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Post-mastectomy radiation after pathologic complete response ?

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sarahnh
sarahnh Member Posts: 105

Hi everyone - I'm trying to choose whether to have PMRT. I am in a grey area. I was node positive (probably 2 nodes), but had complete pathological response to chemo. Surgery found no cancer in breast or nodes. No one knows whether PMRT helps or harms patients like me.

The guidelines go back and forth, but PMRT is the default for now. There is a big randomized study which hasn't reported yet. I've seen two radiation oncologists who gave a "weak" recommendation for PMRT, and say it wouldn't be crazy to omit it.

Has anyone here found themself in a similar dilemma? If so, what was your thought process and choice?

Please give me your thoughts, anyone who can! Any dialog will help. I am really at a standstill in this decision!

Sarah



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  • ratherbesailing
    ratherbesailing Member Posts: 118
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    So sorry you're going through this and, yes, I was also in a "grey" area.

    It is a really tough decision, and the lack of solid studies makes it even more so. I don't know if your RO's can give you any estimates of recurrence with/without radiation?

    Radiation can have long lasting side effects. Since your cancer is on the right side, your heart shouldn't be an issue, but ensuing fibrosis can cause tightness in chest muscles and other issues. And a lot depends on your tolerance for risk. If both RO's gave you "weak" recommendations it sounds like you have good reason to skip it. On the other hand, of course, you may want to feel you have done everything you can to prevent recurrence.


    Of course, radiation is for prevention of local and regional recurrence, and doesn't help if the cancer has already escaped elsewhere. But my RO told me that for every four local-regional recurrences that are prevented by radiation, one distant recurrence is also avoided.

    If you are leaning toward going ahead with it, one thing you might consider is asking the ROs how much they can keep the radiation treatment area to a minimum. Aside from the chest wall, radiation can involve three different nodal groups: the axilla (under the arm), the supraclavicular (above the collarbone) and the internal mammary nodes (IMNs, near your sternum.) I'm going to guess that at least some ROs would recommend treating the axillary nodes if you likely had two positive before chemo. But the more nodal areas they cover the more likelihood of collateral damage to healthy tissue. So I would ask if they can skip some of the nodal areas - for instance, if your tumor was toward the middle of your chest, you likely don't need IMN radiation.

    I'm not certain this helps. Hang in there.

  • sarahnh
    sarahnh Member Posts: 105
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    Thank you ratherbesailing! That helps a lot. The ROs would include chest wall, axilla, and supraclavicular, but would omit the IMN.

    For benefits, PMRT seems to reduce LRR by about 5 percent, and DR by about 3 percent. For survival, one RO said the benefit is probably in the "low single digits". For risks, PMRT seems to raise the risk of heart mortality or second cancers by less than a percent, lymphedema maybe 5%, and pulmonary fibrosis maybe 1-3%. Though nobody knows for sure! My big fear is pulmonary fibrosis because it runs in my family, so I may have a 50% chance of inheriting it, and there is some evidence that lung damage (radiation, smoking, etc) might precipitate the disease early. Ugh.

    Can I ask what your grey area was for PMRT? It looks like you chose to do it -- any regrets?

    Thanks for any and all thoughts! This is such a tough decision. I wish I knew how to find more people who have been in this situation...






  • ratherbesailing
    ratherbesailing Member Posts: 118
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    My RO told me radiation would decrease my chance of local-regional recurrence from 14% to 7%. It seemed worth it. But they radiated my IMNs against my wishes and all common sense (opinion of another RO - I had a lateral tumor far away from the IMNs.) Covering the IMNs increased the lung dose and, yes, I did end up with lung fibrosis. The situation was not helped by the fact that they blew me off when I reported shortness of breath after - steroids undoubtedly would have helped, but I now have permanent lung damage. So, in answer to your question, after reading all the research I think, for me, the decision to choose radiation was a sound one - and would have been fine had it been handled properly. But I didn't have a family history of fibrosis complicating matters. BTW, I'm not certain the impact of radiation - especially on the right side - is so much on the heart itself, but the blood vessels in the chest. As for lymphedema, I do have a mild case in my trunk that developed before radiation. I sometimes wear a sleeve, but it hasn't been a huge issue for me.

