I’m back! 11 years later and boy so much has changed!

So this is the continuation story of my previvor journey.  I decided to continue my story because so much has happened since my last Entry and I feel like I need to update to let everybody know what’s been going on for the past 10 years. The last time I spoke to you I was on surgery number three where I had gotten my expanders taken out and my allergan 410 gummy bear cohesive gel implants put in. That was in March 2012. After my honeymoon in September 2012 (more about that later) I had to go to the doctors due to severe pain in my which they did not know why, I was given antibiotics and it went away. For a few years after that I grew to love my new foobs. No real complaints, I did have one more reoccurrence of insane pain but again, it disappeared on its own, this time with out antibiotics. They were just really hard and always really cold. In the summer of June 2016 I was at a wedding and thought that I come down with some type of G.I. bug. When I went home (we were down the shore at the time) I went to bed early. In the middle of the night I woke up freezing And in so much pain I felt like I had had a mastectomy all over again. Finally in the morning when everyone was awake, I took my temperature and it was 104° I had no idea what was going on I was so scared and I didn’t want to end up in a New Jersey hospital. I called my plastic surgeon who told me to drive back to Pennsylvania thankfully that would be Brian who did that and go straight to the emergency room. After being in the emergency room I was admitted to a hospital bed and stayed there for a few days. Dr. B my surgeon, Said maybe it would be a better idea if we took these implants out and switched them with another set of implants because they couldn’t figure out what was wrong with me and they thought maybe it was the implants. I agreed to do so and in August 2016 I had my Allergan 410 implants replaced with mentor silicone gel implants.  The allergens that he removed, we found out later on to have bacteria on the lab slides! Everything was good for a little bit but then I just started not feeling like myself anymore I started getting phantom pains all the time memory fog I started developing new allergies to medication‘s I’ve never had an allergy to a medication in my life besides one and now I had 3 more introduced to me. Constant ringing in my ears, inflammation, swelling, I gained 15 pds in a year! Chronic fatigue, headaches, sinusitis, cognitive dysfunctions, started seeing a chiropractor for back and neck pain, started seeing a GI doctor for digestive issues, had my first colonoscopy at 36, Multiple UTIs, the list goes on and on.went as far to get a medical marijuana card in hopes of some relief. Yeah, that didn’t work… just made me feel anxious, paranoid, I definitely couldn’t keep this up and was unable to live and function in a normal life. It was then when an article was written that they were recalling certain types of breast implants!

 In July 2019, Allergan recalled its Biocell textured breast implants after the FDA had linked them to a rare cancer called breast implant-associated anaplastic large cell lymphoma, or BIA-ALCL. Most of Allergan’s recalled textured breast implants were sold under the Natrelle brand. The FDA advises women with BIA-ALCL to have their implants removed. This made me start to do more research. These were the implants that I had removed in 2016! I couldn’t believe it! Then I read that since most of my capsules were removed but not all I started thinking more and more. I did more research, I read not only were my old implants recalled but also my expanders that I had prior to the implants! I then started leaning towards having my implants taken out for good! I went to see my original surgeon, he thought it would be a good idea to remove the mentor implants and replace them yet again with another implant type (smooth not textured) there were articles now stating that textured implants could be causing problems now too! I had textured implants. I mean, when you really think about it your body doesn’t think that foreign objects should be in there so what do they do? They start to attack it. I felt like my body was just attacking me from the inside I had to get these out. Maybe I wasn’t explaining myself right to my original surgeon ( Don’t get me wrong, I loved Dr. B!) but I felt like my needs were just not being met I decided to look for a second opinion. I found a doctor about 15 mins away from me at fox chase cancer center. 

Dr. Sameer Patel, this man performs a type of surgery that many other doctors do not. Well the others, do like 40 a year, where this surgeon does like 4 a week! It was Pretty Covid at the time so I was listening to a lot of podcasts. I found Tthe Breast Podcast Ever  hosted by

Dr. Tiwari and Dr. Kocak Around the same time I stumbled upon a Facebook group called Breast Implant Illness and Healing by Nicole I started typing in my symptoms and more and more things came up with people who were just like me. One person in particular was an admin of the group and at the same time listing to this podcast she was actually a guest speaker! I thought for sure this was definitely a sign that I was going in the right direction.  And guess who her surgeon was!?! Patel! Oh it gets better as I am listening to the 2 Doctors podcast he also was a guest speaker on a different episode! I ended up canceling my august procedure with Dr. B, and began my search for a surgeon that would be willing to do the DIEP FLAP procedure. I made an appointment with Patel, but it wasn’t for a few months. I did go for another opinion in the meantime but all they recommended again, was to swap out old implants for new implants. I was so sick of hearing this over and over. I wanted my old life back.  I wanted to not start falling asleep before my childrens bedtimes, I wanted to not be in pain. I just wanted to be happy again. I met with Patel finally and we scheduled my Explant with DIEP FLAP procedure for September 2020! 

