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anyone refuse radiation after lumpectomy

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Linda2907 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Linda2907 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 05 2013 at 4:42pm
I finished my radiation treatments Wednesday (July 3). Sigh. I am sore. Underarm is very dark red, especially where the incision was to remove the lymph nodes.

Under the breast is quite red, as the area at the lumpectomy scar. My nipple is about 3x the size of the unaffected breast and also bright red. If Rudolph can't make this Dec 24 ... OK, really tasteless joke.

I'm having quite a bit of pain, but it doesn't seem like the pain I was told to expect. No stabbing pain, just aching in the three main places I mentioned. More like a muscle pain than a knife. Not really like a sunburn at all. And, yowsa, sometimes it just gets so itchy I could crawl out of my skin. Good thing that neither the pain nor the itching lasts long, just suddenly shows up big time, stays a minute or three, then leaves.

I frequently wake up at night because of the pain; I have to be very careful how I sleep - on the back seems best.

They wanted me to have 16 treatments + 4 boosts. I was so sore and swollen by #12, I said I wasn't going to have the boosts. Well, RO sneaked 2 in by replacing #'s 15 & 16 with boost sessions. OW! OW! OW!

My RO explained that I was having fewer sessions, but with the same level of radiation that the standard 25 - 30 would have given me. About ½ the dates, about 2X the dose per session.

I originally discussed with my surgeon the option of having a mastectomy, and he said the outcomes from lumpectomy + radiation are the same as a mastectomy, so he didn't want to do it. Yeah, well maybe so, but if I had had the mastectomy in April, I'd have been done healing by now. I really need to start listening to myself. I know some (most?) women really want to keep their breast, but I couldn't care less.

Linda
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MLindaG View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Jul 05 2013 at 5:09pm
Linda, Congrat's on completing the rads!!!  I remember walking out of the hospital that day and feeling like a weight had been lifted off of me~  I could not stop smiling!   I finished mine the end of May and I'm still wearing a bra at night....... I did get quite a few stabbing pains which I think was my nerve endings in my breast  started to fire back up as underneath my arm pit I'm actually starting to feel a little bit.   
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Linda2907 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2013 at 12:52pm
Thank you, and congratulations to you, too!

I can't imagine putting on a bra right now. Lucky for me, I live with my husband, cats & dogs and none of them are complaining about my clothing choices. Other than them, I'm in seclusion. Phone calls & emails only.

During my treatment, I wore a light sports bra. I bought a few at Walmart pretty cheap. I also bought them a size larger than I would normally wear so I wouldn't put too much pressure on the girls.

Turns out that was a good decision given the swelling on the target breast. And, easier to get on and off.

Hope you heal quickly and completely and forever.
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MLindaG View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2013 at 3:11pm
I think what helped me is my two weeks of no radiation after the 5th week..........due to many large blisters.........once they were healed the boosts were not bad at all - very targeted - I did not get any more blisters and the areas that were so sore after another week and a half of healing were all good at that point!  I did not wear a bra for a couple of weeks when all he$$ broke loose with all the blisters!!  Thank goodness for cuddle duds!  Soft and comfy........I too had bought some bras in a bigger size and used those through much of the rads.  I was pretty good until week 5.........So it ended up about 3 weeks of yuk.........in the big picture.......only a blip!   I had my first chemo last July 9th!!!  Wishing you continued healing!!! 
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tennislas Quote  Post ReplyReply Direct Link To This Post Posted: Jul 07 2013 at 11:19pm
I am looking back on these treatments, and I see that things have changed.  I had mammosite radiation therapy, and I don't even think it is used anymore.  I need to check into that.  My experience with the treatments weren't bad, but I still don't understand why radiation is needed at all with clear margins or after a complete mastectomy if there weren't any problems seen in the lymph nodes.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2013 at 9:56am
Dear Tennislas,
I did not have radiation.
I had a left mastectomy and 1 lymph node had miniscule involvement. 
I did a clinical trial Dose Dense A/C times 4 and Dose Dense Taxol/Gemzar times 4.
The protocol did not call for radiation since I had a mastectomy.
 
It is the call of the oncologist some times as whether radiation is used. 
 
