Some people view my decision as radical. Drastic. Unnecessary. Some would even go so far as to call it self mutilation.
I mean really? Who starts lopping off body parts because they are afraid that there might be something wrong with them? That they might get sick.
I do. As do others.
I call it easy. Rational. Pro-active. Life.
My whole life, it has never been a matter of “if” but a matter of “when.” I’m talking about cancer. The dreaded and almost over saturated topic these days. It seems like everyone knows someone who has it or has died from it. It has sadly become….common. Throw in the brilliant, yet excessive, marketing of inescapable dosages of pink throughout October, and it is almost to the point of annoying and ignorable.
People with cancer, people fighting cancer, people dying of cancer, people dead of cancer.
Cancer awareness, cancer societies, cancer centers, cancer support groups/blogs/journals/forums, cancer fundraising, cancer walks, cancer prevention.
But, there is another population.
There is a group of us that fall into a grey zone. We are the ones that are destined to get cancer. It is in our genes. We surf below the radar in society.
We do not have awareness efforts or rallies or walks, centers or societies. We struggle through our decisions, navigating a system, without a diagnosis of the big “C”. There is no machine to put us into and process us through, no roadmap. Milling about, we do not realizing we aren’t alone, chopping off our breasts in the dark and slinking back into life hoping that no one will notice. How do you explain this to people? Nullification.
I have spent almost every day of my life waiting for the diagnosis. Wondering when the day would be that I finally get it, just to be able to get on with it. To face it, fight it, and survive. Or die. The waiting is torture.
That grey zone is where I have lived most adulthood.
At some point I found out about prophylactic mastectomy. A radical, albeit rational, response to breast cancer. I waited, hopefully not too long, until I was done having children. I just had my second, and last, child a year ago.
So, it is time.
It is time for me to take power back from cancer and demand my life back. I have a five year old precocious little girl and an imp of a one year old boy. I have so many years ahead of me. I need them. I will do anything for my family, my years, my life.
I will even remove my body parts.
This story begs to be told. Not only for my own sanity, but for all those facing this or knowing others who are facing this. Let it be a road map for all of those to come. Let it be the oasis for all of those who have traveled it before. Let us find each other through it; teach each other, support each other, love each other.
Greater Than The Sum Of My Parts 
Every female in my family has been diagnosed with breast cancer. When my time came, the DR wanted to do minimal invasive surgery, but I opted for a double mastectomy. I do not regret it in the least.
Sandy, thank you for sharing. From minimal invasive surgery and lumpectomies to prophlycatic mastectomies, women’s views on this type of treaatment can be so polarized. What is right for one is insane for another. I find the gap fascinating.
I commend your decision and am happy to hear you have no regrets!
M.
Sometimes, it’s staggering for me to realize that I don’t just know this amazing woman, she married me. I’m so proud of your courageous stance. I love you.
You are both amazing and a perfect match for one another. :)
Thank you….
in deep gassho
Welcome GML! I have to admit to Googling “gassho.” Thank you for your choice in wording and expanding my knowledge. I am humbled by your appreciation. I look forward to seeing again, M.
We are proud of you and we love you.
I admire you for your courage. It is a tough decision to make to start “lopping off body parts because they are afraid that there might be something wrong with them”. It also takes a lot of strength and courage to do it. I know that, if I developed testicular cancer, I would be faced with a similar decision. It’s a smart person who takes a pro-active (and not reactive) stance.
My wife is at a VERY strong risk for cancer, as her mother and aunt died within a year of each other from breast cancer and her sister was just diagnosed with cancer. This puts her in a VERY high risk category. So we are aware of this on a very conscious basis.
I have already told my wife that, if she were to lose her breasts to cancer, I would love her no less than I do now. After, her entire identity is not wrapped up in her breasts, but in the loving/caring lady that she is. It was her beauty, radiance, and personality that drew me to her, not her breasts.
Let anyone of us know if there is anything that we can do for you. After all, isn’t this what the social media is all about, when you come right down to it?
Thank you so much for your offer. The fact that you are here, following and listening, is great support. What are your wife’s plans regarding her risk?
Currently, we just monitor the situation. She has her annual breast check and does monthly self-checks.
At one point, about 20 years ago, we had a scare. She found a lump in her breast, but it turned out to be fatty tissue. So we have kept a close eye on it since then.
Hello, I am Laura Burgess and I am a third year fashion entrepreneurship student at the University of Central Lancashire (UK). For my Final major project my business concept is to create a range of feminine lingerie for women whom have had a mastectomy.
Avoir Espoir will create a range of lingerie which will be trend led altering shapes, colourways and prints depending on the season’s trends. The mission is to create lingerie which will make women feel confident and help merge the health and wellness market with luxury fashion.
I would really appreciate if you can fill out my questionnaire. Please be as honest as possible and constructive comments are welcomed. This will enable me to gain necessary research to create a product which satisfies the customer needs and wants.
The survey is in 3 parts, click the links below and it will take you immediately to the pages. Thank you for taking the time to fill out my questionnaire. All of your comments are valued and they will help me with finalising my collection.
http://www.surveymonkey.com/s/KY6T282
http://www.surveymonkey.com/s/965RVW5
http://www.surveymonkey.com/s/DYLYNXM
Good for you Melissa. I am proud of you! You will have a very long life with those beautiful children. I hope to see you soon.
Melissa,
This is amazing.
I’m so happy your blog made its way to me, as I am one of the founders of this local breast cancer project: http://www.ofscars.org.
We’d love to talk to you about your journey.
elli rader
Elli, Thanks for reading. I spent some time on your site last weekend, great project! I am interested in seeing your work and in future events. Please feel free to contact me at my email, edamama@gmail.com. Actually getting me on my phone when I am not busy is virtually impossible.
Talk soon!
M.
This link does not work.
Try http://www.ofscars.com That works!
Thanks.
