Tough choices

TY ladies. As we all proceed with our surgeries treatments, I am gald this thread was started as it has given me moments to pause and think about how I wish to proceed. So thankful to have a BS who is guiding me and not imposing. That said, I had new information this weekend. Of which it will have to play out....

My sister had been called back for a dx mammo. She is now scheduled for a biopsy 2 days after my SNB. Mixed feelings and emotions coming into play, however we are both determined to assist each other in this.....however, we need to. 

She was debating whether to tell me as I have had a full plate......knowing I was trying to make sound decisions whether to have a BMX vs UMX weighed in on her telling me about the biopsy. (She would have liked to wait for definitive results before telling me anything).

Problem is she has one area of mircocalcifications, same breast and exact spot as one of mine. 

However remote the possibility and conincidence of it all.....I am fortunate that there will be time between her biopsy and my surgery to assess this newest development. 

All negativity or positivity aside.....this is just too coincidental.

Another layer to add to the toughest of choices once again........

Waiting for her results is going to be more agonizing than waiting for my own.......

She has 3 young children and is in grad school.......

Saddened, but happy she didn't wait longer to have this done.

She remarked I am her warrior.....because she may have put off her mammo...to see me through my surgery.

I am so glad she didn't......something told her not to.........

Ty for letting me vent....as it is all I needed to do for now.

TY for sharing your thoughts and choices too.......it really does help.......

I just posted in DCIS - so sorry for the repeat info... they've given me a plan for lumpectomy and radiation... I asked about mastectomy, doc said no - unless BRCA testing comes out positive, then the game changes - hence the 8 week wait for lump removal...also wants to do a sentinel node biopsy... I thought the choice between lumpectomy and mastectomy was more patient directed?  Was I wrong? Not that I want a mastectomy if I don't need one, but I don't want a lumpectomy and then a mastectomy... My MOL had breast cancer twice and had to have both breasts removed - but at two different times 5 years apart (1st DCIS, then 2nd IDC) - we're not blood related so that's not an issue - but watching her go through that twice is not something I want to experience - especially on the same boob...  ugh, and here I thought today the clouds would part and all would be revealed!!

It was explained to me that all the tests you have before surgery are just a "guess" at what is in there.  THey dont know anything for sure until the lump/breast comes out. Did you have a contrast dye MRI?  I agree, get a 2nd opinion.  

Hey Ottawamom - have you meet with Medical Oncologist yet?  They will give you stats and a better understanding of your path report.  Just a thought.  Since you have all this time to sit and wait.  

Right........thats right.  Do you trust your surgeon?  I dont think it would be terrible to do a Lx.....and then go back and do a MX if you need it.  You cant undo a MX.  I had a great surgeon who knew i wanted to save my breast.  There were a few times I woke up and wondered if I was doing all I could with a LX.  But my cancer was very very tiny, so I feel good about my decision.  You need to be able to sleep at night.....I knew i made the right decision.  I also had a great radiologist who did my biopsies, who spoke off the record several times with me.....her confidence in my decision helped me a lot, esp on days i was freakin' out.  You can always ask to speak to the surgeon AGAIN, to ask more questions -thats what they are there for.  And get 2nd opinions.  Good luck with your decision - get as much info as you can from the doctors youve seen.  Go back and ask for more.  Youll know in your gut what to do when the time comes.   

Excuse me, msmatanzas, but I have been researching DCIS for over 6 years and it absolutely is breast cancer. DCIS cells are cancer cells with virtually all the properties of any other cancer cell.  The single difference is that DCIS cells are pre-invasive cancer cells, located within the milk ducts of the breast and without the ability to move beyond the ducts. But like all other cancer cells, they can multiply and spread uncontrollably, within the ductal system of the breast.  And with one final molecular change, DCIS cancer cells develop the ability to break through the wall of the milk duct and at that point in time, change from being DCIS to being invasive cancer.  

But don't take my word for it:

Ductal carcinoma in situ (DCIS) is the most common type of non-invasive breast cancer.  http://www.breastcancer.org/symptoms/types/dcis/

Carcinoma in situ  This term is used for an early stage of cancer, when it is confined to the layer of cells where it began. In breast cancer, in situ means that the cancer cells remain confined to ducts (ductal carcinoma in situ)......Ductal carcinoma in situ (DCIS; also known as intraductal carcinoma) is the most common type of non-invasive breast cancer. DCIS means that the cancer cells are inside the ducts but have not spread through the walls of the ducts into the surrounding breast tissue.  http://www.cancer.org/Cancer/BreastCancer/DetailedGuide/breast-cancer-what-is-breast-cancer

Ductal carcinoma in situ (or DCIS) refers to the most common type of noninvasive breast cancer in women. In situ, or "in place," describes a cancer that has not moved out of the area of the body where it originally developed. With DCIS, the cancer cells are confined to milk ducts in the breast and have not spread into the fatty breast tissue or to any other part of the body (such as the lymph nodes).  http://www.imaginis.com/breast-cancer-diagnosis/ductal-carcinoma-in-situ-dcis-3

DCIS is considered the earliest form of breast cancer.  http://www.mayoclinic.com/health/dcis/DS00983

Yes, there are some within the medical community, Dr. Susan Love being the most notable example, who suggest that DCIS is not breast cancer. These people tend to be vocal in the media but they are far outnumbered by the many experts who agree that DCIS is breast cancer, caught at it's earliest stage.

