Diagnosed today....terrified

I am so sorry you have to deal with this. Please breathe! and wait for the other members who are old hands, and I am sure will reassure you. I think you will feel much better after you meet with your surgeon and have more information. (((Hugs)))

As others have said, calm down and don’t panic. If you have to be diagnosed, DCIS is not a bad thing to have - much better than the alternatives. Don’t make any snap decisions while you are still in shock from the diagnosis ... one good thing about DCIS is that you have time to calm down, research and make a well-thought out decision. Keep in mind that if you choose (if it is an option for you) a lumpectomy, you can always go back later and have a mastectomy, but you can’t put them back on once they are gone!

If you do have invasive cancer along with the DCIS, which only happens about 20% of the time (so 80% of the time it does NOT), the vast majority of the time it is a very tiny, early stage invasive cancer (which is what I had) and your prognosis is only marginally affected (e.g. go from a 99% survival rate to a 98% one). It doesn’t usually change your treatment plan much either, although IF that were to happen you would need a sentinel node biopsy.

Right now, you are in the worst part of the process - you know something is wrong, but you don’t have a plan to deal with it yet ... it will get MUCH better once you have a treatment plan in place.

Good luck with your meeting with the surgeon - if you think you won’t be able to concentrate and/or remember anything afterwards (which if you are feeling this much panic might very well be the case) either bring someone with you to take notes, or at the very least record the meeting so you can go back to it afterwards.

I wish there was a 'like' button so I could what Anniekay80 said. Being ruled by fear is a mistake when you have to make important decisions.

Kkubsky, do not rush to make a surgical decision. DCIS is not an emergency and you have time to consider what is the best route. Remember, you can not undo a mastectomy and reconstructed breasts are not the same as your own breast.

Beesie, one of BCO.s members wrote a very good post on the topic Mastectomy versus lumpectomy. I am posting a link to a thread that contains this post:

https://community.breastcancer.org/forum/91/topics/839680?page=1#idx_16

Commenting over here as well: hoping you got the shower, and the Ativan, and something palatable for dinner. (Now is not the time to worry about impeccable nutrition. If Kraft macaroni and cheese is the only thing you can choke down for the next twenty-four hours, so be it. It was popsicles for me.)

Tomorrow, the surgeon will discuss (no surprises here!) what surgery you're likely to need at this point. I can make no promises about what, precisely, will be suggested. But it mayn't be mastectomy! If they offer you a choice between various treatments, consider this carefully. As Beesie's post mentions, much of this comes down to "What decision can you live with?" (and no: sentinel node biopsies are not part of treatment for DCIS, because it has, by definition, not spread through your lymphatic system yet.)

They are removed, area get zapped with rads.

Chances are good it's NOT in the nodes because of DCIS.

and there's that too. After you get past treatment, as it's not in your face every day, as life resumes, the fear dies down. Oh, it's still there. It never goes away entirely. You can't let it wreck your life. Right now is the worst. Once you have your plan, treatment starts, it gets better. Really.

Kkubsky, just wanted to send you a hug. I know you are frightened. It is a huge word - cancer- but, you really really REALLY do have a very small likelihood of it being invasive upon pathology. It is truly not something you can control either way. As for MX vs. LX, that will be your choice to make. I chose lumpectomy because it was the least invasive surgery and I know that if it comes back or if it was found to be larger during surgery, I can go back later and do the mastectomy.

What you are doing to yourself is like getting a brand new car and then worrying about it being a lemon or breaking down BEFORE you have a chance to drive it for a little bit. Or, like getting a new job or promotion and worrying about getting fired BEFORE you have had a chance to do the job. It is just not worth it. Of course it will be in the back of your mind that it is a small possibility of it being found invasive at pathology, but the odds are in YOUR favor. Honestly they are.

Please take some Xanax or Ativan and relax a bit and stop making yourself sick. You need your strength for surgery and recovery whatever route you choose.

Hugs and peace to you!

Kkubsky -- I just read your posts and am sorry about your diagnosis. I, too, had a diagnosis of DCIS, grade 3, back in October. And, I did my share of "freaking out" and worrying. The word cancer in itself is enough. I remember that the very hardest part about what I've been through so far was the waiting game and not knowing or having a plan initially. I had a stereotactic biopsy and my surgeon went ahead and told me right after she completed the biopsy that thought it would be cancer. She was so kind and compassionate and didn't want me to have to be on edge for the next 3 days. I then had MRI which showed suspicious areas in both breasts. That's probably when I worried the most. So, I had biopsies on both and thankfully they were both negative except for the already identified DCIS. There was a pre-cancerous lesion in the opposite breast which she also removed. The worry and not knowing is awful, but usually the worry is over something that isn't going to come to pass. I would suggest also to not read everything on google. My surgeon suggested that if I was going to read anything to read info on reputable sites such as breastcancer.org or on american cancer society site. Having been in your shoes just a few short months ago, I can fully understand how you feel. It's a journey and has to be taken one day at a time. It does get better and these forums are a great place to go for support and information. You are not alone on your journey. As I've read on another person's posts, Warrior On!!!

Hugs and prayers,

Debbie

My friend with ER-/PR- 3.7cm Grade 3 cribiform/comedo-necrosis DCIS was surprised to find out she will need neither mastectomy nor chemo, though she will get the std. 33-tx protocol of whole-breast rads (prone, to protect her heart). Though the carcinoma is behind her nipple (which will be removed) and her breasts are small, she says she doesn’t mind the asymmetry and has no desire to do reconstruction. She’s 70 and has already had two stents, so even if they find IDC from the lumpectomy, they probably won’t recommend chemo. Because despite obesity her breasts are dense, they will also do a pre-op MRI to rule out having to biopsy and follow up on the other breast.

So don’t anticipate the worst about your treatment plan.

I had a LX and SNB, followed by Mammosite radiation. Also had grade 3 DCIS w/ comedo necrosis. I was comfortable that imaging (Mammograms, US & MRI) would have found any other lesions, and the SNB was negative, so no spread. Surgical pathology report didn't find any IDC or micro invasions. Any additional cancer cells would most likely have been near the lumpectomy site. So radiation that radiated out from the LX cavity was ideal for me.

While (pre-surgery) I was hoping I could have Mammosite radiation, there were a number of things which could have made it impossible. A positive SNB. If the LX cavity was too near either the skin or the chest wall. And I f there had been either IDC or a micro invasion or margins that weren't clean, we would have reevaluated.

Fortunately, the stars aligned (as it were) to allow me to have the radiation I preferred, in order to avoid radiating body parts which didn't need it.

I hope you're able to proceed without surgical surprises. But it's probably important to keep your plans a little loose until you have your surgical results.

Hoping to hear that things work out exactly as you want them!

LisaAlissa