Dense Breasts/Anxiety Returns

cleomoon
cleomoon Member Posts: 443
edited June 2014 in LCIS (Lobular Carcinoma In Situ)
My MRI and Mammo were both read as no suspicions of cancer this month. At first I celebrated, but now I am back wondering whether to have a prophylactic. I looked at my Mammo films and like my MRI my breasts are a snowstorm of white. I am only 44 and the density is not likely to decrease anytime soon. Of course my thoughts go to the worse..."it's lurking in there and the tests are blinded by the amount of snow." It's 50  50 in my mind whether I will get cancer in my lifetime. My left breast hurts almost all the time now cause of the fibrocystic disease and it makes it hard to not think about my breasts. Maybe I will flip a coin and guess whether it is heads or tails and see how many times I guess right to see how the 50 50 thing turns out. My BS who I adore pushed the prophy option again today. I guess I will just have to keep struggling through this process...
Thank heavens for you all.
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  • leaf
    leaf Member Posts: 8,188
    edited October 2009

    My heart goes out to you, cleomoon.  It is so complicated to make this decision.

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited October 2009

    Cleomoon - I am so sorry you are dealing w/ all this. Feel free to PM me if you want to just think it through. I can tell you that a PBM is not as awful as we all think it will be. But it is a very tough and personal decision. Hugs. - Jean

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  • macksix6
    macksix6 Member Posts: 201
    edited October 2009

    Cleomoon I am so sorry that you are going through this. It is a very difficult personal decision. For me I am 3 weeks out from bilateral stacked diep/lumbar reconstruction (left breast prophylactic) Both of my breasts were very dense and lite up like Xmas trees on mamo's. I wanted to take control of my health and if I had to have a mastectomy on my right breast I was not going to go through this again. I am 55 yrs old and did not want to have to deal with this again in 10yrs. I am done with it and moving on with my life. I am very happy with my results. I have soft warm breasts that look and feel like the real deal, and a tummy of a 16yr old.

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  • DRT
    DRT Member Posts: 25
    edited October 2009

    Hi Cleomoon,

    My hx is very similar to yours (see LCIS forum, close monitoring post from me for details) I am 3 weeks post PBM and I must say, the relief is already enormous.  No further MRIs, biopsies, lumps, calcifications, etc. I was very lucky to have immediate reconstruction with implants, so I really lucked out in the TE route. But even so, I was totally prepared to go that way if my PS deemed it necessary. I will be 50 in the spring and cannot imagine dealing with all these tests and uncertainty forever. For me, PBM was the best decision. Good luck, go with your heart and get informed. Good luck, stay well.

    Denise

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited October 2009

    Anne - The one thing that my oncoogist told me that finally settled it in my mind was - for me it was not a matter of IF I was going to get bc, it was WHEN. He felt quite certain that I would be dealing w/ a mastectomy in the future. My bs didn't put it quite the same way, he said that I would be dealing w/ repetitive bx over the years. I had already had three. So, it is not always a drastic decision to have a PBM even w/o an actual dx of bc.

    I was in the hospital for three nights, but most of my surgeon/PS patients only stay 1 or 2 nights. I have a bleeding disorder that required extended stay. The pain is well controlled w/ the On-Que and other pain meds. And my reconstruction was not a big deal. Actually, it gave me something to focus on while I was recovering. I was able to start walking again fairly soon after surgery, and I was back up to a slow 3 miles within a few weeks.

    Best wishes. - Jean

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  • DRT
    DRT Member Posts: 25
    edited October 2009

    Good Morning,

    I was very lucky, one night in the hospital, home on oral pain meds only (didn't need to take many at all) I also lucked out with one step implants that did not require alloderm. So I came home with 550 cc silicone implants and won't need TE. (I think my years of tennis in the past helped pump up my pecs so they were able to safely handle such a sizable implant) I am having stretchy aching feelings, but nothing a little ibuprofen can't handle. Sutures came out on Friday and wounds look fine. I will get the nip recon as soon as PS gives me the go ahead.

    As far as exercise and mobility goes, I was able to shower and shampoo myself on day 3, when my drains came out. I have been able to go for walks (DH gets to handle the dog however) since the first few days. Today is my first full day back at work, I did half days last week, mornings only. It was very nice to go home to a nap those afternoons.

    Good luck, you have lots of support here!