Many, if not most, types of cancer start at a pre-invasive stage.  It seems that only with breast cancer is there any debate as to whether this early stage cancer should be considered a cancer or not.  I've always wondered why this is.  My guess is that by declaring DCIS to not be "cancer", it significantly reduces the number of cases of breast cancer that are diagnosed, and that I think is the objective of those who say that DCIS is not cancer. 

LAStar  - hmm, that could be it.  I'm going to add that one to my list of questions... (which is really growing).

agrp - that's my crux, I can't change my mind every few minutes because I don't actually think I've been given a choice (and I'm not sure if it's because I didn't ask, or they think this is the most obvious/best plan - which is a question on the list as well ) ... so for you, no rads then?  just tamoxifen?

It's amazing I really thought that I had it together at the appointment and that I had asked all the questions, but once I atually started to process the information at home I realise I was a textbook patient - nodding and responding, but not really grasping or understanding enough to ask follow-up questions. Thank gawd they have the outreach program with the nurses, I can see now why that's so critical.

Beesie - thank you for weighing in, you are held in high esteem on these boards and it's comforting to know that you continue to follow this thread.

Joining in, although my mental state is questionable today.....very tired!  I am recovering from LX, which went very well except I didn't want to wake up from the general anesthesia.  The high grade and comedonecrosis of my DCIS is what was confusing as far as what to do.  Sort of like having the worst of the best all at the same time.

OttawaMom, you asked about the ER/R status and shouldn't you have that info.  My ER/PR status took longer than my original biopsy report, I got this info about 6 days later on an addendum report.

My MRI prior to surgery indicated no other problem areas, and so I had LX with a wire localization, did not have a SNB. Just heard that my margins were clear, no more surgery required, yes!

I've been in such a state of "high anxiety" that I am now crashing.  If I can be of any help with questions regarding my experience, I'm happy to do so.

Two comments to this thread...

1) I was treated at Sloan Kettering and had consults at Mt. Sinai Breast Center-- two of the top institutions in the world.  Both absolutely consider DCIS cancer.  It is "in situ" and has not spread beyond the milk ducts into breast tissue...but the cells inside the ducts are cancer cells with the potential of spreading if not addressed in some manner.

2) @ottowamom - i was diagnosed in March with DCIS, with some foci of LCIS in my  left breast.  it was small and in one quadrant.  I was BRCA negative.  All of my consults advised that my cancer could be effectively treated with LX and RADs, but that MX or BMX was also an option.  It was left to me to decide.  I opted for BMX because i wanted to avoid RADS on my left side, i am relatively young, and am felt that psychologically it was the best option for me to be able to move on with my life and stop thinking about BC.  I have no regrets.  Different women with the same diagnosis make other decisions for equally valid reasons.  It is most definitely your choice.  there is no one right answer.  only your answer.

Hi Andrea, I was also trying to decide if I want a mastectomy or lumpectomy/rads/tamoxifen.  After reading what was involved in a mastectomy, I just don't think I could handle the recuperation time at this point in my life.  So I am choosing lumpectomy and rads.  Don't think I will do tamoxifen at this point, however everything depends on what they find when they open me up and get the pathology report back.  I am using a surgical oncologist, not a general surgeon.  Good luck to you.

I thought I had is all figured out, they said the DCIS was a stage 0 and I would be best to have a lumpectomy with six weeks of radiation, I was scheduled and all set to go to the radiation oncologist on Thursday this week and to make my decision with my surgeon on Friday this week.  That all came to a crashing hault because the radiation oncologist looked at my biopsy reports and decided he wanted an MRI done.  That worries me a bit, I'm sure the news won't be better, but it could be worse and I'm trying to just understand what this all means.  I feel like I am in a bubble and everyone else around me is going on with their regular lives and mine is in this holding pattern - not sure where it's going.  But, on a good note, I found it early and I think I am just over thinking the whole thing.  I am so glad I found this forum, it's helpful hearing what other's have gone through.  I am so amazed at the strength of women! 

 I had my mind set that I would have a lumpectomy, that would only keep me out of work for a few days, according to my surgeon (lumpectomy, no lympnode removal) and then six weeks of radiation, which I could work through.  It was amazing to me that I could have breast cancer and be operated on and back to work within days, it made me feel like this was as easy has having my gallbladder out.  Now, I'm a little nervous the MRI will change all that.

I guess I would like to know what someone else has gone through that required only the lumpectomy (no lympnodes) and six weeks of radiation.  How was it?  What can I expect?  I think I am being somewhat unrealistic in my mind.