Fill Out Your Profile to share more about you. Learn more...

Anyone choosing no radiation after lumpectomy?

LMK440
LMK440 Member Posts: 3

DCIS 0 low grade - lumpectomy left breast close to chest wall. Due to possible heart and lung damage and other side effects seriously considering no rads at age 65. Anyone gone this route? thanks

«1

Comments

  • sunnyoutside
    sunnyoutside Member Posts: 2

    Hi- I had DCIS in 2013- left side deep inside and close to arm pit...had a lumpectomy, surgeon said he got it all, clear margins and doesn't recommend any other treatment even though mine came back that it was estrogen fed. Since then, a few other mammos have shown new spots of concern and they want to biopsy but I don't want to go through with it for various reasons, and my amazing surgeon moved out of state and I have to find someone new. I am going to choose a dr at a cancer hospital in my city and get an opinion on what to do and also discuss treatment options. However, I have read many mixed things on radiation and hormone blockers, etc. Some say it's the best way to prevent future cancer but others say its not necessary and you can just watch closely with mammos. I have never had cancer before and no family history. I am still kind of shocked about it all.

  • suzydthatisme
    suzydthatisme Member Posts: 2

    I opted to skip radiation.  I was told the difference in risk of recurrence was 3% with radiation, 8% without radiation.  My DCIS was low grade (1) and small and the surgical margins were good.  My oncologist follows me very closely - mammogram every year and check-ups every 6 months.  I'm 2.5 years out and so far so good.  I accepted the higher risk of no radiation because my DCIS was on the left breast and apparently rads can increase the risk of heart damage on the left side.  As well, my father died of lung cancer and rads can increase the risk of lung CA.  My oncologist has reassured me that they will 'watch me like a hawk' and if it returns I will still have the option of taking radiation treatments.  I hope this helps - best of luck to you!  

  • LMK440
    LMK440 Member Posts: 3

    Hi suzyd,

    I have opted out of radiation too. I asked for the OncoType genetic testing which came out with a very low reoccurrence score (9), and I had all the same concerns as you did about the rads. My radiation oncologist and oncologist both agreed and were comfortable with this decision. Now I have to decide about the aromatase inhibitor. Dr. suggests I take a Arimidex for 5 years. As we have pretty much the same diagnosis I would like to hear if this has been recommended for you. Of course there are side effects! What they suggest depends on age - I am 65. Thanks for your post.

  • yogamom2
    yogamom2 Member Posts: 64

    Hello, Skipping radiation may be the wave of the future. Apparently DCIS tx is a quickly evolving sub specialty.

    I am 60 years old, just diagnosed, had my meeting with the surgeon on Monday and will have lumpectomy in early Jan. Mammo & Biopsy reports state: DCIS stage 0: small (5mm), well contained, intermediate nuclear grade, cribiform, associated w/ calcifications found on mammogram with no mass or symptoms. Of course that stage could change with the pathology following Jan.surgery.

    My surgeon has ordered an ultrasound and said if that doesn't show anything new I won't need lymph nodes removed or radiation. I asked about the OncoType test but she said that's not usually used for stage 0 DCIS. She is considered a breast specialist in our area and spent the last week at a BC conference in TX. I will need to see a medical oncologist for hormone blocking medication because my biopsy showed 95% positive for both estrogen & progesterone receptors.

    Has anyone else had similar advice, esp re: lymph nodes & Oncotype? Thanks for your thoughts

  • alicebastable
    alicebastable Member Posts: 1,934

    LMK440, I was told that the oncotype score for lumpectomies assumes radiation in the calculations. So without radiation, your low score isn't as accurate - or as low.

    Modern radiation poses extremely minimal risks to the heart or lungs. Since my tumor and lumpectomy were on the left, I asked the RO about this. He said that's why it takes a week or more to complete the planning after the set-up, because of the calculations needed to bypass other organs. Have you ever seen string or wire art, in which straight lines are used to make circles and arcs? This is similar, bending rays to go around organs. Your risk of recurrence or mets is higher than the risk of radiation damage to organs.

