Radiation—yes or no

aosh

With radiation, I will have a 2% chance of no recurring cancer within 10 years.

Without radiation, my chances are 10%. I’m considering not doing radiation because of the side effects.

Has anyone decided against radiation?

LivinLife

Our situations are different though yes, I chose not to undergo radiation. I had DCIS - Grade 3 with expansive comedo necrosis. they expected to find invasion upon final pathology after surgery.... this was not the case. I have scleroderma so was unable to undergo radiation. As a result I had a mastectomy vs. lumpectomy, actually bilateral mastectomy for a myriad of reasons... My surgeon told me my recurrence chances are 5% as is. I chose not to go on an AI as well - much bigger risk of all the toxicity with little to no benefit (ER+ 2%).

aosh

Thank you for your response! I wish nothing but the best for you in your journey! I am interested that you chose not to do an AI--I was considering the same, but yesterday I started Tamoxifen. I am a bit concerned as there are certain medications (2 of which I take) that interfere with its effectiveness. My onco is awaiting my bone density tests next week before she anticipates possibly changing the prescription to an AI. My previous BD test identified osteoporosis in my forearm (spine/lumber .1), and I haven't been taking anything for it (due to CKD) so I don't see BD results changing for the better. (Also concerned about insurance covering the test since it has been less than 2 years since the last one, but that's another story.)

edj3

I'll offer my experience as a data point for you, although I chose differently.

I knew there was a strong possibility I would not take tamoxifen (dx'd w/ osteoporosis so the AIs were not an option). So because of that, I did opt for radiation to reduce my chances of a stray cancer cell taking up residence elsewhere.

For what it's worth, I tried the tamoxifen. I'm an avid, competitive runner and within 3 weeks of starting the drug, I had issues with my heart rate spiking dangerously high early in my runs. That's not normal for me, I've tracked that data for years. So I stopped and let my MO know that.

Good luck making the best decision for you.

Beesie

aosh,

You had a lumpectomy, correct? And you had invasive cancer. So you have to make your decision based on those factors. LivinLife explained her reasons for her decisions, but her situation was completely different than yours - she had DCIS, which is a pre-invasive condition that does not present the risk of systemic spread, unlike the invasive cancer that you had, and she had a bilateral mastectomy, which significantly reduces the risk of a localized recurrence. Radiation is very rarely recommended after a MX for DCIS, and NCCN Treatment Protocols do not recommend AIs or Tamoxifen for those who've had a BMX for DCIS. So LivinLife's decisions were consistent with accepted treatment protocols. On the other hand, if you pass on radiation and Tamoxifen, both those decisions will be against accepted treatment protocols.

That's not to say that you shouldn't weigh the pros and cons of radiation and Tamoxifen/AIs and decide if they are right for you, but the decision needs to be made in the context of your diagnosis, not what someone else with a different diagnosis did.

Radiation addresses local recurrence risk, i.e. a recurrence in the breast area. Most studies have shown that radiation reduces recurrence risk by approx. 50%, so your doctor telling you that your risk will go from 10% down to 2% seems odd. Which doctor told you this - your surgeon, your Medical Oncologist, or your Radiation Oncologist? The recurrence risk that you face without rads depends on the size of the tumor, the aggressiveness of the tumor, and the size of the surgical margins. I see that your cancer was grade 2. How large was the tumor, and how wide were the surgical margins? Those would be the factors that would play into my decision on rads.

As for Tamoxifen/AIs, these treatments reduce local recurrence risk but more importantly, they are prescribed to reduce the risk of a distant recurrence. Your cancer was ER+/PR+/HER2-. Was an Oncotype test done to determine your distant/metastatic recurrence risk? With an Oncotype score, you can estimate how much risk reduction benefit you will get from Tamoxifen/AIs, and from there, decide if the benefit is worth it to you.