    Your doctors sound reasonable, which is a huge help. It sounds as though they will be supportive whatever decision you make. I think others here have experienced having to make the decision with a family history of lung fibrosis. Hope they chime in!

  • sarahnh
    sarahnh Member Posts: 105
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    I'm sorry that you ended up with lung fibrosis, especially since they should have caught it faster. If I knew PMRT would reduce my absolute risk by 7%, I'd probably make the same choice you did! Guidelines seem to go back-and-forth on IMN coverage every decade.

    I talked with three breast ROs and their policies for IMN varied wildly. It seems like the further east you go, the more hardcore the ROs get! This is my understanding:

    RO at MGH does the absolute maximum in the guidelines (axilla/SC/IMN).

    RO at Dana Farber prefers the maximal guidelines, but was willing to omit IMN in my case.

    RO at DHMC (a local NCI cancer center) prefers NOT to do IMN (and is willing to omit SC for some patients too).


    I hope it's ok to ask -- Why did your RO want you to have PMRT? Did you have positive nodes?







  • serendipity09
    serendipity09 Member Posts: 769
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    Hi Sarah! I had a somewhat similar experience! During my BMX (Sept 2020) it was discovered that the bc had spread to my lymph nodes. Because of that, the MO and BS felt another consult with the RO was warranted. RO presented my situation to his peers and they all agreed that radiation was not necessary, but it would be an added precautionary measure ("weak recommendation"), if I wanted to do it. RO and second opinion were all very supportive of my decision not to do it.

    Less than a year later (July 2021), during my exchange to implants, a blemish was biopsied and came back positive. In Sept 2021 I had to do 5 weeks of radiation to my chest wall and axilla , which caused problems with my implant. I just had them removed 3 months ago (DIEP)

    Because it was my right side there was no risk to the heart and my lung seems to be fine. My skin, however continues to be be an issue, but nothing severe.

    I hope everything goes well for you!

  • ratherbesailing
    ratherbesailing Member Posts: 118
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    Serendipity, sorry you’re going through that!

    Sarah, isn’t it amazing how different doctors can interpret research so differently?

    Here’s what I’ll say about the IMNs. If breast cancer tumors are in the lateral side (outer side) of the breast and not too deep and close to the chest wall, chances are slim they will drain to the IMNs. It’s just the way the lymphatic system is laid out in most people. I believe the chance is about 9%, and my RO said that was about right. Many of the studies on PMRT and IMNs (and I’m not really talking about studies post-NAC) do show a slight advantage to covering the IMNs. But none of them applied to node-negative lateral tumors, which mine was.

    I was furious when my RO afterwards said “Well, that’s what we always do.” No deeper thinking and consideration of individual patient profiles. And, personally, I would run from any hospital or physician that says that.

    I don’t know your full situation, but hope the IMN information gives you a little more perspective. And if it makes you feel better, my lung dose was really high - it never should have happened. So there’s a reason I got fibrosis.

    The only other thing I would mention is that you could ask about IMRT, which is more targeted and can usually attain a lower dose to organs at risk, such as the lung. But the downside of IMRT is that it gives a larger “wash” of low dose radiation, so that might not be any better in protecting your lung.

    Again, hope this helps. And so happy you are doing some deep diving on this.

  • sarahnh
    sarahnh Member Posts: 105
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    Thanks serendipity09 -- I'm sorry about the recurrence. Your story is definitely a reality check! Though, from what I've read, nobody really knows whether PMRT has much benefit for limited nodal involvement. Did you have chemo before surgery?

    ratherbesailing -- Thanks for the IMN info. It agrees with what I've read, that there is a small benefit, but the question is whether the benefit outweighs the risks. There was a time (decades ago) when some types of breast radiation were discovered to cause higher mortality rates, and were stopped, until techniques and patient selection improved. IIRC that happened with IMN as well -- it was abandoned, and then brought back in 2015 or so. And doctors still don't agree on it! I think it's brave that you confronted your RO about it.

