Not the Phone Call I Wanted

Puffin2014 said:

next steps

So sorry you're back to these discussion forums under these circumstances. I was diagnosed in May with invasive ductal stage 1 grade 2, tumor 1 cm, clear margins and no lymph node involvement. Had a lumpectomy. Oncotype score was 27 so had 4 rounds of chemo (taxotere and cytoxin), and started 3 weeks of radiation this week.

You won't have an oncotype score until after your surgery - the tumor has to be at least a cm to do the test, they need that much to send away to be tested. It takes about 3 weeks to get the results, waiting is terrible. The test is scored from 0 to 100, if your score is 10 or less, no chemo needed. If it's 30 or more, chemo given. It's that gray area in the middle that's the bugger. My score of 27 was high enough that even though it was in the grey zone it was high enough that there still wasn't any decision to make. 

Pathology report will also include information on whether your tumor was estrogen +, progesterone +, and HERS+. There are additional treatment options available if they're + (they can give anti-estrogen meds - tamoxefin if you're premenopausal, arimidex if you're postmenopausal) and can give herceptin if you're HERS+. If all 3 are negative, then the cancer is called a Triple Negative, and treatment options are only surgery and chemo, or if you have a lumpectomy, then radiation is also part of the plan.

So, your decision for now is to discuss with surgeon mastectomy vs lumpectomy. I'd ask about having an MRI of both breasts to make sure nothing else is going on that wasn't picked up by mammogram (my Dr insisted I have one), especially with your past history of lump in other breast. My surgeon told me the reoccurence rate for a mastectomy and a lumpectomy with radiation were about the same, just 1 or 2 percent difference. I chose a lumpectomy, and met the criteria for having the Canadian model of radiation of 3 weeks instead of 6 (postmenopausal, estrogen +, small tumor, no lymph nodes, smaller breasts).

Besides this web site, I'd also recommend you read the material at breastcancer.org and check out their Discussion Forums as well. That's the web site my oncologist recommended using, she said it's research based and reliable. Be very careful about randomly searching the internet for answers, there's lots of misinformation out there. When you find a forum you like at breastcancer.org, be sure and mark it as a favorite so you can easily find it again, and see when new responses have been added. I started out following the Lumpy forum, then the July chemo forum, now am following the Fall Rads forum, and this weekend plan to start looking to see what's available for Arimidex forums to help me make my list of questions before I see onc on Thursday.

Take some slow deep breaths, knowledge is power, and everything doesn't have to be decided right away.

I gained alot of insight reading all of the comments both here and in other threads!

Puffin2014 said:

next steps

So sorry you're back to these discussion forums under these circumstances. I was diagnosed in May with invasive ductal stage 1 grade 2, tumor 1 cm, clear margins and no lymph node involvement. Had a lumpectomy. Oncotype score was 27 so had 4 rounds of chemo (taxotere and cytoxin), and started 3 weeks of radiation this week.

You won't have an oncotype score until after your surgery - the tumor has to be at least a cm to do the test, they need that much to send away to be tested. It takes about 3 weeks to get the results, waiting is terrible. The test is scored from 0 to 100, if your score is 10 or less, no chemo needed. If it's 30 or more, chemo given. It's that gray area in the middle that's the bugger. My score of 27 was high enough that even though it was in the grey zone it was high enough that there still wasn't any decision to make. 

Pathology report will also include information on whether your tumor was estrogen +, progesterone +, and HERS+. There are additional treatment options available if they're + (they can give anti-estrogen meds - tamoxefin if you're premenopausal, arimidex if you're postmenopausal) and can give herceptin if you're HERS+. If all 3 are negative, then the cancer is called a Triple Negative, and treatment options are only surgery and chemo, or if you have a lumpectomy, then radiation is also part of the plan.

So, your decision for now is to discuss with surgeon mastectomy vs lumpectomy. I'd ask about having an MRI of both breasts to make sure nothing else is going on that wasn't picked up by mammogram (my Dr insisted I have one), especially with your past history of lump in other breast. My surgeon told me the reoccurence rate for a mastectomy and a lumpectomy with radiation were about the same, just 1 or 2 percent difference. I chose a lumpectomy, and met the criteria for having the Canadian model of radiation of 3 weeks instead of 6 (postmenopausal, estrogen +, small tumor, no lymph nodes, smaller breasts).

Besides this web site, I'd also recommend you read the material at breastcancer.org and check out their Discussion Forums as well. That's the web site my oncologist recommended using, she said it's research based and reliable. Be very careful about randomly searching the internet for answers, there's lots of misinformation out there. When you find a forum you like at breastcancer.org, be sure and mark it as a favorite so you can easily find it again, and see when new responses have been added. I started out following the Lumpy forum, then the July chemo forum, now am following the Fall Rads forum, and this weekend plan to start looking to see what's available for Arimidex forums to help me make my list of questions before I see onc on Thursday.

Take some slow deep breaths, knowledge is power, and everything doesn't have to be decided right away.

Thanks for the help Puffin2014!!!  great summary of things to consider!  One day at a time... 

I will head over to the Fall Rads forum soon.  I am not comfortable with 6 weeks of radiation IF we achieve clean margins and find clean Sentinel nodes.  Will have to learn how to navigate in that arena... Canadian model, etc.

Focus yesterday (before path results were in my hands) was on the differences in genomic assays - Oncotype DX and the Symphony suite.  Called Agendia (Symphony/Mammaprint) and talked with them. Decided their assay was the one for me.  Then I find out ER-, PR-, HER2+ (3+) answers the question.

Had the meeting with my surgeon (been with her for many years, breast surgical specialist).... then met with my FNP to review current nutritional approach given this new "opportunity".  Decided to change up my iodine supplement from kelp flakes to Biotics iodine pills.

Another dawn.... ....