IDC still waiting for test results

tkcmom

I was diagnosed with infiltrating ductal carcinoma last week.  I met with the surgeon yesterday, meet with the oncologist on Monday but can't have an MRI until next Friday! I don't know anything about whether I am HER2 + or - or estrogen/progesterone  either.  I have been reading all sorts of info and my mind is very foggy!   Thanks for having this available to express my frustration and fear.

DiDel

tkcmom Sorry for your diagnosis. I was diagnosed with the IDC as well, It takes a while for the ER & HER2/neu status to come in. My BS gave me the preliminary diagnosis and explained he didn't want to wait for the full report before telling me. Did your surgeon give you anything else like if its well differentiated, size or grade? They should know that. I have my BS on speed dial and in the beginning I called or emailed him with every question sometimes at 5am. He always got back to me immediately, make sure your BS knows you want those report the moment they come in. Mine were emailed to me once they were completed.

You should also ask Doc for a rx for an anti-anxiety. I never took pills before but I LOVED my Ativan. It got me through all the test and waiting until surgery. You will most definitely want it for the MRI.

Good luck, waiting is the worst part. Once you have all the facts you and your docs will come up with a game plan and you will feel better although it can be overwhelming. You found us here so just remember anytime you are scared or confused or need help understanding something everyone is here for you!!!

Sending positive vibes your way!!

Diane

CandDsMom

tkcmom- just joining in...  Sorry to hear that you have joined this club as well.  I think Diane's advice is good regarding both the path report and the anti-anxiety meds.  I think all of us go through an adjustment disorder with this process.  The waiting is the hardest part.  But there are lots of us here to wait with you.  (((hugs)))

tkcmom

i do know that it is grade 3. one tumor is 1.4-2.2 cm and the other is 2.0-2.8 cm.  The pathology report also says that the tumor stains positively for CK7 and negatively for CK20, S100, TTF-1ER and GCDFP.  I have no idea what any of that means.  My surgeon was going to have the labs read by a different pathologist and possibly send them up to Stanford.  I felt comforted by his willingness to get it figured out.  Thank you for the reassurance.  I will sleep well tonight knowing I have some new friends to help me through this.

tkcmom

I saw the oncologist for the first time today.  Nice, knowledgeable and easy to talk to.  My full path results are in.  The onc believes it to be triple negative although the progesterone receptor came back 1% positive so she wants to talk to colleagues about it.  I'm not sure I want to look up triple negative because I think it's bad news.  I have a bone scan tomorrow, have to do a 24 hour pee and then PET/CT scan and blood tests on Wednesday.  I don't go back to the onc until next Wednesday.  I'm trying really hard to be brave but it's hard.  My husband is falling apart at the seams and i don't know what to do if and when i get to the point that i need him to help me.  Has anyone else felt like they were the strong one handling it better than everyone else?  Am I just in denial or do i have my rose colored glasses on too tight?  Thanks for any and all insights.

dona (tkcmom) 

DiDel

tkcmom

Well I am glad you got to talk to your onc, I hope you like him/her. Trust me I know it's hard but try not to totally stress out until all the information is in. I am not Triple neg but there is a thread on BCO for TNS and I have learned from many that you can't look at statistics they are out dated. There have been lots of advances in treating TN in the past few years AND everyone responds differently to treatment.

I know what you mean about being the strong one. Actually I am sure a lot of us do, that's why we come to these boards to let out what we can't say to anyone else. Just remember we are all here for you whatever you need. You will find lots of support here. Private message any time if you need someone to talk to. Although I am on the East coast I am always up late.

Good luck on all your test tomorrow, keep us posted.

Sending positive vibes and cyber hugs your way! Stay strong!!

Diane

tryn2staycalm

hi tkcmom:  Everyone tells me I'm so upbeat with all this going on.  I just think I'm a positive person who likes to remain upbeat no matter what.  Also IDC, Lumpectomy July 16, and just yesterday SNB.  I guess I'm just a person who deals with the facts.  Although I've had my moments I try to keep it all together.  I know it can be devastating for our loved ones.  My sister told me she is taking it harder than I am.  She thinks.  Not even close.  Some of us just deal with it differently.  My common law hubby is a pro at this.  He has lost 2 wives to cancer.  Yet he holds it together once again.  We have no choice - this is the hand we've been dealt and we must play our hand.  He was left to raise 2 small boys in his twenties, to remarry 10 years later only to lose her to lung cancer after 5 years.  Now me.  Tell your hubby you need him to lean on.   He will gain the strength somehow you will see.  Sometimes we surprise ourselves with what we can deal with if we must.  Good Luck on your journey and welcome to the club.

