Good Questions to ask an oncologist

[alicem]

I am meeting with my oncologist tomorrow to decide upon my chemotherapy regimen/treatment. I have come up with a pretty good list of my own but was wondering if you wonderful women out there have any suggestions. I am a bit scared because of my Oncotype score -- 60. I have not seen anyone here that has that high of a score. Also, the Dr. is telling me that I can do either AC-TH or TCH. Is one better than the other?

DCIS , non-invasive - 9/22/08
ER +, PR+
lumpectomy - 10/15/08
hysterectomy, oopherectomy - 10/15/08
2 nodes removed - negative
only one of six clean margins
Mastectomy/ DIEP reconstruction - 12/11/08
Invasive cancer found, 2 cm
Her2+++

[Becky]

There is another tumor test you can use to determine if you should take AC followed by TH or TCH. That test is the Topo 2A test. In about one third of Her2+ cases, Topo 2A is also overexpressed (because this gene lies very close to the Her2 gene on the chromosome). It has been noted that adriamycin (the A in the AC part) works very well at "killing" cancer cells that are Topo 2A positive. However, regardless of pathology testing, many, many studies corelation results that show that either chemo regime works very well against the disease. In Europe, they use a much wider variety of chemo drugs and as long as Herceptin is also used (if Her2+) the outcome is better. So really, getting the Herceptin is key.

Other things to consider is that adriamycin is hard on the heart and Herceptin can be hard on the heart (for 4% of the people who receive it) so that regime may give a double whammy if you have heart problems to begin with. Secondly, when they compared women who got AC followed by TH vs TCH, there was also a notable % (can't remember the % exactly but I know it is between 1% - 4%) get acquired leukemia from the chemo with the AC regime but no cases in the TCH regime. That is another consideration and question to ask.

Don't worry about the oncotype dx testing. They are not really sure how it fits in with Her2+ or triple negatives as it is more aggressive cancer BUT that's what chemo kills best and Herceptin works great. My pathology is alot like yours - 1.9 cm tumor but POSITIVE nodes and I am here and fine almost 4 1/2 yrs out. You will be fine.

Stay tuned with us and we will answer your questions as you go through this journey if you need us.

PS - you will lose your hair with either chemo plan unfortunately.

[BonnieR]

I had the TCH regieme. It seemed the treatment of choice. I dont recall being given options. I have heard that AC is a bit rougher to tolerate but I am no expert.
The best thing to do is have your onc outline the pros and cons and his/her reasoning. And have someone else with you to help hear the answers!!!
A Becky said, you will probably have alot more questions for us once your treatment plan is in place and running. We will be here for you.

Thanks Becky and Bonnie. Yes, my husband will be there with me to help digest all the information. I am 52, and quite active (triathlons, 10k's, etc.) and I am just concerned about possible damage to my heart. I have an excellent oncologist and I know I can trust his judgement. Tonight I just have a case of the nerves in anticipation of tomorrow.

I am really glad I found this Group, from everything I have read, you are all so knowledgeable and caring.

[BonnieR]

Alice, they will do a baseline cardio test prior to chemo and will monitor you with tests about every 3 months while in treatment. Actually, we are watched pretty carefully the whole time.
Of course you have anxiety. We have all been there and have come out on the other side. You will too.
I will add that I got more than one opinion about what treatment to persue. It turns out that they were all different BUT each discussion gave me more clarity and contributed to my decision to have chemo. When I said earlier that I was not given options I meant to say that once I decided to do chemo, I was not given options about the drugs
Keep the faith.

[schoolteacher]

Alice,

My diagnoses is very similar to yours.

I had neo-adjuvant chemo to shrink my tumors. I did two treatment of AC and it did not work. If I had it to do over, I would have taken the test Becky is talking about. I did not find this board until February of last year.

When the doctor realized that the AC was not working, he put me on Herceptin and Taxol that day. I had some cancer nodes on my skins, and by Saturday the Herceptin had made them disappear. I could feel the Taxol and Herceptin attacking my tumors that Saturday night. That was the best pain I have ever had in my life because I could tell it was destroying my cancer. I did my Herceptin weekly until I had my masectomy.

I did 4 treatments of TH and had my masectomy in April of 2008. I had five weeks of radiation from May to June.

In July, I started another round of chemo. This time the chemo was Taxotere, Carboplatin, and Herceptin. I had to do six treatments, and I finished these in November. I started taking Herceptin every three weeks in July, and I am still taking it. I plan on staying on Herceptin for at least another year since I also had BC in my L4 on my spine.

Also, I just started taking Tamoxifen in December. There is a test to see if your body will metabolize this drug too. I also learned about it from this board. I requested the test before taking the drug.

I have been NED since April 16, 2008.

Please let us know how you are doing.

Amelia

[alicem]

My appointment went well. My oncologist patiently answered all of my questions (that I have right now!) and was with us for almost an hour. I will be starting the TCH regimen on tuesday, 1/20. After discussing my Her2+++ status, I learned that Dennis Slamon was his boss before he came to TX. Considering all that has happened over the last 5 months, I am happy to have found him and at peace knowing that I am in very good hands.

There is a confusing aspect to my situation. My biopsy report, lumpectomy and mastectomy report ALL showed that I was ER+ and PR+. The oncotype test however determined that I was ER- and PR-. How can that be? He is investigating this further, but just thought I would ask you all. I am going to start a new thread about this to see if anyone has any thoughts.

[Becky]

The hormone status of your tumor is very interesting. First, does your pathology report tell you how positive your tumor is. For example, my tumor was 50% ER+ and PR negative. You will see other women's "signature" on this board that say similar things.

That said, I would suspect that you may not be strongly positive. The % ranges for low positive (10% - 40%), moderate (40% - 70%) and high is above 70%. Anything below 10% is considered negative but I have heard that that is changed now and that anything below 5% is considered negative.

So let's take me for example - especially that I am truly PR negative anyway. Oncotype DX did not exist when I was diagnosed but if it did, the test (which looks at genes - or a molecular assay) would probably say the same thing for me. That is because when I went to the San Antonio Breast Cancer Symposium in 2007, there was a paper where the researchers looked at what a pathology test said a woman was (lets say ER+PR+) and then they looked at a genetic "blueprint" of the tumor. When you do thousands and thousands of these, you get to see what the "picture" of a ER+PR+ tumor looks like chemically. Same for ER-PR- and ER+PR- etc. The bulk of the paper had to do with tumors like mine (ER+PR-) and that some chemically look like ER+PR+ but some look ER-PR- and that there are some that are truly unique and would actually be ER+PR-. However, there were a certain % of tumors that were ER+PR+ or ER-PR- that actually looked like the reverse in this chemical assay. Perhaps you are like that and perhaps this happens more frequently if a woman is not very highly hormone positive. This might be because my 50% ER+ really means that the pathologist saw that 50% of the tumor cells had estrogen receptors on the surface but 50% did not. However, is there one cell over another that dictates which line is more expressed?

I would pursue an answer to this question. It will not influence your chemotherapy but it would influence getting an antihormonal (Tamoxifen, Arimidex, Femara or Aromosin) after chemo and (maybe) rads are done.

I hope this helps you get your hands around this alittle better. At first, this seems complicated but you will learn more than you ever thought. However, this helps you ask questions and make sure the right things are happening. Your tumor behavior sure is interesting. Let us know how your onco pursues this interesting information.