i think you you are taking the right choice. we discovered we have a CDH1 mutated gene in our family because I got a lobular breast cancer and ,as I am a man, the doctos knew straight away there was something wrong. now i am on chemo and got a mastectomy but the cancer reached a lymphnode. don't go through that. To me, quality of life is waking up to a sunny day ,be happy and not thinking if I will make it through the next ten years.
Hi Bob, this is Polly. I just love your attitude… live for today for tomorrow is unknown! I’m so sorry that they found cells in your lymph nodes. I trust you will beat this! You seem to be very strong! A fighter attitude is so very important! We appreciate you sharing your experience with us. Keeping you in our thoughts and prayers… always. ❤️ Would you maybe be interested in an interview with us? It is not often or commonly spoken that men can get lobular BC with this gene mutation. Something that should probably gain more awareness. You sharing could possibly save another man? No pressure. We understand that you are going through a lot. Taking care of yourself should most definitely come first! ❤️❤️🙏🏻🙏🏻💙💙
Wow! I had no idea men could get breast cancer with the CDH1 gene as the specialists that I’ve spoken with said it was a “zero% chance” because it’s never been documented! I know I, and many others, would love to hear your story and to bring awareness to your case. We all have brothers, fathers and sons with this gene as well, and your case would really help us change our expectations for monitoring.
Bob Bar I'm sorry to hear of your diagnosis! I as well didn't know that men could get breast cancer from a CDH1 mutated gene. I had a breast reduction over 20 years ago. The pathology report showed that I had Lobular Atipical tissue in both breasts with a 69% chance of developing cancer. In May of 2021 I was diagnosed with Metastatic ductal carcinoma of the left breast. My surgeon just wanted me to have a lumpectomy. I denied and requested a radical mastectomy of both breasts with removal of my nipples. Especially due to the pathology report from years ago..Now I've lost my left implant 4 times and have a serious infection. I had major issues with my plastic surgeon and so far another referral is not happening fast enough. I wish you the best of this sad situation. I am losing hope for myself.
Thank you so much for not only sharing the stories of other CDH1+’s but thank you for sharing YOUR story! Nothing you’re saying or thinking sounds crazy or strange! Those of us who haven’t made the leap for prophylactic surgeries are right here with you, we’re worrying and changing our timelines every MINUTE of every day, you are not alone :) You and Polly are so strong and brave and are a shining example for those of us early on in our journey and we’re all cheering you both on!!
This is Polly… thank you for your support. It’s not always easy to be vulnerable and exposed but If we can help even just one person by doing so it is worth it. This gene is not the friendliest of mutations but it is so nice to know we are not alone in this battle! Hugs to you fellow CDH1’er. ❤️❤️❤️💙💙💙 Hopefully through awareness and continued research we can find a cure. 🙏🏻🙏🏻🙏🏻
Thank you for your cadidness and honesty and vulnerability. I was diagnosed with DCIS 48 hrs ago. Just starting my research for mastectomy. Thank you thank you 🙏
How are you doing? Did you get surgery done yet. Thank you thank you for your candid, vulnerable information. I was just diagnosed with DCIS 48 hrs ago. Starting my research now. You were ver helpful.
I’m so sorry to hear that!!!! So I assume you are moving forward with dm??? My sister had dcis, but received the diagnosis AFTER mastectomy….After speaking with my doctor, I have decided to move the surgery date to September. We have a big trip planned for the summer and I didn’t want to be down and out white we’re traveling.
I was recently diagnosed with BRCA1 gene mutation. My mother had breast cancer. I’ve expressed my decision to get a prophylactic mastectomy with direct to implant reconstruction. I’m 31 with 3 kids, I don’t want to wait. I also have insurance that would cover it. My mom is against it. I think if you have the chance to do it, then do it. I hope and pray your process goes well.
I’m so sorry! It’s a tough decision to make. After watching my sister’s relatively easy recovery, I feel like things will be good! Have you spoken to any surgeons yet?
@@BeetinGenes I’m supposed to go to my gynecologist April 14 to talk over the test results and that’s when I’m going to let her know that I want to go forward with surgery. I found a plastic surgeon who does mastectomies so hopefully I only have to see one doctor.
Please do your research on implants! I've had nothing but trouble. I've had 4 surgies. All failure and a horrible infection and DVT. Now I'm waiting for another plastic surgeon to remove my implants. I will be flat chested which I didn't want. I hope everything goes well. Honestly I can't recall the mastectomy in December. So don't worry about that. 💞. I had metastatic ductal carcinoma stage 1. But...over 20 yrs ago I had a breast reduction. The path report showed lobular tissue. With a 60% chance of cancer in the future. Please update!