    Incidentally, did they tell you your actual lung dose? Or did you have to estimate it somehow? One RO told me that the IMN only adds a little onto the lung dose for PMRT (maybe because the supra-clavicular nodes already give so much lung dose?), but I've seen disagreement about that in papers...



  • serendipity09
    serendipity09 Member Posts: 769
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    Sarah - I did have chemo first; AC & T with Carbo every 3 weeks

  • sarahnh
    sarahnh Member Posts: 105
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    serendipity09 - Thanks, that is interesting! I also had chemo before surgery. The ROs I met with all said that any residual "macro" cancer in the nodes would mean I need PMRT for sure. But I think the jury is still out for people who have only have microscopic residual nodes.

    But then again, radiation is no guarantee. I just learned that a relative had a lumpectomy for a tiny tumor (long ago), didn't want radiation but got it anyway, and still ended up with multiple recurrences, first in the breast and now in the chest wall. So now, with hindsight, she regrets radiation.

    Incidentally, for PMRT, best I can tell, all or most of the "Level 1" evidence for benefit includes IMN radiation...

    These are hard choices with so little data. It definitely helps me to hear about other people's experiences!


  • serendipity09
    serendipity09 Member Posts: 769
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    Sarah - these are very hard choices and I'm sorry you are having to make this decision! Honestly, I wish I would've done rads initially, but like you said, there were no guarantees of not having a recurrence.

    Feel free to ask any questions!


  • ratherbesailing
    ratherbesailing Member Posts: 118
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    Sarah -

    Ahead of time, they didn't really discuss lung dose, only expected cardiac dose. I happened to talk to the resident ahead of time and found the cardiac dose had gone up from the 2.5 Gys the RO told me he could limit it to, and it was now 6.5 Gys. The resident I spoke with thought that was fine. I didn't and emailed the RO, and the RO brought it back down.

    The fact of the matter is there are guidelines, and they will follow them. But they can't really tell what the dose is until after they've done the planning. And they adjust the plan as needed.

    The only way to know the actual dose given is a planning document called the dose volume histogram. But no patient should have to get into all the dosage issues - it's very complicated and not what we do. I think the best bet is to find a RO you trust, and who you feel is taking your concerns into account. I think (and dearly hope) my experience was out of the norm. If you find someone you're comfortable with you should be fine!

  • ratherbesailing
    ratherbesailing Member Posts: 118
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    Sarah -

    Ahead of time, they didn't really discuss lung dose, only expected cardiac dose. I happened to talk to the resident ahead of time and found the cardiac dose had gone up from the 2.5 Gys the RO told me he could limit it to, and it was now 6.5 Gys. The resident I spoke with thought that was fine. I didn't and emailed the RO, and the RO brought it back down.

    The fact of the matter is there are guidelines, and they will follow them. But because everyone's anatomy is different, they can't really tell what the dose is until after they've done the planning. And then they can adjust the plan as needed.

    The only way to know the actual dose given is a planning document called the dose volume histogram. But no patient should have to get into all the dosage issues - it's very complicated and not what we do. I think the best bet is to find a RO you trust, and who you feel is taking your concerns into account. I think (and dearly hope) my experience was out of the norm. If you find someone you're comfortable with you should be fine!

  • sarahnh
    sarahnh Member Posts: 105
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    Oof, 6.5 Gy does seem too high for heart! From what I've read, even IMN should keep heart dose down near 2 Gy. But lung dosage is unavoidably high (I'm reading 16 Gy on average). Radiation dosages seem like such a crapshoot. I totally agree that patients shouldn't have to get involved with the technical details, but suspect most hospitals are too busy to do a thorough job of optimizing plans for everyone.

    I've checked the "official guidelines" (NCI, NCCN, ASCO) and they all require PMRT to include IMN...but that's a new thing and I wouldn't be surprised if it gets reversed. It sounds like many RO's omit IMN unless there is a good reason. Then again, some RO's feel most of the benefit of PMRT comes from doing the IMN! Who knows for sure!

