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Has anyone just done Endocrine Therapy(No Radiation)?

Brand new to this. I’m 65 years old and was Dx with IDC in April 2023. It was found on a my yearly Mammo/Ultrasound. Had a lumpectomy on May 5th. Stage 1, Negative Lymph Nodes, Estrogen and Progesterone strongly positive, HER2 negative, Proliferation 5%.
I met with the Medical Oncologist a few days ago and am meeting the Radiation Oncologist this week. She is doing an Oncocyte test. I asked the MO about just doing the Endocrine Medication and possibly not doing radiation. She said that some people at my age and with this being in the early stages chose not to do the radiation.
Have any of you chose to skip the radiation and just do the medication?

Thank you all for sharing you experiences in these discussions.

Comments

  • salamandra
    salamandra Member Posts: 725

    Hello,

    Last time I was doing a lot of reading about this, the age I usually saw as a cut off for declining radiation treatment was 70. That was a few years ago, so maybe there is updated research since then.

    I believe the way they get that cut off relates to life expectancy. If you're only expecting to live 5-10 more years even without a recurrence, then the benefits of radiation are much less likely to make any difference for you.

    Of course life expectancy is statistics, and some 70 year olds might be hoping and planning for 25-35 more good years (and I know people with ascendants whose life spans make this seem totally plausible!), whereas others may be feeling lucky to have made it to 70 and anything further is bonus.

    I guess what I'd throw into the mix for you is:

    • Even if radiation does not extend length of life, preventing even a local and treatable recurrence can be a huge quality of life issue. The process of diagnosis and treatment is incredibly mentally and emotionally stressful at any age, but the older you get, it tends to get more physically stressful on the body as well. Recovery from surgery alone, which is generally considered the simplest and also most important part of treatment, is a much bigger deal the older we are.
    • Tolerance for and compliance with endocrine treatment is much lower than for radiation. Almost all women who plan for radiation can complete it (if they have sufficient wealth/time/resources), but a significant subset of women have serious enough issues with side effects or access that complying with a full course of endocrine therapy is a bit more of a crapshoot. I don't want to overstate this because many women have absolutely no issues, or are willing to persevere through trying different meds and lucky enough that they will find one that they have no issues with before too long. But it looks like up to 50% of women do not follow through 100% on the recommended endocrine treatment.
    • Radiation must be done immediately after surgery. There are no take-backs or make-ups. Endocrine therapy can have benefit at any point after surgery.

    When I was getting my radiation treatment, I met an 80 year old who was going through it with me. She'd agreed with her doctor (at MSK - respected cancer center) to do the opposite of what you are proposing. She was doing radiation but skipping hormone treatment. That makes sense to me because radiation treatment is 3-6 weeks and done - or potentially even once and done if you are eligible for intraoperative treatment), where as hormone treatment is dragged out for 3-5-7 years.

    She felt a lot more fatigued from her radiation at 80 than I did at 38. But she said it was basically ok - and also she was retired and able to rest and recover and plan her time much more. Then when she was done, she was done. I haven't kept in touch with her so I don't know any updates.

    I know I'm not speaking from personal experience, so hopefully others will come along soon who are more in your boat!

  • moderators
    moderators Posts: 7,684

    Great post, @salamandra!

    Welcome to you, @kathys612! We're so sorry to hear of your diagnosis, but we're so glad you've found us. As you can already see, our community is a wonderful source of advice, information, encouragement and support — we're all here for you!

    We wanted to add in here some newer research news articles from our site that you might find helpful:

    https://www.breastcancer.org/research-news/some-older-women-with-luminal-a-breast-cancer-may-be-able-to-skip-radiation-after-lumpectomy https://www.breastcancer.org/research-news/65-plus-w-early-hr-pos-may-be-able-to-skip-rads

    In addition to this older article:

    https://www.breastcancer.org/research-news/20120401

    We hope this helps!

    —The Mods

  • harley07
    harley07 Member Posts: 247

    @salamandra’s post is excellent and I don’t have anything to add to it. I would meet with the radiation oncologist and get their opinion so you can weigh your options.

