Surveillance for me? Yeah, Right, Sure.
45 years old and diagnosed with LCIS 6/4 after excision of a myofibroblastoma from my right breast (anyome else have one of those found?)
Playing the insurance game and saw a med. oncologist this week (quick!) who found a NEW lump under my left nipple (really never would have found it myself - I don't do BSE's laying down, but now I HIGHLY suggest it!) She verified the "very dense breast tissue" as stated by radiologist. No kids, early period (11), and high risk for blood clots (had it happen twice in my calf on 2 different OC's) so no tamoxifen for me - and I don't frankly feel like experiencing early menopause.
Off to MRI I go in 2 weeks, and core biopsy if needed, but no more excisions. Headed for door number three of the guidelines (PBMX with immediate reconstriction if possible depending on findings of biopsy).
After the LCIS diagnosis, my husband and I had a long talk. One of the sweetest and most profound things he said was "God forbid 10 years from now we would think or say, or worse, if you were gone, I'd say to myself "Audrey should have.....".
I have alot of living to do. I've been blessed that they found LCIS.....because now I can actively DO something to reduce my risk from double digits to single. My body, my choice, my LIFE!
Comments
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You go, girl! If this has to happen to you - and I'm sorry it does - then you do what you need to do. Diagnosis and treatment is hard - everyone expects that - but moving forward afterwards with a clear- and easy mind is, surprisingly, hard too. You must do what you need to do to ensure that - when this is behind you - you can face the future with more confidence.
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Thanks Serena! When the second lump in the opposite breast was discovered, any and every doubt went away. I've got planes to jump out of, kite boarding lessons to take, mission trips planned...... LIFE is waiting.
OH, and a little 10 year anniversary vacation to take where very few know my name nor can reach me.
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SimplyAudrey: you go girl!
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get yourself the best docs you can and then. do what they tell you to
dealing with what may be a reoccurance now after 4 years but did everything I could 4 years ago and no active surveilence for me, active treatment is the way!
good luck
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In my opinion, there is no such thing as "active survellience" for dense breasts. We don't yet have screening methods for dense breasts that are good enough to trust your life with. That's why mine are coming off on 8/1.
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I am in same boat. LCIS after 11 biopsies in 6 years was enough for me. PBMX with TE's on 8/14. I also feel "lucky" to be given a heads up. Best of luck to all!!!
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Have to share the "great" news! Ultrasound done yesterday - we skipped the mammo completely. New lump nothing more than a large simple cyst! (Sad when "simple cyst" is something that makes you jump for joy). When I saw the "black hole" on the ultrasound I thanked God out loud.
MRI still to go. One surgeon interviewed. Plastics consult/interview next Monday. Possible 2nd opinions in a town 90 minutes away........ game plan is coming together. I know there is no rush with this, but stagnant is not a word that dscribes me at all.
Best of luck to all!!! And thanks to all who read this for "listening"!
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@ shabby. I feel lucky to have found this support group as I begin my journey to PBMX next Summer. 4 biopsies in 5 years, all yielded the same LCIS results in both breasts. Hypervigilance to me spells HIGH anxiety. I am looking forward to my PS consult in Sept and negotiating the muddy waters of insurance coverage for the procedure. My best to you in August for a super outcome!
@SimplyAudrey. I agree, 10 years down the road.....and hypervigilance for the rest of my life (approx 30 years?) is just too scary. Though I will miss the puppies for the role they contribute toward a healthy sex life, my husband and I agree that a healthy life plays a much larger role.
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Sooo.....
Tomorrow is a day off of work but a "work in progress" day for me. Last visit with my original surgeon (post-op), where I plan to let him know I cannot ask him to be a part of something he isn't 100% on board with (he feels I should go the surveillance route last we spoke).
Then off to my first PS interview. I refuse to call it a consult - he's got to prove to me he's the guy. THEN....MRI in the afternoon.
Oh, did I mention we're in the middle of a remodel? Door stoor to visit and AC folks to plan with somewhere in all that mess above.
Everyone make it a blessed and great week!
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Audrey,
Good luck with all the dr. appointments. It's so important to find a team that you trust and that will work not only with you but with each other. I had my PBMX for LCIS on June 26th. I found out on July 5th that I had a micro invasion of ILC as well as LCIS. Tomorrow I meet with the MO but it's highly likely the are was so small, I won't have to do any other treatment.
Also, good luck with the remodel. That is always stressful but on top of what you're going through, I can't even imagine.
Lori -
I have lost all doubt that coincidences exist.
