No Radiation...

russem

Hi Girls,

Just wondering if anyone has been through TNBC and not have any radiation? I'm coming up to the end of my treatment and my onc tells me that radiation is not needed. I've just completed 6 cycles of TAC chemo after bilateral mastectomy. No lymph node involvement, cancer in left breast only but was relatively large. I'm so keen to do all I can to beat this, I'm only 32 have a beautiful 1 year old and I want to live to see him grow! I'm due for my surgery to swap tissue expanders for my permanent implants at the end of October so I don't want to miss my chance to do radiation. Just wondering if others out there were also told that radiation wasn't needed and if there are any long term survivors that didn't do radiation... Just fretting is all!



Thanks

momof3boys

Hi- I'm not triple negative, but for some reason feel compelled to respond to you. Is your MO telling you that you don't need radiation? Or is it your RO?

I had BMX with no nodal involvement...BS said when I asked him about radiation "no! I got great margins and there's no nodal involvement" When I asked my MO, she said "I don't think so, but, you're entitled to the opinion of an RO". Well, I got the opinions of 3 RO's. All agreed that I should do radiation (they didn't all agree on the extent of radiation).

Basically, because my BC was just over 4cm, they saw a benefit in radiating my incisional scar, where a local recurrance is more likely to take place. So, I did go ahead and do that. It was fine, no issues or problems. I can give you further info on that if you need it....

It was a hard decision to make. I was told by the 3 RO's that it would reduce my local recurrence percentage rate from 15% to about 5%....

A couple of months after completing radiation, I ran into my BS at my kids school. He gets copied on everything and knew I went ahead with the radiation. He told me he was glad I did it, that recent studies are showing a benefit even with BMX where you have a tumor on the large side, even with clean margins. So, I hope you get opinions from two radiological oncologists.

Joyce

momof3boys

I think they also consider your age....I was 43, considered young, and had done everything else aggressively.

lago

I also am not triple negative but thought you'd be interested in my story as well. My tumor was triple positive grade 3 and very fast growing (because of the HER2+ factor). The tumor was about 6-6.5cm including the DCIS, still 5.5cm IDC only. My BS said I would most likely have radiation since that is pretty standard for tumors over 5cm even if you have a BMX. Also my tumor was in the posterior region. My former breasts were small (34B and not very full Bs). My margin was only .75mm from posterior margin.

My RO gave me a pass. She said that I was getting aggressive treatment and I was in a gray area. I think one of the considerations with me was location. Being so close to my heart, lung and ribs the risk wasn't worth it. I have a feeling if my tumor was on the right side she might have recommended it.

So if you didn't see a RO then I would get an opinion from one of them. My PS said there are so many things to consider with radiation now he doesn't even keep up anymore. 

BTW I was 49 when diagnosed. Not as young as you but still young (premenopausal till chemo) for breast cancer.

russem

Thanks for the replies. It's nice to be able to share what's going on with people who get it! Before surgery my surgeon said she was 90% sure they'd want to do radiation so she strongly suggested getting tissue expanders rather than going right for the implants (I had skin and nipple sparing surgery). Apparently there is less chance of rejection due to rads with the expanders? Anyway, the cancer was located on the inner side of my left breast and they were pretty sure it'd involve the nodes in mammary chain due to the position. Everyone was surprised when the sentinel injection showed no drainage there at all. Even more surprising was the total negative nodal involvement. My doctors work as a team, I have met with the RO and he has said that I wouldn't need radiation, they told me this right after I found out about the nodes so my head was too busy celebrating to ask anything decent! Maybe I should make an appointment to ask why he feels it's ok not to do radiation. Luckily for me the head radiologist at my hospital is one of the best in the country (Australia) and I do feel I can trust him as he has helped me in many ways - including helping me find the right surgeon for me.



lago - my nearest margin was .6mm and they said this was a good clear margin... Like you maybe the location plays a part.



Joyce - reducing risk from 15% to 5% sounds brilliant! If I've learnt anything from breast cancer it is to ask questions and seek opinions. I guess I was hesitant on this question because part of me doesn't want them to say yes to radiation - I want this over with! I will however do EVERYTHING I can to beat this, even if it means more treatment than I thought.



Hopeful999 - thank you for letting me know. It's nice to hear that others have been told it's ok too. I hope that your Mum is going well



Thanks so much once again. You've encouraged me to make that appointment. I'll let you know how it goes (I know it can be helpful to others who search the boards in the future to see what the outcome was!)

lago

I forgot to mention I was in a grey area but again tumors over 5cm typically get rads regardless of bmx or no node status. They were pretty surprised I  had no nodes either. Sadly I had 10 removed on that side and minior LE. At that time taking level I nodes was standard. A year later it was no longer standard in cases like mine.

Alicethecat

Hi Russ

Like you, I was lucky enough to have no nodal involvement or spread to the blood. I also had a high risk type of breast cancer - HER2+ and grade 3.

I am starting rads on Wednesday and can't get there fast enough.

Have no regrets.

