input re treatment options

ralss1014

Hi everyone, and thanks in advance for your input!  Recently diagnosed with DCIS  (intermediate grade w/necrosis, er+ also, the mass was < 2mm w/clear margins -- so very, very small). Radiation followed by tamoxifen was initially recommended, but a second opinion on the pathology has prompted my bs to recommend considering tamoxifen only.  At this point, I've met with a radiologist and will be meeting with a medical oncologist next.  I then need to decide my course of action.  All that i'm reading suggests most people go with radiation followed by tamoxifen.  I haven't seen much re: skipping the radiation .... any input would be appreciated .... btw, I'm 51.  thanks - simply reading this forum has been encouraging

Moderators

Hi ralss1014, and welcome to Breastcancer.org. We're so glad you've found us, there is a lot of support and information in these forums! We're sure someone will be around shortly to offer some insight into your questions. In the meantime, you might find some of the information on radiation located here helpful. Again, welcome to the community!

The Mods

Annette47

I think in your case it wouldn't be unreasonable to skip radiation, but your best bet is probably an opinion (or two) from a radiation oncologist as it is their area of expertise.    What you want to find out is your risk of recurrence with and without radiation and then you can decide what makes sense to you.    Some people will tell you that of course a radiation oncologist will recommend radiation as that's what they specialize in, but a good one (like I have) will be willing to thoroughly explain the reasoning on why they are recommending it and will be willing to entertain the option of skipping it if it makes sense in your case.   Standard of care has been to recommend it unless the patient is older than 70, but there have been more than a few people posting here who are younger than that and chose to skip it.

I also had a very small cancer, but chose radiation because mine had already started to become invasive, and I wasn't really given an option by any of my doctors.   With pure DCIS, I'm not so sure I would make the same decision.    One downside to radiation is that it can only be given once, so if it comes back OR if I get a new primary on that side, my only real option would be mastectomy.   I have seen some people who prefer to save rads in case of a bigger or more serious diagnosis down the road (so as not to be stuck with mastectomy as the only option), as well as others who prefer to throw everything they can at it now in the hopes of never having to deal with it again.

Best of luck with whatever you decide!

proudtospin

I am in the same thing as Annette, same diagnosis and chose radiation and AL for 5 years

I do not understand the "saving radiation for later" seems to me not doing radiation now, makes the possibility of a reocurance more likely, I am well aware that if the boob has new cancer than a mastectomy will be my only option but....I am 6 years clean now so to me it is 6 years with the dang boobie

ballet12

Hi raiss, I would definitely endorse the idea of getting a second opinion on the radiation.  Even though your area of DCIS is very small, it does have characteristics that make it a bit more aggressive, in that it's intermediate grade with necrosis.  It is usually those with a small amount of low grade DCIS, where the option to skip radiation has been suggested more strongly.  The radiation would be more of a guarantee that if there were other small areas of dcis (not seen on imaging) that they would be taken care of with the radiation.  That's a bit different from the purpose of Tamoxifen, which would be to prevent local recurrence or occurence in the other breast.  So, the radiation is actually direct treatment, and the Tamoxifen is more prevention, in the case of DCIS.  So, I'd get that second opinion, if I were you, and then make a decision that you are comfortable with. I knew, from the day that I read the pathology report, prior to even speaking with a doctor, that I would need radiation (large amount of high nuclear grade DCIS with necrosis), but your situation may be more borderline.  Just one more comment.  Radiation is much more scary in the anticipation than in the actual implementation. Most people, especially DCIS patients, who don't need radiation directly to the chest or to the axillary lymph nodes, do quite well with it.

Janet456

Ultimately it will come down to what you personally are comfortable with.  You will eventually come to your own informed decisions and should not look back.

For me it was no rads - I want to save every option for later (hopefully never).

I did meet with an RO and although he said it was "my choice", he also added that he see's a lot of people who decline rads and he spends a lot of time worrying about them - with my own personal case he wouldn't give me a second thought for declining.  To my mind he was the expert, I wanted an opt out so between us we reached a healthy understanding of benefit versus risk.

Each of us are different and it is what you will be comfortable with.  Do your research, get a 2nd opinion if necessary and don't look back.  Good luck to you xxx

ballet12

I agree with Janet.  It's what you are ultimately comfortable with.  I declined use of Tamoxifen or Aromatase Inhibitors after speaking with the oncologist, surgeon and radiation oncologist.  I was given the "option" to do it or not. In contrast, the radiation was strongly recommended by all parties. With the hormonals, the RO was concerned because of my family history, but I just didn't feel that the benefit exceeded the potential risks of side effects (particularly the AI's, which was what I was recommended for).  Of course, I had to live with the risk and the decision.  So far so good.