I am a 7 year survivor, so all I can say is I believe 'no radiation' made no difference in my survival.  I'm sure this is not true in so many situations; so I'm just sharing my experience.
 
Love and 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 - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Fats1976 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2013 at 10:47am
Hi Ladies, hope you are all well, so I originally started this thread, just want to thank all of you for the effort to adding to my question, you all gave such good advice, that I was able to pass onto mom, today she completed her 28th treatment, and from tomorrow starts her boosts! She'll do 7, so next Wednesday, We'll be DONE!!! She Can't wait! She's slightly red, peeling under her arm, has quite a bit of stabbing pains and feels like her breast is roasting! But she's managing, I've been told the boosts are targeted @ tumour site only! So the worst is over???? do you all agree? @ Tennislas don't know when you were diagnosed, but things have definetly changed! They always changing! My best friend was diagnosed 10 years ago, and she said Chemo felt like she was so close to "death" She lived in her bathroom! And she lost so much weight! My mom now 10 years later, vomited once during her six months of chemo, and Gained 12 pounds during treatment! this all because of medication that is now given to you, with Chemo... my mom also had only one node removed because of the "sentinel node biopsy" which they remove first node closest to tumour, if that comes back negative, they don't remove any more, my best friend 10 years ago had most of her lymph nodes removed, they all came back negative, but left her with Lymphodema, as I understand My mom even though she was only stage 1, and got clear margins, had to do chemo because of it being tnbc, oncologist said all it takes is one little cell, that wasn't visible even under pathologists microscope, to have a recurrence, the radiation was for same reason, and because she opted for a lumpectomy!  It was our "insurance" policy to try and prevent any local recurrences! Thanks once again to all of you, our jouney is hopefully, God willing coming to an end, this sight has been my best friend my bible! Couldn't have done this with all the advice, that always gave us peace of mind! God Bless you all! Love Fats
Mom Dx 9/12
Stage 1c No Nodes involved.
Lump clear margins 10/12. Started 6 months of cmf chemo 11/12. Ended 4/13. RADS 28 tx 7 boosts ended 7/13. 02/14 Scans NED. 10/14 Scans NED. 6/15 Scans NED.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2013 at 11:52am
Congrats to your Mom Fats!

I remember the last day of radiation very well. Feels like such a weight is lifted off your shoulders. I hope she never has to travel this road again!

Just remember, the road to recovery takes time; she will be healing for the next several months and may experience fantom pains, etc, which can make the mind think bad things...lol. This is normal.

I wish the best for her and you for a cancer free future...

Lisa
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ctlindah Quote  Post ReplyReply Direct Link To This Post Posted: Jul 10 2013 at 3:26pm
Hi Linda,
 
I finished my radiation the end of May and it sounds like you have many of the same symptoms I did.  Sometimes it was really hard not to give a good scratch in public!  Bet you won't be able to help Rudolph this year Smile   I did notice that the radiated side was much warmer for a good 3 weeks or so after treatment ended.  I also went to Walmart and got a few Ahh Bras in a larger size when this whole journey started.  Worked great after surgery and again during radiation.    
 
Linda
 
DX IDC TNBC 10/12 age 48, Stage 1, Grade 3, 1.5cm
Lumpectomy DD AC & Taxol BRCA- rads X30 finished 5/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Linda2907 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2013 at 11:48am
Well, I think I'll leave the scratching in public to my dogs! Actually, I wouldn't dare scratch, I'm too afraid of damaging my breast with my finger nails.

I also noticed that the radiation side was hotter to the touch. Especially right after treatment.

And, yup, Rudolph is on his own. The nipple is no longer bright red, but reddish brown. It's no longer 3x the size of the unaffected breast, but down to 2x.

Tennislaw: I am also wondering (understatement) about why I needed radiation. No margins, no nodes, WTH? I'm sorry I had it because I am not at all convinced that it was necessary or will make any difference in my outcome.

As far as blisters that peel, well, that sounds nice. I seem to have gooey pus pods that leak. For some reason the only place I had an ugly skin reaction was on the lymph node incision. Where there were no bad nodes! Did they target my radiation properly? I don't know. The lumpectomy incision turned a spectacular bright red immediately, but just stayed that way. That incision is a very nice, straight, thin, white line. The area around the incision is still very red, but no skin problems at all.