    Denise

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  • cleomoon
    cleomoon Member Posts: 443
    edited October 2009

    Denise thank you for sharing your experience. Congratulations on having the surgery and reconstruction behind you Smile

    Macksix6 congratulations to you too!!

    Anne thank you for offering PMing. I may just take u up on the offer. 

    Having you all here makes this so much easier.I have an appt set up with my BS at the end of Nov. to discuss the PBM in more detail and ask about reconstruction. 

    ((Hugs)) 

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  • Tinkerbell99
    Tinkerbell99 Member Posts: 243
    edited October 2009

    wow, u sound like me. I have been told i have LCIS (?) if i'm getting all these initials correct..i have very dense breast & i will be 50 in a few yrs.  I have had numerous biopsies & lumpectomy & i cannot deal with this anymore. Every 6 months i feel i have to go thru it again..so i have decided to go for a mastectomy & i will get the 1 step implant. My date is Dec 15th.  It's nice to hear from-others who do NOT have cancer yet, but have gone thru so much & have decided to get this done.

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  • cleomoon
    cleomoon Member Posts: 443
    edited October 2009

    Congratulations on having your surgery scheduled. I am still working on getting to that point...actually telling my breast surgeon it's a go. I meet with her the end of November and hope by then I have come to accept having a PBM.

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited October 2009

    Shoshi - You will be almost exactly one year behind me. Best wishes and gentle hugs going your way! - Jean

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  • Kimber
    Kimber Member Posts: 384
    edited October 2009

    oh ladies, I wish I knew what to do.  I am almost jealous of you all that have made the decision and are on the other side of PBM, especially you, Denise, since you were able to go direct to implants.  I was diagnosed with LCIS in 1/08 and since then have had two biopsies that were horrific.  I have my "close monitoring" MRI on Monday 11-2 and I found a lump this wk.  I have never had lumps, only suspicious lesions that show up on MRI.  This thing is hard and about twice the size of a pea and is pretty much under my lumpectomy scar.....I have been on tamox for 20 mos and all of a sudden my left breast is "acting up".  It's sore, it's bigger than the other, and it is very lumpy, bumpy and ropey.  Then there is this LUMP. I'll know more next wk and if I need another biopsy I am seriously considering PBM.  I found a dr in my area that does skin-sparing-direct-to-implant and I am a perfect candidate for that.  I just want to know - does the anxiety go away when your breasts are gone???  I stopped tamox for 1 wk thinking it was causing me to feel so bad, but started back on it because I am scared of everything that is "cooking" in there.  In addition to LCIS I have a lot of other cell changes...

     Any advice, etc is greatly appreciated!

    XO

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  • cleomoon
    cleomoon Member Posts: 443
    edited October 2009

    Oh Kimber :(

    So sorry you have yet other suspicious breast stuff happening again. I just went through the close monitoring screen, and it's so tough, no matter if you have been through it before. I will be sending you lots of B-9 wishes on Monday.

    The decision just plain sucks!! I have decided to have the surgery myself and will tell my surgeon when I see her Nov 27. I wish it were easier for us.

    ((HUGS))

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  • Kimber
    Kimber Member Posts: 384
    edited October 2009

    Thanks cleomoon....

    It seems I am always back here in Oct/Nov.  Thanks for the well wishes.  I will let everyone know what MRI says.... 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2009

    Kimber---I just sent you a PM. Praying you get good results from your MRI.

    Anne

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  • LeeMcC
    LeeMcC Member Posts: 152
    edited October 2009

    Hi all -- I am nearly 6 weeks out from BMX (prophylactic on left) with DIEP Flap reconstruction done down in Charleston, SC, with great surgical team headed by Dr. James Craigie!

    I was small breasted and 47 at diagnosis (3 months ago). I had LCIS diagnosis at first, which after excisional biopsy/lumpectomy becamse extensive PLCIS mixed with DCIS and a very small invasive. Lumpectomy would have distorted my breast.

    My sentinel node was clean ... so the surgery did it. No rads or chemo. Now I'm 48 with (like macksix6) soft warm round breasts that match and stand up on their own now (full B with volume and cleavage!) ... and the tummy I had when I was 18. Woo Hoo!

    I wish everyone the best of luck with their very PERSONAL decisions. Take the time you need. I didn't rush -- it took me 4 weeks.I talked with plastic surgeons and post-recon women about DIEP vs implants ... and I made the best decision for me. I wasn't in love with the small, droopy breasts I had, so getting a new perky pair was part of my decision. I also wanted them to match and not to have to worry about the other side all the time.

