Anyone else skip radiation? Even with micrometastisis?

Hi Nthrutheoutdoor, and welcome to Breastcancer.org!

We're sure you'll get some great responses here soon from other members who have weighed this decision as well. You've joined a great space for support, advice, and information and we're happy to have you!

Please let us know if you need anything at all while you navigate the boards. We look forward to hearing more from you soon.

--The Mods

Rads will reduce the risk of a local recurrence. The micro-mets is a factor for a distant recurrence and will probably increase the likelihood that your MO will recommend chemo. My understanding is that there haven't been many studies of patients doing lumpectomy without rads, so it may be difficult to get data on that. Each person needs to decide how much and which treatment is right for them. I know a few people who chose a Mx to avoid rads. I chose lumpectomy + rads.

I am just finishing radiation after a mastectomy - left largish tumour and one node positive 3.5mm.

I too was hoping to skip rads - I ended up with two opinions but once it was on the table ...I have a seven year old.

My thought would be to find an RO you click with and have a good long talk - some of the fear might be ironed out a little.

Breatholding and Mepitel were my friends

Hi Nthrutheoutdoor,

My original diagnosis I had 3 of 5 nodes with micromets and didn't qualify for radiation here in Canada at the time. I wish I would have fought for them harder. Now just over 4 years post treatment I am back here again with a 3.8 cm lymph node in the axilla, Mets in my supraclavicular region as well as multiple nodules in both lungs. Would things have been different with radiation? Who knows, but it certainly didn't help not having them. Best of luck to you in whatever you choose.

My MO says Ki67 isn't the best indicator for chances of reccurence. I think if you think you'd kick yourself should you progress for not doing rads then do it.

You have to be comfortable in your decisions and not look back. I'm kind of doing this with my decision to stop Femara (letrozole) after 5 weeks and going back to Tamox. I'm 52 and in menopause so AIs should provide extra protection. What sucks is with all of this, it's a should. Why do some progress and some don't anywhere from those who do everything they're told to those who don't. That's why there's no cure imo.

Lilo

Actually, my ps wouldn't do the final implant sx until after rads. He didn't want to chance the rads damaging perm implants. TEs are not a concern like that. TEs are coming out anyway. Also they are thicker material than perm implants. You'll feel the difference once you have your ex sx. My ps said 6 mo wait after rads for the exchange sx, monitoring my skin 3 times in between.

I found it much easier than chemo. You don't feel a thing and it's quick once you get marked up and after your first session (it's about 20 min, mostly getting the positioning right). The % of people that get noteable se for the heart and lung(s) isn't high. It's a risk that must be disclosed. Just like the meds you take have everything under the sun that could happen on it because 1 person reported it. The only people I've read not doing rads seem to be DCIS with no node involvement and very small tumor. My mom did rads because her tumor was 2.5 cm. I'm glad she did. She's 72. Because of her age though they did I think it was 20 rounds whereas for me at 52 and with my #s I had 28 with the bolus on all except the last 2. I will say though I did get burned and who knows if anything is damaged, but I've been out since 6/26/16 and I feel fine. Just skin is discolored. It's also tighter on my rad left side than on my right so with the perm implants, the right one hangs a bit lower and wider. I notice it. But it's a federal law that insurance must cover any revisions cosmetic or otherwise if you have the breast cancer dx. So I will be making a sx appt for summer to get my right side adjusted to match my rad left.

As for why I switched back and forth... the se's about killed me on letro. I was ready to toss in the towel after 2 weeks but thought give it a month. I just posted this in the Femara thread:

"I quit letro starting last Fri and gave myself till last night for it to get out of my system when I took a tamox pill. I feel much better not being on letro. I expect to get the same se's I had on tamox before but at least I didn't feel like utter shit and so many aches and pains. My head fuzziness was probably the worse, coupled with being sleepy feeling dopey all the time. But then for some they don't have se's or nothing bothersome. My pcp was on Femara for her bc dx'd in 2004 and she felt ok on it. I gave it a try. I'm relieved to feel better after stopping it. Hopefully my hair will stop shedding so much. On tamox it wasn't coming out in droves."

So you can always try it and see if you're not one of those who can actually tolerate it ok, or maybe have no se's like my pcp. If the se's get so bad like they did for me, you could try one of the other 2 (Aromasin or Arimidex) instead and see or switch manufacturers of the same med. I think most people do the switching of manufacturer and med before tossing the AI all together. My MO didn't even say that to me. She could tell by my look that I was in dire straits. But I'm at peace and feel better. If I progress then I'll remind myself I very well could have even on an AI as it's all a crap shoot since we are all different even with the same #s.

