TIME LINE FOR TESTING

[Kristen]

I've read this board for some months now and have seen alot of info on everything, which has helped me know my condition and meds better. Lately there has been alot of talk about what kinds of scans need to be done and when. So from my point of view, being new, I am on trial w/Herceptin til Dec. What kind of scans should I be asking for and when? MUGA scans are done routinely, my gastro dr. wants me to have a colonoscopy yearly since he said I am at a higher risk since I had BC. We should ask for Brain MRI's yearly and is there anything else? I know that there is discussion now on MET's but when, if I choose to have one should I have it done? They say I am NED now, but after the Herceptin is gone what should I really be watching for? I know pain and skin rashes, but some folks I talked to didn't feel any pain and had METs. Any time line would be greatly appreciated. Thank you in advance. Take care. Kristen

[Lisa]

I don't know that there is a set-in-stone timeline. If you are Stage IV, I think most of us are scanned every 3 months, including brain MRI. But that certainly wouldn't be the case of earlier stages. As with everything, discuss it with your doc.

Love and light,

Lisa

[eleanor]

Hi Kristin,
Not sure there is a timeline here, I guess it depends on your dx. I have a question, though. You said you were on a trial til Dec. Does that mean a clinical trial? If so, is it because you do not have mets and this trial is to see if Herceptin will prevent mets? If so, it would make sense that scans will be done to monitor response to the drug. Check with your dr and see what the protocol is.
el

[Kristen]

I am not stage IV, I am stage IIIb. er/pr-. Her2+++. I would discuss it with my onc. but she doesn't like to perform any tests unless it is required by the study I am on. I can't change onc's while on the study. So I am kinda stuck with her. I'm just asking for us who have not metastisized(sp) what would you tell your best friend w/BC to ask your onc about testing and when and why? Thanks again. Take Care Kristen

[Kristen]

I am on the Tax/Carbo/Her trial and get Herceptin for one year. Which would be in Dec. Sorry I didn't post all info before. Kristen

[michele u]

Kristen,
I am stage 3b also. Can I have more info on the trial you are in? Like which meds and how long? That must be a new study, the carbo/taxol/and herceptin. I wish I would have known about that one. I am on the one with herceptin by itself after AC and taxol. I think herceptin works better with another chemo drug. And about the time line, I was told the 2nd year is where most of the mets occurs. I know this is not set in gold, but i've noticed alot of people with mets occured on the 2nd year. That will be next year for me. i might ask my dr to do a scan twice next year, if he will i don't know

[lauren]

where did you hear that info about recurring in the second year? and do you mean between the one-year anniversary and the two-year anniversary? or do you mean after the two-year anniversary?

[michele u]

lauren,
This is what my onc. told me. After reading alot of peoples stories, I have noticed that the recurrence seems 2 years past the first diagnosis. Like if they were dx 2002 then2004 recurrence. The months are always different of course because NO ONE can predict the future for anyone else. It's just ME noticing this for some people. I had 2 dr's tell me this. BUT, like i said it's just THEIR opinion. I think I will be extra sensitive next year.

[Kristen]

michelle u,
I got on the Genentech trial and the arm I got was the Taxotere,Carbo & Herceptin. I got Herc. every week for 21 weeks and chemo every 3 weeks for 6 treatments. I opted for radiation, I did 30 rx. Now I have Herc. every 3weeks til Dec. I called my study nurse and asked her this morning after I posted what tests I will recieve and she said an anual mamm and chest xray. Hopefully my other Dr.(nuerologist for headaches will)they won't order the Mri of the head/ She said unless there are symptoms they will not do anything else. Like I said my onc. is by the book and won't do anything off protocal.

[lauren]

Don't think about it next year. Just live.

[Kristen]

michelle u,
My radiation onc said the same thing, that if it reoccurs it usually does in about 2 years. But from reading this board I see it can happen in a matter of months and it can take years. I'm with lauren lets just live.

[michele u]

lauren,
You are right.We all just need to live!! I plan on doing alot of that!!

[Kristen]

I am living a full live. All the pain is gone and I have no side effects from Herceptin. All I wanted was to see what I should be asking for in the way of scans and not one has told me. I just want to be vigilant in my care and health, that does not mean I dwell on the topic all the time. My live if full and the one thing BC taught me was to live one day at a time and to take in each and every precious moment and live life to the fullest. It doesn't necessarily mean that I should have this test done here or there, just what should I be looking for besides chest and Mamm.Take Care, kristen

[Steph N]

Kristin's question:
"just what should I be looking for besides chest and Mamm.Take Care, kristen"

They should run your tumor markers every three months and after a year go to 6 months. Maybe some others have a different story at their cancer centers.
Bone density (DEXA) scan should also be ordered to get a baseline for them to have on file. I had that and on the basis of the result was put on Fosamax, as I had more than normal bone loss for women my age at that time. Due to the chemos, I guess. Being on that drug may be why the mets starting to occur in my bones, were not as developed as in a soft organ like my liver.
Hope this helps.