Wow. Doug is a close friend and asked me to check out your site. 28 ½ years ago I was diagnosed with breast cancer. During my chemo my gynecologist said if you don’t have breast tissue you can’t get breast cancer. It can come back elsewhere in your body but not your breast. I spoke with my oncologist and he agreed. I had the prophylactic mastectomy and never looked back even though I was single at the time. 4 years later I met my husband and he didn’t care and still doesn’t. I don’t think I would have survived without having my other breast removed. The strange thing is that although there is breast cancer on both sides of my family, when I had the gene testing done I don’t have ‘the’ gene.
Thank you! I have a dear, dear childhood friend who had this same surgery done in early January. She is 45, as am I. We lost both of your Moms in 2010 to complications from chemo. My Mom was courageously battling breast cancer and her Mom was battling ovarian cancer for the second time after being a breast cancer survivor for 20 years. Your blog will help my friend and I thank you for that. I also live in North Minneapolis and if there is ever anything I can help you with please let me know.
Thank you for contacting me. I am so sorry to hear of the loss of your Mom. Please do not hesitate in encouraging your friend to contact me for anything. You don’t either! I hope to talk again.
M.
I had a double mastectomy in August, no reconstruction. I was stage 1 breast cancer. I just had my second oncologist’s appointment and all is well. I am 67 years old and am surprised that it hasn’t been that bad. I also had a wonderful supportive husband. I salute you.
Bravo, I salute you! I am glad that they caught it early. I hope your recovery continues positively. Let me know if there is anything I can do for you or your family.
M.
Thank you for your story. I watched my Mom 20 years ago go through this as it metastasized to other parts of her body and finally took her from us. For that reason, I have thought about this type of comfort knowing I can do this for me. I am definitely going to check out the options. Thank you for sharing your strength!!!! You are a beautiful person:) My family and husband also thank you.
I recently saw your video clip on WCCO news. It was what I needed to see as I am scheduled at the Mayo clinic on May 8th to have the same procedure. I am going to have reconstruction that day.also. It was a tough decision for me, but seeing that you are the same age I am and you also have children helps me know that my reasons for doing the surgery are not crazy. My mother died at the age of 38 years old and I have 5 aunts, Grandmother, Great Aunts and maybe many others in my family diagnosed with BC. Thank you so much for sharing your story. I feel strong some days and others I feel as though I am wasting my time for doing it.
Thank you so much again. Our support groups are small. I would like to see the Previvors group larger than the Breast Cancer Group ANYDAY!!!! If you wish to contact me, PLEASE DO!! I would love to speak with you or even meet with you to learn more about the support you have received and how we could provide more support out there.
Genuinely, Becky Duncan
Becky, you are NOT wasting your time! You are demanding time back for your own life. Time once again belongs to you, not cancer.
I have yet to find previvor groups here in Mpls. Unfortunately, the Force groups have not been good with ever getting back to me. It was very disappointing. That is what prompted me to go so public. If I couldnt find anyone there for me, then I wanted to be there for someone else.
Please let me know if there is anything that I can do to help you before surgery or after. I would love to start something more to help other women and their friends and families. Not sure where you are, but we should meet for coffee and talk!
M.
I sent you an email. Did you receive it?
Yes ma’am. Replied. :)
Melissa – I just saw the news story. I as well have a strong family history. It’s interesting when my mother was diagnosed 13 years ago and genetically tested, it was suggested that as her daughters we consider prophylactic surgery once done having children. My mother’s mother and all of her siblings (7 in total) have had breast, ovarian or uterine cancer. My mother’s maternal grandfather also had breast cancer. I do not have BRCA1 or 2. My Obgyn does not think it’s necessary to consider this as an option. My mother is now 60 and was just diagnosed once again (even after having had a double mastectomy and hysterectomy) with breast cancer. Not ALL tissue can be removed, per her oncologist. It’s a different breast cancer strain than before and this journey is not one that will likely have a positive outcome, we are cautioned.
I’m wondering if you have the genetic(s) known to cause breast cancer or if you arrived at this decision by another method?
First and foremost, my biggest piece of advice in all of this is that you have to be your own health care advocate. Educate yourself and follow your gut. You are the one that has to live, or die, with the choices. Don’t let someone else dictate your treatment if you arent comfortable with it. The philosophy of care for breast cancer treatment is a vast spectrum. On one side you have some physicians recommending the least minimally invasive treatment options such as lumpectomy or patients that choose holistic methods. On the other end of this spectrum, you have people like me who choose to remove their breasts before they ever get cancer and the physicians that support this.
I am happy to hear that you do not have the BRCA 1/2 gene! Through this, I learned that there are other breast cancer genes out there that they havent located yet. They know they are there, but they just can’t find them yet.
I chose to not get tested yet. My family history is strong enough for me to make this decision. I felt that if I had tested negative, it would have only created doubt and anxiety in my mind. I knew what was right in my gut.
I always expected the medical response that you got. But now? I am shocked that you got that response. When I began this journey, each and every OBGYN, general practitioner, oncologist, etc nodded their head and easily agreed with my plan as being wise and practical.
It is an option and shouldnt they all be considered? That seems the wisest first step. Im sorry to hear that someone would tell you its not necessary to even think about.
I understand that all tissue cant be removed and that a risk remains.I am so sorry to hear of your mother’s recurrence. That does happen, even though rare. Heartbreaking. For me, the odd’s being reduced by over 90% were more than good enough for me. Its better than the odds I would love with for the alternative.
Please let me know if there is anything more I can answer or do to help. Ask me anything.
M.
Thanks for your reply. We are also awaiting pathology on several breast lumps my sister just had removed. All of this has been weighing on my mind lately as you can imagine and your story came at a good time to help me reconsider the options. If undergoing reconstruction, do you know if this hinders a clear picture of the breast tissue for future sonograms/mammograms? I’m guessing they do sonograms at that point?
