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anyone refuse radiation after lumpectomy

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Fats1976 View Drop Down
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    Posted: Mar 25 2013 at 1:43pm
hi all need advice, mom was diagnosed with tnbc stage 1, she had a lumpectomy, 1.8mm tumour, got good clear margins of 2cm all round, she's being doing cmf Chemo 12 infusions we have two left, she's tired, and side effects have just been getting worse with each infusion, she's now refusing radiation, says she want's to rather go the alternative route, once chemo is complete, anyone here refuse radiation?
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beck View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2013 at 2:09pm
IM 63 I HAD CMF CHEMO AND 33 RADATION TREATMENTS , READTION IS MUCH EASIER THEN CHEMO , I HAD REDNESS IN UNDER ARM AND BREAST WHICH HEALE PRETTY FAST, NO OTHER SIDE AFFECTS , FROM WHAT I HEAR AND READ RADATION IS A BIG HELP IN NOT GETTING REACURRANCES, THEY WONT START RADATION UNTIL SHE HAS A MONTHS REST OR SO , BUT I THINK IT IS IMPORTANT TO HAVE IT, BECK
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Fats1976 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2013 at 3:32pm
I was hoping for a good break between chemo and rads, so that she re-considers, I think she's just having a tough time right now, with the chemo, feeling terrible, with each infusion it's gotten more tough! What doesn't help is people have been telling her that Radiation is worse than chemo, and being her left breast going to damage her heart! And lots of other side effects, hopefully, when we meet the rad onc, he or she, will put her @ ease, thanks for your reply BECK..... God Bless
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beck View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2013 at 5:08pm
NO NO RADATION IS NO WAY WORSE THEN CHEMO, I ALSO HAD PROBLEMS WITH cmf CHEMO , WAS IN HOSPITAL ONCE FROM BLOOD COUNTS TO LOW , EVEN THOUGH THEY SAY MOST DO VERY WELL ON IT, RADATION IVE DONE IN 2007 FOR BREAST CANCER ER POSTIVE, SO THIS WAS SECOND RADATION, I ALSO HAD IT ON LEFT SIDE, I WAS FINE RADATION IS EVEN LIKE CHEMO AT ALL , YOU DONT LOSE YOUR HAIR , IT DOSENT AFFECT YOU THE SAME WAY , JUST THE SORENESS , WHERE THEY RADATE , YOU THEY GIVE YOU CREAMS FOR THAT , AND YOU WILL HAVE NOTHING UNTIL THE LAST 2 WEEKS OR SO , NOTHING IN THE BEGINNING EASC SESSION TAKES ABOUT 10 MIN.    BECK
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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beck View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2013 at 6:31pm
I WONDER IF THOSE THAT TOLD YOU RADATION WAS WORSE , HAD OR KNOW SOMEONE WHO HAD IT TO THEIR BREAST , BECAUSE FROM WHAT IVE BEEN TOLD , WHEN ITS YOUR BREAST , YOU DONT GET AS BAD A SIDE EFFECT , THEN IF IT WOULD BE A MAJOR ORGAN OR YOUR BRAIN
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2013 at 10:05pm
Fats 1976....So sorry your Mom is having a hard time with chemo and her spirits seem to be wagging.

Interesting that you write about not doing radiation.....as I'm starting my radiation tomorrow....my very first treatment.  I am actually looking forward to it.  Can't believe I'm saying that, but as I believe it is in my best interest, I want to get it started and be finished with it.  

It is my understanding that you definitely need radiation in breast where lumpectomy was as the statistics are very high on a recurrence there without radiation (something like 30-40% I think). Radiation does kill cancer cells.  The newer radiation machines are much better than the older ones.  Fortunately, I'm going to a place that has all this "pinpoint" technology.  Mine is on my left (heart) side as well.  I was concerned about this too, but feel much better after talking with Radiation Oncologist and I believe that it is now much safer especially with these new latest technology machines.

My medical oncologist told me that you have a year from surgery to begin radiation.  Like Beck said, I think they will give your Mom some time after chemo to rest  a bit before radiation would begin.

Please know that I am new to all this and am learning as I go right now, but I would encourage her to consider having radiation......at the very least to speak with radiation oncologist before your Mom refuses.

Wishing you and your Mom the very best.