  • LMK440
    LMK440 Member Posts: 3

    Hi Alice, My research did not indicate that radiation was assumed with the oncotype test: https://www.breastcancer.org/research-news/more-pr...

    Also my radiation oncologist and oncologist did not mention it and were ok with no rads in my case. Yes, the RO assured me that they are very good now at protecting heart, etc. and described the whole procedure. I am comfortable with not taking even a minimal risk for the extra % points shaved off reoccurrence. Not going to take the aromatase inhibitors either, going with diet and fitness to improve my odds. You have been through a lot! Best of luck to you.

  • monarch777
    monarch777 Member Posts: 338

    radiation is part of lumpectomy path. My onc wouldn't do my lumpectomy w/o radiation component. Just like AIs included in onco numbers

  • jelson
    jelson Member Posts: 622

    there have long been questions about the necessity for radiation in all cases of DCIS treated with lumpectomy. There was the Van Nuys Prediction Indicator (here is one webpage with an explanation) https://www.surgeons.org/for-health-professionals/... basically, age of patient, size and grade of tumor would be factored in to determine whether radiation could be avoided.

    Now there is a new genomic test of the individual's tumor tissue specific for DCIS - the oncotype DX DCIS test which helps predict recurrence and the potential for avoiding radiation. https://www.breastcancer.org/research-news/oncotyp...


    so hopefully more of us will be avoiding treatments which our individual situations indicate are not necessary.

  • rhonaa
    rhonaa Member Posts: 3

    It has been almost a year since I had my lumpectomy. They are still bugging me to get 15 radiation treatments. I have not had any recurrence testing. I am 62 years old and live by myself. I have no help with anything. I am still recovering from internal hernia surgery in April. I have had Crohn's Disease for almost 38 years now. It was so slow to recover from the hernia surgery. I also suffered a bowel blockage from chemo drugs and had bowel resection after lumpectomy surgery last January.

    Doctors never have an answer, only that you should get treatment with rads.

  • suzydthatisme
    suzydthatisme Member Posts: 2

    Hi LMK,

    Sorry for the slow reply - I check back only now and then.  My oncologist didn't recommend any hormonal treatments (I'm 61).  She left the decision to take radiation treatment up to me and seemed pleased when I decided to opt out.  They're following me closely - 6 month cancer centre checkups and yearly mammograms.  I'm in Canada and it seems they treat DCIS conservatively from what I can gather reading stories on these forums.  

  • CCinCA
    CCinCA Member Posts: 1

    Recently diagnosed with DCIS and I don't plan on doing radiation or hormone therapy. There is a lot of new information on the reality of the very small benefit of radiation on low/intermediate grade DCIS, but not many doctors will tell you that; I actually think many don't even know. I'm meeting with doctors now to find one that won't give me too much crap about not doing it. I'll do the lumpectomy...but that's it, but I'm also willing to have mammograms every 6 months to see if it comes back. I think I might think differently if I had high grade DCIS, though.

  • DeerOT
    DeerOT Member Posts: 1

    Hello. I had dcis 8 cm lumpectomy 12/28/18. In peri menopause. I’m not going to do radiation nor preTamoxifen & then Tamoxifen when the preTamoxifen forces my body thru menopause.

  • moderators
    moderators Posts: 7,683

    Welcome, DeerOT! Thank you for sharing your story, we hope you find this to be a supportive community!

    The Mods

  • Fitgal50
    Fitgal50 Member Posts: 3

    I was diagnosed on Friday with DCIS grade 3, ER/PR negative, right breast. I have an appointment next week with a multi-disciplinary team at our cancer center (Blessed to live where we have exceptional options for medical care).

    I will be 50 shortly and have not experienced menopause yet. I am in good shape and work hard to maintain a healthy physically fit body along with holding down a high-level position and enjoying time with my daughter and husband.

    I am honestly leaning toward double mastectomy with immediate reconstruction. The idea of maybe leaving some of this ‘beast’ inside me does not sit well and while I am not small busted I am not tiny either and it would not be mentally healthy for me to be lopsided or look odd (not that I walk around flaunting, but we do spend a lot of time on the water in the summers and I do tend to live in my swimsuit in the summer).

