I have felt deeply skeptical of radiation but it is highly recommended for me since I am just 37, though my oncotype recurrence score is low (12) and tumor grade is intermediate and tumor size 16 mm. (I am ER/PR+, node negative). My mom has ongoing complications after receiving radiation, carries an inhaler, and gets bronchitis frequently. I know imaging has improved since she was treated 20 years ago, and my anatomy is favorable for the treatment, but I can't shake the feeling that I would rather risk a tumor recurrence than know I will have scar tissue in my lungs. I need to decide this week and am having trouble with the decision. I am pursuing serious lifestyle changes and holistic treatments and feel very good about the changes I'm making, so I feel like I'm in a slightly different category in terms of overall health than people who may not believe in these treatments or have the ability/time/money to implement them.

I'm curious if anyone with complications would go back and do it differently if they knew they would have these complications? Also curious if there's anyone else out there who chose not to do it and how they feel about their decision.

I can understand why your mom's experience would make you nervous. If you are having trouble deciding, maybe you need more information from the radiation oncologist. Maybe ask for numbers about your chance of recurrence vs. your chance of lung damage. Also you could ask if doing radiation in the prone position would be an option for you. I'm glad I did radiation because I can tell myself that I did everything I could to prevent a recurrence. The radiation onc planned things very carefully to avoid collateral damage, and the beams were aimed very precisely. I was x-rayed every week to check that the positioning was still exact.

If you decide to do it, I think your healthy lifestyle will help you get through it well.

I did rads (on the left side) with no problems what-so-ever. With a lumpectomy, radiation is a must, and you do NOT want a recurrence!!!

ultimately you have to make the decision that you feel is best for you, but I can tell you that a recurrence is a big deal. I had a low oncotype, eat well exercise had a 1.9 cm node negative tumor, and it still came back. What saved me mentally was knowing I had done all I could the first time and just ended up on the wrong side of the statistics. I do see how you mom's situation would scare you. You are young and have a long life to live. I wish you well in whatever you decide. These decisions are not easy.

My mother also had radiation and had a heart attack years later and a terrible cough that was treated with steroids. Ten years after radiation she got pancreatic cancer. I'm supposed to start radiation soon, and I see my radiologist tomorrow. I really do not want to have radiation, and I have been looking into Proton therapy. I've talked to two facilities, one in San Diego and one in Seattle. They will be requesting my medical records before they can tell me if I'm a candidate for the treatment and how long the treatment will be. Some of the treatments are as short as 10 days, but others are for 5 weeks. The treatment is supposed to treat the cancer cells and minimize exposure to the ribs, heart and lungs. Has anyone heard anything good or bad about Proton therapy?

MaryDay, regarding proton therapy--I considered participating in a proton therapy trial, so I did a lot of research and talked to the radiation oncologist about it. Bottom line, as I understood it, was that protons are as effective as photons (traditional radiation), but proton therapy is a kind of partial breast radiation. So an important question to ask is whether you are a good candidate for partial, or if you should have whole breast radiation. It can still cause some problems to the treated area, but the treated area is smaller.

Well ladies, I decided not to do it and called my doctors today. I feel great about the decision and I know it is right for me. (BTW I don't know anything about proton therapy, and as far as prone position, I think my breasts are small enough that it would have been minimally invasive in any position.)

I've just become clear that I have a different way of thinking about cancer than many others, and that's ok. I have come to see a cancer diagnosis as a sign and symptom of a deeper imbalance and immune malfunction, and if that is not addressed, than the cancer may recur whether or not you zap and poison yourself. In many cases, zapping and poisoning actually make your immune malfunction even worse.

I was in relatively severe cycles of stress, insomnia, poor diet, lack of exercise and fatigue and trauma in the years previous to my diagnosis and I know that gave rise to conditions in which the tumor was able to grow to the size where I could feel it. I was starting to feel better and working on sleep issues in the last few months before my diagnosis, and when I was diagnosed I completely changed my lifestyle on a dime, quit my job, started eating 10 types of vegetables a day, exercising very regularly, and other things. My tumor was actually smaller when it was removed (16 mm) than it was during the first imaging and biopsies (20 mm) and I believe this was a result of 2.5 months of super health boosting!

Additionally, I have had trouble with abnormal paps and know that my immune system has been taxed fighting an aggressive cervical HPV infection for many years. Some research I saw suggests that when your body is struggling to fight infections or parasites, cancer gets the open door. Otherwise your immune system would take out the cancer cells! I will be working with doctors to address this infection more holistically and find ways to ensure my immune system is firing!