My mother’s first round of breast cancer was not initially detected by mammogram and they wanted to send her home. After she refused to go home, having a gut feeling that something was not right, they told her they’d give her a sonogram but she would likely have to pay for it, herself. She agreed – and the sonogram is actually what detected the cancer.
I apologize, I’ve now read so many stories that I do not recall if you are undergoing reconstruction? Implants? Implants are what actually helped my mom discover her cancer this second time around. She could feel a foreign substance on her side and her implants were leaking. Evidently they commonly last about 10 years. Have you heard of this and/or did your Dr. make any recommendations around “changing the tires” at some point in time?
What kind of follow up care has been recommended on an ongoing basis?
Thanks for sharing what information you have gathered to help those of us who are in similar situations.
Melissa, I am not really sure but I have some appointments coming up and will be sure to discuss your questions with her. I have always had old and new digi mammo, ultrasound, and MRI and am unsure how things will go in the future. I have a feeling it might be MRI?
I’m not at all surprised that the mammo didnt detect her cancer. I think I read that up to 30% of cancer is missed by mammogram. My MRI is what found a suspicious mass in my breast. Thankfully it was benign, but it was still missed by mammo.
I am going through recon. I chose to do implants. I am in the expander stage right now but will be swapping them out for the highl cohesive “gummy bear” style implants when ready. They do not leak into your body when the shell breaks and from studies, seem to show a longer “shelf life.”
I have tons of follow up care at this point, lol! I am only 3 weeks out.
Keep reading and asking questions! I hope to be able to help answer any questions that come up.
M.
I have every breast cancer risk, between my mothers maternal and paternal side, except for a male being tested positive for breast cancer, although my brother was sent for a mammogram a couple years ago. He also had a malignant melanoma, which I believe is associated to the brca gene. I was negative for the gene, although insurance only paid for 1 test. So far, there are 2 relatives that tested positive. It doesn’t make me feel any better knowing I tested negative. There is just to much of a family history to ignore. My ? is, what kind of Doctor would I go to see regarding my concerns? A breast health specialist, a breast surgeon, a breastoncologist, to get their opinion? Any recommendations?
Sherri, Hi! Thanks for reading and posting your history/questions. My first question for you is, where do you live?
M.
Connecticut
I live in Connecticut
Sherri, I am sorry for the delay in my response. I have been underwater here.
Now that I know you are not local, I am sorry that I can’t give you specific referrals. I will ask my care team though if they have any recommended colleuges in Conn.
Good for you being proactive in your own care. We must be our own advocate. Just because you have tested neg for the one gene, doesn’t mean that you are not hereditarily predisposed. There are other genes out there. And you must go with your gut. Trust yourself. No matter what you decision.
Now, onto where to start. I decided that I wanted to find the best oncologist, who specialized in breast cancer, as my first step. I felt who better to truly understand what I was trying to avoid and help me navigate they system. I struck gold when I found Dr Barbara Bowers.
She had been rated as a “top doctor” in the MN area by both her peers as well as her patients. She had the area of specialization and the understand of preventative care. She was perfect on paper, and even better in person. She never pressured me to choose the path I did, but completely understood why I did and helped make the process as thorough and easy as possible. I can’t say enough about her.
Don’t start with a surgeon, that will come. And most likely you will be referred to them from your main care person. And the surgeon will most likely also be working closely with your plastic surgeon if you end up going down this path.
Do you have any magazine publications that do a yearly “Top Dr” edition or anything of the sort? I would start there and then start meeting people until you find someone that you click with.
I did not test positive for the BRCA 1 or 2. But there is so much evidence of genetic sporadic mutations. My test was negative but there was a change happening in these mutations which isn’t medical proven that I will have cancer, but to the doctors I have seen, my family history & my gutt feeling; I am not waiting around until they truly classify BRCA 3.
I support you 100 percent. My great grandmother died of cancer, my mother had breast cancer at age 70, I was diagnosed at age 47, my sister at age 56. My sister and I were tested for the genetic cancer gene but were both found to be negative, yet I believe it still runs in our family. I tried to save my breast my having a lumpectomy followed by radiation. Five years later the cancer came back in the same breast, so I was forced to have a mastectomy and since I did not want to get cancer again, I opted for a double mastectomy. I had reconstructive surgery however the side that had radiation did not take and the implant had to be removed, so I now have one protesus and one implant, and I feel totally deformed. If I had known the cancer would come back I would have chopped them both off the first time and I would have had a successful reconstruction, now I am deformed forever. After seeing what I went through, my sister opted for a double mastectomy right away.
Ruth, Unfortunately, I am not surprised that your family didn’t test pos for the BRCA genes. Most breast cancer doesn’t, and as my amazing Dr Bowers told me, there are still other genes out there that they know exist, but that they just can’t find yet. I didn’t go through the genetic tests yet. My family history is enough for me. I plan to down the road, but not yet as more decisions come with the results.
I am so sorry to hear your struggles with your treatment and reconstruction. I understand that radiation can make recon harder and I am sad to hear that you feel deformed. Have you researched all additional reconstruction options? I have seen some amazing work done on radiated breasts. Please let me know if there is anything that I can do to help. I love to find answers and possibilities when none seem possible.
M.
I was wondering if your health insurance paid for your surgery?
Yes. I have been planning and researching this procedure for years. And in those years I have been covered by…4? medical insurance companies. They all covered prophylactic mastectomy if certain criteria was met. Some varied slightly but most of them were the same. FYI, reconstruction is also covered, by law. Let me know if you have any other questions or if I can help in any way.
I have very good insurance through BCBS. that is my opinion though. I am scheduled for my Prophylactic Mascetomy May 8th at the Mayo and we all agree that we should just get everything in writing before I proceed with the surgery. But in all honesty, I am scared to death NOT to have the surgery. I have found out that I will be covered to have home health aide and physical therapy for after the reconstruction. All you need to do is call your insurance company and find out what is available. Push it to the max. It’s what you have been paying for. Good Luck
I didn’t need any care but I have heard other women who have gotten it. I think you know your body best and need to do whatever makes your recovery easiest. I dont think I will need PT either. We will see how I continue to heal and I am sure if problems arise, I will be pointed in the right direction.
