Considering opting out of radiation

Oh thanks! I understand tumors and grading, but didn't understand what you were saying about a shorter radiation course helping or hindering you because of your grade 1 tumor. Were you thinking that because yours was slower growing it would help to get the radiation over a longer time period?

In my read of the literature, radiation would reduce recurrence by about 25% vs lumpectomy alone for me. The risks of lung cancer, etc., from the rads are much, much smaller than this. It's so hard to put all this stuff together, but my surgeon told me that the science indicates that a lumpectomy with radiation has the same long-term survival rate as a mastectomy, and so I did the lumpectomy knowing I would "have" to do the radiation. I am 4 weeks into 6.5 weeks of rads and it has been very manageable so far. Here's the primary paper.

Fisher, B., Anderson, S., Bryant, J., Margolese, R. G., Deutsch, M., Fisher, E. R., ... & Wolmark, N. (2002). Twenty-year follow-up of a randomized trial comparing total mastectomy, lumpectomy, and lumpectomy plus irradiation for the treatment of invasive breast cancer. New England Journal of Medicine,347(16), 1233-1241.

http://www.nejm.org/doi/full/10.1056/NEJMoa022152

AlaskaGal you need to trust your gut. Go get pregnant and keep screening? You can change your mind later

So even if you will miss the optimum time, you can still choose to do radiation later. It's nice that your surgeon agrees you don't need it. Makes sense to me.ssam.

Hey ladies!

ssam, man, I can't believe they want to radiate you after DCIS... but I guess that is standard. I would think in that case you are privileged enough with this very early catch to be able to easily handle the imbalance through holistic lifestyle shifts. Of course everyone absolutely must make up their own mind and we're not supposed to tell each other what to do, but I can tell you that based on the research I've done, radiation is really overkill for one instance of DCIS. But that's me, and when I say that, I'm talking about taking very concrete actions as alternatives to radiation. As BeachLife stated, there are so many ways we can have imbalance, even when eating mostly organic etc. I know for me, that the Dx was a huge wake up call. For the last few years I had been in an extremely stressful job with long hours in front of the computer working in a field with a lot of conflict (nonprofit environmental issues). I had developed cycles of insomnia that put me in a super stressed mood all the time, I wasn't getting enough exercise, and I had moved to a new town for my work and felt socially isolated. As you can imagine, this placed stress on my relationship, and I often turned to comfort foods, sugar and caffeine, even though it was all "organic." I could actually feel the tumor grow during this time through palpation since it was just under the skin.

I know I already stated this stuff, but I want to repeat what I am doing instead of radiation so people understand the decision I've made is not simply to skip radiation and play the odds. Since Dx I have:

- transitioned out of that job, and pursuing other forms of work that are better fits for my relatively sensitive nature, and my need to move my body more than an office job allows.

- put a ton of energy into re-booting my social connections and making time for friends and family (I actually have energy for it now that I'm not working so dang much). I read one study that said social intimacy can have a dramatic impact on recurrence rates but can't find it now. Also, to paraphrase author David Whyte "dwindling friendships are the first terrible sign of a life out of balance" and I had periods of intense loneliness and isolation while the tumor was growing. For the first time in my life, I was too tired to be social, and then grew to fear social interaction because i began to take the loneliness personally. Weird psychological state that I'm glad to be done with!

- get at least 30 minutes of good exercise a day (trail runs that bring me into nature, quality yoga classes that connect me to mindfulness, for me, are better than pounding on a machine at the gym under harsh lights but everyone's different). When I had insomnia issues, I just felt too tired to exercise, so really wasn't regularly exercising while the tumor was growing.

- started taking small doses of melatonin and incorporating sleep routines including hot baths and "sleepy time" tea to ensure I get good sleep. That alone has transformed my life!

- working with a therapist to go over my mind-body healing and releasing family patterns or other habits that don't help me.

- working with a relationship therapist to ensure my partner and I have real intimacy and get through the stress of the cancer Dx. This has been amazing and brought us closer together.