    Has anyone done the double with immediate reconstruction? The grade 3 makes me nervous, actually the entire diagnosis is exhausting!


  • moderators
    moderators Posts: 7,683

    Fitgal50,welcome to the BCO community. This is a very difficult choice to have to make. You may find some helpful information here; Mastectomy vs. Lumpectomy. We know how much information there is to digest when you you learn of your diagnosis. We hope you find some answers and support here.

    Warmly,

    The Mods

  • L-O-R-I
    L-O-R-I Member Posts: 56

    Not going to do radiation, chemo, or anti-hormone drugs. Just did the lumpectomy in April 2018. Was told margins were not clean so they wanted to do another lumpectomy. I said no. Follow-up tests have been good so far. Made tons of health changes, doing many natural therapies, lost almost 40 lbs, and feel amazing.

  • yogamom2
    yogamom2 Member Posts: 64

    Hi all, Haven't posted in a while. Had lumpectomy 2 weeks ago. Follow up yesterday and good news---clear margins! If they weren't clear, radiation would have been a possibility.

    BS says she thinks I can avoid it but next step is to send path to have recurrence risk evaluated-Oncotype DCIS-DX. May need consult w/ RO but If risk comes back low enough- no RT needed!

    After that comes eval w/ medical onco to see if risk is low enough to be safe avoiding long term oral meds like tamoxifen. BS promised referrals to docs that will work with my plan.

    Hoping to avoid it all for the same reasons Mehry states. If recurrence risk seems small, I'll take the risk to avoid the long term systemic effects of RT & meds.

    Looking into an oncologiy dietician/ nutritonist to help improve food choices, already huge into exercise.

    Keeping positive and focusing hard on that best case scenario. Eyes on the prize. Wishing you all some good news this week.

  • yogamom2
    yogamom2 Member Posts: 64

    Hi all, Just got my Oncotype DX DCIS score back and it was 7. That means a 7% chance of recurrence w/ in 10 yrs. This gives me peace of mind and solidifies my decision to opt out of radiation. My BS was comfortable with my decision and suggested I alternate regular yearly mammo/ GYN visit with yearly US/ BS visit. So someone will be checking every 6 months. Best of luck with your individual decisions. Our bodies, our choice.

  • Bikerchick95129
    Bikerchick95129 Member Posts: 4

    Thanks Yogamom2! I've got a meeting with my RO today (the first) to discuss radiation. The more I read the more I question the long term systemic effects also. I'm in excellent health otherwise and I'm thinking the Oncotype DX DCIS may be my next step. Husband may not be really happy about my decision but this is my choice. My DX is almost identical to yours but mine was 2cm, Stage 0, Grade 2, ER+/PR+.

    I'm a very active cyclist and spin class instructor (part time) but I'm thinking dietician/nutritionist may not be a bad thing to look into as well.

  • yogamom2
    yogamom2 Member Posts: 64

    Hi Bikerchick, Hope your meeting went well. I did get push back from the RO but, with the Oncotype number being so low, am comfortable with my personal decision. You have a lot to consider, luckily our diagnosis gives us the gift of time to research, weigh our options and find the path we feel works best. I am meeting with a registered dietitian specializing in oncology, as well as an acupuncturist next month. Willing to do the work to improve the odds. I am still considering the wisdom of estrogen blocking meds. My BS pointed out that I am 95% ER+/PR+ and wanting to prevent recurrence for at least 20 yrs, all the testing assumes a 10 yr span. She is at a conference this week and one of the topics is a lower dose tamoxifen option, specifically for women with our pathology---5mg daily instead of 20mg. She and I will talk once she has more info and I have time to see the research.

    We have more in common than DCIS. I also love cycling, more outdoor than in but am no stranger to spin class and I teach yoga & Pilates part time. It's ironic every time I hear "to lower your risk eat healthy food and exercise daily"....cause that obviously won't keep the wolf from the door.....but maybe it took a bit of the wind out of him. Best of luck with your decision.

