DCIS mastectomy and post medical treatment

I had mastectomy for DCIS in August with positive margins and just started radiation today. What does your BS say about your margin? I believe seeing a medical oncologist and radiation oncologist would be a good thing to do. 

Best of luck!

Kim

I had a biopsy in March and was informed that it was DCIS, Grade 3 with comedo cells and ER+/PR+  I did not have to wait for this information. 

My BS immediately referred me to a plastic surgeon and radiation oncologist immediately so that I could be well-infomed about all my options (lumpectomy + radiation or mastectomy). 

I started out with a lumpectomy but ended up like you with a uni-mx.  There is no need for radiation if you opt for the mastectomy.  I was referred to an oncologist also.  I actually met with two oncos as the first one told me I had to take raloxifene (Evista) for 5 years.  I wanted to get more information about what I needed to do in my situation.  The second onco was very thorough in explaining the risk reduction and all the studies associated with risk, etc.  I would get from taking raloxifene (1.5% reduction in risk of getting DCIS or cancer in the other breast).  I opted not to take any meds.

The oncologist reiterated that my followup would include annual mammography and that's it.  

I think you should get a referral to an oncologist and get your full path reports. DId they not test your tissue for receptor status when you had the biopsy or lumpectomy? 

I was treated at Mayo and i thought my care was well coordinated and top-notch.

Good luck!

What are the guidelines regarding margins and rads? Does anyone know?

The criteria for whether or not radiation is needed after a mastectomy for DCIS is pretty simple - it's the size of the margin.  The size of the tumor does not come into play.  And lymph node invasion does not come into play because lymph node invasion can't happen with pure DCIS. 

Based on current medical practice, those who have positive margins after a mastectomy for DCIS are very likely to require radiation.  Those who have margins that are 1mm or less may have radiation recommended.  Usually if margins are greater than 1mm, radiation won't be recommended. 

The criteria for radiation after a mastectomy are quite different for those who have invasive cancer.  Even the margin considerations might be different since there's likely to be a higher risk of recurrence if there is invasive cancer within a couple of millimeters of the chest wall, vs. DCIS. 

I had a unilateral mastectomy in 7/09 for grade 3 DCIS, 4.5 cm.  I saw a medical oncologist and had a second opinion medical oncologist as well---wanted 2 opinions on Tamoxifen and opted out of taking it.  I get alternating mammogram/MRI every 6 months, which is nice because I am having some type of follow-up every 6 months.   I would recommend an appointment with a medical oncologist for sure.

I've had three excisions for DCIS that was originally thought to be one spot, less than 1 cm. Apparently there is lots of microscopic, multi-focal medium- to high-grade DCIS that is visible only on the path reports, so I am very reluctantly having a unilateral mastectomy next week. There is a 50-50 chance according to my BS that I will need radiation afterwards, and I am a) grateful to Beesie for all the info on this and the heads-up that this does, indeed, occasionally happen and b) pissed beyond all imagining.

I hadn't even thought of Tamoxifen. My neighbor is one of the "lucky" ones. She had a mastectomy, immediate reconstruction without complications that she is very happy with (she looks fantastic) and, as she keeps saying, she is done with treatment.

I don't even think Tamoxifen would be safe for me because I have a predisposition to clotting. So that would be a really miserable thing to have to worry about.

dasiy6: did you have a bilat mastectomy? which margin was close? did they site any recurrence risk when recommending to pass on the radiation? and had you done immediate reconstruction?  ...in case you're sitting around wanting to ask some questions...   

my margins (both chest and skin) are < 1mm. my first opinion was no radiation and my 2nd opinion (from the Mayo Clinic radiation oncologist) was "on the fencee". She's asked four colleagues (also radiation oncologists) and got 2 yeses and 2 nos. Just wondering if you have any data I don't.  The first tumor conference said no radiation, the second tumor conference (Mayo clinic) said yes to radiation but it turns out that there weren't any radiation oncologists present.  One more tumor conference on Tuesday, then decision time!

Kim,

You have definitely come to the right place.  The women on this site are wonderful, and full of help. 

