Just diagnosed

Yes, routine treatment is lumpectomy followed by radiation and then hormone therapy.  Hormone therapy is discussed only if your DCIS is estrogen and/or progesterone positive (that should be on your pathology report from the biopsy).  [Can't remember if estrogen sensitivity is more important than progesterone or not, perhaps someone else can clarify].  Hormone therapy (Tamoxifen if you're premenopausal or Raloxifene if you're postmenopausal) has its own risks and side effects, which you may have to consider and decide about a bit later down the road.

But surgery is pretty much non-negotiable, other than deciding between lumpectomy & mastectomy, which will primarily depend on how large the area with DCIS is.

Assuming you have lumpectomy, radiation is also pretty standard.  You MIGHT be willing/able to avoid radiation if have a very non-aggressive bunch of cells (the cell types and characteristics should also be on your biopsy path report) AND the surgeon removes a fairly wide "margin" (tissue without any cancer cells) in the lumpectomy.  Since the cancer cells aren't visible to the naked eye, and there's usually no "lump" in DCIS, the correct amount of tissue the surgeon must remove can be hard to determine.  That's why there is talk of "re-excision," sometimes the surgeon has to go back in to get "clean margins."

It's also pretty standard to see a surgeon first, which is not to say that you'll never want to see an oncologist.  Remember that there are medical oncologists and radiation oncologists.  Some surgeons are surgical oncologists, and while I have no real opinion on whether seeing a surgical oncologist is necessary, I would recommend seeing a board certified surgeon specializing in breast cancer rather than a general surgeon.

I'd also suggest asking for an MRI.  They're often used to see if there are any other areas of nastiness lurking which haven't been discovered on mammo or ultrasound.  Usually nothing else is found, but in a small amount of cases (I think 6%?) MRI will find another cancerous area.  I was in the unlucky group, and I guess I'd rather know now rather than later (if it showed up as a recurrence b/c it was already too advanced for radiation to kill).

There's a learning curve to all this, but you'll get up to speed very quickly.

Sorry you had to join us, but welcome!  Best wishes to you!!!! 

Edited to add: 

After you see the surgeon, you might want to get a second opinion just to confirm your treatment plan.  This may also include a second opinion from a radiologist (re-checking films from whatever imaging you've had) and pathologist (re-checking your biopsy slides).

I agree with her- I had the wire guided  wide excisional biopsy (taking out the whole thing)- there was a little sting from the needle that deadened the breast, and everything else I couldnt feel-then with a wire sticking out of me, they took me over to surgery and the last thing I remembered till I woke up was them saying "we're going to give you something to make you ...." lol Very little pain post op- I had more pain from having my gallbladder removed a couple of years ago!

I must admit, Im open to just about anything, except tamoxifen...but I really need to get my stuff together and look at incidence of side effects vs recurrence...I kinda feel like if Im going to do rads, doesnt that lower the incidence enough without me having to add tamox?

I asked the rads onco about higher incidence of recurrence with me being 'young' (im 38) has more to do with the avg lifespan being 70s-80s for a woman which, in effect, means recurrence is higher for my age group because I have a longer length of time to develop BC again..OR was recurrence higher because Id developed DCIS? 

He told me both, but neither of these scares me enough to want to take tamoxifen...I absolutely HATE the idea of taking it and being a PMS type for five friggin' years..but like i said-i should prolly do a lil more research...

Hi BubbFive,

Sorry about your diagnosis.  I am 6 weeks post lumpectomy.  I think for me, the comfort level I felt with my breast surgeon was a telling tale.  I researched her and liked her bedside manner.  She answered all my questions and knew what she was talking about.  I did research alot and even asked her about clinical trials going on at UCSF where they are debating meds vs. lumpectomy.  I personally did not feel like I wanted to play the wait and see game and try to get into a trial.  A second opinion is a good thing if you are not comfortable.  I personally, did not want to go see yet another doc and be diagnosed the same and then there goes the delay to treatment waiting for the second opinion.  Ask about your surgeons success rate in getting clear margins.  After the final path report I did need to see a medical oncologist for Tamoxifen.  I did not want to take it but then I have a 3 year old and need to be around and healthy.  The onco said if I did not like it I could stop.  So far, so good, no side affects and it has been almost a month.  Do ask about the rate of the cancer's growth or grade. 