To my breast cancer sisters who went back for boosts after skin eruptions: I salute you. I wouldn't go back for a million dollars! OK, maybe a million, but I'd need it in cash.

The overall breast pain is now less than 25% of what it was, and even then just on the outside breast below where the lymph node incision was made. I am also starting to feel better, my energy level is improving. I feel like moving around and doing some housework. I just have to watch reaching or stretching a little too far.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tennislas Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2013 at 6:42pm
I didn't have any overt effects that I "feel" from either the radiation or the chemo that I had, but now looking back, I'd like to say that I would have had the courage to refuse them.  There hasn't been enough research since triple negative was identified to say that whether either was needed or not.  I think the docs just wanted to "Throw the Kitchen Sink" at it because they didn't know exactly what to do.  

The reason why I say overt effects is this:  One of my doctors told me after I had had a scan that one of my kidneys was not working, and that I had some liver damage.  Now, I wonder what caused that?

Do any of you have any auto immune issues?  I have had several things pop up lately.  Did I always have a suppressed immune system or is that the effects of my treatments?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nrice1 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 28 2017 at 12:33pm
I hope you are doing well as this post is older. Could you please share with me who to contact or wh what to look up? Iam opting out of chemo and rads. 1mm tumor 0/4 nodes clear. Obviosly tnbc idc grade 3.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Jul 28 2017 at 12:46pm
Hi nrice1 -

I can totally understand opting out of chemo - I would too in your situation, but radiation does ensure that all cancer cells at the tumor site are killed, which is why radiation is used. What did the doctors say? You were VERY fortunate to catch this at such an early stage! 
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Linda2907 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2018 at 7:55pm
Hi - It's been 5½ years since my last post. I'm still alive even though I refused chemo, and was pressured by the powers that be at the cancer centre to just do it as it was 'standard of care'.

Thing that bugged me was a news report I heard last spring that revealed a study strongly suggesting that chemo is unnecessary for earlier, smaller TN cancers. I KNEW IT!

I knew it in my heart in 2013. I'm so glad I listened to myself. I would not have done well with chemo; in fact, I refused the chemo because I truly believed 1) it was unnecessary for my specific cancer and surrounding details and 2) it would kill me. I was so tired and run down.

I don't know if radiation was a contributing reason why I haven't had a relapse, but I still have side effects from it. My left breast is still very tender to touch. The incision site in my breast is also tender if pressed upon.

Once again, I just want to say that people should do whatever they want - it's their life and their body and I don't judge. I'm just glad that I did what I knew was best for me.

Linda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Monica5124 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 08 2018 at 9:41am
I am a 77 year old women recently dx with TNBC. I had a lumpectomy and have been going to medical oncologist for second opinions.  I am (according to my medically oriented family) a difficult pt.  I had my original evaluation for chemo by a doctor who did not instill confidence in me.  I then decided to go for a second opinion at a University hospital.  I left there saying YES, chemo does not sound that bad. Being 77 they would not use the full army of drugs.  Having friends who are in the research field, they insisted that I go to MD Anderson for a yet another 2nd opinion.  Treatment plan was the same but she encouraged me to make up my own mind.  I researched the issue to the ninth degree.  I worried about the fact that if it came back I would be upset that I had not taken the chemo.  We live in Florida and havingbeen staying with my son during this whole ordeal.  My husband is anxious to go back to Florida.  After all of this I made up my mind on a dime and decided to fore go chemo and do just radiation.  Your post has made me feel better about this decision and I thank you for posting it.  I am off now for my first appointment with the radiologist.  Being 77 I am blessed that all of my children are raised.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Linda2907 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 08 2018 at 12:14pm
I wish you all the best in your recovery.
FYI: after the partial mastectomy my margins were clear and my nodes were clear. I found the lump 6 years ago. I am now 61.
 
I would readily take chemo for certain types of cancers such as leukemia or lymphoma, or other systemic cancers; but, for a single lump that was successfully removed, I had serious misgivings. I do not regret my decision, and would not even if I had a recurrence.
 