Ingerp

Most women seem to come through radiation just fine. The M-F appointments are a bit of a drag and there will be some skin impacts but overall it's not a terribly big deal. For me absolutely worth the reduction in probability of recurrence.

aosh

Thank you for your response, Beesie. I will be 80 in October so hope for maybe10 more good years of life. Yes, did have a lumpectomy. The grade is 1, not 2, as I erroneously stated. My ONCO score was zero (so no chemo) and that report shows 'distant recurrence risk at 9 years with AI or Tam alone is 3%'. Size of tumor was 15 x 13 mm. Surgeon took wide margins which were clear and 2 lymph nodes also clear. It was my Rad onco who told me that if I have a 5-day radiation treatment (fewer days, higher doses), there was only a 2% chance I would have recurring breast cancer within 10 years. He also stated that if I did not have radiation, there would be a 10% chance of recurring cancer. He pointed out that meant a 90% chance it would not recur. His statements, along with my onco score indicating only a 3% chance of a distant recurrence with AI/Tam, are leading me towards choosing no radiation (along with its risk of side effects), but will take tamoxifen (or an AI depending on bone density test--last one 5/19 showed osteoporosis in forearm with spine/lumbar .1--curious how spine is good, but forearm not. Have not been taking anything for osteoporosis due to CKD).

edj3

Yeah I don't know what I would have done if I were 80 at the time of diagnosis. I wasn't, I was 59 so my treatment decision did include the radiation.

Good luck, for real.

Beesie

aosh, ah, that's a lot of very relevant information.

With a 0 Oncotype score, the 3% distant recurrence risk assumes that you would be taking an AI or Tamoxifen. These meds reduce metastatic risk by approx. 1/3, which means your metastatic risk if you don't take an AI or Tamoxifen will be ~4%. But these meds also reduce local recurrence risk by about 50%, so taking Tamoxifen could bring your 10% risk down to about 5%. That could be worth it, particularly if you skip rads.

As an FYI, my mother was diagnosed at 80. She had a grade 1 invasive T1b tumor (a little smaller than yours) and clear nodes. Margins weren't great so she had a re-excision surgery, which delivered very wide margins. At that point, she decided to pass on rads with her MO and RO's approval, and she decided to pass on anti-hormone therapy. She's 96 now, with no recurrence or any breast problems since.

Certainly at your age the risk of side effects from any treatment is higher than it would be for someone younger, so that needs to be factored into the decision. Quality of life was the reason for my mother passing on both treatments, plus of course the fact that she had the favorable pathology. But for her, the re-excision surgery was critical.

aosh

Do I understand from your message, 'Tried the Tamoxifen, no thanks", that you stopped taking it? Did you take something similar or an AI then?

aosh

Beesie, it sounds as if you have a medical background? Really appreciate your quick responses! I am so happy your mother had such a positive response to taking no Tam/AI plus no radiation! Your post has in part helped me to almost affirm my decision not to do radiation and risk side effects. Not sure I understand the -4%--wouldn't that be very, very good odds?And not taking Tamoxifen (or similar)? This is something I'm still wrestling with (only on Day 2 of Tam). I would hope that perhaps my situation would warrant not taking them, but the ONCO report indicated I should. May run this by my oncologist.

By the way, does anyone get the feeling they're considered not being a 'cooperative patient' when they call or message their providers? My calls/messages are sometimes returned, sometimes not. I want to be a vigilant advocate for myself, but feel I risk a good relationship with providers when I call/message with questions.

Your Edmund Burke quote is right on!

Beesie

Nope, no medical background but I've been hanging around here for a long time so I've picked things up.

About your metastatic risk... what I was saying is that it would be approximately ("~") 4%, if you don't take Tamoxifen or an AI, based on your saying that your Oncotype score was 0 and your Oncotype metastatic recurrence risk at 9 years with AI or Tam alone is 3%. I just did some backwards math although I averaged, and more precisely from a mathematical standpoint your risk would be 4.5%. But all these figures are estimates anyway - none of this is that precise.

Here's the math, which basically builds up from the 3% to add back in the 1/3rd risk reduction benefit that you'll get from an AI or Tamoxifen:

• Your 9 year risk with an AI or Tamox is 3%.
• AIs and Tamox generally reduce metastatic risk by approximately one third, i.e. 33%.
• 3% is a 1/3rd reduction off 4.5%. In other words, if your risk level after surgery alone is 4.5%, and then you take an AI or Tamox, it would reduce your risk by 1.5% (1.5% being one third of 4.5%). 4.5% minus 1.5% equals 3%. So that puts us back to the 3% risk level you've been told, if you were to take an AI or Tamoxifen.

