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  • Posted on: Nov 6, 2009 07:45 am
NC
Joined: Sep 2009
Posts: 387
PureE wrote:

I have really thick margins ( like 6cm) -once benifit of big breasts:)

Anyway I was talking to a bc researcher yesterday and he said my margins were the best someone could hope for.

He also told me that margins are important for local reoccurence. 

He also said that  20% of those who have a local reoccurence go on to have mets and that percentage is NOT worked into our current stats. Seems a lot of little numbers don't go into those stupid scary stats.

His point though was the importance of rads and going to a really good institution with a really good machine and rads oncologist.

JMV

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barbe1958
Barrie, ON
Joined: Nov 2008
Posts: 5,194
Nov 6, 2009 07:48 am barbe1958 wrote:

Great....I didn't get rads....sigh.

Papillary Carcinoma with ITCs and IMLN, Bilateral Mastectomy Dec 16th/08 No re-con. No foobies.
Diagnosis: 12/10/2008, 1cm, Stage II, 2/13 nodes, ER+/PR+, HER2-
KerryMac
North York, ON
Joined: Jan 2009
Posts: 1,699
Nov 6, 2009 07:53 am KerryMac wrote:

I would second that - Rads cut the risk of local reoccurance down to almost nothing.....

Kerry - Mx, Chemo, Rads, Ooph, Arimidex, Zometa
Diagnosis: 11/2008, IDC, 6cm+, Stage IIIa, Grade 3, 6/11 nodes, ER+/PR+, HER2-
leftyAKAnan…
Joined: May 2008
Posts: 2,871
Nov 6, 2009 07:53 am leftyAKAnancy wrote:

Nor did I, (((barbe)))).   


Diagnosis: 5/2/2008, IDC, 6cm+, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2+
Mamita49
Montréal
Joined: Feb 2009
Posts: 194
Nov 6, 2009 07:54 am Mamita49 wrote:

Weird,

I heard so often, even before my own bc, once you have mastect. you dont need rads.

Well, my docs thought that this was very WRONG.

Yes, indeed you need rads, even with mastect.

I got 25 rounds, my last one will be next Monday, and I had mastect. 

Carol, lumpect. 4xA/C 4xTAX, Mast. in Aug. 2009, Rad. Tamox
Diagnosis: 12/15/2008, IDC, 3cm, Stage IIb, Grade 3, 2/7 nodes, ER+/PR+, HER2-
barbe1958
Barrie, ON
Joined: Nov 2008
Posts: 5,194
Nov 6, 2009 08:13 am barbe1958 wrote:

The rads would assume that the rogue cancer cells are still in that area, though, right? What if they've alrady moved on....chemo, right? I didn't get chemo either!

Papillary Carcinoma with ITCs and IMLN, Bilateral Mastectomy Dec 16th/08 No re-con. No foobies.
Diagnosis: 12/10/2008, 1cm, Stage II, 2/13 nodes, ER+/PR+, HER2-
Mamita49
Montréal
Joined: Feb 2009
Posts: 194
Nov 6, 2009 08:35 am Mamita49 wrote:

Barbe,

WHY, what reason, you seem to be very intelligent woman, did you ever ask. 

Carol, lumpect. 4xA/C 4xTAX, Mast. in Aug. 2009, Rad. Tamox
Diagnosis: 12/15/2008, IDC, 3cm, Stage IIb, Grade 3, 2/7 nodes, ER+/PR+, HER2-
barbe1958
Barrie, ON
Joined: Nov 2008
Posts: 5,194
Nov 6, 2009 08:52 am barbe1958 wrote:

I was told that the tumour board didn't think I needed anything else after the double mast. At the time I was so relieved! But then as time goes on....

Papillary Carcinoma with ITCs and IMLN, Bilateral Mastectomy Dec 16th/08 No re-con. No foobies.
Diagnosis: 12/10/2008, 1cm, Stage II, 2/13 nodes, ER+/PR+, HER2-
PureE
NC
Joined: Sep 2009
Posts: 387
Nov 6, 2009 09:12 am PureE wrote:

Barbe-My mom had a stage one-no nodes-very small tumour. She did lumpectomy and rads.ou  That is very strange. You had nodes-noes equal chemo and rads. Did you get a 2nd opioun. That is very strange. You should have atleast had rads-your tumour was quite small but you had nodes.

JMV
leftyAKAnan…
Joined: May 2008
Posts: 2,871
Nov 6, 2009 09:36 am leftyAKAnancy wrote:

My family and I agonized and read and researched and decided on no rads for me.   Quality of life versus quantity at my age (63).  Besides, I am a widow and my only son is grown and married.   I am not ready to depart this earth, but that is not really up to me.   This may or may not move my departure date closer.  For now, perhaps I live in a bubble, but I am able to be a friend and I have friends and family and I enjoy life.   


Diagnosis: 5/2/2008, IDC, 6cm+, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2+
mrsb45
ma
Joined: Aug 2008
Posts: 75
Nov 6, 2009 09:59 am mrsb45 wrote:

I had very small tumors lumpectomy , then 2nd lumpectomy to get clear margins and SNB -neg followed by 35 rad tx's including 5 boosts. Local recurrance 10 mos. later with 3 new small spots ( 0.5-0.7cm) in exact spot of previous lumpectomy and rads boosts which were not seen on digital mammo, only on MRI and US. So very scary if I didn't have MRI to be sure. So I don't understand why the rads+Tamoxifen didn't take care of these new area's......


Diagnosis: 5/10/2009, IDC, <1cm, Stage Ib, Grade 3, 0/9 nodes, ER+/PR-, HER2-
coonie
Joined: Jun 2008
Posts: 5,522
Nov 6, 2009 10:03 am coonie wrote:

Ooohhhhh I've thought about this topic many times. My oncologist told me since I had mastectomy, I didn't need rads. I sure hope he's right. I think I'll always have a little "worry" in my mind. Good luck to all of you!

~ One day at a time ~
Diagnosis: 11/14/2007, IDC, 2cm, Stage IIa, Grade 2, 0/15 nodes, ER+/PR+, HER2+
hrf
ON
Joined: Nov 2004
Posts: 887
Nov 6, 2009 10:13 am hrf wrote:

I had bilateral mx and still had rads on the newly affected side because lymph nodes were involved. Makes a big difference if lymph nodes are involved. Last time I had rads because only did lumpectomy and not mx but no lymph nodes at that time (other side) .

leftyAKAnancy, I didn't find the rads to be a quality of life issue.....it's an inconvenience to go 25 times but it's things like mx, Arimidex and chemo that, IMHO, are more quality of life issues. 63 is still considered young these days.

BRCA2+ first dx in Oct. 2004 2nd dx Feb. 2009 a new primary
Diagnosis: 2/6/2009, ILC, 2cm, Stage II, Grade 1, 4/6 nodes, ER+/PR+, HER2-
pickle141
Edmonton, AB
Joined: Mar 2009
Posts: 352
Nov 6, 2009 10:20 am pickle141 wrote:

I had left mx. Multifocal total 4.6 cm. No nodes. Chemo but no rads. The rad onc said that the protocol for rads after mx is that the tumor must be 5 cm. They do rads on smaller sizes if there was node involvement. Since mine were 4.6, my med onc thought I should get rads. The rad onc said no....they don't look at the total measurement just the largest tumor (which was 2.5 cm). He said they always do rads after lumpectomy though. Honestly, there are so many different stories  I just don't know what to think sometimes. Just hope they gave it all they got!

"Every day do something that will inch you closer to a better tomorrow."
Diagnosis: 1/23/2009, IDC, 4cm, Stage IIa, Grade 3, 0/3 nodes, ER+/PR+, HER2-
prettyinpin…
Ontario
Joined: Apr 2008
Posts: 5,161
Nov 6, 2009 11:11 am prettyinpink100 wrote:

One of the reasons they did extensive rads for me was to hit the lymph nodes in the chest as well.  

Barbe, will we be seeing you tonight? 

PIP - multi focal, FEC100/Tax, rads, dble mast with no recon, ooph/hyst, arimidex
Diagnosis: 2/1/2007, IDC, Stage IIIb, Grade 2, 9/16 nodes, ER+/PR+, HER2-
Karenp62
Marion, NC
Joined: Jun 2008
Posts: 113
Nov 6, 2009 11:20 am Karenp62 wrote:

I had bilateral mx, cytoxen & taxatere and now tamoxifen. But no rads. Stage 1, no nodes. Should I worry??


Diagnosis: 6/1/2008, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
Karenp62
Marion, NC
Joined: Jun 2008
Posts: 113
Nov 6, 2009 11:21 am Karenp62 wrote:

I had bilateral mx, cytoxen & taxatere and now tamoxifen. But no rads. Stage 1, no nodes. Should I worry??


Diagnosis: 6/1/2008, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
barbe1958
Barrie, ON
Joined: Nov 2008
Posts: 5,194
Nov 6, 2009 11:47 am barbe1958 wrote:

Karen, that baby looks impossibly small!

Papillary Carcinoma with ITCs and IMLN, Bilateral Mastectomy Dec 16th/08 No re-con. No foobies.
Diagnosis: 12/10/2008, 1cm, Stage II, 2/13 nodes, ER+/PR+, HER2-
prettyinpin…
Ontario
Joined: Apr 2008
Posts: 5,161
Nov 6, 2009 11:49 am prettyinpink100 wrote:

Oh crap!  I was just reading signatures to see if there were certain stages that didn't get rads.  Then I came upon one that made me think "of course you had rads girl, with those stats.."  It was me!!  My immediate thought was gee, I feel too good for those stats! LOL

PIP - multi focal, FEC100/Tax, rads, dble mast with no recon, ooph/hyst, arimidex
Diagnosis: 2/1/2007, IDC, Stage IIIb, Grade 2, 9/16 nodes, ER+/PR+, HER2-
PureE
NC
Joined: Sep 2009
Posts: 387
Nov 6, 2009 02:19 pm PureE wrote:

so strange-even my stage 1 friends had rads. Maybe it's because they were so young.

JMV
jenn3
New Orleans, La
Joined: Jul 2009
Posts: 367
Nov 6, 2009 04:51 pm jenn3 wrote:

I had a dbl mx w/nod involvement and initially told I didn't need rads, but after surgery the onc changed his mind because of the node involvement.  I was told (and path report showed) that there was one node that the cells were "escaping from" from for lack of a better term - I'm too lazy to get up and get the report right now.  I will have rads once I finishe chemo.


Diagnosis: 6/19/2009, IDC, 1cm, Stage IIIa, Grade 3, 4/15 nodes, mets, ER-/PR-, HER2-
gfrey
Bloomington, IN
Joined: Oct 2009
Posts: 33
Nov 6, 2009 06:23 pm gfrey wrote:

I'm wondering if anyone has had rads after immediate reconstruction? I had neoadjuvent 4xAC & 4xTax, just had a bilat mastect w/axillary dissection Oct. 19 and went ahead with tissue expanders. I meet with the rad onc on Nov. 19 to get started w/radiation. I've been doing my arm exercises to get range of motion back and I'm doing pretty well with that. Does anyone have additional advice for the rad process? Thanks!


Diagnosis: 5/5/2009, IDC, 2cm, Grade 2, 4/12 nodes, ER+/PR+, HER2-
Diana63
Oh
Joined: Oct 2007
Posts: 512
Nov 6, 2009 10:35 pm Diana63 wrote:

I had a left breast mastectomy 4 positive nodes, they gave me 27 rad treatments. I didn't think I would need rads after mastectomy but the oncol. changed it.

“Be still, and know that I am God” (Psalm 46:10).
Diagnosis: 10/6/2007, IDC, 5cm, Stage IIIa, Grade 3, 4/9 nodes, ER+/PR+, HER2-
SherriG
Joined: Jan 2005
Posts: 4,861
Nov 6, 2009 10:42 pm SherriG wrote:
jenn, I had that, too.  It is called extracapsular extension.  Yes, the rads are supposed to get all the stray cells in the area.  Do you know how many fields you are getting zapped?
gfrey, I didn't have recon so I can't help, but I'm sure someone will be along with answers. 
OK, for those of us who are stage 3, you see how it is?  We are certainly not in any kind of "gray area" so we get the whole kit and kaboodle!  It really makes treatment decisions easy for us since we get the kitchen sink thrown at us.Tongue out 
For the record, I had a bilateral mast with small margins and my rad onc hit me with 30 rads with a bolus every day.  I haven't met anyone else who got the bolus each time.  Anyone else get that?
Diagnosed 11/05/04 Stage 3 ILC "Lump is a four letter word!" Sherri
apple
Shawnee, KS
Joined: Dec 2008
Posts: 1,303
Nov 6, 2009 11:39 pm apple wrote:

i've never heard the term bolus Sherri.. what is it?


Diagnosis: 5/10/2008, IDC, 5cm, Stage IIIc, Grade 3, 4/9 nodes, ER+
SherriG
Joined: Jan 2005
Posts: 4,861
Nov 6, 2009 11:45 pm SherriG wrote:

A bolus is this rubber pad-like thing that the tech puts over the different fields as they zap them.  It is supposed to maximize the radiation and, at the same time, pull the radiation back towards the skin so it doesn't go too deep.  My tumor was right below the skin.  Not everyone gets the bolus, but those that do usually get it every other day.  I didn't ask why I had to get it every time.  I didn't want to know!

Diagnosed 11/05/04 Stage 3 ILC "Lump is a four letter word!" Sherri
jenn3
New Orleans, La
Joined: Jul 2009
Posts: 367
Nov 6, 2009 11:54 pm, edited Nov 7, 2009 12:43 AM by jenn3 jenn3 wrote:

Sherri - Extracapsular extension is exactly what was on the report - thank you, still too lazy to walk one room over and pull the rpt.  I haven't met with the radiologist yet and quite honestly don't know a lot about it, so the answer is no I don't know how many fields yet.  With that said I really don't know what that means either.  My surgical ongologist told me they were going to focus on the far left side of my breast and under arm area.  Is that an answer??  I briefly met the radiologist as an introduction when I met "my team" right after dx, but am assuming that I'll be meeting with the radiologist to discuss the plan fairly soon if they plan on starting rads in January. 

I sure do feel like I've had the entire kitchen sink and everything in it thrown at me...........

Sorry I can't answer the recon question, I'm not there yet.

I just pulled the report - it says extranodal extension - is that the same as extracapsular?


Diagnosis: 6/19/2009, IDC, 1cm, Stage IIIa, Grade 3, 4/15 nodes, mets, ER-/PR-, HER2-
Gitane
CA
Joined: Feb 2008
Posts: 829
Nov 7, 2009 12:40 am Gitane wrote:

My onc said after my chemo and bilat mast that he thought I shouldn't have rads.  He said there was a chance it would help me avoid local recurrence.  He also said there was a chance it would damage my ribs, heart, and/or lungs since they would be radiating the chest wall.  I had tissue expanders at the time, but the significance of that on reconstruction was never discussed, I don't remember why.  Seems like I should have been asking more questions about that but I didn't.   I got a second opinion at UCLA.  That onc said that getting rads in my situation was controversial.  He felt it was really impossible to weigh the pros and cons as too much was still being researched and unclear.  I also heard the 5 cm size as a cut off.  My tumor was multifocal over an 8 cm area.  Well, I didn't have rads, we'll see, I guess, if I made a good decision.

Dx 8/18/05, Pleomorphic ILC, multifocal, multicentric, G2, 1/9 nodes positive, OncotypeDX 23, ER+ PR- Her2-
KerryMac
North York, ON
Joined: Jan 2009
Posts: 1,699
Nov 7, 2009 08:14 am KerryMac wrote:

I had the bolus every second time too Sheri - getting it every time must mean you are extra special!!

Kerry - Mx, Chemo, Rads, Ooph, Arimidex, Zometa
Diagnosis: 11/2008, IDC, 6cm+, Stage IIIa, Grade 3, 6/11 nodes, ER+/PR+, HER2-
PureE
NC
Joined: Sep 2009
Posts: 387
Nov 7, 2009 08:56 am PureE wrote:

I am going to interview 3 rads oncologists so if I get any good info I will let you know-I am meeting with a Duke, UNC, and MD Ander Rad oncologist.  My mom never had issues with rads-no se so I am hoping I don't either-not ot mention I grew up in Florida so burning my skin is old school for my body.

JMV
YATCOMW
Joined: Oct 2008
Posts: 174
Nov 7, 2009 01:24 pm YATCOMW wrote:

I had rads since I did not have clean margins....and so many nodes!!!!

I flew from Florida each week to MD Anderson in Houston because I was told they were the best and they were one of the few that also hit the IM nodes.

There are some studies that show that those with masectomies should get the rads but I am not sure that is the final word yet.

I wish I could have avoided them because reconstruction does not look great....

Jacqueline


Diagnosis: 5/2004, ILC, 6cm+, Stage IIIc, Grade 3, 17/24 nodes, ER+/PR+, HER2-

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