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Need advice on radiation treatments

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AlohaGirl Warrior View Drop Down
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    Posted: Jan 18 2012 at 9:46pm
Hello TNBC Family:

I have finally completed my TAC x6 treatments last Monday for my Stage II TNBC, after having a mastectomy on 9/1 with neg. SLNB x3. I now have conflicting answers from 2 different MDs about radiation treatments. One MD recommended radiation treatments post mastectomy despite negative nodes because of the nature of TNBC. Another MD did not feel that radiation treatment was warranted, as I did not meet the standard criteria for radiation treatments (ie. node positive, >5mm tumor size). Perhaps our special category of TNBC puts us in a special treatment category.

I just wanted to ask any of of you who may shed some light on your personal experience with radiation treatments and any literature/clinical studies/knowledge on what requirements would warrant radiation treatments postmastectomy.  

Thanks in advance for your assistance. 

XOXO,
D~
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Grateful for today View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2012 at 10:21pm
Hi Aloha Girl Warrior,

Acknowledging the good news that you have completed your chemo.

Would you confirm that I am reading your post correctly.....
     With mastectomy you had sentinal lymph node biopsy.....negative nodes x3. ? 0/3 nodes.
              You did not have full axillary lymph node dissection

Will list a few forum topics related to your topic to get things started:

http://forum.tnbcfoundation.org/recently-diagnosed-need-help-with-radiation-decisi_topic9482.html   (includes other references)

http://forum.tnbcfoundation.org/radiation-rni_topic8602.html?KW=Radiation
(includes other references)

http://forum.tnbcfoundation.org/open-access-articles-on-tnbc_topic9440.html
(post by Lee on Jan 11 at 11:40 am has radiation therapy related referenced articles)

Am sure others will be posting additional info/experiences etc.

With caring and positive thoughts,

Grateful for today..............Judy
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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: Jan 18 2012 at 10:46pm
Alohagirl Warrior,

You posed a very good question that I think will be getting more interest in the medical community for TNBC.  There are some study(ies) showing that radiation, even after mastectomy, may be warranted for high risk women (eg, TNBC).  Here's a link to some threads talking about radiation and listing several links:



I guess you need to weigh the risk of radiation versus the potential for recurrence.  I had bilateral mastectomy, Stage 1, negative nodes and had a recurrence.  

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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AlohaGirl Warrior View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AlohaGirl Warrior Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2012 at 11:43pm
Hello Judy:

Thanks for your reply and wonderful information!

Sorry for the confusing info. My stats are below:

8/11 diagnosed with stage II IDC TNBC
9/1/11 Simple mastectomy, sentinel lymph node biopsy--3 nodes negative , clear margins
9/27/11-1/9/12 TAC x6

Warm regards,
D~

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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 19 2012 at 12:49am
Dear D,

when you say you have seen two MDs...are they breast medical oncologists?...have you seen a radiation oncologist?...

there is one at UCSF that I think is very smart...Dr. Barbara Fowble...perhaps you have seen her already?


This is a controversial area and I personally don’t think you should rely on any of us for such an important decision.

congrats on finishing chemo.

As far as I know standard of care for TNBC, generally is surgery, chemo, radiation therapy or a variation of order if neo-adjuvant chemo. My daughter had negative nodes and was advised she could avoid radiation therapy if she had bilateral mastectomies. That’s what she did. But she is also BRCA1+.

Again, I would try to get some more opinions and then decide. 

good luck to you..

all the best,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jan 19 2012 at 12:54am
Hi Aloha Girl Warrior,

You did not confuse your info. It was me just wanting to be sure I read it correctly.

What I have found interesting on the forum, is that there have been members who were
Stage I with no nodes ( who had chemo and surgery but no radiation) and then had
recurrences.    Acknowledging that many Stage I with no nodes who had chemo and surgery
and no radiation have had no recurrences.

This was my experience.     I was a clinical Stage II (T2N1). pathology: ypT1cN1a.
Had neoadjuvant chemo, unilateral mastectomy and ALND, radiation x29 treatments.
Radiation was recommended by the radiation oncologist at a comprehensive cancer center.
Because of my N1 status, I felt comfortable with the radiation plan.   After radiation, when I
read more and saw more posts on the forum, I realized even more how important the
radiation decision is.    (Again, this was my situation and my experience.)
Remember, everyone's situation is different and the best plan is the plan that one makes with
the recommendations of one's provider (radiation oncologist) considering one's individual situation.
Sometimes a 3rd consult is needed for peace of mind. ( In which case, one may want the
3rd consult at a Comprehensive Cancer Center if possible. Or you may already be at a
comprehensive cancer center. Note:   See Steve's above info on Dr. Fowble )

On the forum topics/threads that Donna and I posted above, there are several references
within the forum..... plus Lee's references on open access. There is a lot of reading and a
lot of info there.   Maybe reading the various references will help sort out the pros and cons...
and help you with your decision .....and also give you questions to ask your providers.
Maybe you could consider asking both radiation oncologists:
             All the pros/cons for their recommendation.
             What questions one could ask the other MD whose recommendation was different.

You are wise to get as much information that you need to make the best decision for you.
And you will make the best decision for you.

With caring and positive thoughts,

Grateful for today.................Judy


Edited by Grateful for today - Jan 19 2012 at 1:30am
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AlohaGirl Warrior View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AlohaGirl Warrior Quote  Post ReplyReply Direct Link To This Post Posted: Jan 19 2012 at 1:50am
Hi Steve:

Many thanks for your recommendations. I will definitely pursue a 3rd opinion at UCSF. Both MDs that I saw were radiation oncologists. I'll have to find out how the referral process/3rd opinion works for HMO to UCSF. 

Donna and Judy:

Thank you also for the threads/links you sent. It was definitely helpful. It's a lot of information to digest, but it is giving me a broader picture of the clinical studies. Thanks a million!!

Kind regards,
D
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