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Radiation or No Radiation?

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hanley50 View Drop Down
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    Posted: Jul 28 2016 at 10:13pm

I had neoadjuvant DD AC-T from 02/10/16-05/20/16. Had UMX with tissue expander on 06/16/16.

I did not have PCR - actually everything on pathology was about the same as what the imaging and biopsies showed in January (except that in addition to IDC they also found extensive DCIS that I didn't know about.)

I am being told that due to TN without PCR that I need radiation - which I did not expect and was not planning on.

What do you think? Other than TN without PCR I would not need radiation based on the normal criteria (Tumor <5cm (only 1.5cm), <4 possitive nodes (only 1 positive node), and I had clean margins.)

If I would of had surgery prior to chemo I don't think I would be in this situation because how would they know if I acheived PCR?

I have my simulation for RADS scheduled for 08/16/16 and keep second guessing this next step (I also am still getting fills and I do not have ROM under control - but am going to PT for this and was told I already showing Stage 1 Lymphedema.)

Maryann DX@43
DX 01/07/16, DCIS/IDC, RT, 1.7cm, G3, 1/17 Nodes, TN, KI67=70
Chemo 02/09/16 DD AC-T
Surgery 06/15/16 UMX w/TE & ALND
Radiation 08/22/16 WB/Lymph Nodes
BRCA 1&2 Negative
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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: Jul 28 2016 at 11:32pm
This is a tough question when you fall into the "grey" area for treatment guidelines.  Please read through these links and possibly consider a 2nd opinion.  Please let us know what you decide.

Read this link especially,



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 hanley50 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 29 2016 at 10:54am
123Donna,

I'm reading all the posts now.  Thank you for compiling and sharing all of this great information!

Maryann
Maryann DX@43
DX 01/07/16, DCIS/IDC, RT, 1.7cm, G3, 1/17 Nodes, TN, KI67=70
Chemo 02/09/16 DD AC-T
Surgery 06/15/16 UMX w/TE & ALND
Radiation 08/22/16 WB/Lymph Nodes
BRCA 1&2 Negative
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2016 at 8:19pm
With TN and any lymph nodes involved, it seems from what we have gone thru and read, they want to do radiation. Are they irradiating the clavicle nodes and armpit? There was an exposure they told my wife when exposing the clavicle area, it exposes the top part of the lung, on the outside, ask about it. Also, some women ask for thyroid shields, although my wife's radial-onco said they don't work, because the exposure is off the bone underneath, and he said it's very minimal, and my wife had no issues. She did have slight shortness of breath on the lung thing for about 3 weeks after finished. It showed in PET/CT after she was done w/ therapies.
They told my wife with TN, they want to radiate the suture line, as a local recurrance often occurs there. I think they are also worried about micro-mets in nodes that don't show on scans, but you might want to get a 2nd opinion, my wife did, but her's was much more aggressive totally worse prognosis. Seems like Donna summed it up, maybe borderline situation, the docs from what I've seen lean towards radiation if in doubt.
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 adagilbert Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2017 at 6:42am
Many cancer patients undergoing radiotherapy are left with radiation burn, or with what’s known as radiation dermatitis. It results in irritated, red and painful skin at the entry point of treatment where the surface radiation is the strongest. Our gentle, specialized moisturizers soothe the affected areas, and through use of natural healing agents help the skin return to a healthy condition.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rayna15 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2017 at 1:00pm
Hello. I feel for you. I debated with the decision for radiation too. I'm 33 and I have/had Grade 3 Stage IIIc TNIDC with a few positive lymph nodes. After chemo and mastectomy with tissue expander placement, however, I did have a pathologic complete response. Since I had lymph node involvement, they "highly recommended" radiation. I decided to go with it after much contemplation. I have done a lot of research on natural things that can help (diet, vitamins, exercise, meditation, qi gong, etc.) and do both in conjunction with each other. I am done with round 25 of 28 and my skin is just starting to peel slightly. Did radiation help? I don't know. Maybe I would've been fine without it. I guess my final decision was that I can say I did everything recommended and more. I think everyone just needs to weigh the pros and cons and do what feels right. Good luck.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Patrickm Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2017 at 2:01pm
Hi Hanley - how are you doing since last year? How is your Lymphedema? My wife has TNBC with 1 node positive from surgery (brca negative) and a 4 cm tumor at age 38. Sounds like a similar boat to you.
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote adagilbert Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2017 at 2:44am
Radiation  therapy  uses high-energy particles or waves, such as x-rays, gamma rays, electron beams, or protons, to destroy or damage cancer cells,which helps the Radiation For Skin to better kill cancer cells.Go with Radiation Therapy is better option because it helps to kills cancer cells.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bernadettte Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2017 at 6:01am
hi angels... iam also looking for a peace of mind if ill be needing radiotherapy. had..0/7 lymph nodes , undergone to simple masectomy. 6 rounds chemo (3FEC&taxotere) my oncologist said its up to.me... for him is 50%recommendation. as iam young 39 yrs of age. and 50% said no bec no indication ill be needing it ..its only prevention. iam so.lost in where iam now they still using Gobalt machine so wanted to go other
other place . now seeing my radiotherapy oncologist said no i dont need it. what i.should decide ..pls help
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2017 at 11:30am
Bernadette,