I saw my first surgeon who apologized to me for his attitude and behavior the last time I saw him. He's on board with me - and understands it's my choice and if I would like him to be part of my surgical team he would be more than willing. Hmmmmm.
THEN - I run into PS #2 in the hallway of the hospital....my appointment will be moved up. PS #! spent plenty of time with me, was amazed how much I knew about what to expect (THANKS TO YOU ALL!), and gave me his cell # if I have any questions or concerns.
MRI went swimmingly - for anyone who hasn't had one the table is VERY similar to laying on a massage table on your stomach (but your breasts are placed through holes in the bottom of it!) - not uncomfortable at all. No issues with claustrobphobia - if you've ever been in a tanning bed an MRI is cakewalk. Results sometime tomorrow - no worries for me because the plan is ahead of me regardless.
New AC next week and the door stoor was simply sensory overload. I'll look at the brochures when I can see straight!
Thanks again to you all. This has to be the best site I have come across EVAH!
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If it's going to go wrong......I'm in there somewhere.
MRI machine went hinky and the images pre and post contrast can't be correlated.
Have to be rescanned once it's fixed. Not a big deal in the scheme of things I suppose.
~sigh~
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Sorry Audrey! Keep the positive attitude, and hopefully the next MRI will capture all the info it needs to the first (well, second) time!
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Is there any such thing as having a consultation too soon in the process of PBMX? I called a second PS this week to schedule an appointment and the receptionist gave me such a hard time. First of all, the one person in the group who I wanted to see isn't doing recon any more.....okay so give me the other guy.....and she says to me. Why don't you wait and call us back in February to schedule an appointment?
I don't know why they found it so strange that I want to begin my research into PBMX as early as possible. I plan on getting everything in order and scheduling my surgery for the second week in May 2013. I am an adjunct professor at 2 different colleges. Since I am considered part time at both, I have no benefits. I pay my own medical ins. and I want to get my ducks lined up without adding more stress to my life in a few short months before the surgery. Also, i can't afford to give up my classes to have the surgery done sooner. Both colleges would replace me with someone new and more than likely put me out of a job. Hence the May date so I can use the summer to recover.
Am I being over-sensitive?
Also, are there any discussion boards for DH? Just wondering if there are any other men out there with questions and concerns. I think mine is looking for a forum for partners.
Thanks!
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Audrey: I am happy you KNOW what you need to do! Thats a blessing. I also was diagnosed with LCIS then ILC. I had already made the decision to remove both with the LCIS diagnosis. Like you, I felt there was too much ahead of me to waste time and was thankful to find out before I HAD to do it (then HAVE to do chemo, etc.). I removed both breasts in 2009 with immediate reconstruction. I did have problems with the implants (infection?) and they were removed which was very hard. I also had problems the next try but finally with a MIRACLE I healed and was able to get DONE. It did take me about three years start to finish. It doesn't feel the same as the real things to have implants, just to let you know, but I am totally happy not to have to wear a bra!! Something good should come out of all of this! My best to you as you go forward. I am sure your "process" will be shorter than mine, just wanted to be honest and let you know you can do this and that I am glad I did what I decided to do. Best wishes. Will be praying for you and all of us.
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Auntie r you should know there is a caretaker forum for your DH.
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Second MRI done today.....my fave radiologist is back so I should have results in a few days. He said he wants to be meticulous on the scan - if there is pathology I'm going to delay reconstruction (if I need treatment).
With my mindset nowk, I'm good with the path I am on. It's amazing. I don't know when the empowerment and resolve button was pushed, but I like it!
Now I just wish my sleep habits would return to normal!
Auntie...I work in healthcare so maybe I'm at an advantage. Docs are pretty much willing to see me right away. Front office staff can be less than helpful. BE PERSISTANT! If you know the path you need to take for youself it's never too early to "interview" your potential docs. I really believe you need to be 100% comfortable with them. If you aren't there's probably someone else out there who you will be comfortable with. WE make the Volvo payments, or pay the college tuition - we are the patients and the consumers....... we should not have to put up with front office scheduling BS!
Happy Monday Night all and THANKS!
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Second MRI scan revealed an "enhanced" area near the excision site (5/25) that is suspicious. Granted, MRIs of breasts may show "false positives".....but it looks like another needle biopsy (MR guided) is in my near future. Funny, I'm fine with it. Just NO MORE slicing chunks out like I'm a cheese wedge.
