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Topic: Unsure of what to do - 6 months later

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Jun 4, 2007 04:12PM

CatNapping wrote:

I am thrilled I found this site (thank you Patti).

Last December I was diagnosed with DCIS (excisional biopsy) after calcifications showed up on mammo. What a shock this was to me, totally unexpected. The tumor was small, I don't have a copy of the pathology report (bad me) but I recall him saying 4 mm. My surgeon, and I trust him 100%, told me he didn't think radiation would make much difference in my case, he showed me statistics and I agreed. I'm in Minnesota in the middle of nowhere and if I wanted radiation I would have to travel 1.5 hours each way. There is a radiation center in the local hospital but he didn't recommend I go there. I did go to the local one just for a consult, didn't tell them I wouldn't have radiation there, however. I wanted another opinion. The doctor there agreed with the surgeon.

I am generally not one to worry and work was/is extremely busy (I'm a school principal and we are undergoing a merge) so I went with my gut and decided to forego radiation. All was well until I came to realize that it is just about time for my 6 month visit and I am getting a little jittery. After talking with the mother of one of my students I am also beginning to second guess my choice. She expressed shock that any doctor would tell me I don't need radiation for bc. What do I know? Not much about this, I admit. After reading all the posts here it seems the norm is either lumpectomy and radiation or mastectomy. The surgeon never even mentioned mastectomy except to say it isn't necessary for me.

Is it too late for radiation? I have a slow schedule for most of the summer and could easily arrange to get to the city every day. Or maybe I should have a mastectomy???? I don't know. If I plan for that, again the summer would be the ideal time. Any thoughts, anyone?

(I apologize for such a long post. I am one long winded women.) Log in to post a reply

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Posts 1 - 14 (14 total)

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Jun 4, 2007 04:25PM ijl wrote:

I've been diagnosed with DCIS , but mine is larger than yours. So radiation is not an optional for me. In your case I think it's a valid choice. One question I have for you what were your margins. I think size and the margins count the most toward the decision about radation.
You need to remember that the radiation is not harmless either. Take a look at VNPI index it sounds like you have a low index so your reccurence rate will improve significantly.
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Jun 4, 2007 04:52PM Chattypatti wrote:

I also would get a hold of the pathology report to check on your margins and the extent of the DCIS. My lump was 5 mm, but my DCIS was multi-focal. I had a mastectomy...no radiation. I think if you still want, you can opt for the radiation. It sounds like you must have had clean margins if they didn't recommend radiation.
Patti
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Jun 4, 2007 06:03PM roseg wrote:

I think 5mm is the cut line for radiation. If you just had it in one place then you're within treatment standards.

This web site tends towards people who got a lot of treatment. You had a small spot and didn't need it. If it comes back then you'll just have to deal with it. But remember, DCIS is not life threatening.

Of course the next question is: are you taking tamoxifen?
Rose
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Jun 4, 2007 08:40PM mbordo wrote:

CatNap-

4mm is a *very* small area of DCIS - you are quite fortunate - mine was 4 cm - 10x the size of yours!

I agree to get a copy of your pathology report! You want to know margins, and also the grade of your DCIS (low, mid-grade, aggressive). I would also want to know the hormone receptor status - if that is positive you may want to consider medication as recurrence prevention (it will also protect your other breast!)...

It sounds like you have some things to discuss with your surgeon @ your 6 month visit! But definitely get copies of your reports for your records - sometimes these things get lost/misplaced - I always feel better knowing I have a copy of all my records in case there is a mix-up!

Honestly, I think if you got 2 concurring opinions, you were probably offered appropriate treatment. But if you want additional protection/risk reduction, that is your right, as well!

Good luck!

Mary (another long-winded woman!)
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Jun 4, 2007 09:08PM bearlysane111 wrote:

Hi!
May I add my name to the list as well? I had very small microcalcifications(in the mms--not looking at the rept,sorry)and clean margins were obtained w/lumpectomy. I am post-menopausal and estrogen positive. In addition,I had atypical hyperplasia. So,my radiation oncologist suggested radiation treatments. Now,I have bee taking an A-I (Arimidex)for the past sixteen months.

Diagnosis was 18 mos ago, and I may have forgotten some of the details. I did not have any microinvasion detected around the DCIS. There are so many cases and different strategies for treatment. At first,I was told by my breast surgeon and then by the PA, that I did not need radiation. The radiation oncologist at the cancer ctr explained that I would benefit from it. I went w/his opinion as he is excellent and I think he gave me good advice.

You have been given some excellent suggestions here. I was going to suggest what Mary said that it would be helpful to know the grade. Mine was in the middle area (low-intermediate)range. I have read that higher grades are associated with higher mitosis of the cells/differentiation. My opinion is that you might feel more comfortable with more information or another opinion. My biopsies were sent to sev labs(hospital procedure) and I thought that was great to have more than one opinion--esp with DCIS.

Last,I did not know anthing at all abt this site and did not get a copy of pathology reports until my biopsy and surgery were over. I,now,have a notebk devoted just to this area of my health. That way,I can research and see my past records. I copied the mammo findings for the last three or four yrs from the x-rays. Also,I have copies of my lung x-rays and keep those with me. It is helpful when going to other drs that do not know abt me.

Best to you in your decisions. Like has been stated above,it sounds as if yours was caught very early and that is very fortunate. Most days,I forget all abt this unless I am having dr's appts or follow-up visits.

I,too,am a long-winder talker/writer/retired teacher! So,I admire you and know much about schools and good communication skills!