Below is a list I printed out of common symptoms of breast implant illness and all the things at that time that I also related too. 

2 posts for the PRice of ONE!

So I thought I would double post tonight since I am still up. I thought it would be interesting to post the  after transition photos  of the entire process. So here you go. 

5 Days Post Op 

3.5 Weeks Post op

4 Weeks Post op  

5 1/2 weeks post op and 1 week after 2nd surgery

Right Breast 8 Weeks Post Op
Left Breast 3 Weeks Post Op

Right Breast 9 Weeks Post Op
Left Breast 5 Weeks Post Op

Right Breast 11 Weeks Post Op
Left Breast 7 Weeks Post Op

Right Breast 15 Weeks Post Op
Left Breast 11 Weeks Post Op

Night Before Exchange Surgery

1 Day Post op After Exchange Surgery 3/18/11

3 Weeks Post Exchange

10 Weeks Post Exchange

CLose to 8 months post exchange and 1 year anniversary since  mastectomy

1 year ago today....

Yup that's right! One year ago today I underwent my mastectomy, and this time last year i was in pretty much the worst pain in my life. I still would not change a thing I did. I know I made the right decision and that is all that matters. So much has happened since my last blog post which was the end of May. July 9th Brian the love of my life proposed to me It was everything I wanted!!! A surprise horse drawn buggy in Central Park New York, rose petals, down on one knee the whole 9 yards! Of course I said YES! We will be getting married August 25th 2012!! I am so happy to grow old with him. He is an amazing man who has been my rock and sanity for the last 3 years. I love ya babe!

So not only wedding planing like crazy but also we just finished walking 60 miles last month for the Susan G Komen 3 Day for the cure in Philadelphia. A few things I have to bring up from the 3 day that really touched me. I met a few Previvors and got to hear their stories. One lady I met her name was Lori, we even did a show and tell in her tent lol but what was even cooler was she actually works for Myriad Genetics, and also Bright Pink! We talked for  good half hour about nipples and reconstruction which was pretty awesome to know another previvor on the walk.

I wore my Previvor shirt proud! One the 2nd night of the walk i was out side my tent making my shirt for closing ceremony and a lady named Sheryl across from me was curious what my shirt was about. I explained to her how I preventivly had a mastectomy but didn't have breast cancer, that my mother had passed away from breast cancer that she and I both carried the same BRCA1 gene. She must of went to bed that night and really thought about what I said because the next morning she told me that she feels there was a reason we had tented across from one another. After listening to everything I had to share, she had decided it was her time to get tested as well, due to a strong family history. Here is a portion of an email from her a few days after the walk,

 I am so grateful to you for sharing your story with us. I had thought about the testing a few years ago, but I think I was too afraid to hear the results so I just put it out of my mind. Talking with you gave me a different perspective. Thank you....  I have always believed that we meet people for different reasons.  I truly believe that my mom had something to do with us tenting across from one another. I definitely got her stubborn streak and I think she knew that hearing your story would make me listen.

I think this is so beautiful that I could have an impact on someone like that, On November 21st Sheryl will undergo genetic testing! (*Thinking of you*) And that is how I feel too with the BLogs and videos that I do. I love the fact that people are learning things from my experience and I love the fact that I am helping others. I started this whole journey over a year ago searching for help on the Internet, pictures, videos anything. I barely found anything, so I decided to do my own to help me cope and help others at the same time who where in the same boat. I hope I continue to help others and if you need any advise please ask away.

Another update so after my 4th surgery of the the year my cystectomy in May I felt terrible I was constantly in pain on my left side. They couldn't figure out why i kept feeling all these pains and finally as a last resort they decided to remove my IUD (intrauterine device) ie: my birth control that I have had for the last 8 years. Turns out my IUD was what was causing my 3 months of abdominal pain.  If you can imagine my IUD looking at it is normally placed in the uterus and its a T shape. well my GYN Oncologist that did my cystectomy must of moved it around because once it was surgically removed my GYN said my T was positioned like this |--- no wander I was in so much pain!

