Treatment Quandry for DCIS

Hello EssKay; I too have had more questions than answers.  This I know for sure: Statistically speaking, non-invasive DCIS is unlikely to return within 10 years even without radiation and / or chemo or hormone drugs. My choice for the less than .4 cm DCIS will be lumpectomy period.  I am planning on having bi-annual mammograms on this side and annual mammograms on the other side.  If the DCIS comes back, or if invasive cancer begins, I'll be having a double masectomy.  Although possible, very unlikely that anything will come back after that.   I too feel like putting a bunch of toxins in my body can compromise my otherwise excellent health.   If I were you with your heart issue, I would not do anything that would stress your heart.  You can always have your breast removed; not so easy to remove and still live without a heart.  Wishing you the best.  Don't stress.  Just seek more opinions and trust your gut instinct.

Esskay - there are not supposed to be masses in the mediastinum - thats the space in your chest between your lungs - your heart, trachea, esophagus and thymus are there as well as blood vessels & lymph nodes. 2nd opinion please!!! Sounds like further testing is in order.

Re: rads -the doctor who does the test should never be the guy deciding if its necessary. Trust your medical oncologist - if you dont get a second opinion. As for heart damage from rads I believe its mostly the coronary arteries if it affects this and there may be forms of rads that minimize this risk. Can your cardiologist weigh in on this? There is some controversy apparently if taking tamoxifen during rads increases the risk of lung fibrosis but apparently the jury is still out.

Get opinions - trust your gut - sounds like your heart issues are more of an immediate issue but you want the DCIS to be over and done with also.

Good luck

Hi Esskay,my DCIS was 9mm, but it was also grade 3 with comedo necrosis and that is why the medical oncologist wanted me to consult with a radiation oncologist. Also depends on your age, the younger you are the more years you have ahead of you for recurrence. In my case the medical oncologist and radiation oncologist both recommeded it.

If your chance of recurrence is only 3% to 5% that is already pretty low, I think radiation is supposed to reduce that by another 50%, but at such a low recurrence rate it's not much of a difference. I also worried that the rad onc would suggest I needed rads because that is what they do, but a friend on mine consulted the same rad onc who told her it wasn't necessary for her. In your case I would definitely want a cardiologist input. I would go by the medical oncologist and your cardiologist.

I'm brand-new to the list and feeling just like EssKay -- totally confused -- but my situation's different, of course.  I was diagnosed with DCIS, intermediate grade, on July 31;  lumpectomy on Sept. 8.  My surgeon called to tell me the pathology report was 'wonderful' with very clear margins.  After getting lots of info, two opinions, and agonizing endlessly,  I'm halfway through 3-week radiation treatment at top hospital where I also had surgery.  I hate thinking of what it's doing to my body but really wanted some way to lower recurrence odds a bit.  

And I knew I'd be much more afraid of Tamoxifen. My family heart history is terrifying. I've always done every heart-healthy thing imaginable,  but 3 years ago I had my own "cardio event."  It's not in my medical records as a heart attack because nothing showed on any of the tests, but my just-like-a-heart-attack symptoms lasted 18 days and only ended after I'd taken Plavix for 3 days.  Cardiologist's best guess: a blood clot that Plavix took care of.  So that blood clot side effect of Tamox. really scares me.  And I have to decide soon whether to do anything beyond surgery + radiation.  

When I spent 90 minutes last month with a med. oncologist (same excellent hospital), her first words were "DCIS and tamoxifen are very controversial."  It's tough veryfor me to get a full, informed grasp of my own personal risk factors.   Most of you have much greater info about your own tumors than I do.  I know mine is ER+ and non-comedo.  Haven't learned anything about size of the DCIS itself, exact grade, width of margins...  From the pathology report, I was able to see PR -  but I couldn't understand anything else.       

I'm seeing the med. oncologist again on Nov. 9 to sort out my own situation more fully -- though I realize my goal is finding enough justification not to take tamoxifen and feel okay about that decision.  Everyone I know who had breast cancer took it, at least for a while.  I'm wondering how those of you who turned down Tamox. made that choice, and how you feel about it in retrospect.  Also wondering what specific questions I should ask the med. oncologist,  because I suddenly suspect I'm under-informed about my own condition.  

It's helped to realize other women go through the same intense kind of soul-searching.  Reading everyone's very candid comments made me want to join  this community.

Hi Hobie-

If it is any help, I've been on Tamoxifin for almost 4 months with not one side effect.  It was very hard to take that first pill as I've read all of the negatives, but it has not been bad at all.  I had a very small area of DCIS removed and know have LCIS remaining- I opted for Tamoxifin only, no rads as per the suggestion of my breast surgeon who is with a highly reputable cancer center- don't know if that helps at all!

Michele

Thanks Michele,  It does help, especially to know that not everyone who takes Tamoxifin has side effects. I had high grade DCIS and I'm thinking it might be a good idea to give Tamoxfin a try.  I'll probably wait until after I finish radiation treatments. This will give me more time to decide for sure.

Carol