Had surgery, Don't want radiation...

"What is the recurrence rate of DCIS without radiation?"

It depends.  

There are many factors that influence the recurrence rate:

• Size of the area of DCIS.  The larger the area of DCIS, the greater the risk that there might still be some DCIS cancer cells left in the breast after surgery - and that's what leads to a recurrence.
• Whether the DCIS is in a single focus or multfocal.  Multifocal presents a greater risk because here again, there is a greater risk that some DCIS cells might be left after surgery.
• The grade of the DCIS.  Grade 3 presents the highest recurrence risk.
• The type of DCIS and particularly, whether there is any comedo DCIS, which is the most aggressive.
• Your age at time of diagnosis.  Some studies have suggested that those who are younger are at greater risk of recurrence, however I don't know if this is universally accepted or not.
• The size of the margins.  The larger the margins, the lower the risk of recurrence.  Recurrence risk will never be 0% however, even after a mastectomy.  So even with very wide margins, there still will be a small risk, particularly if the DCIS is high grade and multifocal.

Because all these factors come into play, recurrence risk is different for every one of us. Depending on the diagnosis and pathology, I've seen recurrence rates after a lumpectomy for DCIS that are as low as 3% and as high as 60%. What someone else was told about their risk might not apply to you at all.  So you need to talk to your oncologist so that you understand what your risk is, based on all these factors.  Your oncologist should be able to tell you what your risk is if you have no further treatment, what it would be if you have radiation but no Tamoxifen, what it would be if you take Tamoxifen but don't have radiation, and what it would be if you have radiation and take Tamoxifen.  With this information, you can decide which approach makes sense for you. 

Just to add to the above post, please know that having a mastectomy does not guarantee that you can avoid radiation.  Usually you can, but if the margins are too close to the chest wall, radiation is likely to be recommended, even if your diagnosis is only DCIS.  In 5 years on this board, I've seen too many women caught by surprise by this one.  They choose to have a mastectomy in order to avoid radiation, and end up needing to have radiation anyway.  It's not what usually happens if the diagnosis is pure DCIS, but it can happen and everyone making this decision needs to know that. 

My BS didn't give me an option to skip rads when I was diagnosed with DCIS 14 months ago --- my options were mastectomy or lumpectomy w/ rads -- so I cannot comment on the likelihood of recurrence without rads.

However the onc. I met with did give me an option regarding tamox. Recall her saying that it would possibly lower my risk of recurrence by half, from ~4-5%  to ~2-2.5%. So working backward, I guess I'm disagreeing with the previous post who mentioned that recurrence without rads is ~30-35%. What seems more likely is that the likelihood of recurrence was halved from rads -- so I had an 8-10% chance of recurrence, did rads to lower that to 4-5%, and opted out of tamox. because didn't and still don't think the halving again to 2 or 2.5% is worth it.

But if having done rads did in fact lower my chaces from 30-35% recurrence to now only 4-5% recurrence, then that is quite a good reason for doing rads.

Although I'm glad I did rads, I do not believe that it lowered my chances to 4-5% from 30-35%

Blondee,

I chose not to have radiation or tamoxifen after my lumpectomy for DCIS in 2007. I consulted with Dr. Lagios a world-renowned DCIS expert and patholgist who has a consulting service that anyone can use.

Using the Van Nyys Prognostic Index he calculated my risk of recurrence at only 4 percent without radiation. Because this was so low, the 50 percent reduction that radiation brings was not worth it to me. He also said that tamoxifen only lowers risk for DCIS patients by at most 2-5 percent.

Since my DCIS was only low-intermediate grade and yours is high grade, your risk of recurrence will most likely be higher than mine. However, once you know your risk of recurrence without radiation, you will be able to make an informed decision that you can feel comfortable about.

If you would like more info about the Van Nuys Prognostic Index and/or want to read my story please feel free to check out these websites. The first is an October 2010 pulbication of the latest fine tuning of VNPI data. The 2nd is my website.

https://mail.google.com/mail/?shva=1#inbox/12d3517b669989f4

https://sites.google.com/site/dciswithoutrads/home

If you have any questions at all, please also feel free to send me a private message.

Best wishes and hugs,

Sandie

I'm in the same boat with you.  Trying to decide if I want rads or not since I got clear margins and my sentinal node biopsy came back negative. You can only have it once in an area from what I've read, so if by chance another DCIS or invasive cancer comes up in the same breast then there are not as many options.  It seems like my only choice then would be to lose my breast altogether.  I'm also battling with what it can do to my lungs and heart and any other organs. I don't know if I want to trade one disease or ailment for a possible other one.  As for Tamoxifin - I had two bouts with philbities (sp?) in my 20's when I was on birth control pills.  Got off the pill and never had another problem.  Blood clots are one of the side effects, so I don't know that I want to chance that again after all these years.  I don't go to the oncologist until the 14th, so I'm going to be doing a lot of research and discuss with my husband and hope I make the right decision.  At 54, this really sucks because I'm never sick and don't have to take any medication for anything. All I take are vitamins and herbal supplements. Going from that to this was a huge leap - like jumping the Grand Canyon.  I sometimes think doing the radiation might be o.k., but other times think it might be overkill.....literally.