What was the size of your tumor?  Did they tell you the Stage of your cancer?

Donna
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 Bernadettte Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2017 at 12:08pm
iam diagnose: with 1.6 cm  grade 3 pT2 No Mo Ki67=40% (0/7 nodes)
TNBC .right mastectomy had adjuvant chemotherapy x 6 (3FEC n 3 Taxotere)  for the stage iam 1 and now my Dr said iam.cancer free since i did my surgery. but again my ocologist  rrecommend adjuvant chest wall radiotherapy..  which again iam picking up my courage.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2017 at 8:43pm
It sounds like you had 1.6cm TNBC tumor with no lymph nodes positive for cancer, you did single mastectomy, after chemotherapy, that is good news that your doctor said you are cancer-free after the surgery, but here in USA, radiation is the standard, to the suture area because that is where the cancer most often comes back. Since you did not have any lymph nodes involved, perhaps they do not need to do radiation to the clavicle are, where there are some lymph nodes.

The chest wall scar line is usually where the cancer comes back, because surgeons are not perfect, they try and take enough margin, but it could be only one cell, and the cancer wants to multiply. That's why they want to use radiation along the suture/scar line.
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 Bernadettte Quote  Post ReplyReply Direct Link To This Post Posted: May 25 2017 at 7:30am
Gordon...thanks a lot for the info. aftr all the reading from the discussion and some article that ms Donna send it to.me iam very much willing to get the ticket to win this battle and less not to be candidate for recurrence. so decided to.do.the radiotherapy.

however Ms donna had given me other question in my mind as my oncologist written in..that radiated will be in my chest wall. as i am not to sure about the axxila nodes. and the M nodes . clavical nodes.that should be also radiate.
my infomation i only gathered is my lymph nodes is negative 0/7 and now i had read a bit of other nodes to check as the all.article n other discussion from previous.
.may you pls help me what really i need to ask.with my.radiotherphy oncologist. or should i ask to.my surgeons...which nodes..???.

i need best treatment ..i need a winning treatment for my 2 children.
considering TNBC is aggresive and it maybe reoccured fast than a other breast cancer..
thank you ....
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Post Options Post Options   Thanks (0) Thanks(0)   Quote snugltz Quote  Post ReplyReply Direct Link To This Post Posted: May 25 2017 at 6:50pm
I was not even given a choice.  My tumor was 1CM and no nodes.  I also saw the triple neg doc at Stanford.  Also said to be safe do the radiation.  And for me and most that Ive seen on here radiation is a walk in the park after chemo.  If you  do it buy an aloe plant.  Not the bottled stuff...a real plant. I am so fair skinned my doc said I was going to fry like chicken.  I didn't get red until the very  last week.  Used the aloe leaves.  You cut them and rub the gel on yourself.  I used one leaf many times.  Theres lots of stuff in them.  Also a very elderly lady from the church I attended  had cancer under her ear. Doc said she needed radiation but it would burn so he didn't want to do it.  I gave her part of my aloe plant and she NEVER burned at all (she decided to go for it).  I have shared my plant with others and it helps nearly everyone to keep from burning.  I hated chemo.  wanted to quit.  But I even drove myself to some of the  radiation treatments.  Only the little tattoo dots on my chest bother me.  Look funny.  I know radiation can cause leukemia down the road, but CAN being the word.  The cancer is not a CAN its been diagnosed. But it is your choice. 
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X
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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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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 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 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 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 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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