Chemo Questions

Mom2Sarah

So my wait for answers has been prolonged. Ugh! Someone at my breast surgeons office dropped the ball and the oncotype test wasn't ordered, so I'm looking at another week before I have the results. My boss is pushing me to get a second opinion, his wife had a huge scare and he lost a nephew to cancer. He wants me to go to MD Anderson and we're in St. Louis. And like I have that kind of money! But my primary doctor and oncologist are already telling me that they don't think I will need chemo. I'm 48 and was a stage 1, HER2 negative, estrogen/progesterone driven, lymph nodes were clear, tested negative for ALL 46 genes and I had a BMX almost 4 weeks ago. But my maternal Grandma had breast cancer (survived) and I lost my maternal Aunt to breast cancer last August. Even if my oncologist says no to chemo and straight to Tamoxifen, how do you know that's the right choice? And if I say I want chemo, will the oncologist agree to that? I'm sure the biggest thing is to wait and see what that score is, but can one push to have chemo? Is it the right choice? Or do I just get a second opinion? You all know, everyone has an opinion on this and I just want to do what is best for me and family. I just want to kick it, kick it right the first time and to never, ever have to look back!

And one last question...…. how do they test the tissue? Is my tissue or tumor in a container just sitting on a shelf with my name on it? I am so confused and just wish I knew!

gb2115

Hi Mom2Sarah---

I think you can never really know if something is the right choice, you just make the best choice you can with the information you have at the time. Standard of care is generally based on the results of the Oncotype test (or in my case, Mammaprint, which is different but similar). Especially with negative nodes, if your Oncotype indicates you won't benefit from chemo, they'll probably recommend you go straight to tamoxifen. I had one positive node, but my Mammaprint results indicated that chemo would only reduce my risk of metastatic recurrence by like 3%, so my oncologist recommended against it. It was a choice that worried me at the time (like what if I really needed it but didn't get it), but in hindsight she was trying to spare me from a lifetime of damaging side effects that were more likely to happen than the 3% extra risk of the cancer returning.

I think, also, I read somewhere that tumors that turn out to be low Oncotype and low Mammaprint are the kind that don't respond well to chemo...so giving it in those instances is a whole lot of treatment for something that doesn't work very well. I think I read that....I hope that's accurate.

It's hard though---these are tough decisions. Once you get your oncotype results back, then you can have a better conversation with the oncologist about your choices. Make sure you tell them that you are worried about not making the right choice...they will probably know the best way to calm your fears on that.

And about your tumor tissue---I believe that the pathology department of wherever you had surgery keeps a sample of your tissue on hand. I don't know how much they keep or for how long they keep it, but they do for some time. I had my Mammaprint test ordered about a week and a half after my surgery, so my hospital had kept my tissue as well. I'm sure there's some sort of time period that's standard.

Definitely let us know what happens!!!

Ingerp

I'm not a big believer in second opinions unless you have some reason not to trust your medical team. I did my research and knew what treatment would be recommended before I ever met my MO. It'll be easier for you to think about this after you get the results of the Oncotype test. I'd try to put it out of my head until then.

Mom2Sarah

Thank you ladies! And let me add, I was aggressive out the gate with my treatment. My breast surgeon said something about lumpectomy and I cut her off immediately and said, nope! Take them both. I'm not doing this again. You know it is, everyone has an opinion and you know what they say about those... Haha!

Mom2Sarah

And let me add...… I have a wonderful team of doctors! I trust my primary care doctor completely and my surgeons are fantastic. I have no reason to NOT trust them.

Ingerp

That's really good, Mom2Sarah. In that case I'd wait to hear what they recommend and go with that. (In the meantime binge watch something on Netflix!)

Runrcrb

i agree with Ingerp’s advice. If you trust your team and ask for all the information you need to make a decision then you will be comfortable with it. If you don’t have lymph node involvement and your oncotype comes back low, the likelihood that chemo will help you is low. That is actually where the oncotype/mammaprint tests came from - studies of thousands of women like us. My oncotype was low but by the time I found my cancer it had spread to several (4) lymph nodes. I talked to my BR, MO and RO before agreeing to chemo. I looked at chemo as killing any remaining cancer cells that had escaped my breast. If none had escaped I would gladly have skipped that step in the treatment process.