invasive lobular carcinoma and invasive lobular in situ

Posted by gailmarienewton @gailmarienewton, Jan 17 7:33am

I have recently been diagnosed with invasive lobular carcinoma. I am overwhelmed with info on web. I am interested in treatments. What treatments have you had? How did it affect you? (I also have leukemia....so I am really concerned.)

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Profile picture for gailmarienewton @gailmarienewton

I was just informed that I can not have reconstruction because of health issues: leukemia, blood clotting issues, and Low IGg/IGm. I am in treatment for these. MD wants to take just the right breast because of fear of infection...I think she should take both. I can not see me standing in front of a mirror otherwise. Also, I am a beach person...always in a bathing suit from May through October....I can't see that I will be wearing one now. The ones that I see on line are awful. I am overwhelmed. Also, the added treatments of hormones sounds scary to me...and maybe radiation...yike! Thoughts??????

Jump to this post

Thank you. This is how I am leaning. It just makes sense to me.

REPLY
Profile picture for gailmarienewton @gailmarienewton

I was just informed that I can not have reconstruction because of health issues: leukemia, blood clotting issues, and Low IGg/IGm. I am in treatment for these. MD wants to take just the right breast because of fear of infection...I think she should take both. I can not see me standing in front of a mirror otherwise. Also, I am a beach person...always in a bathing suit from May through October....I can't see that I will be wearing one now. The ones that I see on line are awful. I am overwhelmed. Also, the added treatments of hormones sounds scary to me...and maybe radiation...yike! Thoughts??????

Jump to this post

Some things to consider -

- Some women have written about getting an Aesthetic Flat Closure during a mastectomy. It leave your chest wall more contoured and usually more visually appealing. You’ll find others here that have had this done.

- Insist that a plastic surgeon step in and complete the closure after the oncology surgeon has remove breast tissue. This might be more likely to happen at a comprehensive cancer center. There is absolutely no reason that the sutures shouldn’t look as perfect as those done during a reconstruction.

- Consider trying a long sleeve bathing suit. My young granddaughter has vitiligo and another autoimmune disease affected by the sun. We all bought long sleeve bathing suits because she must wear one. I was very surprised, they can be very attractive. My daughter in law looks great in one, kind of sexy. Some have more breathable fabric than others. Added benefit, they do protect your skin from damaging sun without needing sunscreen.

REPLY
Profile picture for gailmarienewton @gailmarienewton

I was just informed that I can not have reconstruction because of health issues: leukemia, blood clotting issues, and Low IGg/IGm. I am in treatment for these. MD wants to take just the right breast because of fear of infection...I think she should take both. I can not see me standing in front of a mirror otherwise. Also, I am a beach person...always in a bathing suit from May through October....I can't see that I will be wearing one now. The ones that I see on line are awful. I am overwhelmed. Also, the added treatments of hormones sounds scary to me...and maybe radiation...yike! Thoughts??????

Jump to this post

I feel so much for you. Having a cancer diagnosis alone is a challenge. I had a bilateral mastectomy last February from ILC. It was only in one breast but I opted for taking both breasts because ILC likes to travel from what I read. I did have a reconstruction done but have had capsular contraction happen with a seroma under the right breast implant last September so I had surgery again to remove the implant and the seroma which was just fluid not an infection. However now my breasts are not identical and I will most likely have another surgery down the road to address that problem. If I knew what I know now, I probably would have opted to just go flat. Why not. Then you can wear a bathing suit and you don’t have to bother with bras! How freeing! I wish you the best. Every women has to decide for themselves what is best for them. Do what will make you feel good about looking in the mirror. That is what I did.

REPLY
Profile picture for gailmarienewton @gailmarienewton

I was just informed that I can not have reconstruction because of health issues: leukemia, blood clotting issues, and Low IGg/IGm. I am in treatment for these. MD wants to take just the right breast because of fear of infection...I think she should take both. I can not see me standing in front of a mirror otherwise. Also, I am a beach person...always in a bathing suit from May through October....I can't see that I will be wearing one now. The ones that I see on line are awful. I am overwhelmed. Also, the added treatments of hormones sounds scary to me...and maybe radiation...yike! Thoughts??????

Jump to this post

I'm glad to see some helpful comments here. I am wondering if there is someone you can ask to help with an overview of your care, as there are essentially two different treatment plans. Do you have one or two oncologists? Can they both meet with you, even remotely, so that you can talk through the differing concerns? Or might a nurse co-ordinator help? Also, do you have a friend or family member you can talk this through with? My experience with breast cancer is that I was offered the best treatment plan that could be devised, but ultimately I had to also factor in what was best for me as a person.

