Radiation Decisions

Its a personal thing.  I will tell you that I was scared to death of radiation.  Can't say why in particular but that was my big monster in the dark, way more than tamoxifen.  In the end, I did it.  I decided that anything I could do to increase the chances of my seeing my monsters get married and raise their kids was doable.  And the surprise was that it wasn't nearly as bad as I had anticipated.

good luck!

I was diagnosed with DCIS, stage 0, in August. Radiation scares me and I had talked to the RO about opting out, but decided to go ahead. I've read that if there's a recurrence, it tends to be much more aggressive and I want the added protection that radiation gives. I asked for the partial breast radiation and was all set to go with that, but I didn't fit the protocol. The catheter and spacer were inserted at the time of the lumpectomey, but the CT scan afterwards showed that the site was too close to the surface of the breast and I would not have a good result cosmetically. So the catheter and spacer were removed and I'm now going to start the whole breast radiation. I was so depressed! I think you're lucky to be able to take advantage of this option and I would go for it. 

Hi,

I was diagnosed on 9/19/11 with DCIS 2cm then found out it was four cm. Grade 3. I have not seen the pathology report from the lumpectomy just the Dr. phoned me.  I had surgery and now have "no additional cancer". I meet with RO tomorrow. I really do not want radiation and think that it would be worse for me than better. I have a few questions to ask from Susan Love's book but everyone just keeps telling me. It's just a little radiation. It's the recommendation. Blah Blah Blah.

How did you choose not to do rads? Was there a study you read? A percentage you found? Someone who really knows who told you? I wish I had an answer! 

 I see that there is less chance of BC recurrance but what studies show the other reasons, radiation reasons that folks get sick down the road. How many DCIS rad patients get heart disease? ect.?

OK ask for survival rates and recurrance rates.

Do survival rates include deaths from thing possible caused by radiation treatments like heart disease or lung disease. I really want to know how these compare and not just BC. Looking for more info thanks.

I was diagnosed with DCIS in August and had a mastectomy in September.  I was given the option of lumpectomy with radiation or a mastectomy. I met with the RO and he determined that because I also have a bone disease (rare), he didn't think radiation was an option for me.  That left me only one option. I seriously thought about just doing the lumpectomy without radiation.  Needless to say, being overwhelmed is an understatement.  After having the mastectomy, I still find myself thinking, maybe I should have done the lumpectomy.  

Hi everyone, new to this site. I am having the same reaction as the poster, to radiate or not to radiate. But it is a deeper question we ask, I think.

Aug 11th I had a lumpectomy for atypical ductal hyperplasia which pathology diagnosed as 4 cm nuclear grade 1-2, cribriform, micropapillary and papillary architecture with focal comedonecrosis. No malignancy was identified in any of the samples. My surgeon outlined four post operative options: 1) be vigilant and have regular mammograms and have a 20% chance of recurrence; 2) take Tomoxifin for a 10% chance of recurrence; 3) have radiation therapy (he seemed to lean on this one) for a 10% chance of recurrence and 4) have a mastectomy for a 0% chance of recurrence. He made it clear no more surgery or chemo would be needed. 

I should note here that my surgeon is the head of a breast clinic in a world leading cancer hospital, he is considered the best and I do trust him as my doctor. I told him immediately that Tomoxifin and mastectomy were off the table at this time. 

I don't know which confused me more: that I was diagnosed officially as having DCIS or that he'd actually put mastectomy on the table when malignancy was not present. I have read that when ADH is over 2 cm, it is automatically labeled DCIS.

I am wondering if perhaps we run the risk of being over-treated. In the case of radiation, if I were to have it now, I could not have it on the same breast ever again.  If by some chance I had recurrence or breast cancer, that door would be closed to me as a treatment. Apparently the radiation also catches part of your lung and can affect your ribs. What are they radiating, if everything suspicious has been removed?

Has anyone discovered research or data that indicates how much medication/treatment is too much or unnecessary? Are we reacting to the scare of breast cancer rather than determining our treatments based purely on fact and thinking of the affect on the whole body?

I would really like to hear what everyone thinks.

Radiation is not a guarantee to preventing recurrence. I've had 3 lumpectomies. Each time I chose not to do radiation, or tamoxifen. After my second dx, I should have had a mx, but then was sefl pay and couldn't afford reconstruction. I also knew if I had radiation and again had a recurrence that reconstruction in the future would be difficult.

I have a fourth dx, and the only thing I regret is not getting a mx last March. I was playing russian rulette...the cancer bullet finally got me..ouch. Now the dcis is idc, with the her2+++ gene.

If you have a high grade dcis como-neucrosis and you don't want to do rads, or tamoxifen it's best to go with the mx. I wish I had. Like someone said on these threads, it's not if it will recur, it's when.

The other thing to add, this week when I saw the plastic surgeon,checking out a few, he assumed since I had pevious lumpectomies that I had radiation. He said, before I could say anything, it's hard to get good results with radiated breast. Your breast tissue is damaged. I then piped in and said I've had no radiation. He smiled and then said the results would be much better.

Just something to think about.

Olivia, actually my annual mri was early Dec 2010. My biopsy was around Jan 5, 2011. My lumpectomy was March 5, 2011. I am a little surprised that this new idc wasn't seen in the Dec.2010 mri. I was a few months late for my annual mammogram. I suspect the idc recently found has been there since my first dx of dcis in Dec 2007. It was found next to the scar of my first bc dics. It can take years for it to show up on a mammogram or mri. Also, my second dx was multi-focal. The multi-focal did not show up in the mammo or mri. Sometimes it is too small to be seen, or hasn't yet developed the califications.

If I were you I would get a second read on the biopsy. I've read where women who were told they had atypical cells or dcis didn't at all. If your patholgoy report is in question make sure it's right before going for any treatment...even surgery.

BTW...dics, grade 3, como -nec type is aggressive. After my first lumpectomy it only took a year for it to show up again...and a few years to find idc from the original dcis site. From what I read it takes about 2 to 3 years.

hello Eveberry,

did you have low grade DCIS when you had your first lumpectomy?  i had an extended lumpectomy last August. i had infiltrating carcinoma 3.7mm tubular, grade i,which was removed entirely with the biopsy. Following that i had to have surgery to remove a wider margin.  in it a small cluster of the low grade dcis was found, hence the surgeon said that i needed r/t. the oncologist i saw in London however said that if i had r/t the chance of local recurrence was 5% vs 10% if i did not have r/t.  i was torn with the decision, could not decide and waited for three months to go by then panicked again and started the treatment but after six i have pulled out in total panick.  like you i think that if idon't have r/t and i have a recurrence i will have more options and they will be more advanced in a few years' time. instead,once you have r/t your breast tissue will get damaged and if you need to have a mx at a later stage it could be a problem to put an implant in. what have you decided to do? 

Thank you Cycle - yes, exactly, perhaps they treat large ADH the same as they would DCIS. That is what started me thinking, perhaps it would be best to do genetic testing and take all my individual criteria into consideration so my percentages of recurrence, etc. can be accurately calculated. They didn't even give me a hormone pos/neg result. My surgeon gave me the stats for DCIS generally which is not necessarily the most accurate way to proceed I think. In the end I agree with all of you when you say it's what we know in our guts. All along I have not been worried, "knew" even going into surgery that this was going to be behind me. So when I got the path report I was truly shocked.