Wishing you both peace,
Kaye
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2013 at 10:43pm
There have been studies that show radiation should begin a month after chemo is completed.
Radiation kills any cancer cells lurking in the area. A radiation field usually covers more area than where the tumor was located.
Nothing is easy nor guaranteed in much of what we do in our treatment.
Take care.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 2:21pm
I often say I am a nation of one.  I opted out of both chemo and rads.  I just had my four year anniversary.  That being said, my breast surgeon and second opinion surgeon were FURIOUS with me for skipping it all, esp rads.  They felt it was necessary to "sterilize" the field because statistically, a local recurrence is more likely to spread to the nodes and other areas.  I was definitely rolling the dice.  I would not have taken such a chance had my cancer not had some favorable features.

If I was going to skip all the recommended therapies, I had to make an effort to do other evidence based supportive therapies.  It wasn't easy nor cheap.  You have to know your specific histopathology, which means extra pathology studies, and you have to know what you are doing.  Even with that, it is all very "experimental".  I used specific supplements which were pharmaceutical grade, specific topicals, and a few prescription meds with the guidance of a specialist in integrative oncology.  NONE of it is covered by insurance.  Skipping radiation isn't simply a matter of going to the vitamin store and finding what looks like an alternative substitute.

So yes, some of us do skip rads, and even chemo.  But it is rarely done.  If you don't know what you are doing, it may not be worth it.
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 Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 2:39pm
Dear Fats 1976,
 
I know you mother is growing weary of the chemo and we all understand. 
 
I wanted to say that I did not have radiation.  But, I had a mastectomy and participated in a clinical trial.  I had ACT plus Gemzar, dose dense.  I am an almost 7 year survivor.  I was told that if I had a lumpectomy, radiation would have been required.
 
I wish your mom the best of luck.  I do believe radiation is in order, since she had a lumpectomy, but that is just my opinion.
 
God Bless,
Lillie
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 - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 07 2013 at 6:26pm
Hoping by now your Mom understands the importance of radiation.  I had a BMX, yet wouldn't have hesitated to go on to adjuvant radiation, as tired of treatment as I was.  Although I can understand your Mom's feelings being zapped so hard by chemo then jumping into yet more treatment.. I'm sure it was overwhelming to even think about.   But rads are totally different as already stated and extremely important to kill off the bad guy cells. 

It took enough opinions against rads (risk/benefits)  to make me relax with NOT having radiotherapy.  With TN you need to be aggressive as possible upfront... plus the SE are a cake walk compared to chemo- from everything I've read and heard.

xxx Mindy
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Apr 09 2013 at 7:51pm
I KNOW FIRST HAND HOW YOUR MOM FEELS , AS I DID THE CMF CHEMO , WHEN THEY TOLD ME I NEED 6 TRATMENTS, I WAS LIKE OH I CAN DO THIS, LITTLE DID I KNOW 2 TREATMENT ARE KNOW AS ONE, YOU GET IT IN HALF TREATMENTS, SO YOU REALLY DO 12 TREATMENTS YOU DO 2 IN A ROLL , THEN 2 WEEK BREAK AND SO ON, SO BEFORE YOU ARE DONE YOU ARE WORN OUT, AND FOR ME IT WASNT AN EASYCHEMO,.. BUT I DID DO RADATION.. IT WAS MUCH EASIER AND WANTED TO GIVE IT MY ALL, SO I HOPE YOUR MOM CHANGES HER MIND BECK
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CJWatson Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2013 at 3:23pm
I do plan radiation having finished my chemo and lumpectomy, just to catch any stragglers which may have been missed.  Being 64, I know how much chemo (A/C x 4) can take out of you.  For myself, I decided that I could face the next treatment step far better if I were rested and calm.  I waited over three months before going on to surgery after my chemo ended around Christmas.  Had the lumpectomy and a SLB and all the pathology was negative.  I plan to wait a few months to heal the incisions (and heal my emotions) before radiation.
 
Maybe give mom a break and let her rest, feel human again.  A month or two probably will not make any difference and is certainly better than an outright 'never' refusal.
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 19 2013 at 7:19pm
My own theory based on bits and pieces I'm reading is-  at some point rads will be recommended for ALL hormone negative, HER-2 negative patients who are grade 3 and have true invasive cancer--- regardless of lumpectomy or mastectomy, LVI, KI-67 or node status.  It appears this is the case in some countries now due to the aggressive nature of the beast. 