Tip on the guide wire, ask them to make sure the local anesthesia takes affect before going in.  The radiologist did this not my surgeon.  The radiologist did not wait for the lidocaine to take affect.  She injected the local and turned around with the wire.........it was painful.  I now know what a chicken breast feels like when it is skewered. 

Best of luck! 

I am so glad that the surgery was not painful for you.  I will be scheduling mine next week and because the core biopsy was so painful, I"m afraid about this now.  In the meantime, I will be hoping and praying for you that they got a clean excision and that no more microcalcs are left.   As I have said many times on these forums, I too have great trepidation about tamoxifen and radiation.  One Dr. I saw at Mayo Clinic said that if all turns out well in the lumpectomy, then perhaps no radiation and no tamox would be ok as long as I keep getting 6 mos check ups.  If something does come back or is a new cancer, then all the options are still on the table.  You can only have radiation on one breast once.  For me, the lesion is so small that it just doesn't seem worthwhile to zap it with radiation!  Save the radiation if something really nasty shows up.  Besides, the R will only decrease the odds of it coming back by 5%...or, looking at it another way, there is an 80% chance that nothing will ever reappear by doing nothing after lumpectomy...another 5% doesn't make much of a difference TO ME.  That said, everybody's risk assumption is different but I'm looking at long LONG term side effects of these drugs and treatments, not just 10-15 years...I expect to live at least as long as my mother (who is currently 87).  Doing radiation or taking a drug such as tamoxifen will change your whole body composition, in my opinion.  Taxmoxifen will through us into menopause (I'm not there yet...barely preimenopausal) and we all know how important hormones are to the healthy function of a woman's body.  My first choice will be double masectomy if the DCIS comes back or if an invasive tumor shows up.  A friend who had DCIS and this done last year has beautifully reconstructed breasts...she did not get radiation or tamoxifen, and while she could still get cancer, well, we all can get it again and again.  Best wishes to you in your decision.  If you have peace with it, then that's everything. 

I, too, was just diagnosed in Oct with DCIS. After 2 mammos and a stereotactic biopsy, a lumpectomy was recommended. I had the surgery almost 2 weeks ago, unfortunately they did not get clear margins, they took 1 lymph node and thank god it was negative. I now have to have a re-excision. My concern is, will this get it all. I believe since the cancer is in the duct and we have ducts throughtout the breast, it is probably in more ducts. And since DCIS is only diagnosed from a mammo, that these other areas are too small to be seen on the mammo. I believe the margin that wasn't clean was indeed another duct that showed DCIS only after the surgical pathology report. I know all recommendations are for re-excision, but a part of me says this won't get it all. Any advice from others that had to have a re-excision?

I don't want to have another surgery, radiation, then possibly find out I need to have a masectomy.

Help, all experiences will help me in my decision making.

My Dr. is recommending re-excision, I am thinking about getting another opinion.

 I also have dis-comfort under my arm from the lymph node removal. Anyone else experience that?

)

It sounds like you are going through just about what I went through several months ago- I ended up having two sterotactics, an MRI, countless mammos, an ultrasound and then the first excisional which found the DCIS- the surgeon recommended going in for a second excisional which I did- she then obtained clean margins and feels confident that I am good to go... she said radiation is an option, but she didn't recommend it herself.  Tamoxifin was the decision we made to give some extra protection for the future as LCIS was revealed in the second biopsy. 

Hope this helps!  There is a lot to learn as you go, I wish you well!

janets1, I am 59 and went through 36 rads treatments this summer to my left breast post lumpectomy. I had minor sunburn-like effects and no tiredness. I kayaked 8-12 miles at least three times a week throughout my radiation.  I decided to have the radiation because although the dcis was less than 1 cm, it was grade 3, but without comedo necrosis and the anterior margin  was only 1.5mm. My DCIS was not visible on mammography, so I was not comfortable with relying solely on monitoring. And I was lucky that my tumor was estrogen + so I can benefit from Tamoxifen.

