TRIPLE POSITIVE GROUP

tomboy

My husband uses the VA...despite private insurance...because he has gotten great care there and the EhR system is great. Think that was supposed to be the model.

I think I've probably given up on the notion that any info is private or secure anymore.

I was one of millions whose records may have been breached @ BC/BS.

Do you think I could contact medical records directly to get my result? Never occurred to me...

Hello to all. Welcome to the new people. And Ang, cute grandbaby! (I'm a bit behind)

ashla, call your doctor and tell them you want the results. I have my chart from Aurora. I get the test results there by the next day. Occasionally if it needs interpretation it takes a week. Xrays, etc. But usually they call to tell me if something isn't right. The blood tests are always there the next day.

Much love

I'm on Aromasin. In terms of SEs, I've had the usual hot flashes and was pretty moody until MO prescribed Celexa (it's an SSRI). Otherwise, I feel fine. I take Aromasin in the morning after I've eaten breakfast, along with my other meds. MO says that 80% of women do fine on Aromasin, but that 20% experience joint pain that runs the gamut from annoying to debilitating. Some of the ladies on the Aromasin board also blame it for hair thinning; that hasn't happened to me.

ashla - lago is on Aromasin after switching from Arimidex, I believe. She might share some info about how she is doing on it. 

I have seemychart and my doctor will link labs and imaging reports once he has looked at them.  He receives an email with results and that prompts him to review and then link the report.  If I have a pending result I have occasionally also had a call from his nurse to let me know things look good so that I wouldn't worry.  Seemychart also lets me graph labs so that I can see the trending pattern.

ashla - also, amazingly, the military now has electronic charting and a portal that you can make appointments and send messages to your physician.  I have not yet tried the appointment making tool but I need to get a new PT referral and want to talk with my PCM about metformin (slightly elevated glucose and borderline A1C) once again, so I think I am going to try it.

Hi, Ashla. Good luck on Aromasin. I wanted to try it, since 1.Arimidex, 2. tamoxifen, 3. femara, and now 4, tamoxifen again, have ALL caused unholy pain, especially to my poor feet, mostly. And my back, hands hips etc. I had tried to talk to my onc's np, and she told me that I couldn't try aromasin unless i had progression, in which case I would have to have it in combo with affinitor. Which I want NO part of affinitor, and also by the way, seems to be used mostly on women who are ER+ her2-.

So I got a three month break from all of them and am now back on tamoxifen. And my feet never stopped hurting, I am on pain pills and gabapentin because of the pain. I had been walking five miles a day, and sadly, don't do anything near that now... So, when I went to read my clinic notes from that last visit, i noticed my onc said I had fibromyalgia! Hmmm, no one ever told me that before! So yesterday, my primary care physician, said no you don't. it is the medicine. He is the one who treats my pain, and also the one who is interested in my health, and mental health, as a whole. Before BC, I only saw him once or twice a year. Once a month now.

So, in the beginning of all of this, I just got what ever papers they handed me, sometimes path reports, but mostly blood tests. But I got very curious about six months into it, and had ordered ALL clinic notes, office visit notes etc. It was about 2 inches thick, and Veeery interesting. Wow, I even got to read all about the surgery itself! I did have to pay about $80. A few pennies a page. There are so many awful things said about me personally in them, and also plain mistakes, I couldn't believe it! They even tried to say it was my own fault that I got lymphedema, because I washed the underside of a vehicle! No, I had told bs when she asked if i was trying to get back to normal actions, that i tried to help my boyfriend wash his truck. I sat on a bucket and tried to gently wash the wheel well of one tire, very gingerly and had to stop. I was on chemo at the time, and neeeeeedeed to lie down, immediately! And called me non compliant, even though I did everything they asked me to do. What ever. Too many stories to tell here. And if I can ever stand to, I am going to try to get all the things like that ammended. I am thinking about transfering to UCLA, or the other, USC, I think, for the rest of my follow up, but even that just seems like too much trouble....

hi Tomboy,

ouch about the personal stuff in your records. Guess I never think about that when I'm there. Probably better to be completely open anyway.

