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Radiation Side Effects?

Hi Ladies! I was recently diagnosed with a recurrence and am having a lumpectomy in less than 2 wks. The current plan is to have 6 wks of radiation treatments following surgery/recovery. I'm not overly concerned; however my tumor is on the left side, right next to my sternum. I can't help but to wonder, what if the radiation damages my heart or weakens my breastbone.

Has any one else here had radiation on their left side - especially near the breast bone? If so, what were your SEs? I realize we're all different, but your feedback is much appreciated!


God bless,

~ Kim

Comments

  • ratherbesailing
    ratherbesailing Member Posts: 118
    edited March 2023

    Hi Kim -

    They will almost certainly do a breath-hold technique, which lessens the dose to the heart. Cardiac side effects usually take some time to develop, between 5-20 years. My cardiologist says radiation therapy makes women more susceptible to heart and coronary issues down the line. But that doesn't necessarily mean any one individual will develop failure. I am careful about blood pressure and cholesterol, and make certain to get lots of exercise. No side effects more than five years out. And as far as ribs and breastbone, CT scans show radiation effect, but I have had no symptoms.

    If your tumor is near your breastbone, you might ask if they are doing 3D radiation, or perhaps utilizing IMRT or proton, both of which are able to contour more precisely, and limit collateral tissue damage.

    Wishing you the best.

  • redemptivesufferer
    redemptivesufferer Member Posts: 84
    edited March 2023

    Thank you, RBS, for the info! I've heard of the breath-hold technique, but not of the different types of radiation; I'm so glad you mentioned them. I also didn't realize potential issues take so long to develop. I'm grateful for that and for your continued good health!

  • elainetherese
    elainetherese Member Posts: 1,625
    edited March 2023

    I had radiation to the right side but my neighbor had it on her left. She had a pre-existing heart condition (had to stop chemo early), and her heart survived the radiation by use of the breath-hold technique. Yes, proton might be worth looking into. We have it in my region but only one hospital has it available.

  • threetree
    threetree Member Posts: 1,261
    edited March 2023

    I had proton radiation on my left side and near my sternum. There is no breath hold with proton radiation. Like ElaineTherese said, you might want to look into it, and hopefully there is something near you. I was very fortunate and happen to live 15 minutes away from a center (same campus my cancer facility is on) that people come to from out of state for treatment. You may need to investigate this on your own, however. In my case, my oncologist did not suggest it at all, and had me speak to the "regular" (photon) radiologist, and it was just assumed I would get the radiation with her. Well, I had been reading and asked the photon radiologist about the proton radiation and she said she thought I should make an appointment to talk to them, so that I could make "an informed choice". I did that, and between my discussions with them and my reading, I decided to opt for proton over photon, due to the left side issues. I had a large tumor, so they radiated "everything"; chest wall, axillary area, clavicle, and internal mammary nodes, etc. I finished that around the end of November 2019, and so far so good in terms of heart and lung damage from radiation (none). I have however progressed to stage 4 and the cancer is in my ribs, spine, and sternum. The spine and sternum were not radiated, and I think the rib issues are also on the non radiated side, so it must have done something good on the cancer side. Also, cost is a big issue with proton radiation, so you would need to make certain that you could get it covered. Many (most?) private insurance plans don't cover it. I was lucky and was eligible for Medicare, and they do cover it. Assuming you are younger however, you will need to look to private insurance or out of pocket. The actual cost is something like $60,000 I think they told me. They also told me that if I could not get coverage and had to pay out of pocket it would "only" be $10,000. For some that's doable, but not for a lot of us. Just some things to think about. Also, I only ever got a bit of a "sunburn" and didn't have too many problems. That "sunburn" and fatigue were my biggest issues, and the fatigue went away gradually after I stopped radiation. I used calendula cream as they suggested, on my chest area after the treatments. Others have big problems, but mine were actually pretty minimal.