A friend of mine choose an elective double mastectomy in 1982 at the age of 28 because of the history of breast cancer in every female on both sides of her family. After long discussions with her husband, she choose not to have any reconstructive surgery. She has never regretted it, they are still married and doing fine. Wishing you all the best.
I am the same- BRCA +, felt the same way, not if, just when the diagnosis would come, I had my double mastectomyu almost 4 years ago, now my daughter will do the same surgery tomorrow, at the young age of 25. We found out she was (+) 2 years ago.
She too feels empowered, says it’s a no-brainer. The journey isn’t something you can relly prepare for, it’s something you live everyday!. I am proud of her courage.
Congratulations to you and the very best of luck to your daughter!
I am having my mastectomy tomorrow. Someone just shared your story with me 5 minutes ago and after reading it, I can say I share youre feelings. At 25 i never thought I would be doing any of this, but like you said.. Its not and if, its a when for me as well. I would love to email/talk more with you.
Oh Samantha, you are going to be ok. Please try to sleep tonight, you will be on the other side soon. I wish we had found each other sooner. Please email me at edamama@gmail.com if you need anything. I will email you my phone number as well. Where will you be going for surgery? Is there anything I can do? You will be feeling like hell for a few days. The first 48 hours are the hardest and then they drastically improve. Stay on your nurses about meds. They dont automatically give them on schedule. You have to request them. You are younger and stronger than me and I am sure you will do even better!
M.
Hi Melissa
I saw your story tonite on WCCO news. I was impressed with your story. Mine is a little different but we all go through the same feeling. At the time I was married and he was diagnoised with stage 4 cancer. 3 months later is was diagnoised with breast cancer. It was so very small and I choose to have a double masctomy in a matter of hours. I wanted to live and didn’t know what was gonna happen with him. I was in a bad marriage and went through it all alone. I had 2 adult children, but needed to live for them. I ended up getting divorced and hitting the dating scene at 50. I am still not done with my reconstruction, had many complications. There is never a day that I regret my decision. 2 friends choose the biopse and I have been to their funerals. I have meet a great guy who loves me for me not my imcomplete breasts. Would love to see the photos on WCCO and who is your plastic surgeon? I am so proud of you for your decision and courage to share your story, you will be complete again and you will be the strongest person that wanted you to be.
Elaine
Thank you so much for your comments! I have a lot pf photos posted throughout my blog but would be willing to share any others if you wish. My plastic surgeon is Dr David Ruebeck from Midwest Plastic Surgery. I am very happy with him so far.
Talk soon.
M.
I had a double mastectomy after previously having a lumpectomy and treatment for invasive ductal and lobular breast cancer. 1 1/2 years later I had another lump so I elected prophylactic mastectomies. The lump that pushed me to decide this wasn’t breast cancer but in the original tumor bed I had more lobular breast cancer so I feel I probably saved my life. I elected not to do reconstruction, which ended up being a very good decision. 3 weeks after surgery I was diagnosed with ocular melanoma, a rare, orphan cancer that has a 50% metastatic rate. And then another rare orphan stomach cancer called GIST, which required major abdominal surgery, which would have been difficult to do had I had a TRAM reconstruction. There is no one right treatment option, there are several. You have to make the one best for you, then don’t look back.
Wow. I have to say, I have not heard of much that you mentioned. I have a lot of research to do! But look at you, fighter! Thank you for the advice, I am trying to not look back and second guess some decisions. I don’t regret the mastectomy but I have allowed myself to second guess some reconstruction decisions. No more of that. Eyes straight ahead.
Yes Melissa, the best advice my breast cancer surgeon gave me was to look at all my options, make the choice that seems the best for me, and then don’t second guess and look back. You’ll drive yourself crazy if you do that. The good news is that there is no one right choice. What was right for me might not be right for someone else. I’m glad you have this site because the subject matter is important and sharing our stories will help others. I wanted to get photos in the O.R. but couldn’t find someone to do a story then so I’m glad you did. So, no more second guessing, you’re on the journey and it will make your life better in the long run.
I feel so bad for your suffering that you have been through. I have heard of GIST but only through my schooling. You are a fighter. I have made my decision on my surgery and I am not looking back either. Thank you for sharing.
Missi,
I was shocked to read this article. Thank goodness everything went ok. You have always been very precious to me. I am kind of going through something similar, my mom was recently diagnosed with ovarian cancer, so i will be having my ovaries removed once we get her through this crisis. Love you!
Aunt Susan
Susan! Oh my gosh. I am so happy to hear from you. I have a lot of questions. Lets get together and talk soon? Will email you….
Love, M.
Sounds wonderful. It’s been a hectic few months with lots more to come, however, I have no doubt that we will find the time to reconnect. I try to look at my e’mail at least once a week. I am also working full time. One of my girlfrends has breast cancer and had that breat removed. For many years, she dreaded her annual mammogram with the fear of getting cancer in the other breast. Last summer she had the other breast removed and said it was the best decision she had ever made. No more stress. Take care. Love you!
I qualified to have the BRCA1/2 testing done because I had breast cancer and ocular melanoma at the same time. This can indicate BRCA1. I have no family history of breast or ovarian cancer but lots of other cancer. My testing showed a variant of BRCA1, which may or may not be significant. There aren’t enough of us with this gene to know yet.
that sounds similar to my testing. The Mayo Clinic in Rochester says they are a stone’s throw away from declaring BRCA 3.
My mom was tested after her breast cancer diagnosis. Sadly, she passed away four years ago. I was tested as well, but not before cancer struck, so I applaud you for being proactive. My mom, my sister and I all tested positive for BRCA. There is support online. I blog as well and can steer in the direction of more support if you’re interested. Thanks for sharing so candidly about this important issue. My best to you.