  • Bikerchick95129
    Bikerchick95129 Member Posts: 4

    Hi Yogamom, While I liked the RO, he was already prepared to order the testing but doesn't like the Oncotype DX DCIS as he says it's sort of version 1 of the test. A more advanced test is out, the Prelude DCISion RT and he's aware of the growing camp of DCIS women who are refusing radiation and estrogen blockers. After speaking with him it appears that he's more against the estrogen blockers due to the long term systemic effects. For now I'll wait and see what the test reveals. Knowing that the radiation course he's suggesting is 4 weeks total at "low dose", I'm more inclined to at least consider it regardless of the test results.

    And my love of cycling is really ALL outdoors. (I'm 58 and have been a cyclist for over 30 years.) Teaching spin class simply affords me a free gym membership and a little more discipline to get my butt in the gym to do more weights and core. Yoga is my next frontier - thanks for inspiring me.

  • dl1129
    dl1129 Member Posts: 4

    Interesting to hear that your RO prefers DCISion RT. I called Genomic Health (Onctoype) and emailed Prelude (DCiSion RT) as I'd like to have one or the other done. My insurance considers Oncotype investigational for DCIS and the medical policies clearly state it is not covered. I expect the same for DCISion RT. Both say they offer financial assistance programs, but you don't get to find out what that looks like until you've committed to the test (and the cost) and gone through the insurance process. I was a bit put off by my conversation with Genomic. They clearly state to call for the details of the assistance program, but they will not give you ANY idea of if you might qualify or what that would mean until you're on the hook. Prelude is the same, but a bit 'kinder' and more reassuring in their approach, for lack of a better way of describing. I'm torn as to what to do.

  • Bikerchick95129
    Bikerchick95129 Member Posts: 4

    So....it's been a while since my last post and I just wanted to update and share my happy news. It took almost 2 weeks for my insurance company to approve the Prelude DCISion RT, which is routinely ordered by my RO. Regardless, I had an appointment this morning with RO and he came in, shook my hand, and said "Congratulations, you won't need to see me anymore"!!! Based on the results of the test my score came in so low (0.8) that there was no added benefit to moving forward with radiation. I have a 7% ten-year risk of recurrence. Given my results and my level of fitness/activity (very active cyclist) he said that if I were his wife he wouldn't recommend Tamoxifen either. (I should also note that I had a full hysterectomy 11 years ago.)

    I am one happy camper right about now. I still need to make an appointment with MO, but I'm leaning toward just keeping the increased surveillance and getting on with my life!

    DX - Left, 1cm, Stage 0, Grade 2, ER+/PR+

  • yogamom2
    yogamom2 Member Posts: 64

    Congrats!.... and welcome to the 7% risk/ active surveillance club. Our diagnosis is incredibly similar and seems our path forward will be too. Wishing you (and me) a long, uneventful, healthy life ahead.

  • Bikerchick95129
    Bikerchick95129 Member Posts: 4

    @yohamom2

    Thanks so much! Yes, it appears we may have similar paths. Here's to life~!

  • Barbjc
    Barbjc Member Posts: 4

    Hi all,

    I am back on this website after thinking I had aggressively treated my DCIS and it was never going to bother me again… I never even had a tumor, just calcifications that were found on a mammogram… I had a bilateral Mx February 2018 followed by reconstruction. I had totally clear margins and clear lymph nodes, but they did note very small microinvasion in addition to DCIS.

    I did not have radiation after this and I chose not to go on tamoxifen due to the increased risk of uterine cancer which also runs in my family. I meditate, do yoga, exercise regularly, eat healthy do all the right things!

    In February 2019, I had my yearly check ups and all went well. Literally the next morning I found a very small pea size lump right under my skin...in the same breast I had the cancer in, did an ultrasound and followed up with an excisional biopsy… Everybody thought it was just going to be fat necrosis that formed between my implant and the skin ; however, the pathology showed that it was the DCIS cancer cells once again. Devastating.

    I'm trying not to look back and wish that I went on tamoxifen… Not going to waste my energy on that. However I am glad I opted for the bilateral Mx because if I didn't do that I may not have caught this this early… They say with a Mx , if the cancer comes back it goes right to your skin and you find it right away which I did.

