Newly diagnosed, overwhelmed

Marly- I am so sorry to hear about your diagnosis.  There is good news though.  I have done my fair share of research lately too since I just got diagnosed in April and the five year survival rate for DCIS is 100%.  That is not to say that you only have five years, but that is all the longer they go out on this data.  You should get on cancer.org if you haven't.  I too was worried this is an eventual death sentence, and after reading more and more, I see that it is not at all.  As you can see I am stage 1 IDC and the stats are pretty similar for my survival rate.  I had a bilateral mastectomy w/ immed. reconstruction (tissue expanders) on May 21st and I feel much better than I thought I would after such a big surgery.  I know it might not seem like it now, but once you have a plan in place, (type of surgery, hormone status, etc.) it will further put your mind at ease.  There are so many women on this site that have helped me tremendously.  My doctor gave me a list of trustworthy sites (susan komen, cancer.org, and breastcancer.org...here).  Try not to look too much up elsewhere, because it will just scare you.  Anyway, I am sorry for rambling, but if you have any questions, this is the place to get answers from all types of people and different experiences.  I hope everything turns out okay for you as I am sure it will.  Feel free to PM if you need anything.  Take Care!  Allison

I won't lie and say it's a walk in the park, but no where near as bad as I had anticipated.  I have my days, but it's definitely do-able.  My husband even said to me that he thought I would be bed ridden for at least a week or too, and that was not the case at all.  I am still healing, but I feel I made the right choice.   For me, I am such a worrier anyway, that the surgery was worth it, just to put my mind at ease.  I also read that for people with early-stage cancer that the lumpectomy vs the mastectomy was only 3% difference as far as reoccurance.  So, I guess what I am saying is you definitely want to talk to your doctor about all of your options.  I took my mom and a tape recorder with me to my surgeon appointment so that I would remember everything.  And, believe me I did go back and listen to it, so I was glad I taped it.  Another thing, leave a notebook out, so when you think of questions (no matter how silly they might seem) write them down and take them to the doctor with you.  This is not an easy choice and you want to make sure you get all of your questions answered.  I went to the doctor with sooooo many questions.  You should look in the DCIS forum on here too.  There you can talk to people with your exact diagnosis.  Another thread on here that made me feel better while I was waiting was the inspiring stories thread.  Try to avoid reading too much on the other threads until you know for sure what you are dealing with, as it tends to make you worry more (or at least for me it did.)  Again, if you need anything at all you can PM me as well.  Good luck and I will keep you in my thoughts and prayers.  Allison

Marly - you need to get a copy of your pathology report, and then take the time to learn what it says - which is difficult and confusing but do-able.

I'm confused as to your diagnosis.  You say you have DCIS, Stage 1.  That's a contradiction in terms.  DCIS is a non-invasive cancer, sometimes referred to as a pre-cancer.   Therefore, as long as it's all DCIS, it's Stage 0.  DCIS - Ductal Carcinoma in situ.  The in situ means it remains contained within the milk ducts and has not yet evolved to the point that it can break through the wall of the duct and involve other tissue....it can't yet spread.  So, as long as it's all removed, you're NOT going to die of this.  (Unless you get an invasive recurrence...you should discuss all this and the relevant precentages with your Dr.)

Stage 1 refers to the earliest stage of an invasive cancer, usually Invasive Ductal Carcinoma (IDC), sometimes Invasive Lobular Carcinome (ILC), there are probably other kinds. Is that actually what you have, or is it a typo?

That said....DCIS comes in different Grades: Grade 1, Grade 2, Grade 3.  If yours is a slow growing type, you probably have Grade 1.  Grade 3 is aggressive and Grade 2 is in-between.

My understanding is that in most cases, and you should discuss this with your Dr., lumpectomy + radiation gives you about the same risk of recurrence that a mastectomy does.  Those percentages will vary with a woman's specific pathology, and I strongly urge you to understand exactly what your pathology is, what it means, and what your recurrence risks are with each type of treatment.

Mastectomy does not eliminate the recurrence risk completely, it will be minimal though - something like 1-2% if I remember correctly.  Lumpectomy (radiation may or may not be needed) might bring you very close to the same risk as with mastectomy - let's say it's still a bit higher, maybe 4%.  ASK YOUR DR.

I just think having a mastectomy should be a really informed decision, not something any woman ever does out of haste and fear.  Sure, sometimes it's the best course of action.  But you can't undo it.

Since you're listing your diagnosis as DCIS, Stage 1 (which doesn't make sense to me); I can only think you're not at the point yet where you really understand what's going on, what your choices are, and what it all means.   Please, please understand what exactly is happening in your body before you decide how you want to approach treatment.

Like everyone, sorry you signed up for the club.  But now that you are here, take deep breathes.  As my onc and surgeon both said, this DCIS stuff, this is not going to kill you.

first and most important thing, if what you have is DCIS [and sweaty spice is correct in her assessment of Grade versus Stage], you have ample time to research, think and make decisions.  Even if you have grade 3 DCIS [like I had] there is no need to rush.

second, Research EVERYTHING.  Not just reoccurance rates but all the information you might need about radiation, MX, reconstruction, etc.  For example, you say your doctor said with MX there would be no radiation.  My understanding is that is not always true and that is something they can't really tell you until its over.  In some cases, women with MX still have to have Zaps.  If Zaps scare you, you should know that many many women go through them with little or no side effects.

Third, Get a Second opinion on your diagnois, on what to do, on everything.  Even if you love your breast surgeon, take your papers and go see another one. And if you are even slightly inclined to MX --or if you are small on top and concerned about how you will look post surgery---see at least one plastic surgeon who specializes in breast reconstruction BEFORE you make your final decision.  Breast surgeons are great but they aren't plastic surgeons.  They don't know the gory details of plastic surgery like how all the types of reconstruction each have their own impact on your life.

Finally, Breath deep.  It will be alright.

I am newly diagnosed, however, as a certified lymphedema therapist I have a different view of how I am proceding with treatment.  I have indicated to my surgeon, since i have DCIS, I only want wide excision of the area with large clear margins, as close to 10 mm as possible, no sentinal node biopsy , no radiation, no reconstruction. Will be vigilant with mammo's.  I do not want to alter the architecture of my axilla as this leads to issues later on that someone like me has to treat. I am however, considering tamoxifen for I am premenopausal.  I won't remove my ovaries.  I will follow up with gynocological checkups, eye checkups, and blood work up for clotting factor and liver function.