Thank you for bringing this very important topic out in the open. I applaud you for sharing your journey through your prophylactic mastectomy with the public. I, too, underwent a bilateral prophylactic mastectomy at the age of 41 (14 years ago) because of my family history of breast cancer. I couldn’t go another year with having abnormal mammogram results that turned out to be benign. I felt like a ticking time bomb, waiting for the cancer to occur. I chose a prophylactic mastectomy, and I haven’t regretted it for a second since then. Unfortunately, during the time I went through this, it was a very uncommon decision and I had no one who could relate to me. You are doing an important thing for the women out there who are considering this type of surgery.
So many women have come here and shared how they have also made this choice so many years ago. I knew that this has been happening but I didn’t realize how commonly and for how long. I can’t imagine, based on my difficulties in finding support now, how hard it must have been back then.
Thank you for also sharing with me!
Melissa
It has almost been a year since I started this breast cancer journey. Right now I am in the 4th week after having delayed bilateral reconstructive surgery. My PS is also Dr. Ruebeck. I have had double mascetomy, Chemo, and radiaton. I have always had difficulty with pulling and sensitive muscles in my chest since the masectomy. The last surgery still has me walking with hunched shoulders but I know it will get better again. Pain seems to be part of my daily routine now, something I don’t hear alot of women who have had masectomies complain about. I go in for my 2nd fill on thursday and yes I am worried that my radiated side won’t be successful, but Dr. Ruebeck is very positive it will go great. Thanks for sharing your story, it really helps to hear others share their stories and experiences.
Wanda
Wanda, I too have a fill appointment this Thursday! Perhaps I will see you there? I think mine is at 1:45?
11:00 is my appt. I try to work it around my lunch hours from work. I am keeping my fills small (25 cm) to minimize the pain and discomfort between each fill. Stay strong, Jesus, my family, co-workers, and breast friends are here for me everyday.
Wanda, I deal with chronic pain since breast cancer but I think it’s related to breast cancer treatment, and not the mastectomy surgery. I started swimming within a few weeks after surgery and that really helped me get range of motion back. I had a bilateral done and no reconstruction. One thing I get now, almost 8 years after surgery, is a very intense, deep itching along my scar. I apply pressure and it helps.
Was your cancer estrogen + and are you on an estrogen blocker? That can cause low grade pain and muscle aching.
Yes I am on an estrogen blocker. I am hoping with time after all the surgeries have been completed that the strong pulling sensations stop. Right now the reconstruction surgery and fills irritate the muscles daily. I will do some research on this topic also. Better days ahead with God’s grace.
Melissa,
we can make a difference in letting women know what there options are. I sent you an email, please send me one back or anyone can write to me and tell me their stories duncanbeckyjo@gmail.com. Knowledge is power!!! I just lost a classmate to lung cancer this evening. I am on a mission to find a way to be proactive in helping others.
Becky, sorry for the delay in my response. I will get online again tomorrow and talk to you soon!
Thanks.
M.
Melissa,
Thank you so much for posting and making public your story that I feel is my exact story. Four weeks ago I underwent a propholactic masectomy and reconstructive surgery at the age of 37 without the diagnosis of breast cancer. My mother along with 7 other females in my family passed away from this disease before the age of 50, so for me it was not if I get breast cancer but when. I underwent the breast cancer gene testing in December and received the results in January that I was a positive carrier of this gene. I have found it difficult and almost that I was not worthy of joining breast cancer support groups because I did not have cancer like the other women in these support groups. I have found this journey lonely and at times wished I had been diagnosed with breast cancer so I could receve the type of support that I need. I would love to help and get involved in any way with you or if you know how I could work with women that are in the same situation like we are I would appreciate receiving that information. I am sure that you are extremely busy but any information on what I can do to help would really be appreciated.
Again thank you so much for being brave and sharing your story that has helped me in my situation so much!
Michelle Sexe
michelle.sexe@state.mn.us
Michelle, I so wish that I could have found so many of the women commenting months ago. I too felt that I didn’t “belong” in breast cancer support groups. I felt that I would be viewed as petty or something. Bemoaning the fact that I am having a mastectomy when those women were fighting for their lives and facing death in the face. No,I didn’t deserve to be there.
I think there are many similarities and perhaps some support groups would work for the cross over groups, but there are also distinct differences. It wouldnt be right for everyone.
So, my struggle and daily question?
Where do I go from here? HOW do I help and what does that look like? This is a ground up effort!
Hi Melissa,
My sister told me about your story on WCCO and about your blog. It couldn’t have come at a better time for me. My sister is fighting stage 4 bc. She was diagnosed at 45 about 3 years ago now. I am 35 and have been having to have yearly and at times, bi-yearly mammograms for the past 5 years. I had a binign tumor in my left breast so they have become cautious with me especially with my family history. I am sick of it, sick of the worry so I am researching prophylactic mastectomy. My OB put me in touch with a great breast surgeon who is having me meet with a genetic counselor on tuesday and because of my risk factor, I have to start having breast MRIs done every year along with the mammogram (just what i wanted to hear, more tests). What I can’t shake from my mind is that 6 months before my sisters diagnosis, when I found another lump, my sister said to me “Try not to worry, I get those all the time too.” There is so much cancer in my family that I feel as though I am just waiting for the shoe to drop. Your blog will give me things to think about and questions to ask. This is a decision I will not take lightly but my gut is telling me that it’s not a matter of if, it’s a matter of when I do it. Thank you.
Sarah. I understand. All. Of. It. I hope that provides some sort of relief for you. To just know that someone else understands exactly how you feel and the decisions you are facing. Now, having said that, how can I help? Do you have questions? Pick my brain! Are you in town? Sorry, “town” as in Mpls/St Paul? A few wheels just turned and some things came together for me and clicked.
