debating treatment options...

I had a diagnosis that sounds similar to yours (although there are always differences in some factors or other) -- DCIS, small amount, grade 1.  After consulting several experts, I had lumpectomy, radiation therapy, and tamoxifen.  So far everything is fine two years later.

It sounds like the chart was the Van Nuys Prognostic Index which gives 1, 2, or 3 points for four factors (size of lesion, grade, age, margin width)  and adds the points up to give a score.  You can search this board or the web for more info.  Some doctors use that to recommend treatment for DCIS but many doctors do not.  Most would agree that those four factors are important in determining recurrence risk but many do not agree with computing an index giving each equal weight.  Margin width seems quite clearly to be the most important.  The proponents of the index advocate margins of 1 cm or more.  Yours are closer to that than mine were.  Also, other factors besides the four in the index affect recurrence risk and I had several other factors that were not so favorable.  In addition, studies show quite consistently that radiation therapy reduces the risk of recurrence by about 50% for DCIS, so the recurrence risk is not really equal with or without radiation.  It is likely that your recurrence risk is quite low, and a 50% reduction in that risk may not be much.  These studies do not have sufficient statistical power to test for differences in survival but those results are pretty much equal with or without radiation. 

Since you seem to be leaning towards bilateral mastectomy, I think you should see a plastic surgeon and dig into all of the pros and cons of that in depth.  I did not want that myself, but I am somewhat older than you and might have done mastectomy if I were 42.

Hi DeeLJ: I too had DCIS....high grade, comedo neucrosis in one breast. I opted for bilat mx with immediate DIEP reconstruction. My mother died of ovarian cancer and I have many, many first cousins with BC or they've  already passed from BC.  My BRCA1 & 2 testing came back negative. I still went forward with the mx. I didn't have to have any other treatment, for which I was thankful.  It's been 2 yrs and 3 months since the mx and I don't regret doing it. 

BUT your statement that "it can't come back if the boobs aren't there" is not a true statement.  During a mx, a surgeon cannot get ALL of the breast tissue. There is always some still left, no matter how good a surgeon they are.. Just be aware that a mx doesn't assure cancer will not return, because it can..It's like having an  oopherectomy,  (as I did), but I can still get ovarian cancer. 

Please be sure you find a surgeon that has done many, many DIEP's, not just a 'few'.  It's a very delicate surgery, taking many, many hours. MIne was scheduled to take 14 hrs but ended up being 12. It's a very hard surgery and recovery is hard, but it's definitely do-able, if that's what you choose to do. Like I said, I haven't regretted mine because I know I did all I could at the time, to prevent going thru all of it again...

Please keep us informed on how everything unfolds. If you need to talk about it, please pm me and I'll be happy to answer any questions you have. Good luck and sending mega hugs your way!

Kathy

Dee, right now you're stuck between a rock and hard place.  Eight years ago I was making the same decisions as you.  When first told I had DCIS I fell into a deep depression and iimmediately wanted a bilateral mastectomy but was talked out of it by all the docs, even though they all told me it is one of my options.  It's not a piece of cake, especially if you have reconstuctive surgery at the same time, and like someone else said is not a 100% guarantee of no more bc.

The area you have is teeny-tiny, extremely small (I'm going by 1.7 mm but I'm a little confused because your signature says 1 cm).  Mine was a little over twice the size of yours and intermediate grade and most of the doctors said I could forego radiation.  When I finally decided to have a mastectomy my oncologist made me go see a social worker first.  I ended up not having one after all.  Was it the right decision?  I still don't know, I still worry about bc and I would still worry about it even if I did have a mastectomy.  Tomorrow is my annual MRI, I'm a bundle of nerves until I get the results of that.

Also, regarding the MRI - it will show if there is anything worse than DCIS but I think it can also show DCIS.  I've seen studies that show MRI's can pick it up, especially high grade. 

If you do opt for a mastectomy ask for a sentinnel node biopsy.  In the rare case where invasive cancer is found, it will be too late to check the sentinnel node once the surgery is over.

Good luck with your decision, it's a very tough one to make, I know.  And don't hesitate to get a second or third or fourth opinion.  And feel free to ask any questions you have.

Hi Dee,

I had an almost spot-on diagnosis as yours.  I went back for two lumpectomies...both with unclear margins.  None of my DCIS showed on the mammogram...so the only way they were finding it was throug the biopsies.  My doctor said that if no clear margins at third lumpectomy, my only option was mastectomy anyway.  It was at that point i decided to just get the mastectomy...and I never hesitated to saw that if I was gonna chop off one, I'd chop off both!  (Bad choice of words, i know!).   This was 3 1/2 years ago....and I can tell you now that I'm "Through it" I don't regret my decision.  I knew at the time (36 years of age) I didn't want the constant worry, and 6 month checks...and all that.  I couldn't live with that fear.  Truth is, the fear is still there....but it's MUCH less knowing that I did the MOST aggressive treatment that I could.

I had an amazing plastic surgeon and GREAT results!  I don't have nipplies anymore, and hardly any sensation.  YES...that is difficult to deal with.  No one really prepares you for that part....living with boobs that look good, but have no feeling.  It is psychologically devastating...i won't lie to you.   Like you, I went with my gut feeling.  And i believe your gut is never wrong.  Do with what YOU know you can live with, and will give you the most peace of mind.   But my advice is just be prepared that once you get through all the surgeries and have great results....you may still grieve your breasts.  I really didn't think that I would, but i did.  But would I do it again the same way?  ABSOLUTELY.