    I can tell you about my experience. I was diagnosed 2.5 yrs ago at age 63 with IDC stage 1, grade 1, ER/PR+, Her2- and no lymph node involvement. I also have a genetic mutation. I had a two lumpectomies plus 5 rounds of accelerated partial breast radiation which I tolerated well. Of course I had no choice as the RO told me there were no side effects and they didn’t want to hear any complaints. I was a bit uncomfortable with the accelerated treatment plan but it was all they would offer me and finding another RO for a 2nd opinion during Covid was impossible. I’ve also read that 70 is the age when you and your doctors can consider forgoing radiation, but that may have changed. My surgeon said she would have considered no radiation for me. However, this isn’t really her area of expertise and she also refused to ordered an MRI prior to surgery and didn’t feel the need to wait for genetic testing results prior to surgery. Overall, due to Covid and the stresses placed on the health care system, I feel my care was substandard. Hopefully the situation is better in your area.

    Each case has its nuances so it’s very important to meet with your team and carefully consider the pros and cons. Best of luck and keep us posted.

  • maggie15
    maggie15 Member Posts: 766
    edited May 2023

    kathys612, Salamandra and the mods provided you with good information. I was diagnosed in 2021 at age 69 and the cutoff age for skipping radiation for a low risk tumor if completing five years of endocrine therapy had been lowered to 65 or even 55 in some studies. While overall survival and risk of distant recurrence are the same there is a slight increase in the ten year risk of a local recurrence (about 8%.) However, studies have shown that local recurrences leading to that statistic happened in those who were not highly ER+.

    The usual side effects of radiation, skin reddening/sensitivity and fatigue, do pass. However about 10% of people develop late side effects like permanent hardening of breast tissue and breast shrinkage, telangiectasia and lymphedema. There are also small long term risks for heart/lung damage and other tumors (lung cancer and rib sarcoma.)

    Completing 5 years of hormone therapy must be done to keep the equivalent risk. Some people have minimal or no side effects from AIs but others find them difficult to deal with. Many with bothersome AI side effects get some relief by switching to a different med.

    My surgical tumor pathology was different from my biopsy pathology so I was upped to an intermediate risk of recurrence which meant that skipping radiation was no longer an option. The actual treatment was doable (minimal skin reaction and severe fatigue) but I ended out with lymphedema and permanent lung damage. I was treated at a highly regarded cancer center by an academically well known RO so it wasn't lack of expertise; it's just that there are risks no matter what you do.

    Your Oncotype score will provide more detail about your tumor and help with your decision. I hope things work out well no matter what you decide.

  • kathys612
    kathys612 Member Posts: 2

    Thank you all so much for sharing your experience and knowledge. I so appreciate it!

  • alicebastable
    alicebastable Member Posts: 1,934

    Kathys612. Please dont make a snap decision without thinking about it and questioning your MO and RO. If, for some reason, you cant tolerate the anti-hormonals, you likely can't get a do-over on your radiation decision. I was 68 when I had my lumpectomy. Due to needing a different surgery, my radiation was delayed, but my RO insisted that 12 weeks was the absolute limit for starting for it to be effective. I didn't have side effects - minimal flaking and pink in the nipple area, some darker pink on my collarbone. I had a micromet in my sentinel node, so a node-negative patient might not need the axillary and clavicle radiated. I was not fatigued, in fact, i felt more energetic than usual. I needed regular CT scans for a different issue, and some lung scarring showed up. But now, almost 5 years later, that has faded. I tried Tamoxifen for about 9 months and it gave me an unpleasant personality change, a fatty liver, and badly thinning hair, so I quit. My oncologist didn't like it, but it's what I wanted. I felt the radiation had PROBABLY cleaned up any stray cancer cells before they could move through my system.

    My mother had a lumpectomy and the long course of radiation, 33 sessions, same as mine. She got tired, but mostly from driving round trip to a different town every day. It was several years ago, so I don't know if she took an anti-hormonal. I was so ignorant about breast cancer then.

  • janehicks
    janehicks Member Posts: 48

    I'm confused by all this but my knowledge is limited as my diagnosis is quite recent.

    Doesn't radiation serve a different purpose than hormone therapy? I thought radiation was to kill off any stray BC cells in the breast but Hormone Therapy was to prevent cancer from occuring in all cells in the body since our cells response is different once diagnosed.

    Also, if someone has a clean MRI plus no lymph node involvement shown after SNB, why do they need radiation? Is it just to kill of possible cancer cells that can't be detected by imaging or biopsy?

