Heart and Rads--Why so much pressure to have radiation?

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Rubytoos
Rubytoos Member Posts: 85

I have looked thru the forum off and on for weeks trying to find information that I can use in my particular situation. Have not found it and am beginning to feel somewhat desperate. So hoping someone can chime in here.

I am scheduled for lumpectomy early next week. I had a core biopsy of a 1.2mm lesion that showed papillary carcinoma in situ. It sits in my left breast, just over the chest wall and directly over my heart. My oncologist said it may be upgraded after they have a chance to examine the entire specimen. It could be invasive, have other components. For now, they are not planning to do sentinel node nor am I a candidate at present for chemotherapy or endocrine therapy. The current plan is lumpectomy with 15 radiation treatments barring any surprises with the follow-on pathology. They are also planning to get an onco report on the tumor post surgery and I had gene testing but am not positive for that. However, a complicating factor in all this is the fact I had a terrible bout of viral pericarditis a year ago and have been left with a very erratic heart beat and possible scarring. I had a half dozen heart and lung CT scans last year and I remember thinking I hoped they were not giving me cancer :(. I doubt that is the case, but I had the equivalent of 12 years worth of radiation in a couple months and I am not young. While breast cancer may not be in my genes, familial cancer is widespread and I am having tests for that as well.

Along with my cancer team, I have a new cardiologist who is at the same university hospital that I saw for the first time two weeks ago. Only in the last few months have I been able to regain some semblance of my former muscle strength and energy levels. My heart is not working optimally and causes great waves of fatigue to wash over me still, plus I had a flare of my pericarditis just two months ago. So I am not keen to do anything that will make this worse or prolong my recovery. Since meeting the new cardiologist I have some hope that I might be restored to my former self--I have been receiving bad medical management of my heart condition and in the absence of other factors (I have zero cardiovascular disease, don't smoke or drink, good weight etc) I may eventually heal. I asked him point blank what his opinion of my treatment options was and he said obviously this is a personal decision, but he would favor treatment that did not include radiation.

As I understand it, even with in situ cancer if one has lumpectomy one must have radiation per current protocol. With a mastectomy I would not need radiation. Although my treatment team says they are supportive of any decision I might make in this regard I feel a lot of pressure to do lumpectomy and rads. Everyone keeps telling me that technology has changed dramatically in the past 10 years and I accept that. But no one can tell me the risk is zero to my heart and lungs. The radiation oncologist was not dismissive but not at all dissuaded from the idea that there is a possibility that the 15 or so treatments they propose could in any way injure my heart and lungs. ALL they can say, and it is like a mantra, that a mastectomy is a "big" surgery. So the hell what? What they are NOT saying is that radiation is without risk to your heart and the survival benefit to you is greater than mastectomy.

When I asked for statistics re what percentage of people DO have complications with their heart/lungs following radiation even with today's "heart sparing" techniques, the radiologist got very flustered and flat could not answer me.

I read somewhere a report on a study in Denmark or the Netherlands or maybe both that mastectomy was as good or superior to lumpectomy with rads and in older women, it seemed mastectomy conferred the better survival benefit.

I can't think of any downside to having a lumpectomy next week and then having a mastectomy other than the issue of two surgeries. Papillary cancer is rather difficult to assess from core biopsy and having the entire lesion is key to a definitive diagnosis. But people are acting like I am exaggerating the risks to my heart from follow on radiation treatments. I feel very, very confused. Actually, I feel like my head is going to explode...and so much pressure to make a decision on the side of the thing I most fear.

Comments

  • Maomaonie
    Maomaonie Member Posts: 11
    edited November 2017

    Tibytooth,

    I had IDC 2.5 mm. My breast is small and the tiny tumor was in my left near chest wall. I had lumpectomy and had radiation simulation. The radiation plan shows the volume and radiation dose my heart and lung will get if I get the radiation. I have not decided yet. I am thinking about mastectomy to avoid radiation.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited November 2017

    Maomaonie - If you had surgery in August I'm not sure why you've not had radiation (or otherwise) yet but please check with your surgeon as well as the RO. Oftentimes tumors that are near the chest wall require radiation regardless of which surgery is chosen.

  • Polly413
    Polly413 Member Posts: 124
    edited November 2017

    Rubytoos -

    I have not looked this up lately but it used to be that one option for DCIS less than 1cm with clean margins was to forego radiation. In 2000, before this option was officially available, I had a 1mm DCIS lesion, grade 2, with clean margins after lumpectomy in the right side and I refused radiation. No recurrence in 17+ years. ( I am now on this board because this year I have a new cancer in the left side but radiation in 2000 to the right side obviously would not have prevented this new cancer. This new cancer is invasive and I am currently in chemo. I haven't decided whether to do radiation this time either because of worries about my heart, lungs, and thyroid plus the risk of lymphoma.) I am not advocating you refuse radiation. That is your decision based on your particular facts and advice from your doctors. But no one has tracked me all this years and i believe those of us who refused radiation for DCIS are underrepresented in the statistics.

  • Mimie
    Mimie Member Posts: 42
    edited November 2017

    I completed 16 whole breast and 4 partial radiation treatments of my left breast in September, and within a week I developed pericarditis. Be careful.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited November 2017

    Not everyone's heart will fall within the field of radiation, even with a left-sided cancer. I was (happily) surprised when the planning CAT scan demonstrated that my heart would be completely out of the treated zones - by quite a ways, actually. Yes, there can be some "scatter" but the vastly improved equipment in use today both for planning and delivery of radiation cuts that WAY down to virtually nothing.