I would make sure that the place where you would be getting your radiation has the most up to date equipment since the better the equipment, the more targeted the treatment.

Good luck with whatever you decide.

Julie E

Hi!  Just wanted to say I just completed my 7 weeks of rad on the left breast.  I had no major problems whatsoever. I am very, very fair and was worried about burning....but that, too, was minimal....not even as bad as a sunburn.  I had a few times where I was tired more than usual, but it was nothing that held me back from working full time. To be honest, the worst part is having your arms above your head for the ten minutes or so....but, still...nothing I couldn't handle.  I really can't believe how fast it went by..and I had to drive 45 min. each way every day....but, I knew it was something I had to do.  Everyone at the cancer center was so nice and made me feel very comfortable. Each day I went there, I was very grateful for all of them....and grateful I was able to have the radiation and not a mastectomy....I'm all for keeping my breasts if I can!   Do you know, by chance, what type of radiation equipment is available to you?  I was given radiation through Tomotherapy...here is a link....http://www.tomotherapy.com/    ......  state of the art and I loved the fact it reduces exposure to healthy tissue.

Now, I am scheduled to see another oncologist to discuss Tamoxifen...which I have real reservations about.  I need to see more data on women who took it and who had no serious side effects.  I've been searching on-line and haven't found what I'm looking for just yet, but I will keep looking.  

I had my diagnosis on Oct 23. Have not done my surgery yet, but I scheduled an appointment to see the oncology-radiologist last week. That turned out to be a near three hour meeting at the local hospital where the radiation will be done. First the coordinator, then the social worker, finally the rad doctor. Among other things, the social worker gave me a pamphlet of "Fall 2009 Cancer Connection 10-week program and workshop guide". It offers different classes from Pilates to painting and even offers complementary therapies such as therapeutic facials and massage therapy. All free of charge!  I think that meeting was worth while. I get a feeling of the rad doctor and get a lot of information about local resources. I called the social worker later to talk and she was very compassionate and trying so hard to help. You probably want to check with your local hospital and see if they have similar programs too.

Also, I did see an oncologist too. She examined me more carefully than the surgeons did. But since my ER/PR is negative, she said I would not need drugs from her. When I said good bye to her I told her that I enjoyed talking with her and liked her as a doctor but I donot wish to have to see her again,   She understood.

Hello, 

I am afraid that I am only adding more questions to your forum. My mom (66 y old)was just diagnosed 2 wks ago with DCIS and IDC. We have no family hx, but I think my grandma died of stomack CA.

My mom followed with her primary care that send her to surgeon. I don't know if she has to have an oncologist or what. She is scheduled for mastectomy, possibly radical, and I don't know what to do. She opt to not do reconstruction. My sister and I support her in that. She just never had any surgeries and this one is one too many.

She is doing ok from what I got from her. Her biopsy stated it is stage 2, 6-7 grade. I am waiting to talk to surgeon more about that.  I have a very good relationship with my mom but now I am afraid to talk, to not to scary her before procedure. 

My mom cannot really tell me what she talked about with the surgeon. I truly belief that she just didn't register.

I am talking to her on the phone everyday, but can come to NY day before surgery.

I would like to know if there is anything else I can do for her now? What to ask the doctor about?

I have a phone conference with him on Wednesday(just scheduled it).  I want her to be 100% informed before she makes any decisions.  She just want it out. Everything she said.

I know she is scarred and I want to help her the best I can.

Thank you

Beata 

Hi BubbeFive,

I was just dx on 11/4 and will be having my lumpectomy and SNB this Friday. It sounds like you sailed through surgery. How are you now and how soon were you able to lift etc? Did you have an SNB also? Did they recommend rads or tamox afterall?

Mine is a small DCIS (clear MRI) but grade 3 with comedonecrosis. Surgeon is a BC surgeon and takes wider margins than others. Hoping no rads or tamox but since ER+/PR+ I am expecting tamox. I would love to keep up with you as it seems we are almost on the same timeline.