Please help me to understand all this crap

geogal · February 2011

Let me start by saying, I know that you all are not doctors, but I am not seeing my surgeon for at least another month and my onco doesn't seem to want to commit to what the plan for my surgery is. I haven't really looked at all my test reports till now and would like some answers. Also my onco also says she can't give me a stage because I am having chemo first (8 more weeks left). Okay, last question, If I have to have a MX, the Onco says she won't approve reconstruction for at least a year to a year and a half after radtiation, I thought this seemed excessively long.

***BREAST PANEL PROGNOSTIC MARKERS***

ER = 74%

PR + 84%

HER2NEU 3.6

Does this mean I am triple positive? Next is some verbage from my PET scan

THorax:

In the left breast medially there is an area of hypermetabolic activity with with PET CT image fusion localizes to a 2.6 cm ill defined breast density.

The above is the tumor they found, but what is this below, Is this another one, I never knew I had two???!!!!

Adjacent to the larger focus of hypermetabolic activity just lateral is a smaller focus of realtive mypermetabolic actility which with PET CT image fusion is retor areolar and corresponds to a density measuring 1.8 cm.

Next, I though I only had one questionable lymph node, does the below mean that I have three in question or is it definate???!!!!

In the axilla there are 3 adjacent low intensity foci of metabolic activity, the largest and most intense corresponds to a 1.5 cm lymph node. The remaingin 2 respectively localize to a 0.7 and 0.8 cm lymph node.

Impression:

1.) Hypermetabolic activity associated with the left breast densities, as described above, these are just medial to the areola and are most consitent with activity associated with a malignancy/patient's known breast cancer.

2.) Three adjacent left axillary lymph nodes with low intensity hypermetabolic activity considered highly suspicious for activity associated with malignancy/metastatic breast cancer.

Thanks for your help

mtndawn · February 2011

Not an expert, here, but I'll give this a shot.

It sounds like you have a multi-focal malignancy. It's not uncommon, I had two as well. As to the nodes, it sounds like they are seeing three likely malignant nodes, but the increased uptake CAN be from something else, like an infection (I think). I had several, it didn't list a number, just several. I also did neoadjuvant chemo. At time of surgery, there was no evidence of malignancy in either the nodes or the breast tissue, but I was staged IIIa because of confirmed lymph node involvement and size of tumor. But you're not asking about me! Your numbers say triple positive to me.

As far as recon, I'm surprised the onc would make you wait so long. Lots of people do immed recon. If you will be doing rads, I don't think you will have the option of just doing implants later. I think you will have to do some kind of flap procedure. I could be wrong, but that is what I gather from my ps. If doing rads and you want just implants, you have to do an immed recon. Of course, I'm not telling you that you should go against what your onc says, but you need to know what your options and limitations are.

Good luck! I'm sure someone else will reply who has lots more knowledge than I do.

lago · February 2011

To add to metndawns reply

Yup you are triple positive. Good thing is there are several treatments you can get (herceptin, hormone suppression therapy) along with chemo and surgery. They also can't always tell for sure how bit your tumor is until surgery. Getting chemo before you might never know. Good thing about getting chemo before though is you will know if the chemo is working.

You should be talking to a PS anyway before surgery/radiation. I assume you don't even know what kind of surgery you will get. If you go the way of implants you can (and most likely will) have more complications with rads but it is not impossible. There are a couple of thoughts one this. Some say wait and others want to place the TE as surgery and fill you completely before rads. Either way with radiation you will have to wait at least 6 months, a year is better. The longer you wait after rads the better is what I have read but you really need to be meeting with a couple of PS to get their opinions. Like you said we here are not MDs.

Good luck with your treatment. Keep questioning when things don't sound right. Also check out the triple positive thread:

TRIPLE POSITIVE GROUP
http://community.breastcancer.org/forum/80/topic/764183?page=1

flash · February 2011

yup, they're right, you're multifocal and triple positive. Just remember, triple positive is now a good thing because of herceptin. It sounds like your docs are pretty standard. Now is the time to get a second opinion if you feel you need one and also to change docs if you don't feel that you connect well with your docs. You need to have full trust in the onc and bs that you use. It really will get better once you start treatment and feel like you have some sort of an active plan. Good luck. The neo adjuvant may make it that you don't have to do mast and can do just a lump with rads. They are trying to preserve as much of your breast as they can. Hugs.

Ellie1959 · February 2011

My experience was to do immed. reconstruction with BMX - and then when I finished Chemo they told me I had to have radiation and it really messed up my implants. I don't know why they encouraged me to do implants without knowing whether or not I would need radiation. My Onc didn't spring that on me till my last chem tx. So, I had to have the implants removed and do a tram-flap. Good Luck!

Please help me to understand all this crap

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