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Very aggressive radiation plan

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Silver cloud View Drop Down
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    Posted: Apr 06 2013 at 7:50am
Hi everyone. I met with my RO in the beginning of feb. at that point I had just started chemo and my head was filled with too much info-that and chemo brain. My dx was initially a 2.3 cm that grew to 3.2 cm within weeks. Core biopsy confirmed tnbc and was told on a mon. Wed I started chemo. There was one node that looked "cloudy" on ultrasound, which they aspirated and came bak normal! They did not think that it has spread to nodes. My RO wants to give me the full works after surgery, chest wall and supraclavicular. At the time I just accepted this but now I am wondering why such an agressive attack with all the possible complications this cold cause-especially since they don't think it has spread to nodes. I admit I am afraid of rads and really don't want to get lymphedema. I guess my question is, do all tnbc get such aggressive radiation?
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Annie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2013 at 9:03am


        Hi Silver Cloud, I had a lumpectomy and did have effects of Radiation which led to a Mastectomy a year and a half later or so. I am not sorry that I had Radiation, I wish I had not had the effects I did but I rest assured that regardless of my breast having to be removed a whole heck of a lot of chest tissue that could be holding stray cancer cells and (for me under the arm was done too +nodes) was treated.

                          I do believe that the RO would not give you this advice without due and serious consideration for your health.

                          
                          If you take care of your arm etc. and watch for early signs of lymphedema it can be quite treatable. No matter what, lymphedema is better than cancer.

                          I was so glad that chemo was over that I tried to do too much while on Radiation...I feel a person still needs a lot of rest while on Radiation. Also the creams should be applied as they recommend.
                        
                         I think the majority of TNBC receive Radiation to some degree.

                         If you find yourself fearful when you go for Rads you could ask your Dr. to order some Ativan sl. for you. Do not go through it fearfully would be my advice.

                         Take care now...Love, Annie

Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2013 at 9:10am
I HAD STRONG RADATION TO ARM IN 2007 TO RIGHT SIDE , I HAD 17 NODES REMOVED, IT WAS ER POSTIVE THEN , I HAVE VERY LITTLE PROBLEMS WITH THAT ARM, USE IT AS I DID BEFORE , I ALSO HAD NORMAL RAD. TO LEFT SIDE LAST YEAR FOR TN ONLY 2 NODES REMOVED , I DO GET SOME ARM PAIN AT NIGHT , BUT THATS ABOUT IT, BECK
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Silver cloud Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2013 at 9:10am
Thanks Annie, did you get chest wall and supraclavicular? I totally agree with radiation especially if I opt for lumpectomy, but am confused as to why some women get a less agressive treatment when no nodes are involved. I will talk to my MO when I see her next, I trust her and may ask for a second RO opinion, although I have to admit the awkwardness in doing that and then facing my RO again. I know it is MY health and I must be my own advocate. I was graded as stage 2 grade 3, if that makes a difference.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Silver cloud Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2013 at 9:15am
Thanks Beck, my RO was listing off the possible SE involved with supraclavicular and chest wall and I just sat there overwhelmed and didn't know what to ask. Now that I have thought about it and read many threads here and on breastcancer.org I am sort of wondering why I need such heavy duty radiation if no nodes are suspected, and my tumor was 3.2 cm?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2013 at 9:20am
I THINK I WOULD ASK QUESTIONS ON THAT , I HAD 10 NODES WITH CANCER ON THE ER POSTIVE SIDE , AS THEY PUT IT , THEY HAD TO HIT ME HARD, BUT WITH THE TN , I HAD NO NODES INVOLED, SO NO RADATION TO THE NODES, IT SOUNDS LIKE OVERKILL TO ME, BECK
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Silver cloud Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2013 at 9:30am
Thank you, I'm starting to feel that way also, so I better get my worries calmed before treatment. Maybe there is a reason for my RO's plan that I failed to " hear" at the time. I think maybe asking my MO will help. My tumour has been responding well to neoadjuvent chemo and has shrunk to a "unmeasurable thickening of mass" in 3 treatments. I feel optimistic that I will beat this and just have to decide which surgery based on a partial brca test result due soon. I really want radiation therapy to complete my treatment, but I don't want more than I actually need.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2013 at 10:32am


       It is always good to get a second opinion. It will make you feel better for sure.   The pathology report is VERY important in their decision making.

       I am not sure if I had supraclavicular, just went to check my tatoos and it does not look like I did. I was 2A Gr.3 with 2/5+nodes.

       Do not feel worried about asking for another opinion...I asked for a referral to a TNBC Onc. for her opinion about something occuring after treatment...he was not offended and in fact when I saw her, she knew him...She said they do not mind...they all have too many patients!
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2013 at 12:37pm
Hi Silver cloud,

A second opinion would be helpful.  When I had my recurrence I sought 3 opinions to determine the right treatment plan.  They may be concerned that some isolated cells could have escaped the tumor and traveled through the lymph system even though your needle aspiration of the node turned out negative.  Once you have surgery, they'll look closer at the nodes too when running the pathology report.  The RO may revise the treatment plan at that time.