Cathy

tkcmom

Thank you all for your sweet words, hugs and positive thoughts!  I've been injected with radioactive stuff and am waiting for the bone scan in an hour.  I asked about the fact that I have to pee for 24 hours and if it would affect my urine test or blood work tomorrow.  The tech said my urine would be radioactive!  imagine that?  I'm feeling pretty upbeat today.  My husband and kids are very scared.  I'm a fighter, a bit of a nasty b--ch if you know what I mean.  This cancer is not going to get to me.  I won't let it.  Once again, thanks and hugs.  I feel very safe here, and that is important to me (x0)

tkcmom

Just wanted to keep everyone up to date.  I had my pet/ct scan today.  I was nervous but it really wasn't bad at all!  I was so relaxed I fell asleep!  The better news is that I got the results back from my bone scan and it is CLEAR!! Good news and I can't tell you how happy that makes me.  Thanks for the support.  Good night to all.

Dona (tkcmom)

tryn2staycalm

tkcmom - that is wonderful news- congrats! We can be nasty B's when required.  Great attitude, keep it up.

Cathy

jteach

Diane,

I remember the fear, putting on the strong face for everone else, the feeling of doing what I was told because I was basically ignorant.  I was not a doctor and I knew no one else who had been through this.

You are already ahead of the game having found this site.  Gather info and become empowered.  And I want you to know that my diagnosis was April 09.  I've been through many surgeries, chemo, rads, reconstruction, and I feel GREAT!!!!!  You can do this!  Janice

CherylQ

Hello tkcmom:  Yep, I am the strong one in my family.  I think they call women like us matriarchs, but we will get thru it.  Tell your husband you are scared too and then find that great girlfriend who listens and talk to her.  It helps.  You will be surprised at the strength your family will have because of who you are. 

bethyb11

Hello,

I am new to this as I was just recently diagnosed.  It started out with my mammogram showing a cluster of calcifications.  Biopsy was done and came back positive for DCIS. I had a partial mastectomy with frozen section (lumpectomy) to remove the .5cm tumor.  No lumph nodes were checked at that time.  Pathology report came back showing .8mm outside the duct wall which now is considered invasive DCIS???  Is there anyone out there who has a similiar situation.  Surgeon is sending me to an oncologist to review my case.  May have to have a sentinal lymph node biopsy.

tryn2staycalm

hi bethyb11 - welcome to our club - sorry you need to join.  Yes I have had a similar situation.  In late May 2010 I had a routine (2 year) mamo.  Got the call back within days to go back for special views mamo and an ultrasound.  From the results of those I was told they both showed evidence of a malignant tumor so was sent to a breast surgeon at a breast assessment center associated with the cancer center for my area.  She also told me by reviewing the tests that she believed that yes it was cancer and did a core biopsy to confirm.  The results came back DCIS grade 3 (aggressive).  She then did a Lumpectomy and I waited for pathology.  It came back much larger 5 cm. (rather than the 1.4 cm the ultrasound showed) and also IDC also grade 3.  From what I've been told there is no such thing as invasive DCIS, if has left the ducts then is no longer DCIS but IDC or in my case both.  Good news for you is that is looks like they have found it at a very early stage therefore prognosis should be favorable and very treatable.  I recently (past Monday) had a SNB and I am still waiting for the results.  I would think they may also want to check your LN involvement but if the chance is very very small due to size (caught so early) they may not.  That is probably why your being sent to the onco to get his/her input.  Good Luck to you.  Hope this helps you understand a bit better.  Your doctors will answer all your questions for sure where I am just giving you what I've heard/learned from my experience.

Cathy

sweetaerobabe

Hi  Everyone, I guess its time to introduce myself.

I was DX on Aug 17th with IDC grade 3. I saw the BS yesterday, and although I still need to have more test done, he is recommending a lumpectomy, radiation and Tamoxifen. Of course this all depends if the nodes are cancerous and if the calcification's are all in one area. He said the area of my breast he would be removing would be about the size (I would say) of an extra large egg. 

Since the Breast MRI machine is broke there, they have sent me to a different hospital for that test, and I think I will take advantage of the charity care at the other hospital and have a second opinion. As much as I would love to save my breast and my hair, I would like to save my life even more. 

I'm still in shock over all of this, I never expected to have BC at 40, I have my good days and bad days, but have been reading here when I can, I have a very supportive boyfriend who is not in the least concerned if I loose my breast, as long as it saves my life. 