I wish you the best!   DCIS is a tough diagnosis.  Everyone thinks it's the "good" cancer.  I don't see what's good about it when we have these life altering decisions to make.

Leslie

Hi DeeLJ:

I spent all of April and most of May right where you are:  I had options, and I was trying to figure out what I was going to do; talking to oncologist, radiation oncologist, breast surgeon, plastic surgeon, survivors in a support group; researching, researching, researching (via Internet and books from library). I thought my head would explode. I feel like from diagnosis to surgery day was the hardest part emotionally. On surgery day, I took a Xanax before I left the house (my surgeon prescribed it to me when I told him I was really afraid of completely losing it on surgery day) and I was calm, in control, and very clear about my decision, no second-guessing, just a "let's get this done and behind me" kind of attitude.

I decided pretty early on I did not like the recurrence rates with lumpectomy/radiation/Tamoxifen. I am 42, so 15% chance within 15 years did not seem like good odds to me. Also, because I was small-breasted, and where cancer was located, a lumpectomy would take 1/2 my breast anyway! I am also a worry-wart, and knew I couldn't handle the anxiety of always wondering "has it come back". As someone else noted already, a mascetomy does not guarantee cancer won't come back, but my surgeon put my recurrence rate at as close to 0% as possible if I went with bilateral masectomy. (My cancer was caught very early, no nodes involved.)

So, even though it seemed like a brutal and drastic surgery, I had a bilateral masectomy with immediate reconstruction (saline implants) on May 27.  I am now two weeks post-surgery. My experience was that the first few days are pretty rough, make sure you get painkillers  that don't make you sick. The morphine drip at hospital had me vomiting all thru the night after surgery. I will never do morphine again. But each day gets a little bit better, I was not as bedridden as I thought I would be, gaining some mobility in my arms, pain levels are down. Everything feels weird, though, front part of breasts are numb, sides are painful, feels like I still have compression bra on even when it's off to take a shower. Visually, things are OK. I never gave much thought to my 34 Bs previously...now I miss them and feel like I took them for granted. My new "foobs" seem to be slightly bigger, more round in shape, there is still post-surgical swelling, particularly near my armpit area, and everyone says it can take months before everything settles into place and you see what your final result is. I have to say, though, that I could live with what I have now, if nothing changes from now on, so that is comforting. I have one thin scar running horizontally across both breasts. That's it for scarring, since I did not have to have nodes removed. I had skin-sparing procedure, but not nipple-sparing. It is BIZARRE to have no nipples. I think that is most shocking part of it. I plan to get some tattooed on eventually. I am not bruised (amazing, since I bruise easily). The stitches are internal, there is clear surgical glue on surface, so no Frankenstein look like I was so afraid there would be. I have never been so aware of my chest in my whole life. It feels like a football is sitting in my chest. It feels alien. It is hard to explain. Fatigue is another major part of the whole ordeal...even when you think you are feeling better...every little thing tires you out...I have a  very phsyical job (I'm a Fed Ex courier) and I will be off work for 10 weeks. Right now I can't imagine lifting boxes and driving for hours and doing all the running around that my job entails! But surely, since I am already doing so well after only 2 weeks, by Aug. 8 I will be ready to return, good as new. I didn't believe people when they said this surgery is "do-able" but it is exactly that, and I think I am a wimp when it comes to this kind of stuff !  That's everything I can think of for now...hope this was helpful...in the end, it is YOUR decision and yours only...Best of luck with everything...Jen

I fought with all I had to keep my breast, mastectomy was the recommended procedure.  I ended up not having a mastectomy.  So - because we're in emotionally different places about that, I'm not really going to discuss it right now - though I did do a LOT of research about mastectomy and met with a bunch of plastic surgeons.

There are two points I do want to address - 1) MRI should show if there is more DCIS.  In the past supposedly MRI wasn't good at showing DCIS, but that's changed.  (Unless they're using a really old machine or something!)

2) I'm suspicious of the comment that since you have DCIS, they won't be taking any nodes in a mastectomy.  From what I've heard, nodes are ALWAYS taken in a mastectomy.  If final pathology shows some invasive component, they won't be able to go back in to check the nodes later - and - I don't know enough to know if it's even possible to remove all the breast tissue without also removing the nodes.....

Best of luck! 

It is my understanding that the BS takes as many nodes that light up when you get the nuclear injection. If you have one light up, he takes that. If you have 5 light up (like me) he takes those. They do a quick biopsy on those to see if there is any cancer in those nodes.  If there are no cancer in the nodes, then you move on.  If you however cancer is found in the cells, that is something you need to discuss with your surgeon prior to surgery. 

It used to be standard that if one node showed signs of cancer, then all nodes in that area were taken.  However that is not always the case anymore but many surgeons still do it.

Also be aware that this is only a quick pathology report.  Nothing may show while under surgery, but they do further dissection and something can show up later.  It seem sto be rare, but it can happen.

Really until the final pathology is in, you never know.

I'm wishing you all the best!

I forgot to mention that I have a slight goiter and my doctor says he sees a lot of breast cancer patients with thyroid problems.