- supporting optimum health with nutrition. I cut out sugar, coffee, and factory meats and any nonorganic animal products (naturopath said cheese, meat and eggs that bioaccumulate chemicals are the most important - I had mostly eaten these at restaurants, and had been eating out a lot since I worked so much, so it added up). Eating wild Alaskan salmon 2-4 times a week (not hard since we are fishermen!) Also dramatically increased the quantity of vegetables I eat, from 1-2 servings a day to 8-10 servings a day of all different types of veggies. Googling anti-cancer recipes and books, there's so much nutritional info out there. As Hippocrates said - let your food be your medicine! Also found good diet instructions in How to Prevent and Treat Cancer with Natural Medicine by Michael Murray and others. They emphasized the importance of getting tons of different types of nutrients and minerals from the full spectrum of veggies and all the different colors. Also spices, garlic and ginger are important in that book. Reducing sugar is an interesting one, and I think the benefit is that you get off the glucose high and then crash cycle, are more even tempered, and get rid of insulin issues that can be cancer promoting. Google it, I can't explain it well from memory.

- working with a general doctor/naturopath to go over any potential infections or parasites or anything else that could be interfering with optimum immune function. I haven't found anything currently but have had trouble with viral infections in the past.

- On advice from two naturopaths, I am taking 2 g curcumin in two doses daily (for inflammation, both recommended Thorne Meriva brand because it is prepared well), turkey tail mushroom (proven to fight breast cancer) 3 g daily in three doses (I take Host Defense and trust Paul Stamets company, though a different brand was used in the clinical trials my docs are using), and quality probiotic supplements (Primadophilis is the brand they recommend - yogurt or kefir or kombucha won't do the trick - either the quantity isn't enough or other things come with it you don't want). I'm still learning about it, but reducing inflammation and promoting healthy digestion is fundamental to fighting cancer. A lot of it happens in your gut. I have had endometriosis, fibroids, ovarian cysts in the past, and have always felt like i'm not processing hormones quite right. Intestines and liver function are critical for those of with ER+, because they remove excess estrogens etc.

- One really cool MD/Naturopath I saw said that the single largest difference successful cancer patients have is that they have a strong practice of visualizing being free of cancer. She said clinical trials have now proven that people can boost specific aspects of their immune systems by actually meditating and focusing on enhanced immune response. Anyway, I'm working with my therapist on ways that I can do visualization without feeling like a nutcase. Also taking a meditation class. Though my therapist noted that you can do walking or doing the dishes meditation too, as long as you are bringing conscious focus to being mindful.

- for me, getting quality bodywork, which I never had time for while working all the time, is key to releasing stuck energy in the body and enhancing overall health. I started studying thai massage as a hobby a few years ago but fell out of practice. I'm now committed to re-joining that community, going to classes, and getting good Thai massages regularly. In Thai massage philosophy, and yoga too really, most illness comes from blocked energy pathways (called "wind" for Thai practitioners) - points of tension - in the body. Sometimes you just need to get these out through deep compression and assisted stretching.

- the last category, for lack of a better name, I call "raising my vibes"! For me, this means making sure I'm laughing, dancing, singing, expressing myself and experiencing joy everyday. This might be the most important one, who knows. I do know it was missing while the tumor grew.

So, over the last few months I've been learning about all this stuff and am slowly phasing it in. I haven't felt this good in years. One weird thing I noticed is that my fingernails are really strong and healthy, I never realized how weak and flimsy they usually are, but I think all the minerals from all the veggies may be helping there, or something. I also have no indigestion, belly bloating, or digestive discomfort in my intestines - you kind of get used to that, but you notice how good it feels when its gone. I've also noticed I have a lot of happiness to share with friends and strangers, because I just feel good.

Anyway, please just understand that I'm choosing healthy alternatives to radiation, not just shunning it and playing the odds. As my docs pointed out, you could do all this stuff along with radiation too. But as I told them, one of Hippocrates' other big statements was to first do no harm. I think he was onto something there!

When people quote the odds of recurrence without radiation, I kind of think of it like I'm signing up for a marathon in a few years. I'm told my odds of completing it a certain percentage if I just show up. Well, why just show up? I'm going to train my ass off and make sure I win that race.

Alaskagal thanks for your post. I have been reading lots lots here, and appreciate all the info and links. I too will work on changing my lifestyle to also improve or lower my risk to reoccurrence. Although in discussions with my family doctor, I already have a lot of favorable conditions in the good side for lowering the risk already, non-smoker, non-drinker, no hormone therapy replacement, not overweight and active. That is why my confusion in the RO not even wanting to suggest that I might be ok to not have radiation. She just kept saying that is the recommended treatment. I am still leaning towards no radiation, and have under the end of November to decide, before the "optimum" time passes.

