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Topic: I'm back. . .and up in the crazy tree

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Jan 8, 2008 11:59AM

lucky32 wrote:

Hi, girls,

I haven't been here in quite some time (trying to move on, you know), but since I am currently residing in Kimmytoo's crazy tree, I need you guys.

A few ladies might remember me, but for those who don't, I was diagnosed in 2001 with LCIS. I've done tamoxifen and Evista, but ultimately couldn't tolerate either one. I'm in a research study at a major university, and as part of that I receive regular fine-needle aspirations and MRI's.

My latest MRI was right after Christmas. I got the results today, and "there are slowly progressively enhancing clustered foci, which were not apparent on the prior study" on the right side. It's classed as "Category 3, probably." I think that's supposed to be "probably benign," but the report doesn't say anything beyond the word "probably." Anyway, they want me to have a repeat MRI around the first of February, to see if this is cycle-related or something more.

Now, I know that this really is probably benign, and that MRI's show a lot of false positives, and all that. BUT I AM STILL SCARED SILLY! My last 2 FNA results have showed increasing cellular activity on the right side. I called my husband to tell him the latest. I wasn't going to cry, but I couldn't help it. He asked if I wanted him to come home, but I told him not now, just come a little early this evening if he could. He is such a sweetie. I hate for him to have to go through this too. We have just moved to a new house in a new town and are very happy here, and now this.

I have been thinking off and on about PBM for quite a while, although not as much lately. If this thing turns out to be benign, I think I need to seriously consider it again. This constant watching and waiting is no way to live.

Guess I'll go take an Ativan and then bake something. We are having a party this weekend, so I had planned to make some stuff to put in the freezer anyway. Maybe it'll take my mind off it a little.

Thank you for letting me get this out. Please, send kind thoughts!

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Jan 8, 2008 02:45PM roseg wrote:

Sending kind thoughts!

Remember - probably benign - means it's probably not anything threatening. Wait for evidence to worry! Don't let this steal your happiness. 

Rose
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Jan 8, 2008 05:42PM Peaches70 wrote:

Ditto the kind and positive thoughts.

What you are experiencing is the worst part of "watchful waiting" as far as I'm concerned. Waiting for what? Waiting to get the bad word some day. That's why I'm working on PBMs for this summer!

Keep that prescription up. I know I'm going to keep mine ready.

Have a great party and try (I know it's hard) to think about anything else!

Anne

Dx 1/25/2007, LCIS, Stage 0
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Jan 11, 2008 01:53PM lucky32 wrote:

Thanks, ladies.

Still waiting to hear when they want to do this repeat imaging. Some lab work has to be scheduled too. I suppose I should be good at waiting by now. . .

I've been reading a book called AfterShock: What to do when the doctor gives you--or someone you love--a devastating diagnosis, by Jessie Gruman. A long title, but a great book. I think I'll put something about it on the newbie board. I wish I'd had this the first time around. Even though I'm in the waiting game now and don't know anything definitive yet, it's still quite helpful.

Hope you all have a great weekend!

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Jan 12, 2008 10:32AM leaf wrote:

Kind thoughts going out to you! It is so hard to deal with this uncertainty. All the waiting. Its so difficult.

Sounds like a good strategy to try to bake something - distraction sometimes helps. We just have to get through this whatever way we can!

Please know I'm thinking of you and wishing you well!

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 12, 2008 11:08AM awb wrote:


lucky----I can totally relate to what you are going thru with the waiting and all the uncertainty with the LCIS.  I was diagnosed with LCIS almost 4 and a half years ago and I have family history of bc as well.  I take tamoxifen and I am very closely monitored with breast exams, mammos alternating with MRIs every 6 months now. My first breast MRI (Aug/06) showed a "7mm area of slowly enhancing nodularity" in the LB that the radiologist felt was "probably benign".  I didn't feel comfortable waiting the 6 months for f/u, so my oncologist let me go for mammos---they were totally benign. The mammos I had 6 months later also were benign. (I've since found out that malignant lesions usually are more "rapidly enhancing" on MRI, so the fact that your report says "slowly enhancing" is a very good sign).  My most recent MRI (sept/07) shows that the area in the LB is now 6mm, but it also now shows an area in the RB between 2mm and 5mm and an area in the skin between the breasts of 8 mm.  The rad still feels they are all "probably benign" findings and again recommmend 6 month f/u--but this time MRI and mammo (instead of just mammo).  Again I didn't feel comfortable waiting so I asked my onc for f/u bilateral US--came back totally negative. So with the negative US and negative mammos, all my docs  (rad/onc/gyn) feel that they are false MRI findings (apparently very common with MRIs--that's the trouble) and all feel it's safe to wait the 6 months for a repeat MRI, which I will be having in 2 months.  Actually, my onc recently said he didn't think a repeat MRI was even necessary--felt the radiologist was "just covering his butt--doesn't want to get sued", but he agreed to let me go anyway, because I insisted. (It's my life/health, so at this point I don't really care if he doesn't agree with me or not!).  All these tests do give an added sense of security and comfort, but they are certainly stressful as well. I'm not ready to consider BPMs as many others here are, but I would definitely go with bilateral mastectomies if invasive bc was ever found. It basically comes down to how much risk are you comfortable living with, a decision we each have to make for ourselves. My onc feels I am low risk for BRCA, but I may look into the genetic counseling in the near future. Praying for good results on your next MRI in Feb.

Anne 

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)

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