    Lee

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  • leaf
    leaf Member Posts: 8,188
    edited October 2009

    Oh, Kimber, I'm so sorry you are going through this!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2009

    Kimber I am so sorry you are going through this.  It is good that your doctor is sending you for a MRI. Hoping and praying you get good results.

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited October 2009

    Kimber - To answer your question, yes, the worry is gone for me! Hugs my dear! - Jean

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  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited November 2009

    Kimber,

    I'm so sorry that your going through this. I found out last Nov. I had LCIS. So I remember how I felt last year at this time.Very confused, couldn't think straight.  I felt like a truck hit me. I decided to have a PBM with direct implants and be done with the LCIS. It was a very difficult decision but, it is doable. Now one year later I'm still glad I had the surgery.

    If I can help you out please send me a PM. I have a list of questions that you could take to your PS.If you would like them let me know.

    Take care,

    Ann

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  • Tinkerbell99
    Tinkerbell99 Member Posts: 243
    edited November 2009

    Kimber, i have been down that road so much already...as much as i know the surgery is painful & has complications that can happen ..i am looking "forward" to NOT worrying anymore..my thoughts & prayers r w/ u !!!

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  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited November 2009

    Anne1962

    Too many Anne's and Ann's...lol

    If you have a mast. you have to have drains. The BS or the PS figures out how many at the time of surgery. I did not have tissue expanders. My PS did what they call one step or direct to implants. I did not have nipple sparing because my BS feel's the LCIS I had could show up again in the nipples. I myself wouldn't take the chance of getting cancer in the nipples after going through a BM just to keep my nipples. Besides my PS said he would give me great nipples and he did.

    So I'm pleased with the decisions I've made.

    Best of luck

    Ann

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  • Kimber
    Kimber Member Posts: 384
    edited November 2009

    Hi ladies, just back from MRI.  Now, we wait......

     Stonebrook (Ann),  yes would you PM me that list of questions?  I feel like I am pretty well versed, but I also feel like I am entering that place again where I am living outside of myself to cope. Whatever this lump is,  it is very hard and doesn't move.  It's like nothing I have ever had before since my LCIS did not present as a lump.  It is on the same side as my lumpectomy, but there is always a lot of stuff going on on that side.  That breast is even bigger than the other one suddenly.

    Anyway, I will post when I have some answers. See surgeon on Wed at 2.

    Thanks for listening,

    Kimber 

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited November 2009

    Kimber - We are thinking of you!!!!!!!!!!

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  • Kimber
    Kimber Member Posts: 384
    edited November 2009

    Thanks mykidsmom!  Any good thoughts are appreciated....I hate this waiting.....

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  • leaf
    leaf Member Posts: 8,188
    edited November 2009

    Keeping our fingers crossed for you, Kimber!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2009

    Kimber--praying it is nothing more than scar tissue.

    Anne

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  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited November 2009

    Kimber

    sending you prayers and good thoughts for Wed's appt.

    Ann

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  • Kimber
    Kimber Member Posts: 384
    edited November 2009

    Thanks everyone!  On my way to surgeon now to see what the plan is.

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  • DRT
    DRT Member Posts: 25
    edited November 2009

    Kimber,

    Good Karma coming your way!

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  • Kimber
    Kimber Member Posts: 384
    edited November 2009

    Hello sisters,  OK here is the deal.  Nothing suspicious showed up on MRI, lots of tiny cysts, enhancing mild background parenchyma (leaf? anyone?) in both breasts, some surgical changes, a couple clips, etc.  The radiologist's impression noted that the "palpable lump should be managed by clinical evaluation", which is what happened today.  Surgeon felt it and said "it has to come out".  It is a lump about the size of a large pea with a hard spot in the middle.  He drew it on paper and we agreed we were feeling the same thing.  So off I go again for excisional biopsy.  Waiting for scheduler to call.  This is my 3rd Nov in a row going through a biopsy.....Of course I have been all over the internet about MRI missing things and of course it does, usually ILC.  But I am not going to get upset yet.  Any info anyone has regarding lumps with hard qualities or the accuracy of MRI, please tell me.  Maybe it is just scar tissue.  It is right under my lumpectomy scar, so he can open that back up.

     Thanks for all the good thoughts and encouragement.  I will let you know when I know anything.  Meanwhile any info (good or bad) is appreciated.

    XO, Kimber 

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