No answers, lots more questions

lucky32

No answers, lots more questions

lucky32

Well, I saw the surgeon today. I'd hoped to come out of that appointment with a clear(er) sense of what to do, but it didn't work out that way. She is questioning some of the conclusions on my original pathology report. I had a second pathology opinion at the time, which didn't agree with the first one, but my oncologist has known this all along. Without going into the gory (and boring) details, it is possible that my LCIS isn't that at all, but "only" atypia. It is unclear to me at this point whether the doctors are arguing over wording or whether there is a significant disagreement. I've e-mailed my oncologist and am waiting to hear from her.

The surgeon I saw today is willing to do a PBM, as she considers my risk still to be fairly high. I'm still trying to get solid info on exactly how high. This is a question I've been asking all along, so I'm not sure why I think they'll be able to answer it any better now than they ever have.

I am fortunate to live fairly near two NCI Comprehensive Cancer Centers. I made an appointment this afternoon for a second opinion at the one I don't currently go to. I'll see them in 2 weeks, and I hope they'll be able to give me some better info and clear direction.

Oh, yes. The surgeon this morning makes all her patients see a plastic surgeon before she'll operate on them, even if they don't want reconstruction. I don't, and I was very clear with her about that, but I have to go see the PS anyway, in 3 weeks. My rant about this is over on the Prosthesis section. (Doc also told me all this stuff about how the prostheses wouldn't fit right, look right, etc. I feel like screaming but I'm too tired. . .)

So, just wanted to give an update. I used to watch soap operas that were less dramatic than all this; I hope the docs can give me some good answers soon. I'm just getting really tired of all of it. Thanks so much for all your support, ladies. You really are wonderful.

leaf

Oh lucky32-I sure wish there was more information out there. What a mess! I have no IDEA how they come up with the numbers they have given me, but maybe I'm different because I have a weak family history. Sometimes I think they just grab numbers out of the air, or maybe its their experience of what has happened to the ALH or LCIS patients they've seen.



Let us know how it goes, OK?

lucky32

Oh, thank you, leaf. I heard from my onc today. It does seem like, at least in my case, the wording doesn't matter all that much. She said that, whether what I have is LCIS or atypia, it doesn't really change anything for me, and she gave me a lifetime risk of. . .50%!!!! This is based on my personal history as well as a weak family history. That number certainly got my attention, though. I didn't think my risk was quite that high. I wonder if doctors are taking atypia more seriously than perhaps they used to. If so, that's a very good thing, I think.

I'm still getting the second opinion, so hope to decide after that. 50% is pretty scary; we'll see if the 2nd opinion folks agree with that number.

Thanks so much again. I'll keep you posted.

leaf

Sheesh, I have no idea. I'm currently on tamoxifen, and according to my path report have 'classic' LCIS. This 'major institution' gave me a rate of probably 10% which is lower than that of the general population. I don't know any papers that support the idea that ALH has a higher risk than LCIS. The genetics counselor gave me a 40% in Mar 2006, which is more in line with your figure.





Frankly, I can't believe the close to 10% figure they gave me. They must be including the tamoxifen, and knowing I was upset. I don't think they even FOUND the report from the major institution to my doc, that I paid over $400 out of pocket. I've never had children, have 'dense but not extremely dense' breasts, took birth control pills for about 15 years, and had 2 biopsies after my original LCIS core.



I'd be very interested what you get.

lucky32

Yes, it is so confusing, isn't it? I don't think that either the surgeon or my onc was saying that atypia has a higher risk than LCIS. But they both seem to think that atypia raises one's risk to a pretty high level, and in my case, as yours, it's combined with a weak family history. So, if I understood right, those two things together mean that my risk is high, no matter what they actually call my condition. My risk might be a few points higher if I do actually have LCIS, as opposed to atypia alone, but the difference is not really significant.

All that is a little more vague than I'd like, so I will have some more questions for them. I'll get the 2nd opinion and see what they say first. Should be interesting!

I can't believe your 10% figure either. That just doesn't make any sense, and I'm so sorry that you got the runaround from what is supposed to be a good place. I wish so much that we could all get some definitive answers, but the science is just not there yet. So, we plod on. I am really glad to have you ladies to plod on with!

Hope everyone has a great weekend.

Anonymous

lucky--I'm so glad to hear they feel your situation may be that of atypia instead of LCIS. It does confuse me though, why your oncologist (?) would say that it doesn't make any difference in your risk level. From what I've researched (over the last almost 5 years), ADH/ALH  increases risk by about 4 to 5x  (multiplied by the base risk of about 5%==20 to 25%) and LCIS increases risk by about 8 to 10x==40 to 50% (so that is double the risk of atypia, which is VERY significant). Of course, we each have our own individual factors that also affect our overall risk negatively AND positively and change our overall total risk.  But if they are telling you that you DO NOT have LCIS and that it is only atypia instead, they are essentially cutting your overall risk in half and that's great news!!!

Anne 

lucky32

Thanks, Anne. I'm still pretty confused, too! The oncologist is including my family history in her calculations, as is the surgeon. It's weak but must still be considered.

The surgeon's thinking is this: LCIS would make me 11 times more likely than a person with average risk to get invasive cancer. If it isn't LCIS, then with my history, I have an 8-9 times greater risk. So according to her, it's not really all that much less risk. My oncologist concurs and is the one who said that in my case, the risk is essentially the same and gave me a lifetime risk of 50%. It is all very confusing.

So. . .this is why I'm getting a 2nd opinion. It seems that every doctor calculates risk a little differently. I need someone else to take a look at this with fresh eyes.

I will keep you all posted. Thanks again!

Kimber

Hi ladies,

My oncologist calculated my risk at 65-70% because I have a strong family history. So with tamoxifen that only takes me down to 33-35%. I feel a little left out in the cold like I am just sitting around waiting for something invasive. I wish I could see into the future so I would know what to do NOW.



lucky, keep us posted on what you decide!

Kimber