  • redemptivesufferer
    redemptivesufferer Member Posts: 84
    edited March 2023

    Thank you, Elaine Therese, for chiming in! That's good to hear about your neighbor, and I do plan to look into the proton therapy. Have a blessed weekend!


  • redemptivesufferer
    redemptivesufferer Member Posts: 84
    edited March 2023

    Hi ThreeTree, how disappointing that docs don't give us all of our options. I'll definitely research proton therapy; I'm unsure if it's even in my area, though I reside near a large city. The cost, however, is discouraging - but one never knows until research is done. Happy to hear you didn't receive major SEs from the radiation.

    Do you at all regret having had it, since it progressed anyway? Or do you feel like you would have always wondered if you had done all you could?
    (I'm very sorry that it advanced and hope you're feeling OK considering.)

    Just today, I've started waffling whether I should even do it. Trying to research, pray, and get input from others. Maybe pathology after surgery will give me a clearer picture. Thanks for your response!

  • threetree
    threetree Member Posts: 1,261
    edited March 2023

    RS - I don't regret having the proton radiation, and I don't think it had anything to do with the new spread. I don't know that the "regular" (photon) radiation would have done any better job. My understanding is that any radiation is to control local recurrence and has no effect on metastatic spread, so no regrets at all.

    The cost is something to absolutely consider. If you decide to look further into it, I think it would be really good to do what they had me do, and talk to a financial "counselor" at whatever proton center you might choose. I got real good information from the person I spoke with, and it was apparently a routine thing that all prospective patients there had to do, before consulting with the radiologist there. They know of possible funding solutions. At my center, they will also appeal decisions of private insurance companies who don't want to pay, as something of a routine matter. My work insurance was asked to pay first, but declined (I did get coverage via Medicare), the hospital appealed, and the company did finally relent, so I assume they worked something out with Medicare. All I know is I wound up not paying a penny out of pocket.

    By the way, here is a link to a map of the proton centers in the US:

    https://www.proton-therapy.org/map/

    Thanks for asking how I'm feeling. I'm new to this stage 4 business, so my emotions are all over the map these days, but physically I am generally OK, but not as lively as I usually am.

    I think you are doing the right thing by getting information from many other sources. That's what I like to do too. Then you can weigh it all and come up with something that is right for you.

  • ratherbesailing
    ratherbesailing Member Posts: 118
    edited March 2023

    Redemptivesufferer, I'm with threetree that you should explore all options. But please be aware that there are very few studies on the efficacy of proton radiation, for any cancer. In other words, while the theory is that there is less damage to collateral tissue, there is no solid evidence that it prevents recurrence. That is why most private insurers don't cover it, and some physicians believe it is hype except for pediatric and brain cancers. In fact in breast cancer, there is some evidence that skin damage is actually worse with proton (although threetree, I hope you didn't experience that.)

    I only mention this because I don't want you to think your doctors may be hiding treatment options from you. Proton is certainly something you should ask about. Another option is IMRT, which helps limit high doses to the heart and lungs, but does usually result in a low dose to a broader area. Many hospitals offer IMRT.

    Also, regarding heart damage, one stat used by many radiation oncologists comes from a study that says each gray of radiation delivered to the heart increases the risk of heart failure by a relative 7%. Relative is the key word - if you have a 10% chance of heart failure 2 grays of radiation would raise that to only 11.4%. I had left-sided radiation and, like threetree, they covered my internal mammary nodes, which are near the sternum and increase heart dose. But even with "traditional" 3D radiation the dose to my heart was only 2.3 grays.

    I understand what a difficult choice it is, and you have already been through so much. And I hope surgery and pathology reports help clarify things.