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Iris
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Jun 5, 2007 02:28AM Marie_S_ wrote:

Catnapping,
You really don't want radiation if you can safely avoid it...and it sounds like that's the case in your situation. Radiation has it's own potential risks that don't usually outweigh the potential benefits in most cases of small, pure DCIS. The majority of DCIS is cured by surgery alone. For that matter, a large percentage of invasive cancer is curable by surgery alone as well. Surgery, in and of itself is by far, and always has been, the single most effective treatment for most breast cancers...especially DCIS. Since you've already been told you DON'T need radiation by two different doctors (one of them a radiation oncologist??), my advise would be to listen to them because they're correct.
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Jun 5, 2007 06:08PM CatNapping wrote:

Thank you everyone for your insights and words of wisdom. I am very thankful for everything you have said and now feel much better over not having radiation treatments. I felt that was the right decision from the beginning and never questioned it until talking with the one woman who spooked me and then doing more research and reading that radiation is the norm.

First thing on my agenda is to get a copy of my pathology report. The surgeon went over everything with me and I read it in his office 6 months ago but never even thought to ask for a copy. I was so grateful to hear him say that it was caught very early and I didn't need chemo or radiation that I didn't even think of questioning anything. I do remember being told my margins were clear.

Inna - I looked up the VNPI but can only guess at my score until I have the pathology report in my hands. Thank you for pointing me in that direction.

Tamoxifin - yes I tried it for about a week; it made me so sick to my stomach I had to stop. I was never able to tolerate the pill for the same reason.

It wasn't a radiation oncologist I saw, but a medical oncologist. Maybe I should see one?
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Jun 5, 2007 07:08PM Gulfwater wrote:

I was diagnosed with DCIS (single tumor, not multi-focal) in November '02. Because the tumor was on the large side (4 CMs) and though margins were clean, one was very narrow, I did have the usual 30+ external radiation treatments. My skin got only pink and dry. No fatigue. I have only seven months remaining of my five years of tamoxifen. Just mild side effects. Has not been bad at all.

DCIS / stage 0 dx 11/18/02; lumpectomy 12/02/02; radiation 1-2/03; tamoxifen 1/13/03 - 1/12/08
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Jun 6, 2007 05:36AM Erica wrote:

If it were me, I'd still get a copy of my pathology report and seek a second opinion. Especially if you can't take the Tamoxifen, some docs might have recommended radiation. But there might be problem with doing it now, so many months later. I was diagnosed with DCIS plus a tiny area of invasion, so not having radiation wasn't an option for me. But I remember my rads oncologist saying that they like to start the rads asap after lumpectomy, just as soon as you're healed from the surgery. I'm not sure a doc would agree to do radiation so long after your initial diagnosis and surgery. If you wanted further treatment and can't tolerate Tamoxifen, probably mastectomy would be your best option. But that sounds pretty radical for the tiny area of DCIS you describe.

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree
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Jun 6, 2007 06:49AM Rosemary44 wrote:

I think I would be able to rest very easy with what two Dr.s said to you about not needing radiation. If it were me, I would be making sure I get my mammograms on time and also get an ultrasound done at the same time for more peace of mind. When you have these done, ask to speak to the radiologist so you can walk out of there without a care in the world and not have to wait for a letter to show up.

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Jun 6, 2007 02:54PM dizzybuff38 wrote:

Hi catnapping - the advice above is right on target, but if I could make a suggestion: why not post (foc) on medhelp's Ask The Breast Doctor site? A very knowledgeable bc nurse answers the posts and I have used her a couple of times after my initial treatment of lumpectomy, total axillary removal, FEC chemo and rads. I got an unusual ropey lump in the affected breast 2 yrs after treatment and did some research (not an ex-teacher, but an ex-Training Manager for a computer company)and figured it was the rare Mondor's disease. She concurred with my self-diagnosis and this gave me the confidence to ask for an urgent consult with my bc surgeon (I live in England, with socialised medicine so a bit difficult normally to see a consultant urgently). He was amazed that I knew what I had - he said he had never seen Mondor's before in a bc patient, but had otherwise, and got the whole radiology dept in to have a look and a prod. Be my guest!
The site is:www.medhelp.org/forums/BreastCancer'www.board.html She usually answers within 24 hrs, but not weekends. I am sure she will have come across your individiul situation and can give you the benefit of her knowledge and experience.
Take care and go with your gut instinct.
Liz.
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Jun 14, 2007 02:59PM MNSusan wrote:

CatNapping, I also live in Minnesota and was in the same place you are a while back. My DCIS was about 9mm, I had a lumpectomy and no radiation. I have followup every six months (mammo in Nov, MRI in May).

I think its normal to be a bit nervous. I think your treatment sounds fine.
Allergan Natrelle Style 45-700 ccs Dx 10/2005, DCIS, <1cm, Stage 0, Grade 2 Surgery 12/1/2005 Lumpectomy: Left Hormonal Therapy 12/31/2005 Dx 10/2012, DCIS, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/6/2012 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 11/7/2012, IDC, 1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 5/15/2013 Reconstruction (left); Reconstruction (right) Dx 1/2020, Stage IV, metastasized to lungs, ER-/PR-, HER2+ (IHC) Chemotherapy Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Jun 18, 2007 01:52PM Catherine wrote:

I also had DCIS (4 years ago). Mine was 6 mm. My surgeon said that the normal cutoff was 5 mm, but that he personally wouldn't not do it for 1 more mm. I checked with the oncologist and he also said it would be "overkill" for me. I was happy to skip it.

I am doing fine without it.

Catherine
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Jun 26, 2007 10:23AM UnderFortyPam wrote:

I had DCIS last year, 4mm and I had radiation. Both my surgeon and radiation oncologist agreed it would reduce the chance of reoccurance. I also had clear margins. Might not hurt to at least consult a radiation oncologist.

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