just diagnosed...whats next

Zlota-- I'm sorry you're joining us, but this is a good resource. I only discovered it after I had my surgeries and wish I had known about it to better prepare myself with questions for all my doctors.  I was 43 at diagnosis, and with a small child so I was very worried. My BS recommends that anyone under 50, even without a known family history, do genetic testing. This helped me decide if I should do a uni or bilateral mastectomy (I tested BRCA negative but my grandfather had pancreatic cancer and I think there are gene mutations left to be discovered). I also had issues about tamoxifen (clotting factors) so in the end I went with the bilateral rather than take the drug to prevent bc in the remaining breast.  While I waited for my surgery, I got a 2nd opinion-- the other BS verified everything the first told me, but it just made me feel better about my decisions. After the surgery I had a 2nd opinion on the path report to be sure everything was caught, and I had a second opinion from an oncologist (different hospital) to be sure I had the right follow-up plan. It's overwhelming having to navigate all of these doctors and tests, so always bring someone with you to listen and take notes and ask all the questions you want-- 2 yrs later I'm still asking questions about my path report because I was too emotionally drained to think clearly at the time. I also talked to a lot of women about their reconstruction and what the surgeries were like so I wouldn't be surprised by anything-- some even share their pictures.

I did all my crying in the car so my daughter wouldn't see me.   I also exercised my arms a lot (swimming is great) before surgery because the SNB leaves you with a stiff arm-- get physical therapy when the BS gives you the all clear-- it feels wonderful (massages) and you regain mobility much sooner-- and the PT will talk to you about reducing your risk of lymphedema (removing nodes, even sentinel nodes, does put us at risk, though our drs. always downplay this).

I don't mean to overwhelm you-- I just want you to feel prepared at your next office visit. Please keep us posted.--Julie

it wasnt that long ago that your post sounded like me. It is the most frightening part, the beginning. none of us wants to be here.  so research  and research and talk to people and find the right doctors that you feel comforable with. If i didnt go the city for my treatment i wouldnt have been able to do mammosite (for older women with small size cancer)... radiation... Always in the back of my mind is that will the cancer grow to stage IV. it is unlikely. and you will live to tell your children about this. but it changes YOUR life forever. changes in lifestyle and changes in how you think about the future.. but you have a future...

my first thoughts when I heard cancer was to take them both off.. who needs them.. but i knew that after time,,,,,, it woul dbe harder to move on and with research that it was overly dramatic.. so i had a lump and a week of radiation and tamoxifin.. and feeling great. My surgery was mid June.. End of July i was sipping Pina Coladas on the Key west beaches.( you will read a lot about whether to drink - i dont drink often but damn it i am going to drink when the situation is perfect and it was perfect)...

we are here...

It's absolutely normal to be scared, a little panic stricken and overwhelmed at this point, but this is not a death sentence!  Take a deep breath and exhale, three times.

I was diagnosed 5 years ago, grade 3 with comedo cells and necrosis.  Had a lumpectomy, rads and finished up my five years of tamoxifen the beginning of July.  I am doing fine.

I do think the genetic testing is in order, and because of your age I would also want a bilateral MRI, if you have not already had one.

Education is key, but I advise sticking with the main sites, like this one, Komen, ACS and Living Beyond Breast Cancer.  One of my favorite sites when I was diagnosed was dcis.info.  Ask for and keep a file of all pathology reports and any others from the time you are diagnosed. There will be two pathology reports, the initial from the biopsy, and the report from your excisional.  You may very well want that information years from now.  This is recommended by the National Cancer Institute and many of the cancer advocacy groups as too many cancer survivors do not have the information to share with doctors treating other aspects of your health years after treatment ends. Watch some funny movies, do retail therapy, get a massage or a mani-pedi.  Humor is wonderful medicine, and it really helps to get pampered during this stressful time.  Cyber hug!

zlota,

the beginning is the highest anxiety. i can't answer that question about the change after lumpectomy, sorry.

what i do want to say is 1) get a second opinion----no matter what! {my first breast surgeon (BS) is top of the line in NJ and most dr's wives in the area go to her and i still went for a second opinion.} 2) absolutely ask for an MRI of both breasts. 3) take someone with you to your appointments that can keep it together and pay attention. if you can't take someone with you, bring a tape recorder. 4) keep the war stories that non breast cancer people tell you at bay and do not let those stories sink into your head---everyone is different.

my BS and Oncologist told me in the beginning to take one thing at a time. whatever is on hand for that day, focus on what needs to be done.

i was a nervous wreck and couldn't do research. my friend researched like crazy when she was diagnosed so everyone is different. you have to do what feels right for you.

take one minute at a time. try like anything to keep the sad thoughts out of your head. they will do you no good.

you are so not alone but it could definitely feel that way although you're surrounded by love and support from your family & friends. take one thing at a time. good luck.  