Oh my gosh! I’m so sorry to hear that! I considered going flat because of breast implant illness. I am going to try with implants first. I wish I could do the tram flap, but I don’t have enough fat….so glad to hear your surgery went well and then you don’t have to worry anymore! Did you spare your nipples?
Beetin Gene's No my nipples were removed. Metastatic ductal carcinoma. NONE of my implant surgies went well! So I had emotional breakdowns each time. Now I/3 of the implant is coming through the tear in my skin. So painful. Please don't try implants especially if your skin is thin. It won't hold the implant and your skin will tear open. You and sister are so slim which is great for a padded sports bra! I don't want you to go through the pain and heartache as I'm going through. 💔
Hi Lori, this is Polly. I just read your message to Bob. I’m so sorry you are going through all these complications. I will pray that you can find a proper solution. Have you maybe considered doing a tram flap? I know the last thing you probably want is another surgery but maybe something to consider in a couple years down the road?!? Keeping you in my thoughts! 🙏🏻🙏🏻❤️❤️
@@BeetinGenes Hi Polly, how are you these days? I had disaster with the left implants each time. I don't know why my surgeon didn't try a different approach! I'm going to the ER today due to infection and my left implant partially out! I'm afraid to try something new. Thank you, Polly!
@@lorij6796 oh no! I’m so sorry you are having these complications! That has to be so difficult! I’m praying this will all be resolved and you can finally move past this difficult situation! 🙏🏻❤️💙
@@BeetinGenes Please don't worry about the mastectomy surgery. Hopefully they keep you in the hospital overnight. So you can have good pain control. If you have implants they don't resemble breasts. It's not like you still have chest muscles and get implants. Not like the Hollywood ladies. I wish that I had done research. I would have had all these months of pain back. Best of luck what ever you decide! I'm rooting for you and your sister! 💞
i think you you are taking the right choice. we discovered we have a CDH1 mutated gene in our family because I got a lobular breast cancer and ,as I am a man, the doctos knew straight away there was something wrong. now i am on chemo and got a mastectomy but the cancer reached a lymphnode. don't go through that. To me, quality of life is waking up to a sunny day ,be happy and not thinking if I will make it through the next ten years.
Hi Bob, this is Polly. I just love your attitude… live for today for tomorrow is unknown! I’m so sorry that they found cells in your lymph nodes. I trust you will beat this! You seem to be very strong! A fighter attitude is so very important! We appreciate you sharing your experience with us. Keeping you in our thoughts and prayers… always. ❤️
Would you maybe be interested in an interview with us? It is not often or commonly spoken that men can get lobular BC with this gene mutation. Something that should probably gain more awareness. You sharing could possibly save another man? No pressure. We understand that you are going through a lot. Taking care of yourself should most definitely come first! ❤️❤️🙏🏻🙏🏻💙💙
Wow! I had no idea men could get breast cancer with the CDH1 gene as the specialists that I’ve spoken with said it was a “zero% chance” because it’s never been documented! I know I, and many others, would love to hear your story and to bring awareness to your case. We all have brothers, fathers and sons with this gene as well, and your case would really help us change our expectations for monitoring.
Bob Bar
I'm sorry to hear of your diagnosis! I as well didn't know that men could get breast cancer from a CDH1 mutated gene. I had a breast reduction over 20 years ago. The pathology report showed that I had
Lobular Atipical tissue in both breasts with a 69% chance of developing cancer. In May of 2021 I was diagnosed with Metastatic ductal carcinoma of the left breast. My surgeon just wanted me to have a lumpectomy. I denied and requested a radical mastectomy of both breasts with removal of my nipples. Especially due to the pathology report from years ago..Now I've lost my left implant 4 times and have a serious infection. I had major issues with my plastic surgeon and so far another referral is not happening fast enough.
I wish you the best of this sad situation. I am losing hope for myself.
Thank you so much for not only sharing the stories of other CDH1+’s but thank you for sharing YOUR story! Nothing you’re saying or thinking sounds crazy or strange! Those of us who haven’t made the leap for prophylactic surgeries are right here with you, we’re worrying and changing our timelines every MINUTE of every day, you are not alone :) You and Polly are so strong and brave and are a shining example for those of us early on in our journey and we’re all cheering you both on!!