I have also started taking curcumin, green tea extract, and turkey tail mushroom supplements on advice from a few different naturopaths. I actually feel better than I have in years, though I would never tell anyone that taking supplements alone would cure cancer.

If you've got a hammer, everything looks like a nail, and I think chemo and radiation are the only hammers Western doctors have in their tool belt. That doesn't mean we need to use them!

AlaskaGal, I couldn't do radiation because my mother told me I was radiated as a child for some kind of spinal growth. The radiologist said it had probably been long enough that it wouldn't be the same as radiating the same area twice, but I was not willing to risk it. Once we had an open discussion, with me saying I didn't want to take the chance, he actually came out and said he was okay with me not having radiation, said everybody doesn't need it but it is standard of care. Said with my tumor size, margins, no node involvement, position (2:00 on left breast and towards the side), I would probably be fine without the radiation. I had negative receptors and very slightly HER2 positive, so I did have to go to chemo land, but will always wonder if I should have done it.

Seachain, I am in total agreement with you about the cancer stem cells vs. the daughter cells. I haven't been able to find any evidence anywhere that chemo and radiation kill stem cells. So to me, either my immune system gets strong enough to deal with the stem cells, or it doesn't. Interestingly, I have a dog with skin hemangiosarcoma (looks like large blood blisters on the skin), and we have to get his cut off all the time. Probably won't kill him, but I hate that he has to go through laser and surgery. But sometimes, for whatever reason, his system will attack them and they turn to a powdery substance and disappear. We asked the surgeon and he said that means at that point in time his immune system was strong enough to destroy the cancer cells. Boy, I wish I could figure out what occurs at that point in time. My point in saying that is even a traditional veterinary surgeon said if the immune system is functioning properly, the body can take out cancer cells. So now that I am done with treatment I am focusing on exercise and immune system building.

Plus, there does appear to be that statistic out there that says even with chemo and radiation, 30% of women develop metastatic cancer. My surgeon told me that my chances of no metastasis was about 70-75% without chemo and radiation, so now I am left wondering what chemo did for that statistic if 30% seem to recur anyways.

Again, not saying what anybody else should do. I did the chemo, couldn't do radiation, and I would never tell somebody else what to do or not do. But to me it seems like even with conventional standard of care treatment, it is still a crap shoot. I will say I am glad I did not have radiation, because the posts I see about long term consequences seem to occur 10 years after being radiated, not within the first 3-5 years.

AlaskaGal - Congratulations on making a very tough decision. When I was planning to do rads, and started to learn more about it, I was pretty shocked by the after effects that no one ever seems to tell you about.

I'm sorry that you didn't get information about long term consequences. That's sad and unacceptable. My MO and RO were both detailed and thorough so that I could make an informed decision about each treatment.

Alaskagal - two amazing posts, thankyou. A few things. I'm under the impression I can't do accelerated radiation because I have at least one or two malignant axillary nodes. Axillary dissection done yesterday. Do you know about the that? Do you have a link on the three week less likely to die from radiation and the true statistics on how much radiation improves chances against new tumors.

Please go to livertox.com. Green tea extract can cause liver failure. Please check on that or do a search I've seen it somewhere else. I tried it for a week and my liver enzymes jumped up, but it could have been the scans and the dyes.

Finally are you not doing surgery for your IDC? Thanks for your answers. I'm dying to know.

Ok, here's two studies I found helpful in considering radiation. You have to read them closely and critically to see the stats they are less into highlighting. You also have to bear in mind these come from a medical establishment and process that often receives a lot of funding and influence from radiation/mammography/chemo industries, so read with a grain of salt and remember stats can be manipulated!

For the second article, I was quite surprised when I read it because it was the exact opposite of what my RO told me. She said I would have less side effects with the 6 week version! The article shows the differences are minimal but there are less side effects with the 3 weeks. When I asked her about it, she said "conventional dogma" is that 6 weeks would confer less side effects but there is now data that contradicts this thinking. Hmm. Awkward silence in the exam room. I think the hospital gets twice as money with the 6 week version and that's why Americans have not yet adopted the 3 week as standard of care as in the UK and Canada.

Thanks Marijen for note on liver toxicity and green tea. I'll check it out because I know that liver function really has to be optimum for processing excess estrogen for those of us with ER+ tumors. And yes, I did a lumpectomy, with a lateral crescent incision, to remove the tumor. Though after all the research I've now done, I almost wish I would have left it in a little longer because as I mentioned before it shrunk 3 mm between diagnosis and surgery, and I would have liked to see if that trend continued or if it was just measurement errors, as the doctors said.