Best wishes

Alice 

InspiredbyDolce

I'm going through this decision making process now.  Discovered a narrow margin post-treatment, consulted with 2 tumor boards and it was determined no radiation. Significant details go into their recommendation.  A 2nd lab analyzed my slides, concluded the margin was wider and the hospital operating report noted a sliver of muscle was removed and they said that will add to the margin, in my particular case.

I'm Triple Negative, Stage 1, 0 Nodes with BMX and Reconstruction Surgery 5 days after diagnosis. Tumor 1.7 cm and 4 rounds of chemo.

This might help you with questions and information to ask your medical team.

Link to Download the: NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines)® Breast Cancer

http://infoonco.es/wp-content/uploads/2011/10/breast_cancer_2.2013.pdf 2013 edition - PDF 174 pages (posted edited to add more recent manual.  you can find these manuals online by running a search.  I recommend doing so as they are updated yearly).

What is the NCCN Guidelines Manual?

"The National Comprehensive Cancer Network® (NCCN®) is an alliance of 23 of the world's leading cancer centers, working together to develop treatment guidelines for most cancers, and dedicated to research that improves the quality, effectiveness, and efficiency of cancer care. NCCN offers a number of programs to give clinicians access to tools and knowledge that can help guide decision-making in the management of cancer."

fhny2012

Hi,

Just wanted to respond as the rads / no rads decision was a very difficult one for me, and I was grateful for other's advice and experience.

I am TN, had a 2.8cm, with a micromet in the sentinel node.  My team at Memorial Sloan-Kettering all told me that I was in a grey zone, and that I could either do rads or not, and that it was up to me.  When I pushed them to give an opinion (that's their job, right?  I'm not an oncologist!) they said "no" to rads because they felt that the risks to my reconstruction, range of motion, and the possibility of getting lymphedema from rads outweighed the benefit.  They said that it would reduce my risk of local reoccurence from 12% to 6%, and that if I did have a local reoccurence, I could just do rads then. 

I was really disappointed not to get a firmer, clearer opinion either way, so I went to Dana-Farber for an opinion.  I met with a RO, an oncologist, and my case was also put in front of the tumor board and the head of radiation.  They all said to get rads.  Their rationale was that it would reduce my local reoccurence risk from 15% to 5%, and that b/c I was TN, young (I'm 31), had multi-focal cancer (one main one with two teeny offshoot tumors), had lymphvascular invasion, and had the micromet in the sentinel node, I needed to be as aggressive as possible.  This reasoning (and how confident and adamant they all were) really resonated with me. 

Ultimately, I decided to do rads because if anything comes back in the future, I need to know that I did EVERYTHING I could have.  If I didn't do rads and had a reoccurence, I know I would blame myself (even though of course, cancer isn't anyone's "fault").  This was a real sleep-at-night decision for me.  I will trade having a potentially wonky-reconstruction (though maybe women are fine with rads and reconstruction!), increased lymphedema risk, and the pain/fear of rads so that I can sleep at night, confident that I used ever weapon available to beat TN. 

I still haven't started rads and am terrified, but I still feel that rads was the right decision for me.  I know that is not the case for everyone, and I respect everyone's personal choices for their treatment. 

Best wishes to all of you, and hoping that we all get through treatment and live long and happy lives!

russem

So, I spoke with my onc and he said that there was no need for radiation as 1) lump was less than 5cm, 2) I had a mastectomy not a lumpectomy, 3) I had clear nodes and good margins. Anyway, I've booked in for a second opinion from the top radiologist. I'll let you know what his thoughts are. Like everyone here I want to do everything I can, I want no regrets!

wildrumara

Radiation vs. no radiation...oh how I hate this topic.  I opted out of getting radiation.  I had one RO tell me yes he would radiate me and another (from my team) tell me no....risks outweighed the benefit.  I had many sleepless nights making this decision, spending hours on this site and reading article after article on the internet.    I had two positive nodes (barely) with good margins on my BMX, with no LVI, small tumors, and axillary lymph node dissection.. etc.... I decided to stick with my team recommendation not to do radiation.  I'm sorry, but I truly think some people are being overtreated........BUT, you have to make a decision that allows YOU to sleep well at night!!  Good luck.   My friend was triple negative with a larger tumor and she did not undergo radiation either (we have the same team)!   Different institutions recommend different treatments too.  Depends on what studies they base their recommendations on? 

russem

So I saw the radiologist and I got his opinion. He referred to a recent study which found that women who had the same cancer as me (size, triple neg, etc) who had radio and a lumpectomy had 8% recurrence within 15 yrs and those who didn't have radio but had a BMX and no chemo had 12% recurrene. He felt that the chemo would have done enough at this point as I'd have less than a 12% chance after chemo and he felt the side effects would outweigh the benefits. So I've had two doctors tell me no for radio so I'm going to run with that.

InspiredbyDolce

EXCELLENT ARTICLE RE: TNBC - LIFESTYLE PRINCIPLES FOR RISK REDUCTION

http://nosurrenderbreastcancerhelp.org/page93/page100/page100.html