With my original dx, I did not have radiation as I had clear nodes and margins and a bi-mx.  With the recurrence to a regional lymph node, I needed radiation.  Since they were going to hit multiple areas, breast, axilla, internal mammary, clavicle, supraclavicle, we opted for Tomotherapy (CT Guided IMRT).  It's a newer type of radiation that hopefully can hit multiple areas without damaging (or reducinc the damage) to other organs.  If you have multiple areas radiated, you may want to ask about this option.  

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 Silver cloud Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2013 at 4:03pm
Thank you Donna, I am marking that down to ask RO. You are probably correct in thinking that they want to be sure there aren't any stray cells, but then wouldn't all women want this-just to be assured? Maybe because I am doing neoadjuvent chemo first, so no sentinel node biopsy yet. I guess when women have surgery first, they are able to do node biopsy and know with certainty if nodes are affected, thus maybe less aggressive radiation therapy is then a choice? Well, I will try and find out, but the more information I can gather, the better! Thank you everyone, Shari

Edited by Silver cloud - Apr 06 2013 at 4:08pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2013 at 4:44pm


           Hi Shari,   I just happened to notice that under lets talk radiation...Steve had posted a link to Rad. Oncology questions you might like to look at...
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JulieKCA2013 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2013 at 8:20am
Silver cloud I am 33 who was diagnosed 2 months ago.  My tumor was 4cm which grew to 5cm.  I was told because of my age and size of the tumor they would take the most aggressive approach even if my nodes came back negative.  This was told to me By Dr Lisa Newman a specialist/expert in TNBC. I am on neoadjuvant chemo to shrink the tumor and I will have a modified double mastectomy in the summer.  I had one suspicious axillary node that came back positive after my talk with Dr Newman.  Then in the fall starts rads.  So I am in a similar situation as you, my tumor was a bit larger, but same recommendation.  

-Julie
Dx 3-7-13 TNBC, 5cm pT2N1M0
3-19-13 ACx4, 5-14-13 Taxolx4
7-17-13 BMX ypT1N2M0(.9mm) 4/24 nodes.
10-8-13 completed Rads x 30
12-3-13 completed Eribulin Trial
10-18-13, 3-19-14 Bone/Ct Scan Clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jody Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2013 at 1:20pm
Hi, I had NO node involvement what-so-ever and they still hit me HARD with radiation!!  To me it was worth it, I am 5 years NED, so whatever they did worked for me!  Also, even with all the radiation I had, I never had ANY lymphodema at all. Good Luck and God Bless!
diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08       La Verne, California
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Silver cloud Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2013 at 3:59pm
Oh my I feel so much better everyone, thank you! I talked to my MO today and she said because of the way my disease presented, they wanted to hit me hard with everything they had as far as chemo and rads. To be honest, I really didn't want to hear this but I needed to. I now feel better about my treatment plan but have set up another appointment with RO to go over to tomotherapy, if they do that at my hospital , and spect ct scans or whatever possible precautions they can offer. I would also like to find out the number of Gray. Everyone, thank you for settling my fears and helping me realize that our disease is agressive and it is better to use a canon then a gun! Shari
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2013 at 7:32pm
Hey Shari,

I just saw this post for some reason... My case is a little cloudy because by that point in my journey, I was being treated at three different facilities because of insurance reasons. I had a larger tumor and one node with chemo chnges at time of surgery. The RO where I had surgery said standard rads. When I met with the guy at the facility near home where I needed to do tx, he wanted to do it all because he didn't like some enlarged nodes on my scan and also he said I had a high chance of cure and he sisn't want to risk it with not doing enough in radiation. My oncologist agreed with the plan when I told him so I went with it. I too got the whole shebang. I had a tumor close to the chest wall so I got that, and the axillary nodes. I had consistent pain at the sternum so he went there and didn't like supraclav nodes on the scan so I got that too. Pretty well cooked!

Always always ask questions until you are comfortable!! Good luck!
Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Skclayton Quote  Post ReplyReply Direct Link To This Post Posted: May 01 2013 at 5:52pm
Hello Silver Cloud.  I was negative on L-Nodes the first time around---the diagnosis based on CT/PET scans, MRIs, biopsies and L-Nodes lab checked during double Masectomy.  Did not have Radiation---ony 4 treatments of chemo after masectomy.  BUT....1-1/2 years later, I have 4 positive L-Nodes.  I had 21 L-Nodes surgically removed.  No lymphoma.  Went through 8 treatments of aggressive chemo and now doing radiation.  My regrets?  I wish I had had Radiation the first time around.  I might not be dealing with this now.  So far, CT/PET scans are clear.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Silver cloud Quote  Post ReplyReply Direct Link To This Post Posted: May 01 2013 at 7:54pm
Thank you everyone. Feeling better about planned treatment which may change after surgery.
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