.

Another way to assess your risk with and without Tamoxifen or an AI is to input your information into either CancerMath or PREDICT. With both models, you can first see your metastatic risk estimate without additional treatment, and then you can click the box for 5 years Tamoxifen or an AI, and you can see how much of a difference it makes. CancerMath presents 15 year results; PREDICT gives you the option of 5, 10 or 15 year results. With PREDICT, one of the inputs is Ki-67, which comes from the pathology report but is information you may not have. However with a grade 1 cancer, being PR+, and with an Oncotype score of 0, it's safe to input "negative" for Ki-67. To make it easy to interpret the results, with CancerMath I'd suggest that you use Pictogram as your 'Display As' option (drop-down menu near the top on the right side of the page) and with PREDICT, where it shows RESULTS (bottom right), I'd recommend Icons.

http://www.lifemath.net/cancer/breastcancer/therapy/index.php

https://breast.predict.nhs.uk/tool

edj3

aosh, that's right. I tried the tamoxifen based on my MO's recommendation. I'm not taking it, nor any AI (can't b/c of osteoporosis). This was a choice I made after a lot of thought, reading, etc. and it's the right one for me.

AliceBastable

I had radiation and had a little pinkness on my collarbone and a tiny bit of dry skin near the incision. I was 68. My mother had the same amount of sessions when she was 85, drove herself to another town and back every single day for treatment and did just fine. She lived to 97 and died from other causes.

MinusTwo

I had radiation at age 70. Lots of fatigue but no other problems.

Only my thoughts, but it sounds from reading here that radiation often causes far fewer "quality of life" issues than tamox or some of the Als.

LivinLife

I hear you really talking about quality of life since you mentioned your age and the other percentages... That makes sense to me for sure though again you have to make the decision you are most comfortable. If you hadn't just posted this I would have ditto'd everything Beesie said - well, I still do though you provided additional information about YOUR situation and what is making sense to YOU.... really important!!! You got a good discussion going for sure!

RatherBeSailing

Aosh, there has been a lot of research in recent years about the value of radiation for patients over the age of 70 with early breast cancer, with a trend towards skipping it.

Here are some links:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC72396...

https://labblog.uofmhealth.org/industry-dx/some-breast-cancer-patients-dont-need-radiation-why-are-they-still-getting-it

Of course, it all comes down to an individual's comfort with risk. But yours seems low, and radiation does have side effects.

Beesie's stats and interpretation are terrific. But, yes, be persistent - go back and get answers from your RO until you are comfortable you have the info you need. Or you might also check back with your oncologist or surgeon to help you put it all in perspective.

Wishing you all the best.

aosh

AliceBastable, happy to hear that the radiation treatments worked out well for you and your mom!

aosh

RatherBeSailing--Thank you so much for the links! That will be my homework this evening!

aosh

LivinLife, so happy I found this organization at such a critical time for me! And thanks to everyone for their contributions to the discussion!

aosh

Minus Two--I agree--the side effects of Tamoxifen/AI are a little scary. Seems like some are experiencing them more than others?

Are there some side effects that absolutely WILL occur, i.e. hot flashes, mood swings) and others that may not occur?

aosh

Beesie, I see you use the term 'metastatic cancer'. I thought metastasis is when the cancer spreads to other organs? Does radiation prevent that possible spread or does it only eliminate the chance of one particular cancer recurring in the same breast? I have so much to learn! I will certainly be checking out PREDICT and CancerMath, thanks for the heads-up!

Another thing that has surprised me--it appears one's unique cancer type does not play a role in the treatment plan? When I asked the Rad Onco if he was taking into consideration of my particular cancer, I recall him saying that with radiation, breast cancer is breast cancer.

I was diagnosed with encapsulated papillary carcinoma with invasion (Beesie, you mentioned 'invasion', what clued you in?); it is a rare cancer that only occurs in 1% of the breast cancers recorded. This causes me to wonder if it is so rare, what are the chances of it recurring again?

