radiation therapy

burma · January 2012

Surgery 3 weeks ago removed 2.5in/4.4mmbreast DCIS, high grade/necrotic, clean margins. Have read much about negative effects to body of radiation. However, radiolgy oncologist believes I should proceed with 5-6 week course to prevent possible metastisis.

Have autoimmune Hashimoto's thyroiditis (low thyroid) which leads to other autoimmune diseases and already have 2 rare form Hurtle cell cancers in thyroid which we ultrasound yearly to verify low growth rate.

Would appreciate hearing from those of you who have both proceeded with the radiation and those who chose not to. Your reasons in both instances very much appreciated. Must make decision soon. Today is 1/26/12

Jodycat · January 2012

I cannot speak to thyroid involvement. I had rads on the Canadian schedule. More intense, less time. It was just fine. No side effects worth spending time on.

ma111 · January 2012

I have thyroid nodules and psoriasis. I did the radiation because of the reduced risk and to kill some left over spots that could not be reached during surgery. So far, the radiation area is clean. Further mets have been outside of the radiation area for me.

burma · January 2012

Ma111

Thank you so very much for taking time to let me know that you had positive results from your radiation.

Am very torn between doing/no doing. Am Grade 3, DCIS 0, 4.4cm.. But at 73 and being able to do as I please, life is good and without a crystal ball indicating I won't have a bad reaction am just hesitant.

Am delighted it worked so well for you, MaIII and that is duly noted. Trust you are feeling just fine

and life is good.

Sincerely, Burma

burma · January 2012

Jodycat,

Thank you so much for taking time to respond. Am most hesitant to do the radiation, but your information is most encouraging. I do need a crystal ball, desparately!

Am 73, Stage 0 DCIS, Grade 3, 4.4cm. My health is good but am tired often from the autoimmune thyroid, so fatigue which is a general side-effect isn't an issue. It is the other issues I hear about that concern me.

Am delighted you had no difficulties with it and that helps in my decision process.

Trust you are feeling great and life is good for you, Jodycat.

Sincerely, Burma

ma111 · January 2012

Burma,

Make another appointment with your radiation oncologists and let her/him know your concerns. They will know better then any of us, what the likely hood would be of you having a bad reaction.

SJW1 · January 2012

Burma,

To make an informed decision, you need to know what your risk of recurrence is with and without RADS. If your risk is relatively high, the 50 percent risk reduction radiation provides might outweigh the harms of radiation. If your risk is only 4 percent like mine was, you might decide a 2 percent reduction isn't worth it.

One way to figure this out is to use the Van Nuys Prognostic Index. When I was diagnosed with DCIS in 2007, I consulted with Dr. Michael Lagios, a pathologist and DCIS expert who has a consulting service that anyone can use. He reviews your pathology and calculates your risk based on the Van Nuys. Insurance usually will pay for this as a 2nd pathology opinion.

Another way to calculate risk with and without rads is the new Oncotype DX for DCIS that just came out in December. This is still quite pricey at $4000 however and I am not sure if insurance will cover this.

This is a very personal decision, but knowing your risk might make it easier to decide.

Please feel free to PM me if you have any questions.

You can also check out my website: http://sites.google.com/site/dciswithoutrads/home

Best,

Sandie

burma · January 2012

'Afternoon, Swalthers,

Appreciated the information about Dr. Lagios. Before and after surgery on the Van Nuys am "9" which is borderline as to "have or have not". Believe my RO indicated 38% risk involved in a return and another dr. friend, indicated that must remember might not return to breast but metastisize, elsewhere.

Am to see a Med Onc on Wednesday this week and hear her opinions. However, really believe that with the damages I have learned about, would feel better with "letting things be" and foregoing other issues from radiation. (Heart, lung, burns, tireds, etc.)

Feel settled now, although didn't when I wrote my post. My head says, "Don't do this." And so it is. Will need to be hypervigilent with my fabulous Internist who insisted upon the mammo that found the microcalcifcations, ortherwise would have not had one. She saved my life! And my tremendous surgeon will continue to be seeing me.

Left all my materials out in the car so do not know about the ER and PR aspects,

Thank you so very much for your response and do hope that you conntinue doing very well.

Will also go to your webside. Seems like a great idea to have one!

Sincerely, Burma (Carol)

burma · January 2012

Hello, ma111,

Thank you for the additional advcse. The RO said she had no crystal ball to indicate how I would respond to rads and also was somewhat impatient when I explained my reasons for concern which are from valid sources.

She made appointment for me to see a Med Onc this week to learn more about rads. Appreciate that. The more info the better, butlearning that rads doesn't stop a return. Do realize it may not, if it were to return be in my breast, but could be anywhere. A friend who is a dr. seemed to think I was not thinking clearly about the metastsis issue, which could be the sticky wicket for me.

I feel better today in going back to original decision of no rads, once I learned of issues.

But your thought of another opinion, is obviously correct!! Perhaps I'll learn something that will change my mind.

Do hope all is well with you and you aren't experiencing a dark, rainy Oregon day.

Sincerely, Burma (Carol)

burma · January 2012

swalters,

Do want to apologize for misspelling your name. My thyroid brain sometimes "miscarries" information. Just wanted you to know I recognized the error and now you know why.

Burma (Carol)

cycle-path · January 2012

"the metastasis issue" --

DCIS can't metastisize, so there's no metastasis issue with DCIS.

There's one exception to this, in that there's always a teeny, tiny chance that what you have isn't really DCIS -- that you did have a small invasion that was not detected.

The chances of that are extremely small, though. IMO we can only worry about a limited number of possibilities, and at some point we just have to stop worrying and live our lives.

burma · January 2012

Thank you very much cycle-path for your wonderful words of wisdom..............you are right: we can only worry about a limited number of things, and good to get on with life. Believe i've reached that stage. Feel comfortable going back to original decision of no rads.

Obviously my friend didn't know I was DCIS and that it can't metastisize. Why didn't the RO mention that????

Am going to listen to the Med Onc to whom RO referred me, but mind now made up.

Thank you for great perspective.

Trust you are enjoying sun today; here in Oregon dreary, dark, rainy and cold.

Sincerely,

Burma (Carol)

cycle-path · January 2012

Well, there are other things to consider regarding radiation. As I understand it, after a lumpectomy there are three things that can happen. (Again, this is my understanding but I hope someone will jump in and provide a better explanation.)

1) You can get a recurrence of the primary tumor in the same spot. This happens because a few stray cancer cells were missed during the lumpectomy, and they re-establish themselves and create a tumor again. This is what radiation is intended to prevent.

2) You can get secondary tumors (metastases) elsewhere. This shouldn't happen with DCIS, though it occasionally does either because some cells escaped during surgery or because you didn't really have DCIS. I believe radiation is supposed to help prevent this as well.

3) You can get an entirely new BC unrelated to the first one. Radiation won't prevent this.

So the main thing you're trying to prevent with radiation is situation number one, which I think is believed to occur fairly commonly when one doesn't get radiation. I don't know what kind of margins your doctor got when s/he did the lumpectomy, because if the margins were very generous then that cuts down your risk of reoccurance of the primary tumor by quite a bit. But if the margins weren't so good, then your risk is apparently pretty high.

ma111 · January 2012

Burma,

The most important thing is that you are comfortable with you educated decision. Glad you have that now. I wish you luck.

radiation therapy

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