revkat

Well, I saw that video too, and the PT left us alone to view it. But prior to that we had an educational session with the PT and one other woman where we could ask lots of questions. And then after viewing the video the PT spent quite a bit of time going over the massage with me. I never felt like she wasn't open to questions. I had at least 2 follow-up sessions, it's hard to remember now. I did have a horrible time getting my sleeve measured and ordered and delivered. But that was the company that Kaiser contracts with not KP itself.

My impression was that I wasn't getting the care that some here have described where the PT actually does hands on massage of them and wraps their arm and teaching them about wrapping. I don't know if that is just because my LE was so mild, or if wrapping is not part of Kaiser's standard of care for LE. I know that Kaiser has a few PTs scattered about CA who are listed on the LE therapist website, and I've thought about emailing one of them to see if I could get a better picture of what Kaiser offers for LE patients.

At any rate, I think you should follow up somehow. You could contact member services, or you could start by emailing the PT directly (if you register with the KP website you can email any of the medical personnel who treat you. We've always gotten prompt replies). Maybe you caught him/her on a bad day, maybe this therapist really doesn't know about LE and was just assigned to cover it, maybe it's just a bad match and you can request a different therapist. I don't know, but we've discovered with Kaiser that there often is another possiblity than the one presented, but we may have to dig for it.

Effexor makes some folks sleepy and some folks wired (and some don't feel either!) so you may just have to experiment. I take my tamox in 2 doses -- am and pm, and my Effexor in the am.

Oh, Oh,  I knew Marie Kelly would post it too! And I knew Otter would have a response. Here's my response after reading the whole thing:

Geez. Now what are we supposed to do? Another complicated consideration that we don't/won't really have enough information to apply to our individual situations. I avoided early screening because of concern about the false positive/unneeded overtreatment scenarios. So at my first mammo at age 47 they discover a 2cm IDC with a 1cm tumor in the SN. Probably it wouldn't have mattered in terms of survival if it had been found earlier. But I might have managed to avoid chemo. And it probably wasn't going away on it's own. Knowing a lot, but not enough is soooooo frustrating!

I can't wait to discuss this one with my oncologist. I can just see the look on her face now

I have been told I have dense breasts several times, but they were able to see my tumor on a mammo, so I don't know how dense. Still, I could ask forever, but my HMO is not going to approve a breast MRI unless I meet the guidelines Otter posted above. And getting one on my own would mean not just paying for the test, but finding a doctor outside my HMO who would order it, paying him/her, and then paying for the test.

What I don't get is that we have all this anecdotal evidence here of women whose tumors, or additional tumors, were found on an MRI, but the studies still aren't showing an overall benefit for using MRIs for dense breasts. What's that about? Does the treatment we recieve take care of those additional tumors when they aren't discovered? Or are they the kind that a recent article in the NYTimes says "just disappear"?

missing --I'm so sorry to hear your diagnosis. I had the same kind of thing -- they told me enough about what they were seeing (spiculated mass, taller than wide) for me to look it up and know it probably wasn't going to be one of those "80% are benign" lumps. Hang around here and you will get plently of support and educated advice.

I see the onco and my BS every 3 months this year, then every 6 after that for a while (not sure how long). The onco runs basic blood work, including a tumor marker, but she says it's not really worth much, she just does it since we're already doing the CBC and liver stuff. But as far as scans, it's what you said, nothing unless I'm having symptoms. She cited the bit about no increased survival when you compare mets diagnosed first by symptom or first by scan.

So, your follow up sounds normal to me. Although I think all of us are a bit surprised that it isn't any more extensive when we first are told about it!

Medical folks will say that your bc is metastatic to lymph nodes if they find anything in your nodes, but it is not the same as saying you have stage IV metastatic cancer. For them it just means it has gone beyond the primary tumor in your breast.

I was offered that trial with the Avastin (since it has been effective with metastatic stage IV they are doing a trial to see if it helps with early stage) but I went with TC. Mine is strongly ER+ however, so I felt like the hormal meds were the important piece, the chemo was just extra insurance.

One thing to consider is that the average dosage for depression is 120-150 mg. For hot flash relief they generally just give you 37.5 up to 75. So if you don't see the improvement in mood that you need, ask about increasing the dosage (I think it is used up to 225 mg or more for severe depression)

I tried St John's Wort and found I actually had more side effects with it than with the SSRIs I had been on a few years before. I resisted effexor for a long time, but with tamoxifen it's one of the better choices, and so far nothing negative, just a bit of elevated mood.

Renee, I have to say that after not having to pull out chin hairs during chemo I started telling my husband that what I want for Christmas is laser hair removal! The chin hairs were one of the first to come back, and they came back with a vengence. Fortunately they seem to have settled down