While I hope your Mom gained strength and is ready to finish all treatment, I'm also wishing you & your Mom peace with whatever she decides. 
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Fats1976 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2013 at 3:53pm
hey all you wonderful ladies, Thanks so much for your input! Mom did her last chemo infusion on the 9th of April, @ that appointment oncologist gave us referal papers of tests and last blood results, and business card of radiation oncologist! Onc assured her that if she just completed 6 months of Chemo, that she'll manage radiation easily, He said she can have a small break, he wants to see her 23rd of July, so by this time she must be done with radiation, so I'm guessing we'll have to start rads early June the latest, so glad she's moving onto rads, we'll be meeting radiation oncologist early May, my question now is what will procedure be, will there be more tests before radiation begins? Do they do bloods again?  Thanks so much Fats! xxxxx
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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2013 at 11:28pm
Fats 1976,
Your mom is probaly totally exhaused from her chemo treatments she needs a little break so her body can recover. I am glad to read that she is having radiation it is very important to hit this disease with everything we can as far as radiation that was no big deal for me just a bit tiried towards the end of treatment no big deal for me and i did have labs done once a week during treatment your mom is half way there she will do fine and it is important to eat healthy during treatments.
Wishing the best for your mom...
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2013 at 7:58am
Fats1976....I have two more rads to go and have had no problems.  I am driving three hours round trip for these rads every day (except weekends) and I will actually miss doing this I think.  I've gotten so use to seeing all the great folks at the treatment center and other patients.  It's going to be sad for me to say good-by.

No  blood test prior to rad was done on me.  My rad onc had all the paperwork on what I  had been thru with chemo before and they did weigh me and she examined me, but I don't recall any other tests being given.  The rad onc and the rad nurse spent a lot of time with me explaining and talking on the first day I met with radiation onc.   CT like scans were taking in the radiation room and all sorts of measurements made with me on the table......this took a while....probably 45 mins. or so.  They marked up my breast/chest area with paint markers.  My rad onc does not tattoo.   They tried to put me face down on the board but my incision where lump was was too high for it to be properly radiated so I had to take the radiation on my back.  It's better if you can be face down which lets the radiation miss your organs better, but lots of people have to be on their backs.....no problem.   The actual radiation time is very short.....just seconds.   The place I go to is spa like.  I have a beautiful area ......wooden lockers where I have a key to mine (to store your purse and clothes when you change into robe)  and I have a hot pink waffle type robe I put on every morning.  I go and sit in a nice area and chat with other patients for only a moment before the therapists call me for my radiation.  I'm in and out very quickly.  Every Monday after my rad session, I meet with  my rad onc and she examines me and we chat.

I've done well....no burns.....just a bit of a rash here at the very end.  I have used Miaderm (given by them) since my first treatment.  I also, with rad onc's permission, have used an aloe spray.

Hope this helps.....best of luck to your Mom and to you.  

Kaye
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2013 at 3:40pm
Great news Fats!  I'm sure you're relieved she's moving forward!

xxx
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2013 at 5:09pm
fATS I HAD THE ROUTINE BLOOD WORK I GET , BUT NOTHING ELSE AT THE END OF THE WEEK EACH WEEK I WOULD SEE RADOLOGEST, ALL HE DID WAS TALK TO ME AND CHECK MY SKIN, SHE WILL SEE NOT MUCH AT ALL IT SHOWS UP MORE IN THE LAST 2 WEEKS THEY WILL GIVE YOU CRAMS AND ADVICE BECK
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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beck View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2013 at 5:16pm
I WANTED TO ADD MY SKIN GOT LIKE A BAD SUNBURN AT THE END , LOOK FOR SOFT COTTON T SHIRTS THEY HELP ALOT NO ROUGH CLOTHING . THERE WERE TIMES I GOT SORE JUST BELOW BREAST WHERE SKIN TOUCHES SKIN I ROLL UP A PIECE OF SOFT CLOTH AND PUT IT THERE , THIS WAS THE ADVICE THEY GAVE ME , ONCE RADATION IS DONE , IT HEALS LIKE IN A WEEK , BUT WILL REMAN A DARKER COLOR FOR A LONG TIME NOT TO WORRY   BECK
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2013 at 1:14am
Beck, I too after a few treatments wore a men's white cotton  undershirt....washed it several times so it would be very soft.  I left my bra off.  I just put my other clothes on top of this.  Fats, if it's not too hot where you are, the zippered sweatshirt type jackets work great over tee shirt without bra....easy on/easy off.   
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy
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