new diagnosis

I was diagnosed in 7/05 with stage 1 IDC, sentinal node clear,(but path reports states possible lymphatic invasion), grade 3, ER-PR- and Her2neu +++. I had lumpectomy (1.5cm and .4cm) and after reexercision clear margins. Started chemo 1st cycle every 3wks for 4cycles of AC, then to have taxol/herceptin, rads for 6weeks, then herceptin to equal 1 year. Have seen posted that many people are having scans, I haven't had any and am concerned about the lack of them. Strong family hx of bc grandmother and mother (died 2 yrs ago. age 65 w/mets to bones), possibility of maternal aunt with it. Family secretive about illness especially about the Big "C". Believe that I have strong chance of reoccurance and mets since I'm not sure what the "possible lymphatic invasion means". Onc not happy with her2+++ and the possible lymphatic invasion. Should scans be administered or would the additional radiation from the scans cause more problems for me at this time. Not sure what to do. Have chemo #2 this week and need to ask onc many questions. What should I be asking and looking for?
Thanks for your support.

Hi,

I think you have done a good thing to ask these questions. It is v. imp you have a baseline CT or PET. If you ever have any problems done the line you cannot go back to make sure nothing was misses. Insist on it. I think you are you're own best advocate. I am sure it will be fine, but good to have for the records.

Take care,
Anne

I'm surprised that you didn't have scans prior to your lumpectomy. My onc did a bone scan and a PET scan during my initial BC and I had NO positive lymph nodes. Since they were negative, I had only blood workups on a regular basis until my mets showed up.

It would do nothing but help to have a PET scan, a bone scan and a brain MRI. The radiation will not hurt you. Or so they say.

You should also have a MUGA or heart test prior to the Herceptin, as a baseline and to be sure that your heart is strong enough for Herceptin.

Talk to your onc and be satisfied with the answers. It's so important to be partners with your doctor.

Love and light,

Lisa

I was dx'd with invasive lobular in June 2005. Also ER+, PR+ and Her2+++.Opted for bilateral mastectomy-but before that decision I had a breast MRIand chest MRI. Also had sentinel node biopsies (neg). After surgery I have had, so far...!!! C T scan(chest and abdomen), Fish (I think it is another indicator of Her2 status),whole body Bone scan, Liver ultrasound, MUGA, OncotypeDX. Yikes!!!

Hi
It has been my impression that HER2+++ patients at Stage I & Stage II can receive "dose dense" chemo. Basically the same recipe you have now, but every 2 weeks instead of every 3. Especially with possible lymphatic invasion. Don't get me wrong, your current regimen isn't "chemo lite". But bigger guns are available for more aggressive cancers (like HER2+++). I was on dose dense - I tolerated it well- AC gave me some puky days, the Taxol was a breeze. I dozed off with radiation!

As for family history. At this point, it makes no difference if your insurance company finds out- (since they already know you have BC), but you can get the BRCA test (blood sample) sent off to see if you are a genetic carrier of BC. If so, it might help you make decisions regarding your future treatment and especially for your daughters (if you have any).

You will likely have your MUGA right before you get the Herceptin. You will have approx 2 weeks between chemo and rads to get scans. There is ample time there to get anything else for "baselines". Perhaps your onc can give you a "schedule" of follow-ups and scans. You should see your radiation oncology person soon to get acquainted and see what he/she will need for radiation treatments. I had whole body bone scan, PET of abdominal area, breast MRI (one tumor was visible on ultrasound and the other two tumors were only visible via breast MRI, --------mammos did not show a thing------ I have dense breast tissue, do you?

Anyway, sounds like you are in charge of your treatments, write down your questions as the day goes on and you will have plenty to talk about when you see your doc.

Best of luck to you!

maria

Donna,
Just wanted to let you know -you are not alone on the no scan issues. I'am also stage 1, just finished chemo. My onc. does not do testing unless problems present .Personally I did not feel comfortable with this, and have just recently insisted on a spinal MRI.I also had neg. nodes, but have been told even so there is a 20% chance of metasis. I do not understand why they do not test with a her 2 diagnosis.At any rate, I explained to my onc. that I needed this scan to reduce the severe anxiety I was feeling.
If you are uncomfortable with the onc.'s decision insist on the scans - You have a right to be proactive in your treatment.I'am currently still waiting on results, but glad I will have my ansewer.Best of luck to you.
Michelle

Thanks so much ladies for your rapid responses. I will be aggressive oh I mean assertive when I meet with my onc on Thursday. I am having a hard time with this dx as it came out of the blue. Guess this is everyone's story. At some point I guess I'll become used to it and start to move forward. I noticed that when I speak about bc I refer to myself and being dx with bc not that I have BC. That will change in time.
Thanks again, this site is invaluable.

Donna, for what it's worth, I've made a point never to say "I have cancer", but "I am fighting cancer". Everything positive and empahatic that you can put into your subconscious helps win the battle! Hugs, Tricia

Michelle,

You say that your oncologist does not do testing unless problems present. Do you mean that he only tests if you have symptons ? I think i read somewhere of someone that made up some sypmtons, or better yet exagerated her symptons for the dr. to take her serious, and i think it worked too and she got the tests done. I always learn something new in this web-site, its very inspiring, i admire the ladies here still have their sense of humour !

As I always type on this site, besides scans, worry first about where your tumor markers are...get base lines for both your CA 27/29 and your serum Her-2, then INSIST that these numbers be checked regularly...although they are NOT fullproof by ANY means...they will certainly alert you should anything start going on...the argument is always what indicates spread first the PET/MRI/CT chicken or the Blood marker eggs??? IN my experience 100 times out of 100 times, the blood markers have indicated disease progression way sooner than any scan..., but every body's biochem is distinct, but if you don't start testing your markers now, you won't have anything to compare them with later when YOU MAY REALLY NEED THEM...also, pay close attention to your regular CBC and blood chemistries... Often, in her-2 cases, esp, elevated grans on the CBC and low lymphs are early warning signs of upcoming problems. Likewise, watch your liver enzymes, (esp. the GGt), and keep a close watch on your ALP... elevated liver enzymes can indicate (but not always mean) liver mets... high ALP is often an indicator of bone mets...FYI, Gina

PS. since you are relatively new to all of this ... another tip I enjoy sharing is to get a 3" to 4 " 3-ring binder from STaples or Home Depot and fill it full of plastic 3-ring page protectors... Then, gather all the PAPERS you have about your case into the binder in chronological order and then, following each onc appointment put a copy of the questions you asked and your notes of what the onc said along with your patient copy of CBC and other scans and blood work..also note any supplements your are using or any diet changes. .TRUST me...the PROUD owner of 8 of these over-stuffed binders, at some point in the not too distant future you will be thankful that you did this. Another trick is to make one or more copies of EACH page before you put them into the page protector. That way, you can pull out a copy of say, a questionable bloodwork result and send or give it to your onc or other interested party without losing sight of the ORIGINAL...TRUST me...this one tip can be a life saver. Also, if down the road, heaven forbid, you need to file your case in triplicate for social security or work disability, you will have a lot of the work already done. Cheers, Gina (DX '97/mets '99)