I am thinking that I need to put together a night where a few of us might be able to get together and talk about this.
Melissa
Thank you for sharing your journey! I had a double mastectomy in December after being diagnosed with DCIS, “Stage 0” breast cancer, in November. I was 40 yo at the time of surgery and I am the 4th generation in my family to be diagnosed with breast cancer, almost all of us were pre-menopausal. Because my mother was diagnosed at age 32 I have been getting mammograms since my late 20’s. This cancer was found on a mammogram, it was not palpable to myself or any of doctors I saw. The thing about DCIS is that you have choices for treatment, lumpectomy + radiation or mastectomy. I decided that I didn’t want to expose myself to the radiation nor wait for cancer to recur or show up in the other breast. I also opted for reconstruction and will be undergoing my implant swap in April. Somedays fall into place and I almost forget where I was a few months ago. Other days are an emotional rollercoaster. But no matter how bad I feel all I have to do is look around and see someone else who would love to have my challenges instead of the ones they are facing. What a powerful voice you have. Stay strong.
Debbie, thank you for reading along and telling your story. Are you in the Mpls area? I am glad to hear that they caught it so early for you. Please stay in touch and let me know how the implant swap goes. Am very curious.
M.
Actually, I live in Michigan. My aunt is in Mpls and saw your story on the news and emailed me the link. She said your story reminded her of mine, other than the obvious “when” happened to me. Will let you know more in April after surgery.
Hi Melissa. The implant swap went well, still getting acclimated to my new self. Aside from the nausea, that for me always accompanies going under, the surgery was much more tolerable. It was hard going back into “restricted” mode, but again, a much shorter duration. Putting off the finishing touches until the fall. Planning to enjoy the summer and stay away from the hospital for a few months. Sounds as if all is going well with your recovery. I have truly enjoyed reading your posts. Debbie
Can you tell me more about it? My expanders are so hard. What did you swap with, saline or silicone? How much softer are they? Do you have the binding/indentations around the edges? I do with the expanders. My ps says we can fat graft there to soften that up. Its so odd looking, and feelings actually too.
How many days were you out of commission after the swap and what are the restrictions? I figured I would give myself 3 days. I also have a race to run 5 weeks after the swap. Am I crazy? :)
M.
Not sure what I did…see reply below…..
So happy to find your site! I am scheduled for a double mastectomy on June 7 due to being BRACA2+. I am still trying to wrap my head around what I am about to do. I have never had an abnormal mammogram or any breast cysts or problems, but my mother AND her sister both had breast cancer. My mother beat the breast cancer, but died of ovarian cancer. So I took the recommendation seriously, and due to being a teacher, scheduled my surgery the first week we are out of school so that I will have the summer for recovery. I am so glad to have found your Pre and Post-surgery recommendations! I have bookmarked this site and will be reading every bit of it. Thanks so much for sharing your story for those of us just starting this journey!
Robin, so glad you found me. I have been utterly terrible at posting for the last two months. Shame on me! I am going to go and update/comment on that Pre and Post surgery recommendation list now that I have been through it and have my own opinions. :) Check it out again in the next couple of days.
And thanks for reading! Please let me know if you need anything, have questions, or want to chat.
Melissa
Thanks so much for updating the surgery recommendations! I am sharing the page with my friends that are asking what they can do for me…it explains things much better than I would myself. Went to the surgeon yesterday and debated on nipple-saving or not nipple-saving. Still debating, but leaning toward saving. Googling everything helps so much. It has been so wonderful to have your site to read, it is so honest, and really helps me know more of what to expect. I have an 8 year old, so I can really identify with caring for more than just myself. Just can’t wait to get on the other side of surgery so I can stop all of this worrying.
Yes, I think three days should be okay. From your other posts it sounds like you bounce back pretty quickly. I took a week off but anesthesia always kicks my butt. The incisions are so much smaller, and there isn’t all the muscle cutting as the first time around so getting back at it wasn’t as bad as the original sugery. Ten days after the swap my doctor took all restrictions off me.
I opted for silicone implants based on my PS recommendations. From the data she shared regarding rupture rates, rejection, etc…I was comfortable with this. I had actually asked about the gummy bears but because they’re so new they’re not something she has worked with. As far as how things “look” and feel, I think they’re still settling in. The shape is better than the temporaries were. My original symmetry has left a little shelf like look on the left side which my PS said we could adjust but my scar would be extended. I have opted to take the summer off and finish up with the cosmetics in the fall. If the shape issue is still bothering me then we will addresses it then. Still getting use to using my reconfigured chest muscles, vacuuming is still awkward for me. Most range of motion is back but have found stretching is essential. Sleeping is still somewhat uncomfortable but getting better. The strangest thing I’ve found is my new Vin Diesel talent of jumping my pecs. :)
Through all of this I have found many of the same conclusions you have. Find surgeons you trust and are comfortable with. Don’t be afraid to ask for a second opinion. Trust your gut. Ask questions until you have all the answers you need. Finally, my husband and I kept saying “if we’re not laughing, we’re crying”, keep the humor in your life.
I had three biopsies in April they have many changes no cancer yet. My gram died of ovarian cancer three relatives with breast cancer and I had skin cancer at 25. I am now 39 with two beautiful daughter’s and the breast specialist said I will have to have contrast mri every three to four months or her recomendation bilateral mastectomy with reconstruction. My mother is furious that I would even think about this, my sister thinks I am going to do it and husband says he loves me with or without them and supports me either way. This is so hard. How did you finally come to peace with your decision?
Kris, my heart goes out to you. This is a bitch to go through and to not have people support you just makes a hard decision worse. I know.
How did I make peace with my decision? I looked at my children. That was it. Sacrificing my breasts to reduce the risk of getting breast cancer by over 90% was easy. What wouldnt I give for my children? To increase the chances of increased time with them? A pair of breasts? Pah. That is nothing.
