Is it really a grey zone?

SheChirple

I have read until I can't see anymore. I'll try to be short.  I know everyone is different. But, I am truly confused by my GS/BS comment on referral to radio-oncology.

ER+ 99% / PR+ 98% / Her2 -, DCIS, IDC, Notingham Grade 1, 0/6 nodes, BMX.

Surgical pathology report reads "Margins negative for invasive Carcinoma (0.8 cm to nearest superficial marging; Greater than 1 cm to deep margin)" "margins negative for DCIS (0.2 cm to nearest superficial margin; greater than 1 cm  to deep margin)." COMMENT: the mastectomy specimen in part B from the left breast contains a biopsy site cavity with adjacent residual invasive ductal carcinoma, measuring 0.7 x 0.5 cm in one clise.  The previous biopsy contains largest continguous focus of tumor measuring 1.2 cm.....the approximate size of the tumor is, therefore, 1.7 cm, making this a pT1c tumor.

 My GS/BS (genereal/breast surgeon) highlighted and focused on the .2cm to nearest suprficial margin and said she is referring me to radiooncologist for radiation treatment.

I have researched endlessesly and am clearly missing something. Everything I find defining clear/clean or negative margins indicates that the most conservative of doctors want 2 mm or more of normal tissue to consider clearn/clean or negative.  Some as little as 1 mm or less.

Maybe it's not all about the clear margins, but I got the impression from my doctor that that was her deciding factor. 

I would like to go to my oncology appt this Friday fully informed.  Somebody help me out here.

Thanks,

debbie6122

Bump

thenewme

Hi SheChirple, 

Have you seen the NCCN Guidelines?  You can find it at www.nccn.org  . The physicians' version is much more specific than the "patient" version.

It shows specific recommendations for treatment based on specific characteristics.  I looked at it with your info in mind, and if I understand correctly, it doesn't seem to recommend radiation.  BUT... it also is very clear about the fact that it only offers guidelines, and that each situation should be independently evaluated by the patient and her doctor to decide on specific treatment recommendations to maximize benefit while minimizing risks.  

Remember, too, that a referral to a radiology oncologist doesn't necessarily mean you will or should have radiation.  The rad onc is the expert who can help you individually assess your particular situation to decide if radiation is the best choice for you.

Best of luck to you!  It's great that you're being so proactive about information gathering!

NatsFan

She - I too was borderline for rads.  I went to two different rad oncs to get opinions.  After these appointments and after a lot of research, I declined rads and am still comfortable with my decision three and a half years later 

My recommendation would be to go for at least 2 consults with two separate radiation oncologists. Go to those visits armed with questions and once they make a recommendation, ask them to fully explain their recommendation, and ask them what they believe would be the outcome if you eclined their recommended course of action.  Ask the difference between recurrence rates and survival rates.  In my case, the studies at the time showed rads made absolutely no difference in survival rates, and gave only a small decrease in recurrence rates.  With survival off the table, it made my decision a lot easier.  Good luck!

miricurt538

So NatsFan, I take it to mean that you bypassed the rad.  I have been writhing with indecision since the news of the study came out in San Antonio about the Oncotype DX test showing that 75% of DCIS not needing rad.  i have been dx with DCIS, stage 0, 1.4cm, er+/pr+.  I think it is awful for one to have to go through that unnecessarily.  I am scheduled to see the  RO Wed. and plan to see what he says.  It is going to put me a little late for starting rad if the test shows I could benefit from it but it seems noone has been in a hurry to get me through the tests-appointments gauntlet quickly.

SheChirple, I wish you luck in making the right choice.  This complete trip is wrought with indecision and frustration.  SORRY, I sound soooo sorry for myself. lol    Didn't mean to!  I know I have it so much easier than many!

SheChirple

I met with oncology and he "confirmed" that I am not recommended for radiation.  I actually found myself asking why not, just to challenge him. He echoed everything I had found in my research. So, we are good.  However, we did order OncoDx.

My next appt is with plastic on 12/15, hopefully to remove drains and get first fill, but I have a spot on my incision that is not healing well, so we'll see.

Next is 1/6 for results of OncoDx.

So, now that everyone agrees no chemo, no radiation, proceed with reconstruction, what happens if Onco Dx comes back high?  Grrrr

KarenWi

I'm with ya, I have read so much and now with the new alert to radiation to left breast (which would be me) and risk of coronary artery stenosis, makes it all the more reason to maybe, for me, to say no.  I requested the Oncotype DX test, b/4 I would agree to chemo. Recieved the results 2day, chemo is not necessary for me, which after all of the reading I have done, I would not have done chemo anyway especially at my stage.  Now I am just questioning radiation??? 

Gia259995

Have you looked into inter operative radiation which you can have even after your primary surgery. It is localized and a shield against your chest wall protects your organs from radiation