REPLY
Profile picture for gailmarienewton @gailmarienewton

I was just informed that I can not have reconstruction because of health issues: leukemia, blood clotting issues, and Low IGg/IGm. I am in treatment for these. MD wants to take just the right breast because of fear of infection...I think she should take both. I can not see me standing in front of a mirror otherwise. Also, I am a beach person...always in a bathing suit from May through October....I can't see that I will be wearing one now. The ones that I see on line are awful. I am overwhelmed. Also, the added treatments of hormones sounds scary to me...and maybe radiation...yike! Thoughts??????

Jump to this post

Hello! My cancer (invasive lobular) was in one breast and my doc was thrilled that I wanted to go ahead and remove both. Please keep advocating for yourself!!
Also, in regards to a bathing suit, I purchased a bra that has saline implants (for lack of a better word) built in it. I wear it to work and on the beach. I wear it under my bathing suit and you can’t see it with several suits and it looks like I’m wearing a bra under my suit in the ones where it shows. 🙂

REPLY
Profile picture for gailmarienewton @gailmarienewton

I was just informed that I can not have reconstruction because of health issues: leukemia, blood clotting issues, and Low IGg/IGm. I am in treatment for these. MD wants to take just the right breast because of fear of infection...I think she should take both. I can not see me standing in front of a mirror otherwise. Also, I am a beach person...always in a bathing suit from May through October....I can't see that I will be wearing one now. The ones that I see on line are awful. I am overwhelmed. Also, the added treatments of hormones sounds scary to me...and maybe radiation...yike! Thoughts??????

Jump to this post

Thank you. So helpful. I am trying so hard to wrap my head about this.

REPLY
Profile picture for Rubyslippers @triciaot

Some things to consider -

- Some women have written about getting an Aesthetic Flat Closure during a mastectomy. It leave your chest wall more contoured and usually more visually appealing. You’ll find others here that have had this done.

- Insist that a plastic surgeon step in and complete the closure after the oncology surgeon has remove breast tissue. This might be more likely to happen at a comprehensive cancer center. There is absolutely no reason that the sutures shouldn’t look as perfect as those done during a reconstruction.

- Consider trying a long sleeve bathing suit. My young granddaughter has vitiligo and another autoimmune disease affected by the sun. We all bought long sleeve bathing suits because she must wear one. I was very surprised, they can be very attractive. My daughter in law looks great in one, kind of sexy. Some have more breathable fabric than others. Added benefit, they do protect your skin from damaging sun without needing sunscreen.

Jump to this post

@triciaot great idea on the bathing suit. I will check if a plastic surgeon is a possibility.

REPLY
Profile picture for Rubyslippers @triciaot

Some things to consider -

- Some women have written about getting an Aesthetic Flat Closure during a mastectomy. It leave your chest wall more contoured and usually more visually appealing. You’ll find others here that have had this done.

- Insist that a plastic surgeon step in and complete the closure after the oncology surgeon has remove breast tissue. This might be more likely to happen at a comprehensive cancer center. There is absolutely no reason that the sutures shouldn’t look as perfect as those done during a reconstruction.

- Consider trying a long sleeve bathing suit. My young granddaughter has vitiligo and another autoimmune disease affected by the sun. We all bought long sleeve bathing suits because she must wear one. I was very surprised, they can be very attractive. My daughter in law looks great in one, kind of sexy. Some have more breathable fabric than others. Added benefit, they do protect your skin from damaging sun without needing sunscreen.

Jump to this post

@triciaot yes totally agree. I had a plastic surgeon do my reconstruction the same time as the double mastectomy. Definitely worth it and having two breasts the same is worth it too.

REPLY
Profile picture for gailmarienewton @gailmarienewton

I was just informed that I can not have reconstruction because of health issues: leukemia, blood clotting issues, and Low IGg/IGm. I am in treatment for these. MD wants to take just the right breast because of fear of infection...I think she should take both. I can not see me standing in front of a mirror otherwise. Also, I am a beach person...always in a bathing suit from May through October....I can't see that I will be wearing one now. The ones that I see on line are awful. I am overwhelmed. Also, the added treatments of hormones sounds scary to me...and maybe radiation...yike! Thoughts??????

Jump to this post

I can not have restruction because I have leukemia,IGg/IGm issues, blood clot issues in legs, 2 nodules is lungs that they are watching until April, etc......they are afraid of infection. But...I am very healthy, eat well, exercise, am in everything, and do not give up!

REPLY
Profile picture for wandall @wandall

@panarosmith
Can I ask if you take Letrazole morning or evening? I had a single mastectomy in December and supposed to start Letrazole this week. Just trying to figure out if there is a better time of day to minimize any side effects.

Jump to this post

Here are some related discussions:
- Timing of AI drugs https://connect.mayoclinic.org/discussion/timing-of-ai-drugs/
- Timing of HRT, anastrozole - taking day or night? https://connect.mayoclinic.org/discussion/timing-of-hrt-anastrozole-taking-day-or-night/

@wandall, I hope you saw the helpful post responding to your question. Have you discovered a time of day that works best for you?

REPLY
Please sign in or register to post a reply.