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Mastectomy and Radiation

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kcreasey View Drop Down
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    Posted: Aug 26 2013 at 11:22am
I had a right side mastectomy and chemo follow up.  Last week was my last chemo treatment and now I am trying to decide radiation or no radiation.  I saw a RO who said I was in the gray area but because I have TNBC and it was in 1 node aggressively and a 2nd node just barely she thought it best.  My tumor was 2.8 cm and my margins were all clear, grade 2, and I had a sentinel and auxiliary node dissection.  13 nodes were removed all together.  I am very concerned about lymphedema as a result of radiation.  Should I be?  Is that the lesser of the two?  Would radiation be valuable enough in my case to risk the possible side effects?  Is radiation the only other next step alternative or are there other options out there I don't know about?  I would be grateful for any input.
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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: Aug 26 2013 at 6:51pm
kcreasey,

Could you get a second opinion from another center's RO?  I'm a firm believer in second and third opinions.  I met with 3 radiation oncologists before deciding upon a treatment plan.  

Here are a couple of links you might want to read:


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 wwjdJanice Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2014 at 3:50pm

Kreasy,

I just completed chemotherapy (ACT) after having bilateral mastectomy in June, and due to start 7 weeks of radiation in Jan, 2015 if my 12/19 Pet Scan is clear.  I had cancer in left breast only, TNBC Stage IIb (in 1 lymph node) but had recurrence (surgically removal) of cancer while on chemo, but I'm scared of radiation because its on my heart side and after masctectomy/lymph removal of 9 nodes surgery I have cording in my left arm and what feels light constant contraction of tricep muscle (upper outside of arm).  I had this real bad shingles type of nerve pain in upper left arm for 5 weeks after surgery which thankfully turned into numbness.  I have read there are slight risks of heart and lung lining damage with radiation, and I too am scared of lympedema setting in after they radiate entire chest wall including lymph nodes behind breast bone and across collar bone.  I had a major complication to chemo (neulasta shot didn't work leaving me with no white blood cells) which lead to removal of my colon which set my treatment back so I 'm wondering if getting radiation 10 months after initial diagnosis of TNBC has any benefit with respect to locally containing the spread of my TNBC ? i'm scared to do radiation.  Did you decide to go thru with it ?  If so how is it going and can you give me any words of encouragement as I'm chicken.
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kcreasey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kcreasey Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2014 at 4:26pm
You have every right to be chicken!  You have been through so much.  I am so sorry for the difficulties you have endured with treatment.  My treatment was tough as well.  I decided not to go through with radiation.  I did a heap load of research in regards to my situation and after talking with many people on both sides of the argument I decided the risks for me out way'd the rewards.  I have not been sorry.  My arm (lymphedema) is behaving itself and I have spent the last year recovering and getting strong.  I figure if I need radiation in the future I can do it then.  Do your research, or better yet, have someone you trust do the research for you.  Ask the tough, real questions like, "how are those percentages derived?  How do they apply to me?"  Ask the medical professional you trust most on your team to explain the numbers and give you the real pro's and con's.  Chemo followed by radiation is the medical norm but that does not mean you have to do it.  As well, ask yourself, "Will I worry and fear the cancers return if I do not do radiation?"  In the end it is your decision to make and your life to live!  For me, I made the right one.  I will pray for you as you decide.  Have a blessed holiday!  Karen
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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: Dec 06 2014 at 6:39pm
wwjdJanice,

You might want to ask if IMRT radiation would be an option for you.



I see you are from St. Louis too.  Hello!

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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