Surveillance for me? Yeah, Right, Sure.

NSJ2

I feel like a dolt, but what is a "PBMx"?

Partial Bi-lateral Masectomy???

SimplyAudrey

Preventative Bilateral Mastectomy.

leaf

The abbreviations are really mindboggling - its a really steep learning curve. Please don't feel bad.

PBMx = BPMx= prophyactic bilateral mastectomy or bilateral prophylactic mastectomy.  (Or maybe its mastectomies, I don't know...)

loriio

Leaf-your DIY BMX comment made me laugh! Strawberry almost came out of my nose.

Anonymous

PBMs====prophylatic bilateral mastectomies

ED2012

Anne - Congrats on the all clear for this go round!

Penelope - thinking you deserve a whole new healthcare network!

SimplyAudre - sending you hugs and prayers for tomorrow

Loriio - very wise sentiments shared!

NSJ2 - I think the only rule is that no questions are dumb....because this is a whole new world of terminology and acronyms for those of us who are new to the game!  Don't feel bad...even as a long-time healthcare worker, I am still double-checking to make sure I am on the right track! Best wishes for your upcoming rad trts.

Tamoxifen - end of week 1...still the only SEs that I know of are EXTREME exhaustion that hits around 4p, no real appetite and...my hubby swears he thinks I was having "warm spells" this weekend when we were in a couple of stores...I just thought they were really hot...he says they weren't (and he is hot natured).  Is this a hot flash?  I didn't feel myself flush or perspire, just felt VERY overly warm to the point that I did have thoughts of ripping off my outer blouse if I couldn't get out of there soon enough!  To the relief of all - I chose to escape the store instead!

leaf

Glad I was able to provide some humor

I did have some minor 'warm' flashes when I started tamoxifen.  However, I was perimenopausal  and it was summer when I started tamoxifen, so I don't know if they were from tamoxifen or would have occurred anyway.  My 'warm flashes' toned down to nothing over the next several months.

Best wishes to all for all your screenings and treatments!

OG56

Jumping in to say that I have been followed now for 4.5 years now by a BS who specializes in LCIS at Sloan and they just completed their 15 year study of LCIS. Hopefully it will be published soon. I have Classic and pleomorphic and the studies conclusion appears to be that pleomorphic does not act differently than classic at least that is my interpretation of what she said. I will be finished with my Arimidex next May but will be followed by a Breast Oncologist and BS for my lifetime. Since I have already had an invasive bc my odds of a reoccurance dropped to 7 percent, and a PBMX would drop me to 2, so I choose not to, which I struggled with for along time.

I wish you all the best,

Linda

beacon800

ED2012 - I posed the same question regarding insurance to my breast surgeon.  I asked him how would I answer a question like, "have you ever had cancer?"  He told me that in my case the answer is NO.

So don't feel bad   I think you answered properly. 

SimplyAudrey

Goodbye OEM, hello, Aftermarket parts!

loriio

Sending prayers and good thoughts your way, Audrey.

Lori

noraLCIStoILC

Thinking you Audrey. My PBMX was 5/29/12 and 4 months later, I'm back to being me!

SimplyAudrey

Home and awake because I have slept all day.  Aside from pain and soreness, all is well! BUT........he took my dunkin Turbo away for now! 

I'll share more as I know it.  Only 2 drains, and wrapped, so tomorrow(today) will be the first time I see. 

loriio

Good to hear from you Audrey. Make sure to get lots of rest!

Keep us posted.

Lori

Anonymous

OG---I would love to see that long term Sloan study on LCIS--post a link if you find one--thanks! I am 9 years out from my LCIS diagnosis and am always looking for more info. (I do high risk surviellance and preventative meds (5 years tamoxifen, now evista)

anne 

auntiems3

Audrey,

So glad to hear you are home and doing well.  I was thinking of you all day Monday and sent up many prayers for a GREAT result and little discomfort.  Be Well!

Marie

ED2012

Anne - I will be looking out for the results on this one - but think it might be related to the study that OG mentioned.  See this link:  http://ww3.komen.org/Flashviewer/Grants_Table/FY12/pdf/221291.pdf

SimplyAudre - I am keeping you in my thoughts and prayers - wishing you a speedy recovery!  If you are taking anything for pain - don't forget to also include the all important senna tablets to help keep the lower half in regular motion!

Anonymous

thanks ED---I will be waiting patiently for it to be published!

Anne 

ArleneMarie

Anne...my heart just dropped when I read "I'll deal with invasive bc if and when I have to."  How frightening to deal with it after you are already diagnosed with invasive breast cancer.  The tables will have already been turned and you don't have the luxury of being on the offensive; rather you are now on the defensive.  My sister's tip-of-a-pin sized tumer (invasive breast cancer) has turned her life upside down.  Since 2011, she has endured chemo, a full mastectomy with its own complications thanks to having the port in place, tamoxifen side effects that permanently affected her heart and caused her to have to change drugs and now to top it off, she has to remove an ovary to reduce the estrogen production.  And here I sit, free and clear from worry since I was one of the lucky ones that was diagnosed with LCIS and acted quickly by removing the cause of the problem- PBMX with implants.  I am sure she wished she had been diagnosed with LCIS.

noraLCIStoILC

Wow, no overnight stay in the hospital?