  • threetree
    threetree Member Posts: 1,261
    edited March 2023

    Very good points from Ratherbesailing. The proton radiologist I initially consulted with was up front about the lack of long term data. I too heard that it is much more solid scientifically for children's brain cancer, and possibly things like tumors at the back of the eye or on the spine very near the spinal cord. I think the doctor I saw said they had pretty good 5 year data re breast cancer, but not the decades out information they would like to have. I had initially believed all the "hype" and marketing claims for proton therapy and asked the radiologist why what she was telling me didn't necessarily agree with what I read, because the marketing all said different and more positive things. She kind of "snarkily" stated that she had nothing to do with marketing and that what she was telling me was the reality of it all. After weighing all the information I gathered, I still decided to go with it, and have not had any any local recurrence in the area that was radiated. It's been a little more than 4 years, since I completed the proton sessions. The new stage 4 spread that I do have is in my bones, considered metastatic, and not anything that any radiation would have been expected to prevent.

    While I had quite a bit of fatigue and minimal (tolerable) skin problems, there was a woman coming there at the same time who had real bad peeling, weeping, etc. and had to take a week off. There was another woman there too that I used to chat with while waiting and she seemed to be somewhere between me and the other woman who had to take a break. It seems to really vary from person to person, but both kinds of radiation can do this.

    Also, the doctors don't usually offer it and you have to learn about it on your own, because it is not currently "standard of care". One of the women I used to chat with in the waiting room however, did say that her doctor did suggest it to her, because of her left sided, very large tumor, and very involved internal mammary glands.

  • redemptivesufferer
    redemptivesufferer Member Posts: 84
    edited March 2023

    threetree and ratherbesailing, both of your responses have been extremely helpful and I can't thank you enough for taking time out of your schedules to respond. I'm sorry my response is so delayed. I do my best to respond within 24 hrs, but sometimes it doesn't happen. z

    RBS, you seem so knowledgeable that I wonder if you have a background in radiation? Or are simply extremely adept at research. :-) I appreciate you sharing why medical professionals may not recommend it (I'd hate to think ill of them for not sharing the option :-) ) I'm just now starting to research IMRT. Does anyone else think researching medical procedures/diagnoses could be its own FT job? lol.

    ThreeTree, I can completely understand your emotions being "all over the place." No doubt it will take time to settle into "the new normal." I pray your SEs are MINIMAL and that you find you have an amazing support system to help you along the journey. BTW.. I discovered Proton therapy is available in my area. Last night I completed an online form for a nurse to call me with additional information. One thing is for certain, I won't feel rushed into a decision. I'll take the time necessary to come up with a solution that works for me.

    Thank you both again for your information - I'm extremely grateful. Have a WONDERFUL week!

  • ratherbesailing
    ratherbesailing Member Posts: 118
    edited March 2023

    Hah, yes researching can certainly be a full-time job!

    Thank you for your kind reply. I do a lot of research in my job, and am comfortable with it. But I also try and remember that research is only a small part of the equation, and that physicians also possess the years of training and clinical experience I lack. So I tend to trust what they tell me. But as threetree points out with her experience, often there is a divergence of medical opinion on what is best. And unfortunately, despite online reviews and how we perceive bedside manner, we can't truly assess the competence of our providers or how much they care. My RO (at a major cancer center) didn't care. And when I asked, after the fact, why they didn't use IMRT to lessen my very-high lung dose, the response was, "Because (3D) is what we always do." I just about hit the ceiling. They had never bothered to consider IMRT although, in my case, they should have.

    Whether IMRT or proton is better than 3D in any individual case would be way beyond the knowledge base of most of us here, including me. Everyone's anatomy is different, so no one can give you an accurate estimate on heart or lung dose until they've taken CT scans and designed an actual plan. Even then, original plans are often modified before starting treatment. What you want is a radiation oncologist that really checks their staff's work (plans are usually actually devised by a resident then reviewed in weekly sessions) and one that cares about you and your concerns. I think you are wise to do the research and discuss it with your RO. My belief is that if they know you are doing some critical thinking on the matter, it will help ensure they also take the time to really think it through and give you the best outcome. And you can always get a second opinion.

    Glad to hear you found a proton center, and can check out that option. All the best to you, and let us know how it goes!