Struggling with rads decision (2 positive nodes)... Any advice?

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mellee
mellee Member Posts: 434
edited January 2017 in IDC (Invasive Ductal Carcinoma)

I had BMX in November. Sentinel node biopsy came back 2/5: 1 node with macromets (3mm) and 1 node with micromets (less than 2mm). My surgeon did Level I and II ALND, removing an additional 27 nodes. They were all clear.

Because my Mammaprint came back low risk, I won't be doing chemo. I will be taking tamoxifen (I'm 100% ER positive). But I don't know what to do about radiation.

I've had 2 very good RO consults (experts at a major cancer center). My case was also presented to a tumor board. And I've done a lot of research and discussed that research with the ROs I talked to, including:

1) The new 2016 postmastectomy guidelines from the American Society of Clinical Oncology: http://ascopubs.org/doi/full/10.1200/JCO.2016.69.1...

2) the 2014 Lancet report on the EBCTCG trial that found that rads after mastectomy and axillary dissection reduces the risk of local recurrence and overall mortality: http://www.thelancet.com/journals/lancet/article/P...

Current recommendations are that women with 1-3 positive nodes "strongly consider" rads. But they also note that some subsets of these women are at such a low risk of local reoccurrence that the benefits don't outweigh the risks. The trick is figuring out if you're in that low-risk group.

The first RO said that I am probably on the lower end of the spectrum of risk, so it's a really tough call. Doing it would be more like insurance. The 2nd RO was more pro-radiation, but again as insurance. She said out of 100 women with 1-3 nodes, approximately 85% will not benefit from rads, 5% will get a recurrence despite rads, and 10% will benefit from the rads.

The big question is: am I in the 10% that will benefit?

I have many things going for me: tumor was Grade 1, no lymphovascular invasion, strong hormonal sensitivity, small nodal metastases, and my nodal ratio (2/32). I'm also a Luminal A type, which tends to have a lower risk of local recurrence. But I'm only 40, which is on the borderline for age. My tumor was 2.3 cm, so not small, but not huge either. Again, borderline.

Part of me wants to throw everything at it, but I already have lymphedema from the ALND and am really worried about that getting worse. Plus, there are serious long-term risks to heart, lungs, secondary cancers, etc. Also, it could cause problems with my reconstruction and implant.

So now I'm agonizing over the decision! Just wondering if anyone is in similar circumstances and how you made your decision?

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  • Molly50
    Molly50 Member Posts: 3,773
    edited January 2017

    I think if your RO's are not pushing for rads and your gut is telling you no, then probably skip it. I would ask myself how I would feel about skipping rads if I ended up with a recurrence. In my case, I had a large macromet for one node and micro in the second plus lympvascular invasion. Rads were a no brainer.

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  • mellee
    mellee Member Posts: 434
    edited January 2017

    Thanks for the input, Molly. I think you're right about the recurrence/no rads question. If you don't mind my asking, how large was the macromet in the one node?

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  • Molly50
    Molly50 Member Posts: 3,773
    edited January 2017

    mellee, sorry I lost track of this thread! It was 1.7 cm.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2017

    Mellee -looks like you have several threads discussing this same question. I answered on one of the other ones.

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  • mellee
    mellee Member Posts: 434
    edited January 2017

    Thanks, MinusTwo.

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  • SusanaQ
    SusanaQ Member Posts: 23
    edited January 2017

    I am very impressed by your due diligence. I've been in a fog since surgery and I pretty much had to "turn it over" early on to my doctors and to my faith. I just reached a point where I was not retaining any of the conversations. I now think my brain was swollen and stressed.

    Melee,

    I was diagnosed in 2002 (age 38) with DCIS and had left mastectomy with no further treatment. I was again diagnosed in June 2016 with IDC in right (new primary, not a metastasis) and had right mastectomy with 1/3 positive nodes. I decided to not go back in for the ALND and chose to have the radiation based on a recent study. The tumor board agreed with with this decision. I finished chemo on 12/2/16 and am now undergoing radiation to axila, clavicular and chest wall, 9 days done, 21 more to go.

    I decided at the start of treatment that I don't want this ducker coming back, so I must cope with the side effects of treatment to improve my chances. My emotions are my biggest challenge, especially if I think about long term side effect of treatments (seoncdary cancers, lung scarring, chemo brain). My best tool for coping has been staying active even when I just want to stay in bed.

    Sending you support as you navigate your options. xo Susan

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  • mellee
    mellee Member Posts: 434
    edited January 2017

    Thanks for the support, Susan! Sending it your way as you go through rads!

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