Funny thing though on another subject, on the Newshour tonight. I am in Canada, and it is Movember. All about prostate cancer this month. and there was a news piece about how the treatment recommended depends on which province you live in, and for some men, with low risk prostate cancer, they take a watch and wait approach rather that radiation as they are now realizing that the radiation for low risk cases may add more complications unneeded.

Hi AlaskaGal, I am so happy to see your posts on here. Finally, I have found a like minded person! I have been questioning the protocol for breast cancer since my diagnosis in July. I had a lumpectomy on 9/11/15. In my pursuit to find hard evidence to help my in my decision making process, I am frankly left more confused by the information. At times, I feel my poor brain is going to explode from all the information, or lack of information! What I find most frustrating is there does not seem to be any good ways to figure out your personal risk for reoccurrence. This is the information that I think is most valuable in deciding whether or not I need radiation and Tamoxifen. I asked my medical oncologist to order the Oncotype DX because it is supposed to give you your reoccurrence risk. However, the results are for the "10 year risk of distant recurrence after 5 years with Tamoxifen." Very disappointing since this was not the information I was expecting to get. The results were that I have an 8% chance of a distant recurrence in 10 years after 5 years of Tamoxifen. This is solely with surgery (no distinction to whether it is a lumpectomy or mastectomy) and Tamoxifen. Radiation was not part of the clinical trial that this result is based on.

Like you, my main objectives are to boost my immune system, eat organic nutritious food, exercise, take vitamins and supplements, decrease my stress, keep my vitamin D levels up (I chronically had low vitamin D levels throughout my adulthood...I understand a lot of BC patients have low vitamin D levels), and detox. Strangely, I think I am going to come out a healthier person from having had BC. On the advise of my Naturapath I am taking the following daily: multi vitamin, fish oil, probiotic, vitamin D 6000 iu, modified citrus pectin powder 15 gr., raw vitamin C 2000mg, Immune Builder 5 Mushroom Formula 4 caps, Meriva-SR Curcumin Phytosome 3 caps, Green Tea Extract 4 caps and Melatonin 20 mg at night. It's been quite an adjustment taking all of these but I strongly believe they are vital to my recovery. Also, my husband makes me Turkey Tail mushroom tea from the mushrooms he has foraged. It actually tastes o.k.! We have eaten organic/local for a long time but now I am focusing on eating (and juicing) a wide variety of fruits and vegetables and eating a lot more of it raw. I didn't get much exercise before my diagnosis and now I am walking 1/2 hour a day, and doing yoga once a week. I would like to incorporate more exercise like dancing into this mix. Stress was a major factor for me before BC. Now I am learning how to let things go. I would like to do meditation as well.

Since my cancer was found early....I am a stage 1ta, node negative, ep/pr +, hers2-, tumor size less than 5mm, clean/wide margins....I have felt that radiation might be too high a risk to take. My tumor was in my left breast so I am concerned about my heart. I'm concerned about secondary cancers down the road caused by the radiation. I'm concerned that radiation makes your lungs less pliable (not sure if that is the correct description) making symptoms from bronchitis more difficult to deal with. I'm concerned about pain and burns that do not go away after radiation. I have read about a lot of different side effects women have experienced from radiation. Of course, there are many women have come thru it with none or little side effects. Keep in mind, other causes from the radiation therapy may not appear until years down the road. Tamoxifen has many risks as well. I clearly understand that doing neither has it's risks as well.

