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Radiation or No Radiation?

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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2017 at 9:53pm
Tulip09,

I'm so sorry you are fighting this again.  Was it in the same breast as in 07?  If you click on the NCCN guidelines, you will see for 1 to 3 affected lymph nodes, the recommendation is to strongly consider treating the chest wall + these sites:

Axillary sites at risk for cancer,
Supraclavicular and infraclavicular areas, and
Internal Mammary lymph nodes.




DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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tulip09 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tulip09 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2017 at 10:10pm
Thanks for the reply,  This time it is the opposite breast almost 10 years later. I am also genetically negative.  I had a mastectomy on the right side the first time after ACT chemo.
I hope I never have to go through this again after 18 chemo's this time but I also want quality of life.  
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2017 at 11:11pm
Tulips,

I totally understand.  What was the size of the tumor?  What stage?  You can get opinions and research and then just make the best decision for you.  I will tell you I feared radiation the most when I had my recurrence.  I had already completed the reconstruction surgery from the bi-mastectomy with silicone implants.  I ended up getting 40 radiation tx as they hit the breast area, axilla, all regional nodes with emphasis on the internal mammary nodes where I recurred.  I don't notice any lymphedema in my arm, but on occasion get some truncal swelling or soreness, usually on the side under my armpit.  
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2017 at 11:15pm
Tulip,

Were you tested for other genes besides the BRCA gene?  They are now finding additional genes that contribute to a higher risk of breast cancer.  Here's a link to a genetic panel test, the genes and associated cancers.  



DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote tulip09 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 03 2017 at 12:37am
123Donna,

It is so helpful to hear from someone who understands and know that I am not alone with my fears. My tumor was just under 3 cm on PET scan.  I was a stage 2 grade 3.   The same as I was the first time except last time I did not have any positive nodes and my tumor was smaller, 2.3 cm.  I have had stage 1 lymphedema  to the R arm but it was caught  early and was able to reverse it before the proteins were laid down.  They retested my genetics with the pre-markers for BRCA and other genes which were all was negative.  I think I am going through the bargaining stage of grief with this decision as I was afraid of rads the first time as well, but didn't have to have it with the first mastectomy.  This time I know I need some radiation and trying to balance the pro's and con's
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 03 2017 at 12:13pm
Tulip,

For me, I knew I had to get radiation because they could not surgically remove the internal mammary nodes.  They feared it had spread further since they believed those cells had been there since the original diagnosis.  Even though chemo got me to NED, as with the initial diagnosis and MRI, they just can't pick up small individual cells on scans so they hoped radiation would mop up any remaining cancer cells.  I worry about the long term damage from the radiation.  With this terrible disease, we just have to make the best choices at the time.  
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote tulip09 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 03 2017 at 1:13pm
123 Donna,
We are really caught in horrible positions with no great choice. Either way they are potential issues.  I had  a complete response and they didn't find anything beyond the one node, but as you say there could be microscopic disease.  They say my risk is 5-10% with no rads but willing to do chest wall and possibly will say yes to below collar bone then at least if lymphedema happens they can move the fluid to the nodes in the neck.  I have a couple of weeks to sit with making a decision as I still have fills to the expander and deal with cording before they can do the markings for rads.
Thank you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vina Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2017 at 4:15pm
i just had my bilateral mastectomy direct to implant after AC and Taxol chemo.  My tumor was stage 2, grade 3. my lymph nodes were clear, my tissue around tumor came back clear and the other breast clear.  the pathology report showed it to be a residual tumor ending in the size 3.3.  They want to for sure to more chemo in the pill form. And I fall into this grey area of doing radiation.  I am very concerned about doing it, and kind of sick of doctors acting like its no big deal.  If there is no data showing and proving that radiation will help it not come back, should I do it?  Im frustrated because I would have gotten expanders had I known I was going to have radiation.  But they purposely didnt because it wasn't in my lymph nodes.  Soon after I was in relief and joy I was sadly disappointed my journey was far over. I dont have a clue what to do.  
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2017 at 4:21pm
Vina,

It can be overwhelming at times trying to make all these decisions.  You might want to consider getting a second opinion.  It may help you make a decision you are comfortable with.

Here are a couple of links to look at:

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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vina View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vina Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2017 at 4:39pm
i am at two different hospitals, and they both say different things.  My oncologist says its not necessary, and my surgeon says I should consider.  Going for a third opinion this week

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Tenley View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tenley Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2017 at 8:54pm
Hello everyone. I just recently joined this group and I am very excited to have this group. My husband actually thought everyone on here was very nice, educated, and supportive! I am looking for advice regarding radiation as well. Here is my story thus far and really the question is do I go ahead with radiation or forego it? 

- Diagnosed at 33 y/o; turned 34 in August; Stage 2B
- Finished AC/Taxol x 2, Carbo x 2 (dc'ed due to severe neutropenia)
- Bilateral mastectomy 10/26/17
- Will undergo reconstruction 
- Path report showed only 3mm of residual disease, clear margins, 0/5 lymph nodes, calling it pretty much a pCR but technically now I'm Stage 1A
- Radiation Oncologist is pretty much saying all the data is mixed as to whether or not I need radiation at this point....

Anyone in the same boat? 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Moody88 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 02 2018 at 5:12pm
Vina and Tenley,

Did you decide to go ahead with radiation ? How did you come to your decision?
I’m stuck at this point and not sure what to do and don’t have much time left to decide.
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Tenley View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tenley Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2018 at 3:05pm
Hello ladies,

I am at Penn and went to MSK about a month ago for a second opinion. The doctor there basically agreed with my original plans which were Xeloda x 6 months followed by radiation. I did not have a pCR but I came very close. Due to this factor and given my age (34) I figured "do everything now so i hopefully never have to deal with this craziness again". it's such a big decision when you fall in the gray area, which I think many pple do they just probably don't post on these forums. you often see the best and worst case scenarios which is not the majority of us! be happy with whatever decision you make because you've made the best one at the time ;) no regrets!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2018 at 4:29pm
Tenley, what did you do about reconstruction, since you opted to do radiation? If you don't mind sharing.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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