So I guess I should tell you about how I feel about my boobs a year later, well.... like I had said before I wish I would of went with a saline or silicone implant...The cohesive gel implants that I have are so hard.   I have to get all new winter tops this year because my boobs don't fit into my sweaters anymore :( They are not swishy like they used to be , they still feel like 2 foreign objects n my chest. I think they look amazing don't get me wrong but it just feels weird, it's hard to explain I guess. Regardless if I like my chest or not I still have reduced my risk from breast cancer to 10% rather than the 87%  life time risk I did have due to the BRCA1 gene and prior to surgery. My boobs are always frozen since there is no blood flow going on. I can't feel the cold unless I touch them though so it's not a bothersome thing. last but not least I still have pains on both sides every once in a while. I did talk to my PS about it and he said it is normal. Kinda like when your "tennis elbow" or your "bad knee" acts up with the weather yeah you could say the same thing about my boobs.

So Last thing to get done is nipples. Hmmmm I am still up in the air about nipples. I am 99% percent sure that I don't really want the surgery. I am leaning towards 3D tattoos. So far the only place I am interested in going to is Little Vinnies in Maryland. He is pretty famous in the BRCA and Mastectomy worlds and is known for his work in 3D tattooing and also 3D nipple piercing. Here is his site http://vinniemyers.com/section/105672_Nipple_Areola_Tattooing.html  He charges $350 for both nipples to be done which I think is a pretty decent price. ( I am a tattoo virgin) lol  ok enough with the updating now. Let me wake up Brian so he  can take my new pictures to update everyone. BRB.....ok so here they are 1 year Anniversary of Mastectomy!!!

Front Obviously...you can tell I never lost the 10 pds I gained from surgery

Right Side (the one that didn't have any problems)

Left Side (the Trouble Maker)

Left Scar

Right Scar

ONE YEAR MASTECIVERSARY!

New Video

Well actually I made this the same day I posted my last blog and I forgot to add it here :)

10 weeks post op

 Hey all just updating since my last post. I had my Laparoscopic surgery on Wednesday and luckily no ovaries were harmed in the removal of my cyst. They got the whole thing out and biopsied it right on the spot and when I awoke from surgery I heard the most beautiful word ever "BENIGN"  So that closes another BRCA chapter for now. I am not sure if I heard this correctly or not but I think he may have taken a piece of ovary while he was in there and sent it off to pathology and was to get results today, Brian said he didn't say anything to him so maybe I was just dreaming, Sorry my updates are so far and few in between, Life has been hectic. We have been working on the house non stop and my computer has also been on the fritz since we moved in here. I did however take my 10 week post op pictures today so I can share them with you so here they are...

So happy on how they look in a bathing suit!!!

Took these pics on my own ( 10 weeks post exchange)

Right Breast (you can also see scar from drain site)

Left Breast (again scar from drain site)

Right breast I just started putting cocoa butter on this week

Left breast

Both my arms up and you can see my band aids from Wednesday's surgery too

Here we go again...