Thanks to the audience for allowing me to go on and on! The diagnosis hit me like the proverbial 'ton of bricks', but in my case I've been really lucky and blessed so far--successful surgery, great onco score, etc. By the way, have any of the rest of you been told you could get the radiation treatments in only 5 days as compared to the usual 15 or 20? This is an apparently new study that was applied to women over 70 who have stage 1 cancer and are ER+ and HER2 negative if I understand it correctly.

Harley07

aosh - welcome and thank you for starting such a good discussion. Last week I completed 5 accelerated partial breast radiation treatments. I'm 63. Please keep in mind that my diagnosis, while similar to yours, is for plain old IDC rather than your rare cancer. I had very few side effects - just a little darkening of the skin in the area that was radiated and some occasional discomfort from clothes rubbing on the area. Please keep us updated as you move thru the BC process.

Beesie

aosh, your signature line says "IDC: Papillary". That's an invasive cancer. DCIS is the only non-invasive cancer; LCIS is similar but is not considered to be a true cancer (and by some accounts, neither is DCIS, but that's controversial).

The fact that you had a rare cancer doesn't determine or influence your recurrence risk, other than the fact that you have a non-aggressive subtype, and that's already built into the recurrence figures you've been given. You've been diagnosed with this cancer, so as with any cancer, you could develop a recurrence. Recurrence is caused by rogue cells that remain after surgery - after a while, those cells might start to grow again and the cancer turns up again. So a recurrence simply means that the original cancer has come back.

There are two types of recurrence. First is a localized recurrence, in the breast, caused by cancer cells that were left behind in the breast after surgery. Radiation reduces this risk by approximately 50%. Second is a distant or metastatic recurrence, which is when breast cancer cells develop in another part of the body, be it the bones or liver or lungs. Usually the seeds of a metastatic recurrence are shown well before the patient even knows she has breast cancer - most breast cancers are in the breast for several years before they become large enough to be detected by screening and that's plenty of time for just a few of those cancer cells to slip out into the body, whether through the lymphatic system or the bloodstream. Because metastatic recurrences occur in the body beyond the breast, radiation does not reduce metastatic recurrence risk. Tamoxifen and AIs reduce both local recurrence risk and metastatic recurrence risk.

Based on the information you've provided, with your diagnosis you have a local recurrence risk of 10% (after surgery alone, prior to rads) and you have a distant/metastatic recurrence risk of 3% (assuming you take Tamoxifen or an AI). Those are two entirely separate risks.

Hope that all makes sense!

Beaverntx

aosh, I had radiation at age 77 and can honestly say the radiation and it's side/after effects have been much easier than the ones with Tamoxifen (chosen because I have long standing osteopenia). That said, we are each unique and you need to make the decision based on what you are most comfortable with. Your side effects from Tamoxifen or an AI could well be very different from mine. What I miss the most is being free from brain fog that comes and goes but never goes completely.

aosh

Beesie, thanks again for a very informative post! I'm learning lots from you!

I'm still curious about the two risks you mention--would radiation impact both?

aosh

Beaverntx, thanks for your post. Brain fog? What is that all about?

aosh

Harley07, you are the first one I've 'talked to' that has experienced the 5-day treatment! Happy to hear you were able to deal with the side effects! If I could be guaranteed of that kind of outcome, I wouldn't be hesitating about radiation, but since we are all different with different circumstances, the outcome is hard to predict. I will keep you posted, thanks!

Beaverntx

aosh, brain fog is a not uncommon side effect of Tamoxifen. For me it is knowing that my thought processes have slowed down and I have to really concentrate when working on a detailed task, better some days than others.

aosh

Beesie, went to CancerMath and PREDICT sites. While I don't understand all of it, it seems to me that Tamoxifen isn't going to have that much of an impact?

Beesie

aosh, radiation does not reduce metastatic risk, only local recurrence risk.

As for the impact of Tamoxifen, Tamoxifen reduces metastatic risk by 1/3rd. Because your metastatic risk is so low, a 1/3 risk reduction is also going to be low. Tamoxifen can't reduce risk that you don't have. To my earlier post, based on your Oncotype score, your metastatic risk reduction benefit will be 1.5%. But as I said in my other post, Tamoxifen also reduces local recurrence risk; this is a separate additional benefit.