Get lots of rest.

Continued positive thoughts that you have a speedy and complication free recovery from this step in the process! 

SimplyAudrey

Lots of rest..... unwrapped and looking strange and bruised but not to bad considering.  My nipples are warm!  WooHoo!  Now I understand about expanders in the armpits......STRANGE sensation.

It's only been 3 days and I'm ready to go grocery shopping (HAH!).  Washed my hair yesterday. Had a cup of REAL coffee. Can finally take naproxen which seems to work better than any opioid (Percocet, Lortab).

Baby steps.  I know.  I see the PS on Friday and BS on Tuesday......hopefully path will be back.  I have a feeling I'll hear from him if it does come back earlier.

I am just THRILLED to be on this side of things!

loriio

Wow Audrey! Sounds like you're doing great. I'm sending prayers your way for clean pathology.

Lori

ED2012

SimplyAudre - you are our patient hero!!!!  I am so glad to hear that you are positive and doing well - I really appreciate you sharing your progress with us and will be another one hoping for a good path report for you. 

SimplyAudrey

The ONLY thing I can complain about is the TE's look WIERD (the armpit thing) and my OnQ pump delivered more anesthetic onto my abdomen than into the surgical area. Other than that, I don't know what I'm going to do for three weeks.  We shall see.

Anonymous

Audrey-----glad to hear the surgery went well and you are home and recovering. Praying you get a good pathology report.

anne 

leaf

So pleased to hear that you are feeling so well.  Maybe you can tell the PS the OnQ pump should be used for nausea instead of surgical pain .  Crossing my fingers for a boring, benign path report.

SimplyAudrey

Saw PS today....he was SHOCKED about the OnQ...who knows what happened but only 2.5 inches of the infusion catheters were where they were supposed to be. (Do I get a credit on my bill for that one?  HAH!)

Small black spots on both nipples but they and the areolas are relatively warm.  we shall see.  He says typical for NS procedures.  I'll go with that and work on my trust level.

 I discovered that somehow at night my hands end up above my head in the recliner.  I wake up when I try to bring my arms down in INCREDIBLE pain!  BUT.....range of motion is good and I can get a t-shirt on relatively painlessly today!  PT in my sleep, who knew!

Drains still in - not too disappointed since I still have about 30 ml output from each per day.  I'll see him Monday morning, then BS Tuesday hopefully to hear NOTHING NEW from the path report. 

I'm glad I stopped looking for what to expect with the procedure and let it happen.  I'm good with where I am so far!  The boredom IS setting in early.  ~sigh~

Have a fabulous weekend!

123penelope

Glad you are home.

ED2012

SimplyAude - was thinking about you today and hoping you are still doing well.  Must admit that ever since you mentioned the small black spots on your nipples - have been a bit concerned - keeping my fingers crossed that they are pink and warm by now.

Well - I am not sure I even want to say this in print...but I found a lump in what is supposed to be my "good" breast two days ago...@ 7 o'clock under the areola.  I have spent the last 48 hours trying to convince myself that I perhaps wasn't really feeling anything - but it is rather difficult to mistake something about half the size of a pea.  My fear is that through all of the last couple of months....all the focus has really been on the right breast and not on the left.  I did call the BS today - and have an appt. for Friday at 3pm.  I am caught between feeling that I am overreacting and that I am taking the only action I possibly could/should take.  Trying not to overthink this, but have read way too many stories on this site where people have found something that the Mammos missed.  I don't have my first MRI until February and the last time my left breast was looked at was at the normal screening mammo that started this journey back in July.  The lump is not sore and best I can tell, is shaped kind of like a teardrop...it doesn't seem to move around at all when I feel it, but stays in place.  As far as my cycle - I still have four days to go to hit mid-way and I first felt it two days ago.  Don't want to seem like a nervous nelly - but it is there and I can't feel anything like it on the other breast. Guess now I have to try and take a deep breath and wait for Friday.  

SimplyAudrey

ED...BREATHE and don't over analyze!

I myself am going for mipple debridement on Tuesday.  I'll still have part of them, but they won't protrude as much.  Not such a bad thing and everything happens for a reason!

Path came back....right breast FULL of LCIS and ALH, ALH found in left.  No invasive nothing.  WOOHOO!

Plastics dude surprised me with a 100 ml fill today.  All I can say us OW, and I'm off in search of medication and a nap.  But I think I am liking actually having breasts!  Goodbye head of the class (A+) Hello average (C)!