It sounds as though you had multifocal DCIS--was that the reason for the mastectomy? 

Were the lymph nodes negative? That's essential information, because if any were positive, you have an invasive disease, not just DCIS. That would affect your treatment.I suspect they were negative, since the doc seems to think you are ok. 

When you refer to "him," do you mean the breast surgeon? If so, I would recommend you find a medical oncologist to see on a regular basis. I expect to see a medical oncologist the rest of my life, even though the cancer is all (hopefully) gone. A med/onc can talk to you about tamoxifen and radiation and whether you would benefit from either.

 If it's truly DCIS and the margins are clear, you won't need chemo. 

Good luck!

Ina 

I have the same as you - DCIS Stage 0 Mastectomy - all took place in 2009. In Nov 2009 I started tamoxifen and in October 2010 I stopped taking it. I am having severe bone pain - all over my body. I had read that this was a side effect of tamox but didn't really put two and two together. I see my onc in another two weeks and I'm going to let her know the new plan is:  mri and mammo every six months. I'm done with drugs.

Brazos:

  I, too, questioned my BS and oncologist when they said no need for any follow-up other than physical breast exams every 6 months-- but I have 2 sets of hands examining me and they are spaced out thrrough the year (do you see a medical onc?)- I still see the oncologist, who does blood work once a year, too. If I had silicone implants (I chose saline), the PS would do MRIs. The others say no to MRIs because too many "false" things are picked up and lead to unnecessary biopsies. I've already had a biopsy on an underarm node in my prophy side that led to a permanently pinched nerve, and multiple ultrasounds on spots on my  cancer side that felt weird to me-- so when I do have an issue, they certainly follow up on it.  Yes, when they say 1-2% I'm not as reassured as they want me to be-- why wouldn't that 1-2% include me?

Hi thank you all for all your responce so for ..I have one other question.I keep hearing margins what does this mean.my pathology report says:  involvement of surgical margins:close,(o.1cm),posterior margin.

If margin close: single focus.

Does anyone know what this means.Again I just had bilateral mastectomy stage 0 dcis no lymph node involvement,prog +.estr + high nuclear grade with comedonecrosis.Have been told im "cured' no further treatment..I do not understand that.

thank you for any advice

Kim

Hi ladies, One thing I have noticed about all of these forums is most posts are from people who are new or have only had a minimal time of dealing with their diagnosis, only a couple of people have been around for a long time.. One thing I wanted to share was that I have talked to a lot of people and especially those who have had DCIS and the good news is, most of them and I am talking people who are 10-20 years out from having had a mastectomy, say they have not had any further issues with the DCIS, each one may or may not have had radiation,or had to take hormonal therapy,some did not have to have any further treatment other than follow up with the Breast Surgeon but they have all survived and I think that is good news.  I hope you find this encouraging,  I DID  hugs to all you wonderful people and many blessings

Diagnosed with DCIS. Decided to do double mastectomy. They ended up finding DCIS in other breast and micomatasicy in one of my sentanal nodes.  They then removed 11 more nodes and they were negative.

I went from DCIS to stage II.  I have now done my 2nd TC treatment, two more to go and no radiation.

I am reading a lot of people who know they are ER/PR positive or not.  My doctor did not test me for this?  so many more questions.

Whisper, you may ask for a copy of your pathology report, maybee its on there if you are not sure?  That information is very important to know. Best Wish's to you.

CMCOLLMOM.... Welcome. You have come to the right place for advice, support, and a haven that you can't always find in THE REAL WORLD.....I had Bilateral M's in June. I found I hit bottom 3 months after.... and I am doing a bit better on the emotional RollerCoaster at 5 months. Its hard to talk to people, and hearing the words " I have breast Cancer" .... i think alot of us/ and myself included take a long time owning those words.... i have just owned them a little at this point. Its bigger than I knew. I also am confused, alot. My whole life/ world is just not the same.

Sending you comfort, strength.... and light to see you thru.

Remember you are never alone. Stop by here more often.

Peace

to Kelben, Why did they give you chemo if you were insitu, I am very confused, not the usual treatment, did they find something else.  Was it because it was infiltrating??? What does that mean???