    It's a tough choice -- I've found a few older threads with the same debate. I hate having to be my own expert on this. Chemo choices were so much easier...

  • lw422
    lw422 Member Posts: 1,403
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    All of the "being our own advocate" can be exhausting. I have IBC and even though I had a pCR with chemo, a total ALND with NO involved nodes of 32 removed, I still had to have a full course of 33 rads including 5 boosts as part of the Standard of Care. I am a patient at MD Anderson and felt confident that my team knows best... most of the time. I conferred with the RO before rads and saw the computer-generated pictures of my chest and axilla where the different levels of radiation would be applied.

    That was all well and good, but when it came to the actual treatments, with the Sharpie colored markers all over my chest and armpit, I never felt that the beam was very precise. I mentioned this to my RO and was poo-poohed but it was concerning to me. I wanted that PRECISION that was shown in the computer mapping image, not that willy-nilly drawing on my skin. When it's you laying on that cold table in the "mold" they make for your body, "take a breath and hold" makes you wonder every time whether that breath was deeper than the other 30 times and exactly what is that beam hitting.

    Sorry I have added nothing of value here, but it is a concern that all of us face. Is the treatment going to cause more problems? I know for a fact that I had no lymphedema until after radiation. How can we know what's best for ourselves.

  • sarahnh
    sarahnh Member Posts: 105
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    Thanks lw422 -- You have definitely added something of value!

    Sure we have doctors, and I even have access to medical journals...but what I am missing is other people who have been in similar situations! That is what this forum helps me with. I appreciate your post and thoughts so much. You put into words my very concerns about the precision of radiation (I also use the term "willy-nilly"!). And the burden of having to "be our own advocate"...

    So here's a totally hypothetical question for you, and for anyone else too! What if your doctors had told you, well, radiation is the standard of care so we recommend it. But we don't really know whether it's warranted in patients like you, and there is actually a big study going on right now, which randomizes patients like you to either radiation, or no radiation. Would you do the study?


  • sarahnh
    sarahnh Member Posts: 105
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    Thanks lw422 -- You have definitely added something of value!

    Sure we have doctors, and I even have access to medical journals...but what I am missing is other people who have been in similar situations! That is what this forum helps me with. I appreciate your post and thoughts so much. You put into words my very concerns about the precision of radiation (I also use the term "willy-nilly"!). And the burden of having to "be our own advocate"...

    So here's a totally hypothetical question for you, and for anyone else too! What if your doctors had told you, well, radiation is the standard of care so we recommend it. But we don't really know whether it's warranted in patients like you, and there is actually a big study going on right now, which randomizes patients like you to either radiation, or no radiation. Would you do the study?


  • lw422
    lw422 Member Posts: 1,403
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    Sarah--like most newly-diagnosed cancer patients and those in the midst of treatment, I was terrified of dying, filled with dread over the treatments, and desperate for some reassurance. I basically put myself in my doctor's care and showed up for whatever treatment my team prescribed. At that time I didn't know what I didn't know... I just wanted the absolute best and most effective treatment. I trust my MO explicitly so I'd probably still just ask him what he recommends and go with it.

    I'm still here two years after my Dx with IBC, and so far, so good. Not sure that I'd change a thing, though I've been mad about the removal of two levels of lymph nodes and developing lymphedema. (Cancer treatment's "parting gift.") As I often say, though... "at least I'm here to bitch about it."

    I wish you the very best in this difficult decision and your continued good health.

  • lw422
    lw422 Member Posts: 1,403
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    Sarah--like most newly-diagnosed cancer patients and those in the midst of treatment, I was terrified of dying, filled with dread over the treatments, and desperate for some reassurance. I basically put myself in my doctor's care and showed up for whatever treatment my team prescribed. At that time I didn't know what I didn't know... I just wanted the absolute best and most effective treatment. I trust my MO explicitly so I'd probably still just ask him what he recommends and go with it.

    I'm still here two years after my Dx with IBC, and so far, so good. Not sure that I'd change a thing, though I've been mad about the removal of two levels of lymph nodes and developing lymphedema. (Cancer treatment's "parting gift.") As I often say, though... "at least I'm here to bitch about it."

