LCIS need a little support

Mama Shells: I'm so sorry for your stress.  I too had a really hard time the first several months after diagnosis as there really is not clear path to follow.  I think I wrote this somewhere else but I saw a medical social worker at a major cancer center (not where I'm seen for my stuff though)- my husband set it up because he basically felt I was losing my mind over this and he didn't know how to help.  I was so glad to have done this.  The first thing I talked with her about was the actual diagnosis and she asked some good questions and then asked my gut reaction on what treatment plan to take.  Then she said to mentally take that option, wrap it up prettily and set it on an imaginary shelf in my mind.  And then stop.  She told me to take a few months and just sit with it for a while and when I got too stressed, to think of that present to myself.  I know this may sound corny but it helped me so much.  When I finally decided to take down the present and use it, I felt really good about the decision and knew that it was right for me.  Does this make sense?  Sounds silly as I write it, but somehow it worked.  Anyway, please use me and the others here as a sounding board.  Tell us your fears and worries and we'll listen and respond.  I'll be watching out for you.  All the best, Kelly

Fire- Dancer- I've been following your progress on the nipple sparing thread and am so happy for you that you're doing so well after surgery. My fingers are crossed for a good path report.  I'm following your footsteps on Jan. 26th.  -Kelly

Mammashells, having the diagnosis that you do, I'd step back and try and relax.You have nothing that is pushing you on to do anything other than monitor yourself, whether it be for 6 months to 6 years.I think the issue with your husband is probably more pressing at this time.LCIS is not cancer. For the majority of women that have it, it never progresses any further.For a small number it may go on to become  something more serious.For this reason you need to be monitored with regular mammos,possibly mri and pelvic ultrasounds and frequent manual breast exams by someone proficient in doing this. The possibility of also taking medication should be discussed.A breast oncologist would coordinate all these exams , meds and any other testing needed. Unfortunately sometimes what you are experiencing post excisional biopsy happens, particularly if the area that was excised is large.As a result of my biopsy my one breast is quite a bit smaller and the nipple is pointed outward.The scar has also formed a keloid so it looks awful and is quite painful most days.However, compared to more drastic surgery,it's a small price to pay.Rather than dread these frequent exams I feel comforted in the fact the someone is watching out for my wellness and should anything of a more serious nature  be found it will be immediately dealt with.

I will definately keep you and your 2 children in my prayers.

Barbara

mammashells-----there is so much that is controversial with LCIS, but the one thing that is certain, is that you have time to make your decisions. There is no need to rush into anything, since it is non-invasive. I was diagnosed with LCIS over 7 years ago and I am still doing high risk surviellance. (alternating mammos and MRIs every 6 months, breast exams on the opposite 6 months, took tamoxifen for 5 years, and now take evista for further prevention.) Feel free to PM me if you want to talk.

anne

Well, haha.  I had my first visit with my new onc on Friday. My former onc is in semi-retirement.  I'm will be finishing up my 5 years of tamoxifen this next fall.

Looks like:

a) When I was diagnosed 5 years ago with classic LCIS, (and subsequently with ALH), someone did recommend bilateral MRIs, but that was certainly never done.  Maybe insurance denied.  But, anyway, as the onc said, its a moot point now, since I haven't had 'any worse' appear in the last 5 years.

b) Looks like while I do have an appointment with her in 6 months, only because I'm a new patient, what she is pushing for is to see her annually, and have my OB-GYN give me the alternative 6 month breast exam.  (The NCCN guidelines *are* for clinical exam every 6-12 months, and annual mammograms.)

c) She's just ordering annual mammos.

My blood pressure was 150/90 because when I went in to register, the registrar said she was going to change my alias name to my real name.  (I just spent the last 6 months getting rid of my real name, because my med and diagnosis list was potentially going straight to my supervisor who works in the pharmacy.)  Luckily the registrar did check with her supervisor.  The supervisor said she checked with the HIPAA officer, and, (in a tone of amazement) said all that I said was true!!!!!!!!  (My gosh!!) So I could keep my alias.

My Obgyn doesn't want to deal with any of my breast issues.  

I know clinical exams only catch ummm maybe ??10% of breast cancers???  but I feel somewhat  neglected.  I think I have the least intensive followup of any of the LCIS regulars here (unless they choose not to go to their docs.  I also don't know if classic LCIS women who choose bilateral mastectomies get twice a year followups after their BPMs?)  On the other hand, I'm on tamoxifen, which may decrease my incidence at least in the immediate future by some 50% which would put my average risk at roughly 10-20%.

Mamashells,

Been there, done that!  Feel free to PM me with questions.

Firedancer - GOOD ON YOU GIRL!!