    This issue is really worth exploring to your satisfaction with your RO. For me it was worth going as far as seeing the planning scans in order to have reassurance on this point.

  • Rubytoos
    Rubytoos Member Posts: 85
    edited January 2018

    Thank all of you for your comments. I still have not had surgery, although I have come full circle and will have a lumpectomy very soon--and I am not going to have radiation unless there is some terrible surprise re pathology.

    I had a bit of an epiphany reading the Dr. Susan Love's Breast book for the first time the night before I met with a plastic surgeon re mastectomy. Papillary carcinoma (did a word search on Kindle) was mentioned 5 times, and two or three of the references were listings in a graph (i.e. incidence in population). One or two sentences were dedicated to it in passing. That was it. I thought to myself that I have never been under so much pressure to make such a life altering decision with so little information... I feel like I could throw a dart at a board marked with treatment options and probably have as good a result.

    Then I found a research study in which a fairly large group of women were randomized into two groups--both groups had lumpectomies, but one group eschewed radiation. The results of this were presented just a couple years ago. The women actually had the usual spread in terms of tumor types, and the criteria for participation was simply tumor less than 3 cm, age 65 and older, could have recurrence or positive node, but not both. The survival rates were really not different. I am not 65, but I had a hysterectomy at 45 with no HRT. My country doctor at the time said don't do it and God was he right...Then I read other articles about aggressive over treatment of indolent cancer being reconsidered.

    I am definitely at odds with my surgeon on this, but again, I am having a lumpectomy and that is it. If something happens down the line, I will reconsider everything, but mastectomy would probably be my option of choice. I agree with Polly413 that women making this choice are underrepresented. I have now met quite a few just in my own circle of acquaintances and in my case, these people actually opted for this approach 15 and 20 years ago and are still here, no recurrence. One woman said she was made to sign liability releases, her doctors were so horrified. All of these women are very active, exercise and eat well. It isn't exactly a scientific sample, but it does give me food for thought. I also was encouraged by Hopeful8201's comments and that prompted me to make a second appointment with an RO. I doubt I will change my mind but I am going to investigate further. But right now the specter of pericarditis and primary cancer of the lung, etc. seem a greater risk.

    I wish someone would do a backward looking study on this! With the power of social media it would probably be pretty easy to get a decent population of people. I would definitely feel differently if my cancer were growing at a fast clip, of a more aggressive nature, and also if I was still raising children, although I would still scrutinize treatment proposals and make a decision based on the best available information. But my gut feel is that I am doing what works for me.


  • Truani1
    Truani1 Member Posts: 2
    edited December 2017

    Hi Rubytoos. I had a lumpectomy and sentinel node excision on the left in September of this year. This week was supposed to be my last week of RT. Monday morning as I was getting ready to go to therapy, I suffered severe chest pain, nausea with acute dry heaves, and diaphoresis. I have never had a cardiac event before, but I was certain it was a heart attack. By the time paramedics arrived the pain was radiating to my neck, shoulders, and down both arms.

    Repeated blood draws showed rising troponin levels. My EKG was abnormal. I ended up in the vascular ICU, receiving a nitro drip, blood thinners, etc. Multiple echo cardiograms showed no serious fluid around my heart. Multiple chest CTs with contrast and a head CT showed no signs of damage. I had a heart catheterization as well. I saw the video of it and my heart was beating strongly, with no blockages, tears, or leaks. I was released after about 30 hours and told to follow up with my PCP, and my oncologist. Which I am trying to do right now.

    Whiile waiting to hear back from them, I did some research. It seems that there is serious risk of damage to the heart with Radiation Therapy. Especially if you have other health issues like high cholesterol, diabetes, etc. A greater risk than I was lead to believe. In fact, here was more talk about possible "minor" damage to my lungs. I don't recall my oncologist mentioning the possibility of heart damage. Obviously, the chance for damage is increasedif the target area is the left breast. And the damage may not show up for years.

    I wish I had been more knowledgeable in the beginning. I don't think that I would have gone with the radiation had I known the risk to my heart. Now, in addition to monitoring myself for signs of returning breast cancer, I will be watching for cardiac issues too.

  • Moderators
    Moderators Member Posts: 25,912
    edited December 2017

    Dear Truani,

    Welcome to the BCO community. We are sorry for all that you have been through and glad that you reached out to our members. We hope that you will find support and information here that you will help you along the path to recovery. Let us know if there is anything we can do to help you to navigate the boards. The MOds

  • Rubytoos
    Rubytoos Member Posts: 85
    edited January 2018

    Truani1 I hope your condition has stabilized. The first time I had a bout of pericarditis (the index event) it came seemingly out of the blue. The pain you experienced is exactly like what happened to me. I am really sorry to hear that side effects were not fully disclosed to you. Damage to the heart did not come up in my discussion with the RO. I had to ask. Actually, I am the ONLY person on my team that has ever brought it up! And the responses from the radiology team were blithe to say the least.

    I got my pathology report and am going to post something under the papillary cancer thread but basically I have a 1 cm papillary DCIS and within that exists a .5mm IDC. So radiation is once again on the table, and I am meeting with an RO in a few weeks and my MO to see how this affects their overall commendations. I am having an SNL in the meantime, altho I am told the odds of anything being found are minimal at this point in time. It is a grade 1 cancer with a mitotic score of 1. I am a bit reluctant to have the SNL but my BS says it is not only prognostic, but it is prophylactic. I am going to ask the RO for a referral to a center that does proton therapy which does in fact spare heart and lungs. If I am not a candidate for that for some reason, I am not having radiation.

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