Not the Phone Call I Wanted

MaggieCat

Greetings!  I posted here several years ago.  Back then the path report from a lump was negative. I was worried and got wonderful support here!!!   Call from my wonderful doctor this evening .. path report (different breast) shows cancer this time.  I'll start reading up on some new things...Oncotype DX to start!    Will know more about the particulars this Monday.  For now, grade 2, ductal, ~ 1 cm... she thinks it will be Stage 1.  Would appreciate any thoughts... what do I need to think through before the strategy meeting with my surgeon on Monday????  Maggie

desertgirl947

I had a real problem on my

I had a real problem on my left side (ended up being Stage IIIA) and really had no choice about what to do about course of action IF it was important to me to try to get the best outcome possible.  The right side showed early signs of cancer (ended up being either State 0 or 1), a different type than in the left.  I decided that I really did not want to have to go through all of this a second time, something I thought could happen if I just opted for a lumpectomy. 

So, my Stage IIIA meant that I needed not only a mastectomy but also chemo and rads.  My Stage 0/1 meant I might solely need a lumpectomy.  I opted for a double mastectomy ....... no reconstruction.

Not too enlightening here, but I hope it gives you some things to consider as you make your decisions about treatment.

 

e

mamaxs2

I had Stage 1, but lobular,

I had Stage 1, but lobular, grade 2, 1.6 cm.  I was BRCA+, so opted for double mastectomy with reconstruction based on my high score.  However, my Oncotype fell into the low grey zone, so now, my decision is to either have or not have chemo.  My benefit would be possibly only 3%.  Wondering if that is worth the risks???

Puffin2014

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.

Lilly9

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 feel one of the most

I feel one of the most important things to consider is your team of Dr's.   Do you feel comfortable and confident in their abilities and treatment options.   There's nothing wrong with a 2nd opinion.   I was completely comfortable with my oncologist.  He took the time to explain my cancer, my options and choices.   At one point I asked him - if I was your wife or daughter what would you suggest.  He told me and my husband and I both agreed that we felt that was the road I needed to travel.  

 

I was diagnosed with Invasive Ductal Carcinoma Stage 3 w Positive Nodes.   I had a mammogram in June and the following January is when I was diagnosed.  My tumor was 8.5 cm.  I felt sure that they'd just missed it in June but after them showing me my slides I came to believe otherwise.   This cancer is very invasive.  Yours has been caught early.  That's great in itself!  I chose to have a bilateral mastectomy.  I had 8 rounds of chemo, then surgery followed by radiation.

 

Shortly after my diagnosis my sister had her normal mammogram - they discovered a spot and sure enough it was ductal carcinoma in situ - the precursur to invasive ductal.   After talking things over with her Drs, Surgeon she chose a double mastectomy    She did not want to worry each time she had a mammo or worry in between.

Ask about the recommended course fo treatment.  I would want an ultrasound of both breasts as well.

 

Keep us posted

disneyfan2008

thinking of you

thinking of you

GlowMore

Know You Are Scared

With you in Spirit Monday...........praying for Positive Plans.......Hang in There....

Pixie Dust

You can be sad and you can be happy

Maggie, I am very sad about your BC. It is a worry for us all. We are never happy about finding out about BC.  But one thing you can be happy about is they caught it early. It only been 1 cm and grade 2 and thinking it is Stage one this is wonderfull. You have had angels around you girl. Puffin has described to you above the right protocols to take . Read them, write them down or print them. Our cancer is the same except I had a BMX and she did not. She is a RN and has taught medical school for students. Puffins comment is above mine and she has explained it exactly what will be done. Please let us know how you are doing and all of the pink sisters here are with you in getting well soon. (HUGS)   Pixie

 

MaggieCat

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 All the Good Information !