  • maggie15
    maggie15 Member Posts: 766

    @janehicks , Your understanding that radiation is meant to kill stray BC cells in the breast while HT is meant to prevent any cancer cells which have left the localized area from becoming active elsewhere in the body is correct. Imaging can't pick up individual or small groups of cancer cells so radiation is done whether or not anything is seen. There is no way of knowing whether stray BC cells have escaped from the area so if the tumor is ER+ HT is always recommended. The length of HT treatment depends on the MO's guess about how likely wandering cells are (7 or 10 years for nodal involvement or LVI, otherwise 5 years but maybe more if grade 3.) There are some people who probably get no benefit from radiation and/or HT but statistically it does lesson recurrence in large populations.

  • maggie15
    maggie15 Member Posts: 766

    @janehicks , Those wandering cells can become active after 5 years even if there is no lymph node involvement which is why a small percentage of people with very early stage breast cancer become metastatic. The statistical research shows the benefit of continuing beyond 5 years without nodal involvement is very low, however. Estrogen is bad for ER+ BC but good for so many other parts of your body including the heart, brain, bones, joints and genitourinary system that statistically the disadvantages outweigh the advantages beyond 5 years.

    The Breast Cancer Index Test is a genomic test that predicts the benefit of continuing HT beyond 5 years so that a more informed decision can be made. The dream is that doctors will someday be able to test each individual to assess their specific risks so that nobody is undertreated or overtreated. I'm glad people here do their own research and spread the word because all too often we are (inadvertently?) not provided with the most current information.

  • janehicks
    janehicks Member Posts: 48

    Thanks Maggie15!

    Wouldn't HT also kill any cells left in the breast?

  • harley07
    harley07 Member Posts: 247

    @janehicks - I wonder about that as well. When I reviewed the pathology report after my 2nd lumpectomy it was noted that the 3rd lymph node removed was actually fatty tissue with ALH. I asked my BS about this due to a concern it would develop into ILC in the future. I had apparently read the pathology report in greater detail than she had because she reiterated that it was fatty tissue. I pressed the issue of ALH because I was concerned that perhaps there was additional atypical hyperplasia (I had both ADH and ALH along with IDC). The BS looked up the path report and confirmed the ALH but said that the HT would take care of it. I hope she’s correct.

  • maggie15
    maggie15 Member Posts: 766

    @janehicks , @harley07 HT does work to kill any cancer cells left in the breast.

    Radiation works by destroying the DNA in the cancer cells within the portal as they divide. While all cells are affected cancer cells grow (and divide) more quickly than normal cells so more of them are killed. The process is a compromise between killing off the cancer cells and letting the normal ones recover.

    HT works by depriving ER+ cancer cells of the estrogen that they need to grow. Tamoxifen attaches to the estrogen receptors on the cancer cell so that estrogen can't attach to the already used receptors. AIs prevent aromatase, an enzyme in fat tissue, from converting other hormones in the body into estrogen. This reduces the amount of available estrogen in postmenopausal women by about 95%.

    Radiation and HT do not work perfectly so a better outcome is reached by using both together. Both have adverse side effects so how much of each is recommended depends on each person's situation. Also, everyone's immune system is constantly killing off rogue cells including cancerous ones. All we can do is hope that none of those wandering cells get a chance to invade another part of our bodies and start growing again.

  • janehicks
    janehicks Member Posts: 48

    Thanks for expounding on that maggie15. I'm about to embark on the radiation portion of my treatment and am torn between being thorough yet cautious regarding overtreatment that could potentially cause secondary damage. If only we could project to the future and see what is recommended after more research has been done.

    @harley07, sorry you had to have a second lumpectomy. Good for you for pressing the issue with your BS! It's scary to think a doctor can miss this stuff in an often overburdened health system (at least in the US), it happens too much to not carefully peruse our results and ask the important questions.

  • lillyishere
    lillyishere Member Posts: 769

    I asked my MO about the role of AI, if it kills cancer cells or leaves them wandering around without food. He said both. I guess cancer cells that hang out without estrogen can be prone to the body's immune system killing them or not recognizing them. I guess no one can say anything for sure but we only hope for the best.

  • harley07
    harley07 Member Posts: 247

    @ Maggie - thanks for clear explanation. Your response was much better than any I received from my doctors.