This is Polly… thank you for your support. It’s not always easy to be vulnerable and exposed but If we can help even just one person by doing so it is worth it. This gene is not the friendliest of mutations but it is so nice to know we are not alone in this battle! Hugs to you fellow CDH1’er. ❤️❤️❤️💙💙💙 Hopefully through awareness and continued research we can find a cure. 🙏🏻🙏🏻🙏🏻
Thank you for your cadidness and honesty and vulnerability. I was diagnosed with DCIS 48 hrs ago. Just starting my research for mastectomy. Thank you thank you 🙏
Thinking of you girl!!!! You aren’t alone!!!
Thank you so much for sharing! Wishing you all the best :)
Thank you! ☺️❤️
How are you doing? Did you get surgery done yet.
Thank you thank you for your candid, vulnerable information. I was just diagnosed with DCIS 48 hrs ago. Starting my research now. You were ver helpful.
I’m so sorry to hear that!!!! So I assume you are moving forward with dm??? My sister had dcis, but received the diagnosis AFTER mastectomy….After speaking with my doctor, I have decided to move the surgery date to September. We have a big trip planned for the summer and I didn’t want to be down and out white we’re traveling.
I did mastectomy LD flat surgery last month.
I was recently diagnosed with BRCA1 gene mutation. My mother had breast cancer. I’ve expressed my decision to get a prophylactic mastectomy with direct to implant reconstruction. I’m 31 with 3 kids, I don’t want to wait. I also have insurance that would cover it. My mom is against it. I think if you have the chance to do it, then do it. I hope and pray your process goes well.
I’m so sorry! It’s a tough decision to make. After watching my sister’s relatively easy recovery, I feel like things will be good! Have you spoken to any surgeons yet?
@@BeetinGenes I’m supposed to go to my gynecologist April 14 to talk over the test results and that’s when I’m going to let her know that I want to go forward with surgery. I found a plastic surgeon who does mastectomies so hopefully I only have to see one doctor.
Please do your research on implants! I've had nothing but trouble. I've had 4 surgies. All failure and a horrible infection and DVT. Now I'm waiting for another plastic surgeon to remove my implants. I will be flat chested which I didn't want. I hope everything goes well. Honestly I can't recall the mastectomy in December. So don't worry about that. 💞. I had metastatic ductal carcinoma stage 1. But...over 20 yrs ago I had a breast reduction. The path report showed lobular
tissue. With a 60% chance of cancer in the future.
Please update!
Oh my gosh! I’m so sorry to hear that! I considered going flat because of breast implant illness. I am going to try with implants first. I wish I could do the tram flap, but I don’t have enough fat….so glad to hear your surgery went well and then you don’t have to worry anymore! Did you spare your nipples?
Beetin Gene's
No my nipples were removed. Metastatic ductal carcinoma. NONE of my implant surgies went well! So I had emotional breakdowns each time. Now I/3 of the implant is coming through the tear in my skin. So painful. Please don't try implants especially if your skin is thin. It won't hold the implant and your skin will tear open. You and sister are so slim which is great for a padded sports bra! I don't want you to go through the pain and heartache as I'm going through. 💔
Hi Lori, this is Polly. I just read your message to Bob. I’m so sorry you are going through all these complications. I will pray that you can find a proper solution. Have you maybe considered doing a tram flap? I know the last thing you probably want is another surgery but maybe something to consider in a couple years down the road?!? Keeping you in my thoughts! 🙏🏻🙏🏻❤️❤️
@@BeetinGenes
Hi Polly, how are you these
days? I had disaster with the left implants each time. I don't know why my surgeon didn't try a different approach! I'm going to the ER today due to infection and my left implant partially out! I'm afraid to try something new. Thank you, Polly!
@@lorij6796 oh no! I’m so sorry you are having these complications! That has to be so difficult! I’m praying this will all be resolved and you can finally move past this difficult situation! 🙏🏻❤️💙
How is your sister doing?
She’s great!!! Healed up and feeling good!
Oh I'm so happy for her! Before I had the mastectomy her vlogs helped me!
@@BeetinGenes
Please don't worry about the mastectomy surgery. Hopefully they keep you in the hospital overnight. So you can have good pain control. If you have implants they don't resemble breasts. It's not like you still have chest muscles and get implants.
Not like the Hollywood ladies. I wish that I had done research. I would have had all these months of pain back. Best of luck what ever you decide! I'm rooting for you and your sister! 💞