Regarding Aromasin . He said it is the newest of the 3 AI's and works completely differently. The other 2 look very similar on a molecular level and work the same way. Think Aromasin is a steroid.:( it is supposed to be better on the musculoskeletal issues that are my biggest complaint.

He said MOs can use the 3 interchangeably.

I like my MO otherwise... He treats me with respect, explains complex issues to me patiently, always listens to me carefully and never rushes my appointments but the system stinks and he's swamped. Think I may switch too:

Tomboy

That's why I left my first MO & it was a very difficult decision. He taught most of the oncologists in the area and was brilliant, respected, kind and closely tied to my breast surgeon. But....and for me it was a big but....he didn't explain anything! His attitude was 'don't you worry your pretty little head. I'll take care of everything.' And truthfully, he did. He and my bs decided on my neoadjuvant treatment .... At a time when it wasn't so common...and decided on the plan that resulted in a complete response. Can't really ask more from him. Guarantees not forthcoming:(

But I need to know as much as possible. That's me. So I switched.

And sadly I might do it again....

Also remember Tomboy that anxiety goes with this territory..don't feel ashamed of it. Goes with the cancer dx and it goes with estrogen deprivation! If you feel it...tell them .

Forgot....

I honestly believe that many oncologists don't realize the extent of the side effects especially with the anti estrogens. I'm in that trial where they're studying it now....

Hi,

just had this group recommended by lago. Glad to find some TPs . Last time I had bc I was in my 30's (25 yrs ago) and I was triple negative, so this is a totally different experience. I finished my Taxol/herceptin a month and a half ago, still on Herceptin til end of Jan, and have just been given arimidex to start.

I went to UCSF and my docs there were far more interested in the HER2+ part than the ER+ part for me. Evidently my HER2+ status was described as "florid" which they say is a good thing as the worse the HER2 the better the herceptin likes it or whatever...anyway they have been less concerned about the ER+ part and in fact I've been told that that part for me is low risk so if I have problems they would not be afraid to take me off of it. They tell me, since I have been in chemo pause since 1990, and am small and my body has already been running on empty for 25 years I should have no problems with this AI (here's hoping). I have to add that this time around is nothing like last time in Los Angeles when they told me I had a poor prognosis yet here I am. There was no such thing as the internet to find anything out or go to talk with others in the same situation!!! Sometimes I'm glad there was no internet then because had I been able to look up triple positive at the time I would have gone bat shit.

Tomboy,

Back in 1990 I was treated at Cedars Sinai Hospital, I love those guys. Now I've been treated at UCSF they're also great

Suladog - I haven't posted in a while but sorry to hear the bc came back.  I was under the impression that if we made it 5 years without reoccurrence, we're in the clear......

I am not able to have Herceptin because it caused heart damage for me so I'm still "batshit" over the triple +++

Unfortunately there is still a risk down the road for ER+ BC. The greatest risk is in the first five years which is why they use that number. After that your risk drops significantly but not down to zero.

I think Suladogs new tumor would be considered a new primary and completely unrelated to her first TNcancer.

wind girl,

Yes it was another primary...totally as different as can be from 1990. For one thing it was in my remaining breast the other culprit long gone. First was in my 30's second one... Well older. Both were small and node neg but that's about it

mommato,

Yes, my mo told me the other day, usually after about 10 yrs you're in the clear with that but way back in 1990 they barely knew anything about that type of cancer. In fact it was the guys at UCSF looking at my old pathology who said that what I had had then was TN , all I knew at the time was the doctors thought it was bad. My cancer surgeon was the one who told me he knew I was going to do fine. That meant a lot to me then, and we're still friends and meet for lunch when I'm in LA for busines