This about sums up how I feel

 I found out Thursday I need to have more surgery this time it's the downstairs part and not the upstairs. i had an abnormal u/s back in January that I was told to retest in 3 months. Well that one turned up even more abnormal. I had the u/s on the 27th of April and the next day i personally had results in my hand. How you ask? well I tend to get very nervous having to wait for results like a normal person so since I work for a doctor, I have results sent to his office as well.( hence why I didn't go the surveillance rout for the BOOBS) They came the very next morning and so I starting googling what a "septated cyst" was. Once googling started I found scary words like BIOPSY, CANCER and REMOVAL  and started to freak out. I had to keep my cool though and didn't call the GYN since they prob had not even read the results at this point not even being 24 hours after the test....I sucked it up all weekend long and come Monday morning I was on the phone leaving a message for results. Monday passed, Tuesday came and went and then it was Wednesday....ummm why have I not heard anything yet????? What the hell! I called the office again, this time I pulled the " I am very anxious card" Working in the medical field when a patient tells me that I will personally try to speed up the process of that by messaging the Doctor that the Pt has now called 2x's And is STILL  waiting for a call. Well finally Wednesday night one of my GYN's colleges called me and said she had heard I was "very anxious about my results" And that Dr. Murphy would not be in til Thursday so she was calling to talk about the results with me. She told me she was not that worried due to the fact that it was small and that most cysts are usually benign and that she would just have me retest in 2-3 months. I said that is all well in fine but what about the fact that I have the BRCA1 gene? Doesn't that put me more at risk than a normal non mutant person? Shouldn't I just get it removed to be safe? It's been there 3 months now? Could it be cancerous???????   She said that Dr. Murphy would have to go and review the films more in depth  before answering those questions and that he could do that and call me back tomorrow after he comes back to the office.     My main issue was she could not tell me it wasn't a risk that it could be cancer...Freakout mode is about a 6 at this point. I thanked her for her time and gave her 2 phone numbers to call for Thursday and Friday and hung up the phone....the waiting game continues......Thursday I make sure I have my phone attached to me all day long, Thursday comes and goes, Friday comes and goes.....wtf!!!! Are you kidding me still no Dr. Murphy calling me to tell me everything is going to be alright. Another weekend with out real results and an explanation was on the horizon, And that's exactly what happened. Freak out mode 8.5, yeaaaah. Monday again, I am back on the phone. This time I asked the receptionist what Dr. Murphys sched was for the week and I was told he would be at a conference all week long. 


OK now my freak out mode is at a 10 they had a nurse get on the phone who told me not to worry and just to retest in 2-3 months, I again said to her the same questions I asked before and STILL cold not get an answer. Couple hours later another Partner calls me from the office who states he reviewed my u/s and agreed with the other doctor that the u/s should be repeated in 2-3 months and at that point I gave in and gave up. They were beating around the bush and I was sick of it. 2-3 months repeat u/s it is. My co workers didn't think that sounded right and told me to talk to one of OUR doctors (I work for a urologist) I pulled my boss aside who is the head urologist and just an all around awesome guy who I think the world of and said "look I don't normally bother you guys with this type of stuff but I am having a hard time accepting the fact to repeat this u/s and do nothing else. He told me I should make an appt with an oncologist for reassurance and not sit on this. I didn't listen ....I thought it was a little too way extreme. The next day he asked me if I had made an appt I said no and why I didn't' he told me he would call the Dr. himself and set up the appt for me. I said I will tell you what, If you call him and you ask him if it is necessary that I see him and he says yes then I will go a head and make the appointment. Well turns out this all happened Wednesday and The following morning at 9:40 am I was sitting at GYN Oncology being registered as a new patient. Long story short I am set up for a laprascopic exploration surgery on May 25th.  Dr. Shahin who is the oncologist said that he that it was better safe than sorry to sit on this. He needs to go into this acting like it is cancer he will try to excise the cyst but if he can not get the whole thing than he may have to remove the right ovary and fallopian tube. Luckily I will still be able to have child with one ovary and fallopian tube. He said he will do a wash to see if there is any cancer cells floating around He is cautious too due to the u/s  showed an increased amount of blood vessels on the ovary, and if there is anything suspicious he will not take the uterus and cervix after a talk in the office ( honestly it's prob nothing) but he does have to take all these precautions due to the BRCA1 gene. I should get pathology results back in 48 hours so I wont have to go the weekend with out them. I wont be able to go back to work til that following Tuesday, so again more time off which sucks but I still have some vacation left so at least I will get paid. Being BRCA positive I have opened a brand new door to all these things that "could be" I have to be prepared for anything , but again we are hoping that it is nothing but a benign cyst. The upstairs potion of me is doing good and only complaint is my boobs still aren't super soft but I'll get over it. This update has been long enough so I will leave you with that. I am due to see my breast surgeon for a 6 month check up on Tuesday and also meeting with the surgical resident and signing consents that day as well And set up an MRI too (busy freaking day). I did get some blood work done yesterday, including a CA125 .Will keep you updated as things happen. I do want to give some hugs out to my closest BRCA girls that are having a hard time with their surgeries right now. So hugs to {{{{{MICHELLE, STAR and SYLVIA}}}}}}} you ladies are all in my thoughts and hope you ll have a speedy recovery soon. 

I am still here!