I am also a difficult patient, but a studious one who did a lot of research before making my decision about my body.
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2018 at 2:35pm
Dear Monica 5124 and Linda2907,
What was the stage of your breast cancer.  I assume it was maybe stage 1?  I also assume it was TNBC?  I am a 12 year survivor of TNBC.  I had a mastectomy and 8 chemo treatments.  I was in a clinical trial which added one drug to the three which were considered the standard of care in 2006.  Mine was stage IIb with involvement in one lymph node.  I was not a difficult patient.  I wanted to have some assurance that I was going to live more than 3,4,5 years after treatment. 
The thing about TNBC is that the cancer cells travel through the vascular system.  If only 1 cell escapes and hides in the body, it can cause a recurrence later in life.  That is why  I wanted chemo in hopes that if 1 cell did escape, it would be wiped out by the chemo. 
I wish the best for all of you ladies with the decisions you are making.  I have studied also, and know that TNBC cannot be included in the same category of other breast cancers.  ER, PR, and HER2 are breast cancers that have target drugs to ward off recurrence for years.  TNBC has no target drug YET. 
Love,
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 - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Meadow Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2018 at 12:48am
Lillie said just about everything I wanted to say. But I want to add that my cousin had Stage I TNBC with a 1 cm tumor, nothing in lymph nodes, clean pathology report. And sadly, there was metastasis three years later and she passed away soon after. Likely it spread through her vascular system, as Lillie discussed. I hope people don't hate me for posting this. I agree everyone controls their body and needs to make the decision that feels right to them. But I think it's important to understand how aggressive TNBC can be. As Lillie says, it is different from other types of breast cancer, a totally different disease.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Linda2907 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2018 at 6:06pm
No one will hate you here. Your choices are yours and all choices are legitimate.

I'm truly glad it worked out for you. I don't remember whether I was ever told what stage I was at. I don't remember asking, either. I really don't care at this point, and I don't remember caring much about scores then.

I do remember being told that TNBC was always very invasive and aggressive. I remember asking whether the cancer centre would test to determine which of the usual chemo treatments would be best against my tumour for efficacy, as was the usual practice in many European countries. I was told that "no, we don't do that here". I asked if there were any harmonized treatments like nutrition or immunotherapy. Nope.

I did ask to have a full mastectomy on the infected breast, but once again I was told 'they don't do that'. They only do partial with chemo & rads, which he assured me was just as good. I had no choice regarding which surgery or which surgeon. I told the surgeon that I would not be having chemo and he just smirked at me. He did do a good job at removing all the tumour, though.

For the record, being difficult just meant that I asked a lot of questions and did not follow, to the letter, the only treatment(s) they did offer. I was never rude, impolite, or raised my voice at any time. I always behaved well and was treated in the same way by everyone I met in every clinical setting.

My first time at the cancer centre I was given a questionnaire of about 20 pages. Why? I had already filled out a number of them. But this one didn't just include medical history - it was kind of out there. A lot of questions about feelings and stress levels, exercise, work and sleep habits. How did I feel about the cancer? Well, on the whole, I guess was against the idea. It wasn't the usual medical questionnaire, it was a survey.

In that survey they mentioned that the treatments could possibly be part of a clinical trial. The survey subtly asked for a signature of approval. I did tell the intake resident that I would absolutely refuse to join any clinical trials. They didn't like that one bit. Too bad, so sad.

Those of you in the States who want 'free' gov't-pay health care - be careful what you wish for.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Linda2907 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2018 at 6:37pm
It's coming back to me. That survey also asked about my relationships with friends, family, significant other. Was I married? Happily? Did I have children and satisfactory, supportive relationships them and with friends. They even asked if I was satisfied with my sex life. Jeez! I wonder what help, if any, would have been offered if I had said no? Most questions had a sliding scale from 1-5 or 1-6.

I'm guessing I would have had to fill in that same survey at various points along my treatments and for, possibly, 5 years after. I suppose a medical school - or some group - was conducting a longitudinal study on the effects and emotional impacts of cancer treatments and, perhaps, of having cancer itself. There was never any disclosure that I was being asked to participate in a study group.
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