a single or double mastectomy. Any advice? TIA

It's unusual to have that many lumpectomies, but rest assured that the surgeon is doing the right thing for your mother. Usually a mastectomy is recommended if they can't get clear margins around the tumour. Is radiation under discussion? Lumpectomy followed by radiation is regarded as the Gold Class treatment for early breast cancer. Regarding the bilateral mastectomy there are many things to be considered including feeling of numbness on both sides instead of one, possible interference to the lymphatic system and the risk of lymphoedema especially if any lymph nodes are removed and the necessity to deal with two sets of drainage tubes (short term only). If radiation is under discussion, most plastic surgeons would like this to happen and skin recover before doing the reconstruction. On the positive side of a bilateral mastectomy she will be freed of having a yearly mammogram, often hard to pick up anything in women with dense breasts. Is her cancer hormone positve? HER-2 positive? Triple negative? This is what will determine her treatment after the mastectomy and also who will treat her. You need to find out these answers from your breast surgeon, plastic surgeon, Medical Oncologist and Radiation Oncologist before committing to any treatment. If you don't know these members of your Multidiscipline Treatment Team ask to speak to them before operation. With love Joy K

Hi Joy, No, they can’t get clear margins unfortunately so that is why she needs the mastectomy. If they could get clear margins she was just going to need radio. So no she will not need radio. The decision is so tricky – I wish it was a bit more straight forward. I think im leaning towards a double because then she won’t need hormone therapy and removes the possibility of trouble down the track. Do you know if her life will be totally back to normal after a double or will it always play an emotional part? Is a single a lot less emotionally difficult? Thanks.

Hi Lea, this is a very tricky situation, and it is good that you can help your mum through this time. I have had a double mastectomy, and have no regrets what so ever. I am 53 with 4 adult children. My cancer was not found on mammogram, and when discovered they thought it was low grade and 4mm. What they found was a high grade 3, and 21mm. I had a lumpectomy first, and a clear sentinel node biopsy. Margins were clear, but not large, so I was faced with, another lumpectomy or mastectomy, and more lymph nodes out, just to be sure the cancer hadn't jumped the sentinel node. I chose the latter as I wouldn't need radiotherapy, but still required chemo. As this was right on Christmas 2010,( I came out of hospital on Christmas morning), I couldn't start recon as it is too hard to find a plastic surgeon at Christmas. After chemo and hair loss, I started to think about reconstruction, and the possibility of having a second cancer down the track. I have met so many woman who some years down the track develop a second cancer in the same breast or the other breast. This started to concern me, and I really didn't want to do the cancer thing again. My daughter who was 22 at the time said, you don't know what caused this cancer, so you don't know what to do differently to prevent a new one from developing. With no breast cancer in my family, and me being low risk on every level, here I was with breast cancer that didn't even show up on a mammogram. I was always going to have trouble trusting a mammogram in the future. 4 months ago after much research, I went back and had a precautionary mastectomy and insertion of bilateral tissue expanders. I am only small busted, 14B , so I was a good candidate for this type of reconstruction. I have now had my expanders removed and new silicone implants put in, and I am very happy with the results. I haven't had nipples applied yet, but this is something you can do months down the track when everything settles down. Everything is still numb, but my plastic surgeon says about 2/3 of people will get skin feeling back. ( not sexual). So, for your mum, faced with this problem, she is in a good position, being only stage 1. If she chose a double mastectomy and knows she doesn't need lymph nodes removed, she may well only have a small scar line. Sometimes they can even preserve the nipple. My scars are long, 20 and 21cms long, but for early stage one, they should be much smaller. Check out breast reconstruction on google images. Te best results seem to be when done at the same time as the mastectomy. If this early intervention negates the use of hormone treatment, then she is lucky. I have been on tamoxifen for 4 months, (ok), and now on an anti oestrogen called femara, and it is awful. I need to be on it for 5 to 10 years, and after 6 months I feel like an old lady. My knees ankles hips and fingers are so stiff. I hobble when I first get up out of a chair for a minute or so, and turning over in bed wakes me up. My fingers are so stiff that I can't make a fist properly, and that seems to be getting worse with time. Only your mum can make this decision, and we are all different. All I can say, is that I do not have any regrets, and having 2 boobs that look alike is better for me than only one breast, or 2 that don't match. All the best with your mum, and I hope she can find the decision that works best for her. Love Chris xx

Thank you so much for your response. It means so much to us to hear your experience and opinion. I forwarded mum your message and her response was “AMAZING!”. She wants me to ask if your “freaked without nipples?”

Hi, I am not freaked out without nipples. I thought I would be, but now that I have my completed reconstruction, I don't seem to be that worried about it. I was fully going to have them made, and even when my plastic surgeon said only about 1/3 of his patients bother, I was definitely going to be in that 1/3. Now I am there, I'm not so sure. More than likely I will have a 3D tattoo put on by a medical tattooist. That way things will look normal when I glance in the mirror. My husband doesn't care, and is pretty happy with the new boobs. It takes about 3 to 6 months for the implants to settle into their permanent position, so they don't like to do nipples till they are sure of the position. That is probably why so many don't bother. At least without nipples I don't have to worry about them showing through a TShirt. All the best to your mum. Xx

Miss Lea | BCNA Online Network

12 Replies

Learegan
Member
14 years ago
Hi Joy,

No, they can’t get clear margins unfortunately so that is why she needs the mastectomy. If they could get clear margins she was just going to need radio. So no she will not need radio. The decision is so tricky – I wish it was a bit more straight forward. I think im leaning towards a double because then she won’t need hormone therapy and removes the possibility of trouble down the track. Do you know if her life will be totally back to normal after a double or will it always play an emotional part? Is a single a lot less emotionally difficult?

Thanks.
Joy_K
Member
14 years ago
It's unusual to have that many lumpectomies, but rest assured that the surgeon is doing the right thing for your mother. Usually a mastectomy is recommended if they can't get clear margins around the tumour. Is radiation under discussion? Lumpectomy followed by radiation is regarded as the Gold Class treatment for early breast cancer.

Regarding the bilateral mastectomy there are many things to be considered including feeling of numbness on both sides instead of one, possible interference to the lymphatic system and the risk of lymphoedema especially if any lymph nodes are removed and the necessity to deal with two sets of drainage tubes (short term only).

If radiation is under discussion, most plastic surgeons would like this to happen and skin recover before doing the reconstruction.

On the positive side of a bilateral mastectomy she will be freed of having a yearly mammogram, often hard to pick up anything in women with dense breasts.

Is her cancer hormone positve? HER-2 positive? Triple negative? This is what will determine her treatment after the mastectomy and also who will treat her.

You need to find out these answers from your breast surgeon, plastic surgeon, Medical Oncologist and Radiation Oncologist before committing to any treatment. If you don't know these members of your Multidiscipline Treatment Team ask to speak to them before operation.

With love

Joy K

Forum Discussion

Miss Lea

12 Replies

Recent Discussions

Genomic testing or skip the test

Maitland Public or Private Hospitals?

Short stabbing pain

🗣️🩺Cancer Australia invites your participation in the Optimal Care Pathway (OCP) templates

Post mastectomy scar management

Disclaimer: