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anyone refuse radiation after lumpectomy

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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2018 at 7:20pm
The question to ask is " what percentage improvement is there in the "five year survival without recurrence" - by having chemotherapy. Then, compare that to side affects/physical dangers in your age group.

Edited by gordon15 - Nov 10 2018 at 7:46pm
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2018 at 3:57am
I was diagnosed in 2009.  I was stage 1, had a 1.4 primary, with .7 high grade DCIS.  I had two lumpectomies, the second one for a dirty margin.  I consulted with many different oncologists and they all recommended Taxotere/Cytoxan.  In the end I did not do chemo or rads.  But it was a very difficult decision.  I had secondary health issues which I had to factor in, however, into my decision to skip chemo. 

I am reluctant to broadcast that I skipped chemo and rads because it is a very dangerous road to take.  I would never have skipped any of these options had I been stage 2 or higher and if I did not have the secondary health issues, I would have probably done at least chemo. 

Also, it's not that I did nothing at all.  I went on an integrative protocol and made lifestyle changes.  It was mostly for my mental health because it was all very scary to be skipping chemo and other interventions.  I had to feel as though I was doing something, but the truth is that no alternative medical protocol is strong enough when it comes to this.

I did however have extremely aggressive pathology--so aggressive that the pathologist called the diagnosing surgeon late at night to discuss her findings.  I rolled the dice, to plainly say it, and I would not encourage anyone else to do this.  TNBC is simply too aggressive to risk it.


Edited by MsBliss - Nov 12 2018 at 12:49am
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions
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Post Options Post Options   Thanks (0) Thanks(0)   Quote parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2018 at 5:15pm
To give a little more insight. I did neoadjuvant chemo, had a lumpectomy with clean margins, 1 node removed that looked clean. Further pathology showed it did have some cancer cells present so I went on to do more chemo, finishing with 30 rounds of radiation. I had a local recurrence near the end of radiation and went from NED to stage 4 in a few months. I live with what I chose treatment wise knowing I did what I felt was best for me at the time. You can throw everything at this disease and get nothing back or you can do the minimum and be clear the rest of your life. There are no guarantees. Do what you feel is best for you, but I will warn that if a recurrence happens do you want to look back and know you could have done more the first time?

Looking back I wish I would have done a double mastectomy, but I did what I thought was right for me with the information I had at the time. It’s too easy to look back and play the woulda shoulda coulda game and to some degree I think we all do no matter the future outcome. Whatever you choose please don’t underestimate this disease.
Dx 9/016 Age 28, 3c, Grade 3, 1/5 Nodes, BRCA -, KI-67 >90%, I-Spy 2, DD A/C, Lumpectomy w/ 3 nodes removed, TC, Rads
2/2018 recurrence + brain & lung mets, Craniotomy, SRS, IPI-549, Opdivo/Avastin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunny70s Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2018 at 8:44pm
I did three a/c and quit cause of heart issues.  Then got talked into 2 sessions of paclixatel and the neuropathy was just too overwhelming, including eye and ear issues. (Have 3 viral issues with neuropathy tendencies that made it worse.) So quit before last two. 

Now I'm facing radiation which I know won't be as bad. But at 70 I really want to do 3 weeks, 5 days instead of 5 or 6 weeks, which some radiation oncologists will do for older women. 

If they KNOW there still is cancer there, it's more understandable. But if it's "just in case" and the side effects (especially bad lymphedema and who knows what else) set in, I'll probably go running for the hills again.

The viral issues convince me it's coming back no matter what I do, so warnings it MIGHT come back don't get me too excited.  Just trying to keep my mind and body functioning enough to get certain things done before transition to the other side. And if I keep to good diet/supplements/positive thoughts I might get lucky and live a lot longer. 

So anyway, up in the air on radiation but have another month to decide.
DX/7/11/18 IDC, Right, 3.3 cm, Stage IIb, Grade 3, 18 nodes, Er-/PR-/HER2- Had surgery; Five of 8 chemo sessions done then quit. Probably will do radiation.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2018 at 9:17pm
You could do the radiation and just see how it goes. If it’s not working with your other health things going on then stop and say you did what you felt like you could do safely.

For me radiation wasn’t anywhere near as bad as chemo.

Good luck and I hope it goes well w/e you choose.
Dx 9/016 Age 28, 3c, Grade 3, 1/5 Nodes, BRCA -, KI-67 >90%, I-Spy 2, DD A/C, Lumpectomy w/ 3 nodes removed, TC, Rads
2/2018 recurrence + brain & lung mets, Craniotomy, SRS, IPI-549, Opdivo/Avastin
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