Couple that with understanding that this is MY life. My decision and that ultimately it is my responsibility to educate myself on my options and advocate for myself. I am the one that has to live, or die, with my decisions. This just made sense to me.
If you take fear out of the equation, what is the answer?
I am sad to hear your mother’s response. Very sad and a bit angry as I can’t imagine that she doesn’t see you as so much more. Perhaps she is afraid.
As someone once said to me, “Breasts are not for saving. Women are.” That resonates with me almost daily.
My advice is this: Look within yourself. Learn what you can about your options. Listen closely and follow your gut. Do not let anyone sway you or make you settle. Not doctors, not the public, not your family. You know what is best for you.
Lastly, and this is the hardest, remove the negative from your life. Surround yourself ONLY with people that support your decision even if they may not understand or chose that themselves. You have enough on your plate than to be drug down into doubt and pain by those bringing negativity. I have had to do the same thing and it was hard, but it helped me find clarity and strength to follow what I knew was right. And it was hard for me too as I traveled much of this journey without my parents.
I hope you have subscribed to my blog as I need to make a bunch of posts soon and their topics may be helpful to you.
Ok, now this is the last “lastly,” please feel free to email me @ edamama@gmail.com if you want to chat more. If you are in this area, we can meet. I will answer anything and not pressure you either way in your decision. If you aren’t we can always talk on the phone too. :)
No matter your choice, seek your answers completely and honestly. Because if you do, no matter the answer, you will be a stronger person because of it.
Talk soon!
M.
Hi I’m Heather! Please email me, I have a question about your blog! LifesABanquet1(at)gmail.com
Sept4th 2012 at the age of 33 I had my prophylactic double mastectomy after funding a large lump in my ft Brest in April it took one week for my entire Brest tissue to change both sides, long story short it runs in our family my grandmother died at 41 from BC my mother found ans had her first lumpectomy when I was 12. My results came back with the removal of a 297 gm grey unidentifiable tumor in rt breast begins with cellular change just starting, lt breast 265 gm tumor small amount of fatty tissue mixed with dense tissue surrounding grey unidentifiable tumor, I have RA, and AS, and dis degeneration I’m on enbrel Dr’s would not biopsy because they had no idea what it was on MRI it glowed bright white like cancer learned during my journey that the new BRACH 1&2 TEST is only covered by all ins companies if you already have Cancer even though it’s marketed as preventive pre screening cost to receive my results 3,376 dollars or I could have my primary Dr write a letter on which my psychological impact of leaving the growing masses, then what the impact would do to my RA from my rheumatologist, then the cost comparison from my surgical oncologist of have the mastectomy and reconstruction vs just watching then treating, all letters would go to the ins’s appeal panel. Which would take 15 weeks to decide My Rheumatologist made a personal phone call to my ins FEDERAL BCBS and wrote a leter informing them of her personal actions with attorney on my behalf, since the mastectomy hinges now solely on that BRACH results for ins coverage, 5 days to the date if seeing her and the letter & call made u was notified by my surgical oncologist that ins approved 100% coverage for the mastectomy and reconstruction and a date set! THIS IS WHAT WE NEED TO BE FIGHT FOR OUR DAUGHTERS, MOTHERS, GRANDMOTHERS, SISTERS, OURSELVES, AND EVERY WOMAN! this alone will kill us faster. The ins lady I had spoken to had informed me of all these issues once she stopped recording our conversation, and explained that 6minths ago another young woman called with the exact issue about the test she did her job followed their policy and the 29 year old young woman died from what was later discovered to be a rare aggressive form if breast cancer . She has to live with that for the rest of her life and even if it ment loosing her job she would never again not disclose how to circumvent the companies policy. She saved my life, that young lady that died saved my life, I was recently sponsored in a walk for the cure and stopped our local hospital from running a news piece about all the wonders in the BRACHS TEST by telling them “my” Journey, the camera man put his camera down and said I refuse to film this piece the hospital rep was pissed for a missed PR add for their hospital, the president of our local komen chapter was educated that day about the TEST. THE MORE WE SHARE AND TALK ABOUT ALL OUR JOURNEYS NO MATTER HOW BIG OR SMALL THE GREATER IMPACT WE WILL HAVE FOR THE FUTURE GENERATIONS TO COME! life is my journey what is yours, I have several blog sites one of my posts there is a line in there I live by now, ” in your darkest hour is your greatest inspiration”
Hi…
I am new here. I found out I have a BRCA-2 genetic mutation a few months ago. I saw the breast health doctor yesterday. With my risk of developing cancer well over 60%, we’ve elected to go ahead and do the mastectomy. Double. Prophylactic.
I’m petrified.
Thank you for writing… thank you for throwing women like me a lifeline of support.
Welcome. It’s a crazy journey and even when I hit a low, I still don’t regret my choice. Please talk to me, to us, let me know how I can help or answer questions.
I’m glad you feel less alone.
Melissa
Hello Not Supermom! I’m curious – how old are you? I’m also having the same surgery, though I tested negative for the BRCA mutations. Three of my five sisters have already had breast cancer – one died from it. A brother died from colon cancer, and I have had a squamous cell carcinoma on the top of my left breast. I’ve also had two benign tumors removed from my right breast. I’m 59 yrs old, and my sisters who had BC were diagnosed in their early 60’s. I’ve decided not to have reconstruction because of the pain and the long recovery period. I have found support from a yahoo group called flattops. Also, there is a website called breastfree.org that gives a lot of great information. A lot of women seem to have problems with their reconstruction, so I just wanted to let you know that you have the option not to reconstruct. One lady from flattops just had her implants removed, and is not having them replaced, but is going to just go without any more reconstruction. Whatever decision you choose to make, I wish you well, and hope that you have people supporting you! God bless!
