DCIS and Mastectomy?

You will worry, and it's totally normal. But give yourself breaks from it to be with friends, get sweaty, enjoy medicinal doses of art, have a wonderful meal. In other words, live! When you are recovering from your surgery, you will be glad you enjoyed your summer and got lots done. I'm glad I had been working out & doing lots of core exercises before I was diagnosed -it has really helped with getting out of bed lately!

I was very stressed this past couple of weeks as I was waiting for biopsy report, it finally came in on Friday and all was good.

so I celebrated with a dinner of shrimp and scallops..and a glass of wine.

yumm and along with a bunch of phone calls to pals, felt better fast!  I think we have to find ways to treat ourselfs well and agree and applaud all ideas, medicinal doses of art sound good to me....maybe this weekend

Great news proudtospin!  Congrats on the all clear!

Hopefulfuture:  This is all very helpful, sometimes I feel like I'm overreacting.  Every time I contact my Oncology Nurse, I say it's me the pain and she says you're not a pain and for some reason I just don't believe her.  But, now, with some back up from you, I do believe her.  This is terrible and stressful.  I have an appointment with a psychotherapist tomorrow, so I am feeling more peaceful about the wait RIGHT NOW, until someone asks me again or it pops into my head.   But for RIGHT NOW, having a good day, at work and grateful they are so supportive.  I love that you are going to forget about BS for a bit and let yourself live FREE for a while.  I was just talking to my sister about how I can't wait and hope that this experience encourages me to LIVE a happy, full, healthy life when I get on the other side.  Love To You, Take Care of You and talk soon.  Brenda

After everything I have read on these boards and going through 2 excisions before the UMX, if there were any chance of anything in the native breast, I wouldn't hesitate to have a MX on that side. I cannot believe how much is missed in mammos, ultra sounds and MRIs. It is kind of scary.

Mooleen...ditto....I had a mammo 6 months prior that showed nothing, not even the original lump.  And even the multiple MRI's still missed some areas that the MD found when he operated.  By having both done, if all is clear and nodes are clear, I am done...no chemo, rads or hormones...or further mammograms!  And a lot less worry.  I know it is huge surgery and hoping on the other side I will be able to say I made the right choice!

Kathy....7 days and counting

I got diagnosed in June and I have my surgery at PRMA coming up on 8/1/12.  I am having a double mastectomy, but that said, even with DCIS, there is no guarantee with cancer...some who have this surgery will find cancer in the future. It just raises our odds not to get cancer again. After my experience with the so called benign biopsy and clear MRI, I say get a LUMPECTOMY NOW. They just cannot see stuff until they have a bigger piece of you. If I had said no, I would be facing a much worse trip than I am now...as it is, I had ITC in my lymph nodes and no one knows why YET. I can't wait to get these boobs off and remade...

Lisa

Just goes to show you this is not a perfect science. I had a lumpectomy 5 years ago in the side and area I know have DCIS, did they miss it? Perhaps...

They might have missed it but I doubt it.  It could have been just a few cells then and undetectable.  

But you still had the same tissue that necessitated the first lumpectomy.  I think you have done the right thing .  It is what I would do with a recurrence.

Lannie, who told you that you will need to take Tamoxifen after a bilateral mastectomy for DCIS?  Was it your surgeon or have you spoken to an oncologist?

Tamoxifen usually is not recommended after a BMX for DCIS (or any other pre-invasive condition or pre-cancerous condition).  This is because the risk of a recurrence or new BC after a bilateral MX for DCIS usually is only about 1% - 2% (assuming adequate surgical margins).  It's true that Tamoxifen can cut this risk by about 45% - but with such a low risk to being with, the benefit from Tamoxifen is at most 1% (a 50% reduction of a 2% risk). Overall Tamoxifen is a very safe drug but like all drugs it comes with the risk of side effects. Most of the side effects from Tamoxifen affect quality of life and do not present serious health risks however there are a number of small but very serious possible health-related side effects. Depending on one's age and overall health, the risk of serious side effects from Tamoxifen can range from about 1% to about 3%.  

What this means is that the risk of serious side effects from Tamoxifen, even though very low, can range fom 1% - 3%, whereas the benefit from Tamoxifen in terms of the reduction in BC risk is only about 1%. So by taking Tamoxifen you may be putting yourself at a greater overall health risk.  This is why standard of care guidelines do not recommend Tamox. for those who've had a BMX for DCIS.  So please discuss this with an oncologist before you make the decision to start Tamoxifen.

Obviously for those who have a lumpectomy and have a greater recurrence and/or new BC risk, or for those who have invasive cancer and have a risk of mets, the benefit from Tamoxifen in terms of risk reduction is much greater. For example, if your recurrence risk after a lumpectomy is 10%, Tamox. can cut this risk to 5.5%. This benefit from Tamoxifen is greater than the risks you'd expose yourself to by taking Tamoxifen. This is why Tamoxifen is recommended to women with these different diagnoses. The benefit vs. risk equation is completely different than it is for someone who's had a BMX for DCIS.  

Greenmonkey, "Isolated tumor cells (ITC) are defined as single tumor cells or small cell clusters not greater than 0.2 mm, usually detected only by immunohistochemical (IHC) or molecular methods, but which may be verified on H&E stains. ITCs do not usually show evidence of malignant activity (eg, proliferation or stromal reaction)." ITC are classifed as pN0, i.e. those who have ITC are considered to be node negative.  Usually if someone with DCIS is found to have ITC, it is assumed that the cancer cells were moved into the nodes by a surgical instrument.  http://www.adjuvantonline.com/breasthelp0306/AjccVersion6Staging.html

damn... thanks Beesie. You are a wealth of information. I can read info elsewhere but it doesn't always make sense or stick. You make it clear.

...hi ladies, been a while since I posted, but this thread seemed like a good place to pop back in... my surgery is booked for Aug 1st, and it's decision time as I need to let the docs know tomorrow AM which surgery I'm choosing. 3 consults later, and I've been told either lx + rads or mx will result in same survivabilty, with a *slightly* higher risk of recurrence in choosing lx + rads.  I've decided to opt for a mx.  The lx is very alluring (even with the possible 5-8 weeks of rads) and I sure was tempted to go that route, but with a 3 cm tumour, a palpable lump (not always the case with DCIS), high nuclear grade showing on biopsy, dense breasts and a nagging sense of dread with the idea of lumpectomy - I've made the choice...  so now the only thing remains what kind of reconstruction.  I'm leaning toward TRAM flap, but the idea of such a long recovery is so, so scary. All will be decided tomorrow, not anticipating a lot of sleep tonight!

I did the UMX with TEs and have no regrets. I am now waiting for my exchange. I did not have to do tx and rads and I am glad about that. If I had anything suspicious show up in the other breast, I wouldn't hesitate for the MX.

i'm 4 yrs out from bilat mx and immediate DIEP reconstruction.  Had DCIS in one breast, but opted for bilateral.  Mine was high grade, comedo necrosis.  Everyone tried to change my mind about the bilat but I was sure this was the right option for me. After mx, pathology came back with 2 more spots of DCIS in that breast. I knew I was doing the right thing.... The oncologist that tried to talk me out of a bilat agreed also, After The Fact.

Good luck in whatever you ladies choose to do.. Know that YOUR decision is the RIGHT decision.