Hi zlota,

          Your situation is just like mine..I just diagnosed with DCIS too..I am 52 and so alone except my husband..I am so far away from my family and feeling so depressed..I would like to hear from everyone here who has the same situation like ours..Am so scared to death too..Me, i have to wait for another 3 weeks for the surgery, because i developed a lump after the stereotactic biopsy and my BS told me to wait till the lump subside because it will interfere with the removal of the tissue around the area where they saw cancer cells..I have pain in my breast and back going to my arms constantly..I don't know if this is due to my biopsy procedure..I am praying for you that everything will be fine..Please keep posted so i can get some info on what to do too..It's killing me slowly knowing that cancer is the death sentence for me..Please keep in mind that you are not alone and am thankful that everyone here is very supportive..Please help us get through this..My prayers to all!..GOD BLESS!

I live in Massachusetts how about you?..Keep positive, i know  its easy to say, i am too scared to death but I trust God..I am praying for you too because we are on the same situation..Mine too is not that sure, coz the surgeon told me that he doesnt know up to what extend the cancer cells has in my breast because its in the end of the film..And he said that he can't be sure if there is invasive kind of cells inside so its freaking me out..I cry a lot, knowing that something would get wrong and everything will crash..I am also so weak but i try to be strong to fight this..Hold on to almighty God that nothing is very serious in your part..I hope yours too would just DCIS coz they said its still curable..I really understand your feeling..We'll be praying for you..Keep posting!..Take care and GOD BLESS!

Ziota,

I just bumped a post from Beesie on understanding DCIS.  Look under the threads for it.  You'll find it full of information and reassurance.

Best,

Amy

Zlota, Sending you positive energy that all went well with today's surgery. Yes, been there too, and I cannot stress enough how much comfort I found to post and read posts during the waiting time between surgery and final pathology report (seemed like years, think it was ~2.5 weeks or so). 

Carolyn, sorry that you've had to join us but I'm glad that you found us.  I'm a bit confused by something you said though.  You mentioned that during your first lumpectomy, some invasive cancer was found.  But then you said that your doctors are assuring you that you are lucky to have DCIS.  If some invasive cancer was found, then your diagnosis is no longer DCIS.  I know this because that's my situation too.  I had a 1mm microinvasion of invasive cancer, along with over 7cm of DCIS, and my diagnosis is Stage I T1mic.  This is called DCIS with a Microinvasion, but it's actually an IDC diagnosis; it's not DCIS, which is always Stage 0.

For those of us with even the tiniest amount of invasive cancer, no matter how much DCIS we have, our diagnosis and staging changes.  The good news is that with early Stage I invasive cancer, with a T1mic (1mm or smaller) or  T1a (>1mm but no >than 5mm) tumor, the prognosis is still excellent.

zlota, you've received a lot of great advice.  To your question, my understanding is that the initial diagnosis changes from DCIS to something more serious after surgery in about 15% - 20% of cases. Most of the time - about 80% - 90% of the time - all that is found is a microinvasion or a very small amount of invasive cancer (no more than a T1a tumor).  If that happens, it's unlikely to effect your treatment plan, and as I mentioned to Carolyn, those who have this type of diagnosis still have an excellent prognosis. (((Hugs))) to you, and hope all went well with your surgery!

Zlota - I'm trying to put the right words together, something that I would have wanted to read when my BS told me that I was going to have to go under general again because some IDC was found in my supposed-to-be-only-DCIS lumpectomy pathology and they now needed to check my nodes-- something to help one catch their breath. This is such a head spinning process, just when you feel as though you're able to comprehend the news, then BAM something hits that throws one off again.

What I can say is that this is truly among the worst time in the process. Testing, testing, more testing, and waiting for results. But it is so much better to get this information up front, before moving forward with a plan. My BS insisted that I undergo genetic testing, in addition to both stereo and MRI biopsies, and although the waiting was really hard, it did help to better understand what we were dealing with in my breast. Once the plan is in place and you are actively moving forward, you just go into a mode -- a surviver mode -- and the doctors do their things. I promise you that you will get through this awful process and in not too long, you will be like me and the others here, and you will be through it and aching when you read a post from someone who is beginning the process.

Will be thinking of you as you await the stereo results.

I had Grade 3 with necrosis, no evidence of invasion.

I know you really can't relax until you know what your own pathology report says, but just because you have high grade doesn't mean you already have invasion.  Statistically, there's a much greater likelihood that it's still contained in the ducts.