lucky32

Hello, everyone,

 I wanted to give you all a quick update. Some new pathology information is still being evaluated, but for now I will not be having the PBM's in August. I will, however, be having surgery for an unrelated problem later this summer.

 Too complicated to go into all the details, and things are still changing pretty fast anyway, but I do want to thank you all again for your support. It's good to know that you will be here if I need you.

 Hope everyone has a wonderful 4th.

Thanks for that link, Misty. I hadn't seen that article before.

I hope that there will be increased funding for this type of research. We need to know so much more than we do about LCIS.

I wonder if the idea that PBM's are overly aggressive for LCIS is beginning to change. I know the NCI still says that, but the 5 doctors that I've seen about this issue all thought that a PBM would be appropriate for me, and we're still not even sure whether my diagnosis is LCIS or atypia.

Actually, I was a bit surprised when I went for my 2nd surgical opinion. I really thought, given the questionable diagnosis, that the docs there would say that PBM was an overreaction and that I certainly didn't need one. But they didn't, and that has been a big factor influencing my decision-making process.

I think it's good that at least some doctors are beginning to take LCIS and atypia much more seriously. PBM's aren't right for everyone, of course, and I'm sure no doctor would say that they are, but I'm glad that some are starting to realize that these early changes are significant. I once had a "don't worry your pretty little head about it" kind of doctor, and at the time I didn't know any better. I hope no one else ever has to be put off that way.

Leaf, do you live near enough to any other NCI center that you could go for another opinion there? You were really not served well at the one you went to. I think Fred Hutchinson has some very LCIS-aware people, if it might be possible for you to go there.

I'm interested in something else you mentioned--about lumpectomies and radiation for LCIS. I've seen that mentioned in one or two books, but most say that radiation is not indicated for LCIS. That's always seemed slightly odd to me--has anyone actually tested this to see whether radiation might indeed offer some benefit? Just wondering if you knew of any studies on that subject. (DON'T take a lot of time to look it up--I know you are busy!) It's just one of those back-of-the-mind curiosities that I have.

I hope you will get some good answers about your other disease, too. You've really had a lot on your plate recently--I hope you get some rest and relief soon. Thank you so much for all the research you do for us. You are our guru!

Hi, Misty,

Yes, it is reasonable to have an MRI every year. I do, but I'm in a high-risk program at an NCI Comprehensive Cancer Center. Do you live near one of these? If you do, it would be well worth it to at least have a consult there. Even if you have to travel, it still may be worth it. I used to live 3 hours away from mine, although I have since moved closer.

Here is a link to a list of those centers: http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

We are starting to have a thunderstorm here so I will close for now. Be back later.

Thanks, leaf. Most of the time I do pretty well, but some days it just gets to me. I will be glad when I've decided one way or the other. I expect I'll do it but just am not quite ready to make that final decision.

The reason I'm having trouble responding to the e-mail I got is that this lady is planning an event that she wants me to be a part of. It's the kind of thing that would be hard to get out of without a good excuse. Of course, I'll have a great excuse, but I'm not ready to tell her about that now. Still working on the best way to tell her I'm not available without telling her why (which probably won't go over too well).

By the way, it's not really 150 degrees here--just feels that way! The heat does make it hard to think clearly. Today is just one of those days when I don't feel like doing a thing.

Thanks to everyone for your support and listening ears (or should that be eyes?)

Hi, everyone,

I saw the plastic surgeon today; I liked her quite a bit. However, I haven't changed my mind; I still don't want reconstruction. She did reassure me that if I ever do want it, there should be no problem doing it then.

Still heading toward PBM. My next step is to meet with some of my doctor's other patients and talk with them about their experiences.

Hope everyone is keeping cool (it's hot as blazes here).

Hi, there,

Have you asked your oncologist about this? At one point, mine did mention having an oophorectomy, BUT this was only after I'd tried tamoxifen for over a year. If I'd had that surgery, I would have also had to take Arimidex afterward. Upon further discussion, we decided that this surgery was not appropriate treatment for me. This was partly because of another medical condition and partly because of the risk of osteoporosis and raised cholesterol. It is definitely something to discuss with your oncologist, because there is no one right answer about this.

Tamoxifen seems scary, I know, but most people do fine on it. I didn't, but most people do. The risk of stroke is small (unless you have other risk factors). Most side effects of tamoxifen are not serious. They may be annoying, even to the point that you would want to stop taking the drug, as I did. But you will most likely not be permanently harmed by taking tamoxifen, even if the side effects force you to quit. It seems extreme to go directly to surgery without at least trying less invasive treatment, but again, only your doctor can answer this for you.

It is not an easy process. Be sure to let your doctors know how you feel. They should be able to help you find the treatment that is right for you.

Hi, everybody,

Well, I had the 2nd opinion appointment today. It went very well. I met with a radiologist and also a surgeon. Without going into all the gory details, basically they concurred with my oncologist and the first surgeon I saw.

In a nutshell:

--My risk is high. Still a little variation on exactly how high.

--It doesn't matter very much whether my diagnosis is LCIS or "only" atypia. Both carry a substantial risk and are treated pretty much the same. (They tried to get my original slides to re-read but so far have not received them.)

--PBM is my only preventive option at this point, since I can't tolerate the drugs. It is a reasonable option for me.

So, I am going to continue the process. I do feel better knowing that the 4 doctors I've seen about this have all basically said the same thing. I will probably do it but haven't made the final decision.

Thank you all so much for the good thoughts!

Leaf--I think you hit the nail on the head. This is just what I have been trying to find out from my doctors--why, exactly, do they think my risk is so high, especially since one of them has "downgraded" my diagnosis. Where are they getting these numbers? Sometimes I wonder if they just pull them out of the air.

Still trying to get some good answers from them. It's very frustrating. Your research is always so helpful--thanks!

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.