Since this is all still so new to me, I better keep reading. I'm just afraid my BS is being to conservative. 

BarbaraA

sweetaerobabe - In my experience, breast surgeons are conservative and that is in your favor. This is the scariest part, the waiting. I would get a second opinion for sure. Take deep calming breaths and keep us posted on what your 2nd opinion doc says.

sweetaerobabe

I will defiantly let you know. The hospitals cancer center that I will get my second opinion is associated with Fox Chase Cancer Center. A little further from home, but my local hospital has a bad reputation. (They all do to some extent) But I know the name Fox Chase.

candyapple61

tkcmom sorry to hear that i also have been diagonosed with IDC just in the last few weeks. I am devastated and am so confused. What does this mean? Am I going to die? Surgeon has already removed the lump and got a pos that it was cancer and the report said i am in Nottingham stage II does anyone know what that means? Also says something about HER2 gene. On Aug 24 i will have surgery to collect lymp nodes and will insert a needle into my breast that i had lump removed with dye to see if there is other cancer in my body. I have only been married 3 years and am only 49 yrs old and this is my first marriage and my husband is not working in the meantime as he is the only one i have to take me to appts and surgeries. If anyone knows about all this and can share some info id appricate it. 

shelly501

Sorry to hear! I was just diagnosed with IDC a week ago. Mine is ER and PR +.  Intermediate grade. I had an excisional biopsy in July. I am having a modified radical mastectomy in Sept.

tkcmom

candyapple61

It's scary for all of us and for those of us newbies, the support here is especially a blessing.  I'm sorry I don't know about Nottingham stage II but I'm sure others may.  Everyone is right, the waiting is very hard.  For me, i found distractions help - cleaning, shopping, visiting with friends, walks anything to occupy the time while you wait for results.  I think I am done with my tests for now.  It has been 16 days since my diagnosis and I need to wait until the 20th to meet with the onc again.  I don't think i am going to get a second opinion, I trust my team.  I'm still in a positive mood and seem to be handling it better than everyone else in my family.  It does concern me a bit to hear of others who have been diagnosed after me and already know when they will have surgery etc.  I'm still waiting...  Take Care ladies.  We will fight this fight and win  

phxsunshine

candyapple61:  You are going to be OK, you are just going to have to take this one step at a time.  I was diagnosed in May with IDC and DCIS.  Had a lumpectomy, a sentinal node biopsy, a re-excision to get deeper cleaner margins (no cancer in the edges around my tumors) am now 1/3 finished with radiation  and will go on Tamoxifen for 5 years as my cancer likes estrogen.  I knew nothing about any of this either, who does?  As soon as I had calmed down enough to type, I googled every word, phrase, score, etc on the pathology report to start to gain some knowledge.  Knowledge makes it less scary and helps you understand what your Dr's are saying and allows you to ask ?s.  Does your HER say positive or negative?  Google Nottingham score.   All these different numbers, etc give you and your Drs the info they need to know how best to treat your cancer so you will live a long time.  I will also recommend 2 great books to read: "Dr Susan Love's Breast Book" by Dr Susan Love and "The Breast Cancer Survival Manual" by John LInk MD .  Found them both on Amazon and they can be in your hands in a few days.  Lots of good info in there that I have read and re-read and re-read as my path unfolds.  Remember that that little shit cancer has been in you a long time and the only thing that really changed in your life is you now have knowledge you didn't have a short time ago.  It would have still been there growing, but now you can kill it, because you have knowledge.  That you found your way here is good, lots of good info here and you are not alone.  We will all get through this together, I promise.

bethyb11

Hi Cathy,

My doctor mentioned that since I have had trauma (surgery) to my breast that it may be hard to find the sentinal lymph nodes and that she may have to go to the auxillary nodes.  I'm just wondering if your doctor mentioned anything like that to you before going for your lymph node biopsy?  Thanks for your help.

Bethyb11 

tkcmom

Just wanted to update you all.  I am triple negative, IDC stage 3.  I am hopefully going to get into a clinical trial at Stanford but if not, I will start TAC chemo next week.  I'm feeling pretty upbeat about it right now.  I do have a question to put out there... My bone scan came out clear but my PET/CT scan showed areas of activity on my spine.  My onc is not worried as she says the bone scan is a more reliable test.  Anyone out there have any similar experience or knowledge?  Thanks again for the support and friendship.  Sweet dreams to you all.

tkcmom