    I wish you the very best in this difficult decision and your continued good health.

  • maggie15
    maggie15 Member Posts: 948
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    Hi Sarah,

    I think whether you would be happy leaving the decision to the randomization of a clinical trial depends on your personality. It might help someone who would be satisfied blaming the trial if things did not work out well. I, however, would blame myself for not making my own decision. You have done all the possible research by reading studies, questioning doctors, and getting the opinions of other people who have been in a similar situation. In cases like this with limited data you just have to make an imperfect decision knowing that you would like to have information that does not exist.

    You know about my outcome of RIPF but I still think I made the best decision at the time with what I knew then. When I told my RO I wished I had opted for a UMX rather than a lumpectomy he told me he still would have recommended axillary radiation because of micromets and LVI leaving me in the same situation. My pulmonologist was not surprised given my medical history but his opinion is based on correlation and personal observation. Nobody has managed to prove a cause/effect relationship so subclinical ILD caused by microaspiration of gastric acid has not been added to the list of radiation contraindications.

    Ratherbesailing is rightly upset that her RO ignored her complaint of cough until damage had been done. My RO apologized for nor looking at the CT scan ordered by my PCP for a week; he was away and wanted to view it with a radiologist but in retrospect admitted things were so bad he could have made the diagnosis alone. He did get me in with the pulmonologist immediately and I don't think another week made a huge difference.

    Hindsight is 20/20. I now know I respond badly to radiation given the PF, LE, and the nerve pain I have everywhere in the radiated area. I also know I am a good responder to corticosteroids. I would advise making a decision that you won't blame yourself for later on no matter what happens. All the best!


  • maggie15
    maggie15 Member Posts: 948
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    Hi Sarah,

    I think whether you would be happy leaving the decision to the randomization of a clinical trial depends on your personality. It might help someone who would be satisfied blaming the trial if things did not work out well. I, however, would blame myself for not making my own decision. You have done all the possible research by reading studies, questioning doctors, and getting the opinions of other people who have been in a similar situation. In cases like this with limited data you just have to make an imperfect decision knowing that you would like to have information that does not exist.

    You know about my outcome of RIPF but I still think I made the best decision at the time with what I knew then. When I told my RO I wished I had opted for a UMX rather than a lumpectomy he told me he still would have recommended axillary radiation because of micromets and LVI leaving me in the same situation. My pulmonologist was not surprised given my medical history but his opinion is based on correlation and personal observation. Nobody has managed to prove a cause/effect relationship so subclinical ILD caused by microaspiration of gastric acid has not been added to the list of radiation contraindications.

    Ratherbesailing is rightly upset that her RO ignored her complaint of cough until damage had been done. My RO apologized for nor looking at the CT scan ordered by my PCP for a week; he was away and wanted to view it with a radiologist but in retrospect admitted things were so bad he could have made the diagnosis alone. He did get me in with the pulmonologist immediately and I don't think another week made a huge difference.

    Hindsight is 20/20. I now know I respond badly to radiation given the PF, LE, and the nerve pain I have everywhere in the radiated area. I also know I am a good responder to corticosteroids. I would advise making a decision that you won't blame yourself for later on no matter what happens. All the best!


  • sarahnh
    sarahnh Member Posts: 105
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    Your posts are helpful to read. I relate to what you both have said. I will probably not regret my choice, regardless of consequences, so long as it was well-informed as possible. I do think I'd feel regret if I made a decision, and later found out that I'd overlooked some important data.

    I wish I had someone to trust implicitly. My MO is excellent, but for non-medical-oncologist stuff, she defers to other specialties, and doesn't really give me her own personal opinion. The ROs I've seen differ so much in their opinions, I don't know what to think!

    I'm not really a "kitchen sink thrower", but I am so uncomfortable going outside of mainstream medical guidelines! The existence of this randomized trial (and my potential added lung risk) is the only reason I'm considering not having radiation.

    maggie15 Your statement that "In cases like this with limited data you just have to make an imperfect decision knowing that you would like to have information that does not exist" is so very true, though I wish it weren't!