Radiation for Micromets?
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Category: TNBC Forums
Forum Name: Let's Talk About Radiation Therapy
Forum Description: A place to discuss Radiation Therapy
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=10628
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Topic: Radiation for Micromets?
Posted By: Susanna7
Subject: Radiation for Micromets?
Date Posted: Dec 21 2012 at 10:49am
Hi everyone!
I am confused about the benefits and risks of radiation after mastectomy for TNBC where some of the indicators for radiation are not met.
My tumor was smaller than 5 cm (1.5 cm) and there were clear margins on lumpectomy.
On sentinel node biopsy, 1 of 2 nodes was found to have micromets. After the lumpectomy, I was tested for BRCA and found to have a deleterious BRCA1 gene mutation (exon 13 ins 6kb). I underwent 8 rounds of dose-dense biweekly ACT chemo, which I was advised to do because the tumor was TNBC. Because of my BRCA status, I am scheduled for bilateral mastectomy/oophrectomy in early February, 2013. At the moment, I do not plan to reconstruct but that decision might be otherwise if I don't have radiation. I also might decide to reconstruct in the future if I end up more unhappy with not reconstructing than I expect I will be.
I have received conflicting advice from the two radiation oncologists I have consulted about whether to have radiation after my mastectomy. Both agree I fall into a "gray area" for radiation, but one advises having radiation and the other advises against.
I want to reduce my recurrence risk as low as possible, but am also concerned about risks from radiation. The radiation oncologist looked at the position of my heart on CT scan and advised that there was minimal risk of heart damage. But I believe there may be some risk to the lungs? Also problems with ongoing fatigue and skin damage?
Does anyone have any thoughts or advice for me?
Thank you for your help!
Susanna
DX IDC TNBC 8/12 age 51, Stage 2A,G rade 3, 1.5cm,1 micromet/2 nodes on SNB
lumpectomy 9/12, ACT X 8 (finished 12/12), BRCA+, scheduled for bi-mx/oophrectomy 2/13
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Replies:
Posted By: krisa
Date Posted: Dec 21 2012 at 11:19am
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That is a tough question. Perhaps a third opinion?
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Posted By: 123Donna
Date Posted: Dec 21 2012 at 2:15pm
Hi Susanna,
I agree maybe getting a third opinion as this seems to be a grey area. Here's a link to discussion about possible benefits of radiation:
http://forum.tnbcfoundation.org/radiation-and-possible-benefits-of-rni_topic10437.html - http://forum.tnbcfoundation.org/radiation-and-possible-benefits-of-rni_topic10437.html
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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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Posted By: kevintrait
Date Posted: Jan 04 2013 at 5:36am
I am also confused with these topic so if possible can anyone share some manuals or thesis so that we can have a closer look over it and learn the technicalities in them?
http://www.iloveno1.com
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Posted By: kirby
Date Posted: Jan 04 2013 at 11:13am
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Susanna,
I don't have facts or figures for you. It has been 12 years since my dx. I was told after the fact, that radiation took out part of my lung. I was also told " I only needed to know this because it may show up on future X-rays but otherwise would have no bearing." Certainly not the best way of being told. It probably hasn't had any bearing on my life. These things sound so scary, especially when there are so many items to wade thru. Reality, I am almost 58 and stay as active as time allows and run a couple miles a day, several days a week. So perhaps I didn't need that portion of lung after all! Lol.
Good luck with all your decision. Know that you will make the best decision for yourself with the knowledge that is at hand now.
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kirby
dx Feb. 2001. Age 44
Lumpectomy
2cm. no nodes stage 1 grade 3
4 rnds AC, 35 rads
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Posted By: overwhelmed
Date Posted: Jan 04 2013 at 12:34pm
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I had radiation with one .17 mm cell in the SN. My med onc and rad onc both recommended radiation because of the size of the tumor and because of that one cell, and because I was TNBC. Things have changed with radiation. I was one of the first patients at my clinic to receive rads while holding my breath. Doing so somehow pulled my heart out of the path of the beams. They also placed a pad over my chest so that the beams were dispersed pretty shallow under the skin. Again, this was to be sure they didn't hit my heart. The tip of my left lung was hit because they radiated the nodes under the clavical. I've never noticed it, even when I''m sick. I wanted radiation because of that microsopic cell and because my tumor was large. I had a mastectomy, but haven't regretted having rads. It's difficult to be in that gray area, and you will need to figure out what you are most comfortable with. But, I did want to let you know that I've have no issues because of the radiation. Good luck with your decision.
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DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Posted By: Lillie
Date Posted: Jan 04 2013 at 2:40pm
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I also fell into that 'grey area'. 2cm tumor. micromets in 1 lymph node. Had mastectomy, (clinical trial chemo - 4 dd A/C bi weekly and then 4 dd Taxol/gemzar bi weekly) Radiation was not recommended with this trial. I can't say that I wasn't concerned about the radiation issue, but my oncologist assured me that what I had was enough.
This was 6 years ago, so I've come to accept that what I had was right for me.
Good luck and God Bless,
Lillie
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Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Posted By: Sarah Charles
Date Posted: Jan 08 2013 at 3:57pm
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Hi Susanna, it is true that you do not fall under the strictest established guidelines for radiation after mastectomy. However, according to recent research, women with ER- disease should be considered for it. For an in depth discussion of this topic and links to the relevant research, Google "When should mastectomy be followed by radiation treatment?" (with the quotes). Hope this is helpful. Wishing you all the best, Sarah
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