What to expect after DCIS dxd

would you mind sharing what your doctors have recommended for follow up care? Are you able to get MRI's?
thanks,
lisa

Yes, I'm taking Tamoxifen. I had some problems with it - wacky blood levels - so I was off for about 4 months. I'm back on now with no problems and minimal side effects.

Joe, have youlooked aa the VNPI (Van Nuys Prognostic Index). Maybe that will help you.

http://poptop.hypermart.net/brcavnpi.html

Jo

Hi hopeful,

It is standard practice for DCIS patients who have mastectomies rather than lumpectomy with follow up radiation tx to not see an oncologist because there is no cancer left to treat.

I too was dx in Feb this year with DCIS - had lumpectomy, dirty margins, er+& pr+, grades 2&3, stage 0 and it was extensive so had mastectomy on April 18 with SNB - 2 nodes which were negative. Microinvasion was suspected from the lumpectomy but the path report after the mastectomy stated "no microinvasion dectected". I asked for a second pathologist to look at the slides who agreed with first pathologist. There was no need for radiation or chemo. My surgeon assured me that I was virtually 100% cured, Tamoxifen wasn't mentioned (to my relief!) and no suggestion that I needed to see an oncologist. I am perimenopausal so was told there were currently no drug trial suitable for me. That was fine by me. I also consider myself extremely fortunate, even though it was sad to lose my breast.

I may be going off on a bit of a tangent here but here goes: You have been on this DCIS journey and no doubt been told that you are fortunate to be cured and to just keep an eye on your remaining breast (assuming you had a unilat mastectomy). My Breast Centre has a team composed of surgeons, breast nurses and pathologists who, in fortnightly meetings, discuss all current patients so I guess this is where the onco determines if a woman needs these extra treatments or not so an oncologist has probably had some input into your case, even though you haven't had a face to face session with him/her.

I personally, wish there was an oncologist who I could visit, (once would probably be enough) who would just answer all the questions that have arisen since my surgery. This board has been extremely helpful in giving me information and directing me to websites etc but it would be nice to sit down with a specialist, who had strong people-relating skills and bombard him/her with my questions and anxieties about my what has happened to me. I think that would help to inform, clarify, reassure and bring a degree of closure for those of us who feel left a bit high and dry. Some of us feel as though we are in a no man's land where we aren't quite cancerous enough to need this attention, yet at the same time, we have gone through surgery, often radiation and othertimes, mastectomy, with or without reconstruction - which are all radical enough treatments as far as I am concerned.

Breast nurses fulfill this need to a degree but once again, in my case, I felt like I was taking up her precious time asking for information and reassurance when there were women suffering from more severe cancer than I was.

Perhaps we need an 'oncopsychologist' who would fulfill this need!

Hope this has helped. Come back and ask more questions if you feel the need. I have received SO much support and information here.

Jeanne, I also had a hard knot around the incision site. Warm compresses do help. I was told not to use ice. It just takes a time (words we all grow to hate)to heal but it does. Have you tried a heating pad on a LOW setting that you could use during a lunch break at work? Assuming, of course, there is a place you could do this.

I had the second surgery within a week of the first. It was good to get it over with but harder on the body---not enough recovery time from the first one. I then a third one several weeks later. It took three tries to clear those stubborn margins!

I also suggest you watch the spot carefully for heat. If it becomes hot or red (especially if you are running a fever) you need to contact your physician immediately because it might be a sign of infection. I developed an infection 10 days after the second surgery. We caught it early and took care of it quickly so I was fine.

I share your frustration about wanting it all over. My DR called DCIS a surgeon's nightmare because it can't be seen making clearing margins very difficult. Treatment took longer than I anticipated but I'm doing great now and in my last week of radiation. Pretty soon you will be there too.

I wish you much success with surgery #2

Ceice

Thanks for the encourging words. I'll try a heating pad at lunchtime.
Jeanne

Hallo, in 2007 you posted.... I have the same diagnosis... just wondering.... I want to stop taking tamoxifen (used it for 8 months)... did your cancer came back?