Positive Nodes and Rads
Husband/ caregiver here...
A decision my wife has to make is whether or not to do rads.
She has 1 positive node out of 21 taken out.
She has expanders in and will be eventually doing an exchange to silicone implants (that's the plan).
From what I can see, the conventional wisdom had been 4 nodes and you do rads.... And 1-3 nodes, you didn't.
More recently, I've seen studies that say SOME people with 1-3 nodes COULD benefit from rads. As has all to often been the case-----vagueness rules the day with these breast cancer studies.
When a study says SOME people with 1-3 nodes COULD benefit from rads------isn't it incumbent upon the presenters of the study to then EXPAND and identify WHO EXACTLY would benefit?
I have to admit that I was always intrigued by the hard line drawn between 3 nodes and 4 nodes when some treatment protocols come out-----yet there's no problem lumping 1 node in with 3 in the same study.
And now they say some with 1-3 could benefit from rads like those with 4 nodes and up could. Could it be that someone finally realized that 3 nodes is closer to 4 than it is to 1 node? And that drawing a hard line between 3 and 4-----while lumping 3 with 1 & 2 in the same study....is ridiculous?
It seems LAZY to have a 1-3 node bucket. Why can't these analysts stratify the outcomes according to 1 node vs 2 nodes vs 3 and so on....
Such a big deal about reaching the magical 4 node level.... Yet ZERO delineation between 1 & 3.
I'm so disappointed in these studies...
Forgive me for the rant.
Anyway, I found a study that tried to stratify outcomes among 0, 1, 2 & 3 nodes.
This was for loco regional recurrence risk at 10 years for women who had a BMX without rads...
0 nodes carried a 2% risk
1 node carried a 3% risk (and a statistically insignificant difference from 0 nodes)
2 nodes carried a 7% risk
3 nodes---wasn't enough individuals in the sample to be valid
Of course this doesn't address distant recurrence risk.
Anyone have any information on loco regional recurrence risk or distant recurrence risk for 1 node without rads vs with rads?
Obviously we're concerned about rad side effects including lymphadema, cancers and lastly implant failure and wouldn't do rads if it wasn't a net gain.
So far the BS and 2 MOs from different facilities did not think rads would be needed/ beneficial, though a consult with an RO will be in our future.
Anybody have any helpful facts opinions or experiences?
Comments
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We had a BMX and are doing chemo.
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Colt - I believe the current thinking is that with 1 or more positive nodes there is a benefit to rads. Yes, unfortunately the 1-3 is broad range but if it made it to one node then the cancer has travelled and their are risks to that. ( Having no positive nodes does not mean the cancer hasnt travelled either because it can bypass the nodes and travel through the bloodstream) Other factors to consider is the grade/type of cancer -your wife is her2 neg and grade 1 (slowest growing) which works in her favor. Another factor some rad oncs consider is LVI - lympovascular invasion. I dont think a BS and MO should be advising on whether or not to do radiation - that is not their specialty. Get 2 or more opinions from rads oncs from different facilities to see what their recommedations are.
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I had a lumpectomy, which meant that radiation was a given. In addition, I had a Sentinal Node Biopsy (which was positive) and a removal of the Level I axillary nodes (all of which were negative). I opted for Regional Node Radiation (radiation to the shoulder and neck) in addition to whole breast radiation because the results of a definitive study in Canada showed that 2% of early-stage women who had regional node radiation in addition to whole breast radiation did not develop metastatic disease compared to other early-stage women who only had whole breast radiation. This was practise-changing in Canada - where only advanced-stage (more than 3 positive nodes) were given regional node radiation - and, since then, it is offered to all early-stage women, as well. Up until this study, it was believed that radiation would only provide a local benefit; meaning that it would only help prevent a local recurrence to the breast or the surrounding lymph nodes. This study proved that regional node radiation could, actually, help prevent metastatic recurrence.
Now, 2% doesn't seem like much, but it was huge for me. Despite the fact that as an "early stager" (Stage II, Grade 2, ER/PR+, HER2-) with only one positive node, I could have opted out; I didn't. I wanted the extra 2%. I would, also, like to point out that - a year later - I am not having any problems with lymphadema or any other side effects from the radiation. And, as I understand it, the risk of developing another cancer from radiation treatment is, actually, very low, but you'll need to discuss this with your wife's oncologist to get a clearer picture of the risks vs. benefits in her particular case.
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Colt,
I had 1 positive node (out of 18), a BMX, chemo and did radiation. I was told by my BS that I didn't need it but frankly I get the sense that is what they typically say (they believe they got it all with the surgery).
My sense is that mine was a borderline case. I had 3 RO opinions about radiation and really struggled with the decision. Two of the 3 fully admitted that I was a boderline case and said they would support me either way. One was very aggressive and said "you are 40 you need to do radiation".