Artista928...thank you so very much for all the information. Everything you said makes perfect sense and actually has helped me feel better with making a decision. My PS has assured me several times that his job is to make me look good after treatment and my concern is to be cancer free. I am definitely not look forward to the hormone se but I will just have to deal with those when the time comes and if necessary try out different ones to find what works best for me..

Nthrutheoutdoor...I get so confused too. Especially now that some time has gone by. I'm pretty sure they can still do an oncotype test. I'm going to ask my MO tomorrow when I see him and just let him know that it really will help me with the rad decision. That way I'm not waiting for the results later when it is time to start rads. I also have a follow up with my BS on Monday and will talk to her. I think sometimes we can fill our mind with too much information and it makes decision making harder.

Thank you both for your input. I really appreciate it and will check back in after I talk to my drs.

my MO said doing radiation is the best week investment I can make in my life right now...I am getting a bmx and have no lymph nodes involved, he said newer studies show the better the outcomes long term on women who have radiation over just chemo...

I really didn't want rads...but once he explained it all to me, as well at the radiologist I felt much better about doing it...and i have a one hour trip each way to get it ugh!

No cancer center in my area had Breath Hold Radiation for left breast in 2011. When my sister was diagnosed last year, also left breast, she had Breath Hold Radiation to prevent radiation from damaging her heart....here is more info.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4364809/

BG46TN, could you explain, "best week investment"? Is there a word missing?

It was a bit challenging to find someone who does prone position radiation without driving an hour to the downtown cancer centers, but I was lucky enough to find someone 35 minutes away (assuming my blasted encapsulated shoulder will cooperate...mapping / tattooing is upcoming). If you're not familiar with prone positioning, you lie on your stomach on a special table with an opening for your breast rather than your breast tissue spreading across your chest wall so it's a great option for buxom women whose bosoms have lost the battle with gravity. With a left-side tumor, trouble with shortness of breath since my 3rd AC treatment, and very large breasts (F/G), I figured prone would offer the best protection for my heart while blasting those cancer cooties. Luckily, my three nodes tested negative so I don't know if prone positioning is an option for women having their lymph nodes radiated. Similarly, I'll be able to have the shorter "Canadian" protocol while I think the traditional 6 week protocol is recommended for those with positive nodes. Good luck, Nthrutheoutdoor!

Lyn

hi, I had same diagnosis and same fears about radiation, so I skipped it, and still wonder if any cells escaped....I am 80 tho, and so radiation at my age not as effective.....Also, I could not physically make it to hospital daily for 6weeks....Too tired. But as young as you are I would do it for peace of mind.

My radiation was on the right side, targeted to just the tumor cavity, and 16 sessions (hypo-fractionated, therefore all “boosts”). I too have very large breasts (H/I on the right, I/J on the left) and preferred prone radiation but my hospital didn’t have the necessary equipment (and I don’t think any of the other hospitals in its system did, either).

Why do radiation if you’ve had a BMX and chemo? Because, as said earlier, there is still some tissue left over (especially if the surgery was skin-sparing or otherwise in contemplation of reconstruction) even after breast removal. And chemo, while systemic (body-wide), kills only rapidly-dividing (i.e., fast-growing) cells such as epithelials (mucous membranes, digestive system linings), hair follicles, bone marrow, etc, and of course rapidly-dividing cancer cells. It won’t touch the slowest-growing (“indolent”) tumor cells which can lie dormant for years or even decades before (and even after) migrating to bones or organs. When they "wake up" outside the breast & lymph nodes and are detectable on imaging or via symptoms, that’s metastasis. Any of these “indolent” tumor cells possibly left behind in the tissues remaining after mastectomy need to be mopped up before they can migrate &/or wake up—and radiation destroys them.

The Canadian protocol of 16 hypofractionated external doses aimed at the tumor cavity is usually limited to those over age 60 whose tumors were Stage IA and Luminal A-type (hormone-receptor+, HER2-, grade 1 or 2) and in a fortuitous location (mine was at 10:00, “high & outside” in baseball-speak).

Nthroughtheoutdoor, you wouldn’t happen to own a raspberry beret, now, would you? ;-)