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

 

MaggieCat

Pixie Dust said:

You can be sad and you can be happy

Maggie, I am very sad about your BC. It is a worry for us all. We are never happy about finding out about BC.  But one thing you can be happy about is they caught it early. It only been 1 cm and grade 2 and thinking it is Stage one this is wonderfull. You have had angels around you girl. Puffin has described to you above the right protocols to take . Read them, write them down or print them. Our cancer is the same except I had a BMX and she did not. She is a RN and has taught medical school for students. Puffins comment is above mine and she has explained it exactly what will be done. Please let us know how you are doing and all of the pink sisters here are with you in getting well soon. (HUGS)   Pixie

 

Initial Plan - HER2NEU (3+)

Met with my breast surgeon this afternoon.  Her2 3+.   "CD10 shows absense of myoepithelial cells around the infiltrating carcinoma."  Told that genomic testing not likely to add any insight given the 3+.  The CD10 statement gives a glass 1/2 full view on what we may find with the Sentinel Node Biopsy.  Going with a lump removal approach with the hope for clean margins on the first pass.... the glass is almost 3/4 full as I view things at the moment!  Tomorrow scheduling the surgery, going in to have the right breast mammo'd so both have been viewed again, oh and must get to my Yoga class!!!  Have lots of questions to ask of you.  For the moment I am relaxing and heading for bed.  Sleep has been broken for the last few nights and really hope to make it all the way until the morning!  Good night all!!!  Maggie

TechMama

MaggieCat said:

Initial Plan - HER2NEU (3+)

Met with my breast surgeon this afternoon.  Her2 3+.   "CD10 shows absense of myoepithelial cells around the infiltrating carcinoma."  Told that genomic testing not likely to add any insight given the 3+.  The CD10 statement gives a glass 1/2 full view on what we may find with the Sentinel Node Biopsy.  Going with a lump removal approach with the hope for clean margins on the first pass.... the glass is almost 3/4 full as I view things at the moment!  Tomorrow scheduling the surgery, going in to have the right breast mammo'd so both have been viewed again, oh and must get to my Yoga class!!!  Have lots of questions to ask of you.  For the moment I am relaxing and heading for bed.  Sleep has been broken for the last few nights and really hope to make it all the way until the morning!  Good night all!!!  Maggie

Good luck with the surgery

Good luck with the surgery and the biopsy!

Just wondering if they did a second look MRI + Ultrasound?  I am not sure if it was because they said I had some dense breast tissue, but my surgeon asked for the MRI + Ultrasound, the insurance company approved it, and through the MRI they found 2 more spots.  That actually changed my thinking from lumpectomy to mastectomy.

MaggieCat

TechMama said:

Good luck with the surgery

Good luck with the surgery and the biopsy!

Just wondering if they did a second look MRI + Ultrasound?  I am not sure if it was because they said I had some dense breast tissue, but my surgeon asked for the MRI + Ultrasound, the insurance company approved it, and through the MRI they found 2 more spots.  That actually changed my thinking from lumpectomy to mastectomy.

MRI Did Get Discussed

Thanks TechMama!  MRI was discussed. I was advised it was not needed... breast density isn't an issue (2 and 3) not 4.  I will revisit pushing for an advanced technique look if there is an issue found with the right breast this morning.  

If the Sentinel nodes are affected OR clean margins aren't achieved in the first surgery I told my wonderful surgeon we'd re-group on how much tissue to take.  If I am determined to be "really" at Stage 1a, I am comfortable with lump removal... 

My priority is to get the disrupted tumor tissue remaining from the 10/15/14 needle core biopsy out asap....

MaggieCat

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.

Preliminary Radiation Discussion

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.... ....

Puffin2014

MaggieCat said:

MRI Did Get Discussed

Thanks TechMama!  MRI was discussed. I was advised it was not needed... breast density isn't an issue (2 and 3) not 4.  I will revisit pushing for an advanced technique look if there is an issue found with the right breast this morning.  

If the Sentinel nodes are affected OR clean margins aren't achieved in the first surgery I told my wonderful surgeon we'd re-group on how much tissue to take.  If I am determined to be "really" at Stage 1a, I am comfortable with lump removal... 

My priority is to get the disrupted tumor tissue remaining from the 10/15/14 needle core biopsy out asap....

Lumpectomy and radiation

Radiation isn't a choice after lumpectomy, even if nodes are clean and margins clear. Removing the area with lump can seed cancer cells in the breast as it's removed, it's either a mastectomy, or lumpectomy with radiation. There are parameters to meet before Canadian model of rads can be used - must be estrogen+, postmenopausal, depends on tumor characteristics.

I was a Stage 1a too, but onco showed it was still an aggressive type. Praying for the best for you.