They showed me a LOT of studies with the statistics on recurrance rates for people with and without radiation and the data is a bit all over the map. Honestly I can't remember them anymore but did post about it at the time I was going through the decision. But basically studies showed recurrance rates anywhere from 8-30% for 1 node positive, young women like me. Which is why it's a boderline case. If you believe 8% you probably wouldn't do radiation (and they wouldn't recommend it). If you believe 30% you would do it.
But there was enough evidence that my age, 1 positive node and very small amount of LVI all pointed to it making sense. And one doctor hit the nail on the head when she told me that at the end of the day I just have to decide whether I am the type who can make a decision and move forward or if I will always be looking over my shoulder wondering if I did enough. I knew I was the latter and decided to do it.
A couple of things - 1) all of the ROs agreed that I should NOT have my axilla radiated because of the number of lymph nodes I had removed. So we radiated the breast area and the superclavical. Not the level 1 or 11 lymph nodes. According to the docs that also helped keep the risk of lymphedema lower. They said that if I had radiated the axilla my risk of lymphedema would be as high as 50%. And claimed that my risk having done it the way I did went up by 2% over what it is already.
2) my plastic surgeon did the exchange to permanent implants prior to beginning radiation. That's apparently always how he does it (assuming you healed from the original surgery well). My sense is that he really doesn't like to mess around with radiated skin and my RO tells me that it seems to be a personal preference from doctor to doctor. She sees most Sloan Kettering docs doing it that way and most NJ docs doing the exchange post radiation. She hasn't seen a noticable difference in the cosmetic outcome between the 2 approaches.
3) my nipple reconstruction options are now limited because I did radiation. My PS will not do nipple implants on radiated skin. So my only option is to do a tattoo. I frankly don't care all that much but didn't realize that was part of the decision at the time. I am doing the tattoo in April.
I finished radiation 4 months ago and other than some tanner skin under my arm have no noticeable side effects. I did burn fairly well at the time (worst was the 2 weeks post radiation) but am no worse for the wear. And it really is nothing compared to chemo.
Best of luck with your decision.
Rose
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BTW, I forgot to mention that I was really upset when I found out I was being advised to do radiation. With my bs and first MO saying I wasn't going to need it, I had my eye on the end of chemo as the date to get to. So to then find out I had almost 6 more weeks of treatment was just really hard to hear. I struggled all the way through the first week or so of radiation. Then I finally was able to just get over it and move on. Started concentrating instead on my very slowly growing hair
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1 of 15 positive nodes. Two consults with rad oncs - one strongly recommended but gave no statistical info and cited no studies. The other agreed I was borderline, and said in my case the studies showed there was no survival benefit, just a reduction in recurrence risk. With survival off the table, it became a QOL issue with me. Did a lot of research, ended up declining rads. Everyone's tolerance for risk is difference. The one rad onc who agreed I was borderline said 90% of women with my dx are radiated for no reason - 85% will not recur, rads or no rads. 5% will recur, rads or no rads. That leaves 10% of women who will recur if they don't have rads, but won't recur if they do have rads. I was comfortable with that 10%, especially since there was no survival benefits. Of course these stats were from 5 years ago - I'm sure they're more refined now.
And I have arm and truncal LE anyway, even without rads. But it's minor early stage LE - I suspect it might have been worse had I done rads, but there's no way to know that.
You may want to ask the rad oncs about "recurrence" v. "survival". The risks are different and that might help the decision.
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You ladies are like super heroes. Someone needs help, the Bat Light gets switched on... And y'all show up.
Thank you so much. There are no words to tell you how much your help means.
I welcome more opinions, stories and experiences. -
Thank you! (untying my cape and putting it away until the next Bat Light)
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I had two positive nodes, grade 3 IDC and HER2 positive. I had two RO consults, the first minimalized my BC and made me feel like I was wasting her time. The second gave me studies to review - the MA-20 study and the British Columbia study that was referred to already on this thread. Even though overall survival did not change with radiation (my understanding is that includes death from any cause) the rate of recurrence was decreased. I would prefer not to have to go through treatment again in the case of recurrence and my understanding is that if there was a recurrence there was a greater possibility that there could be metastases with that recurrence. I decided to do all I could with initial treatment to prevent recurrence after reviewing the studies and I am currently going through radiation treatment, so far so good.
The second RO also told me that it is now considered standard treatment for mastectomy with one to three positive nodes at our cancer facility.
I will try to post the links to the studies here without losing this post -
http://www.oncolink.org/conferences/article1.cfm?id=2148
http://jnci.oxfordjournals.org/content/97/2/116.long
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