Melissa
I was laying awake in bed tonight and thinking about you. I hope you are doing well. Reading everyone’s posts on here comforts me. I had a prophylactic bilateral mastectomy September 20, 2012. I was not prepared for the physical and emotional pain. The expanders are still in for another two months. They are what wakes me up at night and prevents me from falling back asleep. Although this has been one of the most difficult times in my life I know I made the right decision.
Thank you for creating this blog.
Angie
Angie, my surgery was Sept 19, 2012, I had the trans flap reconstruction and have been in so much pain that I have started to reach out and find support. I saw your date and just thought I would comment. I was not prepared for the emotional and physical pain that I have and continue to experience…. Alisa
I had a prophylactic mastectomy last Monday. So, I am on Day 6 of recovery. My surgeon used a skin and nipple sparing technique and so far, so good. There was good blood flow to the area and the nipple has showed no signs of “dying” yet. Implants were inserted during the surgery. I will get the drain tubes out on Monday. So far, my experience has been exactly as I expected – some pain, of course, but manageable. Some bruising and swelling, but fairly minimal, I would say. I have NO regrets. I am 39 years old.
I want to say thank you. Thank you for being the blog I longed for, with real pictures, real feelings and real life choices. I am strongly considering a prophylactic mastectomy. I was a little girl who watched my mom and grandma face breast cancer and an adult who again watched my mom suffer through ovarian cancer. Now that my breasts have nourished three babies, I want them gone. I don’t want to worry about them anymore. I don’t want my daughter to watch me scared and afraid. I don’t want breast cancer to control my life or my family. So thank you for these tears of reality.
All I can say is thank you. Thank you for your honesty. Thank you for being real. Thank you for saying so much of what I feel but find it difficult to express. Thank you for this blog. It has given me courage and strength and most importantly, comfort. I had my BSO a couple of weeks ago and have my mastectomy with DIEP reconstruction scheduled for May 24th. Thank you.
You are more than welcome. I am so glad that I am able to help in some way. When I first started this blog I doubted anyone would ever find it or read it.
Please stay in touch and let me know how things are going and if you want to talk. If you email me I will provide my tele. :)
Talk soon!
Melissa
Thanks! I’ve been trying to figure out how to email you…I’m just gonna chalk it up to a blonde moment!
Edamama@gmail.com :)
Yes thank you I’ve been looking for some support through this I am 21 years old I came up positive for the brca1 gene on 2/8/13 now on 5/8/13 IM scheduled for a prophylactic mastectomy… IM a little scared, my mother died from breast cancer… She had 7 kids 5 girls and 2 boys IM the oldest girl (even though I have a twin sister) so I do feel more pushed into what ive chose to do. But I have a 4year old son and I have also lived my life thinking cancers going to kill me, but this gives me more comfort going threw with it, it gives people like us a chance at life I want to want my son get married and have kids… My mother never got to she was only 33(well turning her birthday was the next day) I have to say this whole journey is scary to me, but even though it’s just beginning in sure I’ll feel better after it’s over it’s the waiting that’s killing me.
New to the site and so thankful to have found it. Has anyone else here had a trans flap reconstruction and if so, would you email me at albiv180@gmail.com it has been such a hard time that sometimes my emotions get the best of me, and would really love to have someone to chat with. Thanks all!! Alisa
Melissa,
How ironic that I came upon your site or blog today as I met with a surgeon today regarding having a prophylactic mastectomy. I do not have breast cancer but have tested positive for the gene. My mother is a 30 plus years bc survivor but has now just completed treatment for uterine cancer. I had a hysterectomy 2 years ago to take care of that issue as there was a history of ovarian cancer in my family to on my mother’s side. Anyway when I had the testing done a couple of years ago I wasn’t ready to do anything with my breasts other than the every six months screening with a mammogram and MRI, but seeing my mom get sick again and taking with my doctor I want to be proactive and live! I would love to talk to you sometime if possible and if you are willing. I live in Lakeville and work in Maple Grove if that helps. Thank you for sharing your journey and for your time!
Peggy
Peggy, I live in the Lakeville area and just finally finished my reconstruction surgery from going through preventative double mastectomy. If you want someone to talk to let me know. Unfortunately this isn’t my first rodeo with this as every female in my family has been diagnosed with breast cancer and I made the preventative choice at 24 to do this.
Hi Peggy! Will be posting more tomorrow eve but wanted to stop by quick. I am in Maple Grove daily. Lets meet for coffee!
My name is Tori and I live in the twin cities. I was 24 years old when I went through genetic testing, coming out with a positive test and made the jump to have a double mastectomy and reconstruction surgery. This was just 1 year ago as of April 9th. My grandma, aunt, and most recently my 28 year old sister was diagnosed with breast cancer all on the past 2 years. I would be very open to giving you all the information you need or want as I have been through everything from taking care of my ill sister and going through preventative as I do carry the brca1 genetic disorder.
There’s a long list of women in my family diagnosed with either breast or ovarian cancer. Some, like my grandmother, died young. Others, like my mother, survived. But, the fear of the disease has hung over me for the majority of my adult life. My sister found out in nov that she was brca1 positive. I found out in early Jan. I’ve only read this first page of ur blog but it was beautifully written and I will read the rest. I also have 2 young children, as does my sister. Thank u for sharing ur story. It’s an incredible gift to those of us that are at the beginning or r journey.
A wonderful post! I’m four weeks after mine. It’s been quite a large moment in my life… I’m often speechless trying to comprehend this experience. I have yet to get back out in the world and I have no idea what to say to all the women I know… there are whisperings/gossip/or hopefully no one cares… maybe I just have to go public with it. I’m proud of your courage. Thank you for sharing your post! Wishing you the best! :)
Aw, this was an incredibly good post. Finding the time
and actual effort to create a top notch article… but what can I say… I hesitate
a whole lot and never seem to get anything done.
You may just be the most beautiful person I have ever met. It’s a pleasure to work with you every day. You told me that you loved me about a week ago- obviously in the platonic sense. Well I love you too, damnit! More power to you and women everywhere.