    So now my decision is do I do radiation ( they are recommending that) and do I go on one of the estrogen blocking pills. I have all of my appointments this Thursday and I'm going to ask about the DCIS oncotype test, but when I asked my doctor last year about that they said it wasn't necessary for me because I only had the DCIS and wasn't considering chemo... but now it sounds like they have a new type of test just for DCIS? It sounds like a few people here did have that test, if so did your insurance pay for it? but I guess logically… The DCIS in my body did come back so I guess my recurrence is 100% and I should just get the radiation...ugh!

    Been feeling very defeated this last week since I only found out a week ago… But I'm feeling my fight spirit building and trying to prepare and be ready to deal with any treatment that I decide to do. Cancer sucks. And I have to keep saying my mantra that I said last year… "Cancer has invaded my body but it will never invade my soul"


  • santabarbarian
    santabarbarian Member Posts: 2,310

    Barbjc, you might want to check out Proton Rads. They are very precise and can be programmed to release all their energy in the right place.

  • L-O-R-I
    L-O-R-I Member Posts: 56

    Very sorry to hear, Barbjc!  It must be so very shocking to feel that you treated your diagnosis, only to find out that it is back.  You seem like a go-getter so you will know what is best for you to do as soon as the shock wears off a bit more.   I'll keep you in my prayers!

    Lori

  • Memaw
    Memaw Member Posts: 1

    Last June, I was diagnosed with a lump. I was RUSHED to surgery without time to think. After surgery they told me mine was DCIS and 0 grade, it had clear margins. I took the genetic test and it came back negative. The doctors tried to scare me into taking radiation and the pill, they  told me if I didn't do radiation and take the pill that it would come back and kill me. I began to read everything out there. In the mist of them trying to scare me, I decided to do neither. I may have made a big mistake, but  I'm hoping and believing that I didn't. I did however, quit (COLD TURKEY) the hormone pill that the dr had me on over the past 38 years and I started taking the Protective Breast formula. I also eat flax seed and started eating more vegetables. I started exercising  more, leaving off sugars. and doing everything I can to improve my health. I am going back next month for a mammogram and will know more then. I understand that its best to take radiation and the pill, although I didn't, I don't recoment others to follow my advice. . Is there anyone else who did nothing. How are you doing? 

  • cassiecanada
    cassiecanada Member Posts: 101

    Hi Memaw
    I will not take femara but I will ( am)
    doing radiation. dcis
    isnt “cancer” yet per se, but rather
    an area of “ cell change”... which may
    or may not evolve in to cancer.
    Without knowing much about
    your situation, my sister had dcis
    5 years ago and also had radiation... and
    declined the tamoxifen. The idea
    seems to be that any cells left behind
    will be “ radiated” / starved off
    from tamoxifen....post surgery.
    Unfortunately, as my RO explained,
    there is no way to know if a stray cell
    has been left behind after surgery- Theoretically, the
    surgery would have gotten it all.... but
    the standard of care seems to be
    radiation/meds post lumpectomy...for
    dcis and early “ favourable” tumours.,
    to err on the side if caution.
    Who knows? I am receiving full
    on radiation right now for stage 1 cancer
    and for all I kmow- there may not even
    be ONE cell... so I MAY be getting
    radiation for NOTHING !! ...which
    is crazy if I think about it.. but there
    is no way of knowing!
    its a crap shoot with this wiley beast..
    and I decided to not risk it. however,mine
    is invasive versus yours which
    is dcis... non invasive. It is good you are
    being proactive about your mamograms
    and each person must be comfortable
    with their own choices- i have read
    alot about dcis and how best to treat it
    ( i also had 15 mm as well in my path report)
    ... and because it is getting picked
    up more readily now in early detection,
    there does seem to be a bit of debate
    as to its best treatment: but like i said,
    based on studies, it seems that
    with dcis, to err on side of caution, the doctors would recommend rad/meds...
    some women also choose to have a mastectomy
    while others choose to have surgery
    only- while still others choose lumpectomy
    rads etc.. Good luck moving forward
    you made the right choice
    for yourself at that time in your life-
    dont second guess yourself- i do that
    all the time- gets us nowhere-