I know a PBMX is in the future, SO....this will just tell me delayed vs immediate reconstruction, and I still have PS interview #2 to go in August.#1 didn't offer much choice but TE's and round inplants. My upper body has minimal fat....I REALLY don't want to look like I have 2 grapefruit on my chest..... ~sigh~..... and when I asked about fat transfer he told me I was getting WAY ahead of myself. Granted, but all I wanted to know was if he was capable of doing it or not!
I really don't know where the sense of calm over all of this came from, but I thank my God for it.
To all who read this, MAKE IT a great day!
Update 7/27: Biopsy is set for Thursday 8/2. I can't complain about my wait times!
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You are dealing with a lot right now but if you are thinking about reconstruction try to look at a copy of the latest edition of Kathy Steligo's "Breast Reconstruction Guidebook." I think a new edition is coming out soon. The best I have seen on the topic. Another source of information is Dr. Marga Massey's web site (I am not a patient of hers - I think this is just a good site for info.) If you are interested in fat transfers and don't have enough upper body fat GAP surgery may be an option (but you will need to go to a microvascular ps who specializes in this).
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Thanks besa!
MRI biopsy DONE and just waiting on the path. According to my fave interventional radiologist (he's like family now) the tissue looked good, but with me, he would not be surprised if they find more LCIS or ADH which would absolutely affirm my decision for PBMX...... it looks like surgery will be scheduled for October 1st! And.......we're going to do it as day surgery! WooHoo!
PS#2 is THE ONE. Offered many options and had great bedside manner. Explained things thoroughly to me, SHOWED me examples of TE's and the different implant options. He is especially careful regarding avoiding risk of infection. He was great. His Front Office staff....well, I'm going to suggest a seminar on Customer Service Skills.
Coordination of an "on insurance plan" doc and an "out of pocket" doc is an exercise in sociology. 
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Thanks Audrey for the words of support and encouragement. I used to be in jealthcare myself and I was married to a radiologist for 15 years. There is some truth in the matter of those in the business....but the first PS seemed happy to accommodate my wish to persue my search for options with no hesitation.
On another note, I am wishing a great outcome for you. I will definitely have you in my thoughts on Oct 1.....it's the day I turn 55....and a GOOD LUCK DAY all around!
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Auntiems.....a GREAT day it will be!
I did get my pathology report back, and the enhancement on MRI WAS more of the same---- LCIS, adenosis, hyperplasia....but NO invasive anything. Looks like Oct 1 is a go, and now that the plan is coming together, I am less anxious and more excited to get this behind me!
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As well you should Audrey. Everything sounds like the stars are aligned and your journey through this sometimes lonely path will find you on the other side with a whole boatload of people you never expected to meet.
Get excited, get real, whatever it takes to get through. We'll be there to meet you on the other side,,,,waiting to see your before and after pics(if you are willing to show them, Your choice!
Marie
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Marie....
I have Pre-excision pics that I took in case that was the end of it and I could have surgery to "re-create anatomical symmetry". Before my LCIS was discovered. I'll have to take pre-pics before October 1, and if I'm brave, pics along the way to my "noobs"
.I found for me it has been good to be open to folks about my choice. For others, keeping it close and sharing with few may work. Everybody's different.
The best laugh is the offered suggestions of what I should ask for as an "end result" size wise. Men and women have completely different recommendations. Go figure!
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Audrey, I love your attitude. I find myself sharing also. Just this week I asked my hairdresser to prep me for Pink highlights for breast cancer awareness month. I found myself sharing my plan for a PBMX next year. She said she would definitely be a "supporter" for me.
That kind of love makes us so much stronger! Oct 1 is just around the corner. I'll be wearing my pink hair for you!
And thanks for reminding me to take my before pics. I am working on losing some weight and getting in shape for the surgery and I have already lost some "tone" in the girls. I want my implants to be nice enough to fill out a sweater but not overwhelming in a bathing suit. DH likes them just the way they are so we will aim for "close to perfect".
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Audrey and Auntie, I rarely get on here anymore but for some reason I did this morning. I am so glad you two are so proactive in combating LCIS....and I love both of your attitudes! I promise you that, because of your outlook, this is going to go so much faster that you will think it is. Getting in shape is one of the best things you can do to prepare since there will be some down time afterwards where you will have limited access to exercise. Good luck in your journey
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T-30. And Counting.
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It came in the mail today.
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I need that shirt! I went to the high school football game on Friday and I noticed people (who know about my BMX) looking at my chest. The high school is "under construction" as well and the school shirt has that logo on the back. I definitely need it on the front! Thanks for the great idea.
Lori -
I have friends with great warped senses of humor. That shirt was an unexpected surprise. I love surprises like that.
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