Also, you should get a second opinion on your "malignant" lymph nodes. Read your report and see how bad it was. When I got a second opinion one of the hospitals said I had a few cancer cells floating in my lymph nodes and this was cause for aggressive treatment, and the other did not detect any and declared me fully node negative. My feeling after talking to both groups of doctors was that the first hospital was being a little too exact and trying to get me freaked out about cancer spreading so I would do harsher treatments. The second hospital put it in perspective and really explained exactly how my slides looked, the system they use for categorizing you, etc. They noted you can probably find a cancer cell floating in your big toe if you look hard enough, but you're not going to cut that off.

Effect of radiotherapy after breast-conserving surgery on 10-year recurrence and 15-year breast cancer death: meta-analysis of individual patient data for 10 801 women in 17 randomised trials

http://www.thelancet.com/journals/lancet/article/P...(11)61629-2/abstract

The UK Standardisation of Breast Radiotherapy (START) trials of radiotherapy hypofractionation for treatment of early breast cancer: 10-year follow-up results of two randomised controlled trials

http://www.thelancet.com/journals/lanonc/article/P...(13)70386-3/abstract

Good morning AlaskaGal, the links you've given show an error - do you have a subscription to Lancet? Will try harder to get in there to read. Thanks very much.

On the shrinkage, my IDC area shrunk from 9mm to 4mm, but originally they said it was 1.8cm. So I questioned the doctor which took a week and a half to get an answer. He was out of town and his nurse went on vacation without telling me. I went around the clock with the oncology dept. The nurse said she re-measured using the same plane from the first ultrasound and the second ultrasound six months later. There was also an MRI that said 1.8cm, and the mammography and the pathology report came in at 1.6cm six months ago. The breast center RO explained how she double checked using the same plane and that the 9mm to 4mm shrinkage was correct. When the surgeon returned he said the imaging studies are not that accurate and the only real way to know the size is in the pathology study after the area is removed (about one marshmallow he said). I see the dent this morning, yesterday too swollen. Just wanted to point out there may or may not have been shrinkage in the first place...

I thought my crescent incision was from the axillary lymph node dissection because there is no other incision under my arm. There is also a one inch or more incision in my right breast where I assume the lumpectomy took place, that is where it is dissected. I won't be knowing anything for sure until the pathology report or my follow-up appointment with the surgeon.

Interesting about your RO pushing the six week tx, it doesn't surprise me at all. My surgery is already posted on my bill it is $22,000. And there will probably be more you know from the other doctors attending. You are better off than me, you don't have Grade 3, stage 3A. My surgery was Wednesday so too late for a second opinion but I can still get a second on the Rads and the Pathology report. The first one is not that detailed, I would have expected more. I wonder if it is dumbed down for the patient.

I'm still drinking green tea and I think it makes a difference in my overall health, just not the extract. I even complained to Ty Bollinger about that in a survey he sent me. But Truth about cancer is another story. In a nutshell I think it leaves too much out, and that is irresponsible to me.

From your original post you wondered if anyone was told of the complications. In a very vague way I was told about the heart, but my stuff is on the right side, I was told about the clavical and lymphedema, I was told about brittle ribs, I already have osteoporosis. Secondary cancer, the skin issues. And that if I agreed to do it which I did way back in April that I would have to do the whole program. I don't think so, what will they do? Come to my house : ) I'm still thinking it over. I think my family wants me to be aggressive. 70% less recurrence sounds good to me. Have to wait on the surgery findings too.

Let's keep talking. Did they take a lymph node or two to see if your IDC has spread?

Hi All, and welcome to BCO LiDu.

You may find this article helpful in making your decision

When Is Radiation Appropriate?

We're thinking of you!

Brookside VT thanks for sharing - so glad to hear that you are free of side effects so far. I didn't totally understand your statement about mitotic rate and your choice to do radiation - could you explain?

As far as tumor shrinkage, I had to do two biopsies because of a lab error, so my tumor was measured 3 times before surgery for a total of four times. Each time I watched them do the measurement on the ultrasound screen, and each time it was slightly smaller. Could definitely be a measurement/machine discrepancy, I totally get that. I was just saying I had a hunch it was due to my massive lifestyle shift and I kind of wish I would have waited another month or two to see if that was the case.