My experience, so far, with the medical oncologist and radiation oncologist have been concerning. My first meeting with the medical oncologist three weeks ago was extremely positive....almost beyond belief. I walked into my appointment thinking that I might do the radiation and no Tamoxifen. This was based on the recommendation of my Naturapath. The first thing my medical oncologist said was "you will not die from breast cancer." And then "someday doctors may realize that they are over treating women with your early stage cancer." She went on to say that "you have the luxury of deciding what kind of treatment to pursue. If you had a higher stage cancer you would not have this luxury and I would automatically recommend radiation and tamoxifen." She went on to say I was doing all the right things and that she would feel comfortable with my choice. She did also ask me if I was feeling lucky, because there are no guarantees when it comes to cancer. Doesn't this conflict with the "you will not die from cancer?!" My husband was with me so he heard the same thing I heard during this appointment....I was so happy he was with me because I kept questioning exactly what she said. After that meeting I decided I was not going to do the radiation. Yesterday I had my second appointment with her to discuss my Oncotype DX test. After she explained it to me she said that is is all good news and that I should start radiation and Tamoxifen right away. I was in total shock and disbelief! It was like our first appointment never happened! I reminded her of our earlier conversation and she said she would never not recommend that I do radiation and Tamoxifen, or at least one of them. She used the 30% recurrence statistic if you don't do the radiation if you have had a lumpectomy. I questioned this statistic in regards to my own personal cancer. How is my risk for a reccurrence the same as a woman who has stage 3 cancer, drinks 3 glasses of alcohol a day, might be obese, eats processed and fast food and doesn't exercise. How can they lump us all together? The experience with the radiologist was not much better since she came up with no side effects except for some minor burning and discoloration.

This process of dealing with the medical industry has been very disheartening. There just don't seem to be any good answers. I am going to make appointments with other oncologists until I find one I think I can trust. Now I see the importance of having a couple of meetings with them. I had been such at peace with the decision to not do radiation and tamoxifen. The meeting yesterday really thru me for a loop. As most important things in life, this won't be an easy decision.

I would really like to see this thread kept going. It would be wonderful to continue hearing from other women who chose not to do radiation and why. Also, any studies that you know about supporting the decision not to do radiation would be fantastic. AlaskaGal, I had read both of those studies you mentioned. Very good information, although I often find it difficult to decipher the statistics/percentages that they include. Thank you for starting this thread! I applaud you! I think there needs to be more discussion along this line. Congratulations to you for making a decision you feel comfortable with!

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Alaska and Love animals, I have a very good friend who had an identical path report to me. The only difference was family history (I lost my sister to this). My friend opted for no treatment after her lumpectomy. She did her research and felt that the risks were too great for her personally to take. I applauded her decision (not knowing that 2 years later I would have to make my own choices) and she has had no recurrence. In the end we all have to decide what we feel is right for ourselves. My docs would have taken a much more "liberal" approach had I not had family history as well as some previous issue with the other breast. I do think this is being overtreated in many cases, and my BS would probably agree with that, but it's the choice we have right now.

I didn't do radiation or chemo, praying the surgeon got it all...My MO said my choice, free will.........

Thank you AlaskaGal, I have had 3 mammograms since being diagnosed and all show NED...I've taken Tamoxifen for over two years, but I stopped for about 8 months because I had a hip replacement and was worried about a blood clot. I started back up and no real side effects. I will continue for 3 more years. I really don't want to switch to Arimidex because I have osteopenia and Arimidex causes bone loss, where Tamoxifen helps your bones.

 I had a breast ultrasound to confirm cancer in left breast and I had my nodes removed same time I had my lumpectomy. 

Morning Loral, my point is if you are getting mammograms only since they found the cancer with ultrasound, they may be missing any new cancer? You said you are NED I just don't want you to get an unwelcome surprise later.

Marijen are you saying I should ask for a yearly ultrasound ...

Yes Loral, I think you should be getting better screening since you're a "survivor" and it has been three years since you were dx'd. This might be a good time to get a second opinion and see what someone new has to say about your case and your options for waiting and watching. I know I will not be satisfied with a mammogram once a year. I found the swollen node myself, way up high in my armpit and a mammogram would never have turned up that. But I didn't know that I was not being screened well. So in the short term they have taken care of my right side - maybe - I'm still waiting for the pathology report and the left side it's assumed is a benign lymph in my breast. That's not good enough for me and I'm going to do something about it soon. I already have another MO picked out. You have IDC which is invasive. An US, an MRI and Petscan should be done to look for mets? Did your doctor do that? It sounds like you're not even sure the surgeon "got it all". Makes me think your doctors aren't looking out for you, I'm sorry.

Oh well you didn't say you had ct scans and Mri .... since your surgery? I'm curious what does he check in your blood - is it cancer tests or metabolic and cbc? Mine doesn't want to do anything but a mammo in six months and she doesn't do blood tests. That's why I'm bothered.