Blondee - You bring up an excellent point about free will. When my BS (who I knew was highly regarded) gave me the choice of either mastectomy or lump. with rads, I guess I was just so much a deer in the headlights that I chose between those options. As it turned out, 1.75 mm of IDC showed up in the final lump. pathology so my perspective on rads changed from it being my enemy to my friend by the time I started the treatments.

redsox - Are these data you are referring to just DCIS patients? Or DCIS with IDC patients? Because I cannot imagine that my circumstances would have put me at a lower recurrence rate than pure DCIS folks -- I had 1.75 mm of IDC along with the DCIS and the stats I was given are nothing as high as the 30-35% recurrence rates you are referencing. I've frequently seen stats about how lump. with rads have nearly as low a recurrence rate as mastectomy (< 5%) so I'm still wondering how rads could be that effective as to bring a 30-35% recurrence rate down to <5%.  Unless these clinical trials are for all BC patients who opted out of rads --> all people would include Stages 1-4, not just Stage 0. And that would be a big difference indeed.

Questions, data, and controversies regarding DCIS were the subject of an NIH consensus conference held in September 2009.  The program for this conference is shown at this link:

http://consensus.nih.gov/2009/dcis.htm

Numerous speakers talked about the clinical trials that tested lumpectomy with or without radiation therapy for DCIS patients (eligibility criteria varied some but all were DCIS only patients thought to be in a favorable subgroup of DCIS patients).  The data on use of radiation therapy with references is summarized succinctly in the following abstract:

http://consensus.nih.gov/2009/dcisabstracts.htm#solin

You can also read the abstracts of the presentations of all of the other speakers.  If you really want to get into this, the video of the whole conference is also available from links from the conference website -- not very user-friendly but quite fascinating.

blondee, perhaps you could post your pathology results and your age. This would be helpful to the other members, I believe.

Hi Barry

I found your case to be similar to mine.  Was your 2nd case 1 year later in the same breast?  I was just diagnosed 1 yr later in November during my new baseline mammogram DCIS grade 3 in the opposite breast which they believed was there 1 year ago.  My surgeon said DCIS tends to grow very slowly for 4-5 years.

I did not do Tamoxifein the first time either.  My MD who specializes in hormone therapy said it really doesnt do anything but damage our body.  I do a supplement called I3C which is natural and blocks estrogen from the cell receptor... apparanently its working since this time my Estrogen Receptor Test was only 10% estrogen, so my oncologist believed Tamoxifein would not benefit me...  at least that is what I believe, its due to the blocker I am already taking.

valariew, interesting. I like your doctor.



Yes, my second dx and lumpectomy was one year a part. My second dx surprised my bs because she thought she got it all, with wide clear margins. I learned that dcis cells can jump.

As for the estrogen, I' feel if they got all the dcis that estrogen isn't a problem. Why throw the baby out with the bathwater. I need what little estrogen I have left I am using diet, vitamin D, and supplements for cancer prevention. And...watchful waiting so if it does come back I will catch it early. If I am dx again in the same breast, I will strongly consider a mx with reconstruction. For now, I'm grateful for the breast I do have...hopefully I can keep them.





Deidre-blondee, I had no idea we could ask for our films. They didn't offer so I didn't ask.

Deidre, to let you know that I had the biopsy this morning. It was done at the hospital, very different than how the imaging center did it. Gosh, they treated me like I was going into surgery. It was all done lying down. What was fun about it is I got to watch it done on the ultrasound. They took two biopsies. It was painless. Then they took a mammo to see if the marker was in the right place. They asked me if I would like to look at the mammo pictures. I saw no calcification so it's probably B9. I'll find out the results at the end of the week.

Oh, before going home they said to rest for the day, not to pick up anything heavy or cook. The other two biopsies I went in and out, and they didn't really tell me how to take care of it or nothing. It was just a small simple biopsy and I went home. I thought that was typical for how biopsies were done.

Barry, glad you had a "good" experience (or at least a caring one!).  And I'm sure your a bit nervous but you have handled your situation really well and I for one wish I had been as brave as you (pushing aside the doc's opinions and replacing them with what your research has told you is right for you)... Takes a very strong personality to do that!!!  Let hope the outcome is good and that you can leave this all behind for another 6 months to a year... Take good care, Deirdre

My mom was diagnosed 15 years ago they did a total masectomy and she never had radiation. Last June she has a new cancer in the other one.  In November I was diagnosed and after seeing my mom get low grade cancer again and having to go through treatment with drugs with more side affects at an older age I am opting for the tamoxifen.  And hopefully the drugs will get better with time but I have a 23 year old and if I were her after She is done having children I would consider taking tamoxifen to reduce the risk.  If you are not overweight the side affects of tamoxifen are less. I have a 25 percent of getting breast cancer in my good boob. So I am more than willing to do the rads and tamoxifen. I am also changing my diet and working out as working out 3 X a week will reduce the risk 20 percent as well.   Just remember though those percentage numbers are not real they are relevant.  eg.  I have a 25 percent risk of getting breast cancer in my good one is a real number.  excercising will reduce that risk by 20%.  so excercise reduces my risk by 5%. TAmoxifen reduces it by  12% and the radiation reduces it by 2%.  So in combo Tamoxifen is the best thing I can do.But am 100% ER positive

I have been struggling with my next move.  I am 36 and was dx with DCIS, HER POS, Neg BRAC.  Had two surgeries to get clear margins.  I am not comfortable with radiation or Tamoxifin.  I am at a loss with what I should do.  I buried my Mom in Oct from Mets to the bone of breast cancer.  She did radiation and tamoifin.  I don't want her fate and want more info.  I feel like I am making a "life changing" decision.  I feel a little bullied myself.  Everyone saying it's "standard treatment".  My Mom took the "standard treatment and died a long painful death of bone cancer.  Any help or advice would be great.