I have been following everyone else's blog but I just have not had time to write in my own! Time has flown by and when I look to my right my little counter thingy tells me that today marks 5 months exactly since my PBM. I am considered in the "all done club" for the most part...I will prob be considering to go with nips or not at a later date. So I am 25 days post op which is about 3.5 weeks out since my exchange. Boobs do not hurt at all except every once in a while i do get a little slight twinge from the left side. To be completely honest I am just only satisfied with my breast at this point. You;ll notice they are more flat at the top which is normal for the type of implants i have. I am ok with it but I thought they would have a slight bit more rounder effect to them. Also my breast are still some what hard which should hopefully change due to the fact that these implants are supposed to feel the most like a natural breast. I do not have another appt until May 3rd to see my PS. I did mention the flatness at my last visit but he states the only thing that would correct that is surgery....no thanks.I also got a copy of my operative report, I now know for sure that my final fill numbers were 550 cc's in my left breast and 450 cc's in my right. Both of my mastectomy scars are also approximately 8cm across and I think I may be repeating myself but my new implants are 520grams in other words my PS made me a C-Cup.  Besides talking about my boobs my personal life has also been hectic. Brian and I just recently made settlement on a house March 30th and we have been fixing it up every weekend and any other chance we get. We have to be out of our apartment by April 24th and we still have a ton more to go to fix up the new house....a little more than what we expected SURPRISE! Good thing Brian's family owns a window business and knows many different types of handy people IE: electricians, carpenters etc or else we would be shit out of luck. I have been having a hard time actually accepting the fact i don't have the strength I once had and  can't help with things normally I would be able to do no problem. I don't know how many times I have told Brian I feel useless, I mean sometimes it's a ordeal just trying to pull the trash bag out of the trash can. I am getting better though each day and I surprised myself tonight by cleaning up all the dry wall and boards from the gutted out basement all by myself. Yay! Another thing I am having a hard time with is my weight. I have always been pretty skinny and most people who know me will tell you that I could afford to gain a little weight, but in all honesty i am pretty upset about it. I weighed myself the other day and i was 130pds! that means I gained 15 pds since the surgery which for me I have not gained weight like this since I was pregnant with Liam. I have always been the person that could eat what ever and wake up with a flat stomach, all this not moving as much since the surgery has definitely taken a toll on my body. I never really exercised before unless you count walking when i train for my 3 day breast cancer event but really that's it. I think now I really have to step it up to get back into shape. I have always had some unhealthy weight issues (i know this) so even 15 pds is killing me. I can feel that my pants are tighter and I feel gross it has even effected being intimate with Brian. Hope to soon get over this hump and start to get back to normal again soon. The pics below I took last Friday when I was exactly 3 weeks post op.

Front view 3 Weeks Post Exchange

Left Breast

Another View Breast

Right Breast  with Sweet Bruise

Right Breast Again

Left Scar (Sorry they are blurry)

Right Scar (Sorry they are blurry)

Video 14 - 4 days post op

24 Hours down now time for the Unveiling

So yesterdays surgery went extremely well. I even tolerated the car ride home with all the bumps and pot holes. A few hours after I got home i started to feel like crap. Pain set in and even some nausea. I took a Zofran and that did the trick. I also took some Oxycontin and Dilaudid and was in and out of sleep for the rest of the night. Woke up this morning feeling much better. Slight pain but I have been up for about 4 hours and still haven't taken anything besides two tylenol due to the headache I have. I am sure later on today I will end up popping a pill but for now I am OK :) My only complaint as of right now is the constant itching I have been doing due o the local Lidocaine pump they sent me home with. I still remember after my mastectomy having the same problem with the intense itching. I had not gotten to see my Foobs till an hour ago because they had to stay covered for the first 24 hours. I have to say I think they look amazing!!!!! I know they are swollen right now but I am so happy with what they look at after 24 hours. They are not really even bruised! Of course you know me so Pictures are to follow :) As of right now I compiled a little list of things I can and can not do, it's small but at least it may help a little
things I can do on my own
brush teeth
walk upstairs
go to bathroom
survive a car ride
put up hair into bun
get on/off couch
empty drains
change dressings
lift arms about 120 degrees

things I can not do yet
lift anything >5pds
Have a BM
Sleep flat
Sleep in a bed
Drive

sure I will think of more later on... ok with out further a do MY PICTURES!

Lidocaine Pump and Drains

Last expander picture Prior to Exchange

1 DAy Post Op

After Exchange with Allergan 410 Implants

Left Breast 1 day Post op

Right Breast 1 day post op

Diagonal View of Right Side

Diagonal View of Left side

Thank You Dr. Buinewicz! 

Best Surgeon Ever!