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Radiation or No Radiation?

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Kellyless View Drop Down
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    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
6/1/16 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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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 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?
Iím stuck at this point and not sure what to do and donít have much time left to decide.
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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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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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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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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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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 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 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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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 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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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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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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Post Options Post Options   Thanks (0) Thanks(0)   Quote tulip09 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2017 at 9:20pm
Hi Everyone,
I was part of this community with my first breast cancer in 2007 but it has been awhile and the site doesn't recognize me anymore, so new name.  Unfortunately I developed TN again in my left breast with one positive lymph node and thankfully had a complete response to carboplatin and taxol chemo with NED. I recently had a mastectomy with tissue expanders in and now awaiting radiation. I am really having a hard time with having to have radiation with the side effects.  I agree that the chest wall is needed but struggle with the other areas they want to treat. I have reviewed the research and it seems the more I review the more I struggle. Wondering what areas to say yes to.  I am really worried about side effects and lymphedema but is that enough of a reason to say no?  I have had other opinions and one says I don't need rads and just treat a reoccurrence, and another says some. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2017 at 8:08am
Bernadette,

If you look at this link, it shows the guidelines for radiation after a mastectomy for Stage 1 and 2 breast cancer.  It looks to me that if you are Stage 1, clear lymph nodes, then it says no radiation is needed.
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 Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2017 at 7:54am
Hi Bernadette,
It sounds like you are very thorough in analyzing this decision, which is important.  I just want to mention that I'm not so sure that it's "standard" to offer radiation after mastectomy for Stage 1, no lymph nodes.  It's definitely standard with lumpectomy.  That is not to say you should skip it, but just make sure you are getting the right information.  I'm glad you are getting a 2nd opinion.

I think you are implying that where you live (Mauritius?  It must be beautiful!) they don't have the most modern radiation equipment.  So clearly this treatment will be more of a burden for you than for most of us, if you have to relocate for treatment, so I can see why you are struggling.  I hope your 2nd opinion doctors help you make this decision.

I want to make sure you are not overly nervous about side effects.  I agree with Snuglitz that aloe can be helpful.  I had aloe plants ready, but I never truly needed that.  My radiation oncologist had told me something very different--she said that you cannot predict the extent of side effects/burn based on skin tone (so don't worry about "frying like a chicken" regardless of your skin tone--Snuglitz, I'm sorry your doctor said that--you must have been very worried!!).  I am very fair and so I still couldn't help but be worried; but she reassured me that she had pale patients sail through and darker skinned patients have a harder time and vice versa--that it's hard to predict.  But that overall, most people do just fine, and talking to the other women in the waiting room, that seems to be the case.  I also drove myself to my appointments, no problem.  I was just a little tired so went to bed early towards the end of radiation.  I think you'll find the vast majority of people say it was far easier than they expected, and for the few who have a hard time, the doctors can help them address their side effects to minimize them.  I found the worst part to be the inconvenience of going every day, but then the 6 1/2 weeks flew by and I've nearly forgotten about it!

Good luck with the decision,
Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bernadettte Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2017 at 12:31am
hi Gordon iam flying to Reunion this week to see ny radiotherapy oncologist. as per my oncologist here said its chest wall. so hoping i got all in good track. the original lumps ia in my right side breast 5 o'clock had my lumpectomy then the lumps is send to biopsy. After biospsy n found out that is carcinoma invasive with a grade 3( infiltrating )I had my masectomy and all is clear ..so now i am questioning my surgeon if may Mammary nodes is clear too..that is not yet answer..thanking u again. ill keep posting my radiotherapy journey.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: May 30 2017 at 6:35pm
Bernadettte : Since you have TNBC, but not in lymph nodes, ask your oncologist if you need radiation to the armpit and the clavicle (collar bone) area.

 The surgeons have told me that a recurrence most often comes back along the suture/incision/scar- line after a mastectomy, so radiation is standard there I think here in USA.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 25 2017 at 10:04pm
Bernadette,

The following link is to the radiation guidelines of the NCCN for breast cancer.  It's the medical guidelines that most doctors follow in the United States.


This page shows the guidelines for radiation after a mastectomy for Stage 1 and 2 breast cancer.

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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