Newlly DX with no tumor or no primary symptoms -- Shocked"

ladyb1234

I was just diagnosed with BC about two weeks ago. It has been a roller coaster ride as you all know. Went in for a mammogram in April and the mammogram saw mildly enlarged lymph nodes under the armpit but mammogram was clear. I was called back in for an ultrasound and no evidence of a lump in the breast and lymph nodes resembled reactionary lymph nodes.  Fastforward two months, I feel the lymph under my armpit growing and go in for Dr’s appt.They did an ultrasound and immediately biopsy the node.  The Drs still indicate it looks like reactionary lumpnodes.The pathology report comes back positive.I was caught off guard since I, the Dr nor did the mammogram detect a lump in the breast. Now I understand it is possible to have BC appear with no tumor. With that said, my lymph nodes are involved.  I am feeling great physically and would not have uncovered or paid much attention to the underarm if I was not instructed to monitor to see if the lump gets bigger.This is because I have no lump in the breast.

As of last Thursday I have had all my test, MRI, Bone Scan and CT scan and all show no sign of mets right now (I pick up fast in this forum –smile).  I had my consulting session on Friday 6/20 and the Oncologist wants to conduct another CT scan as they see a spot on the liver but believe it is hemangiona. Anyone have experience with hemangiona – this is new to me.The new CT is schedule for Tuesday.

I am very concerned that they will not schedule me for surgery to remove the affected lymph nodes until July1^st, which seems like a long time since DX was 6/9 and  we know the cancer is in the lymph node via the biopsy. Is this a long time from dx (again I catch-onfast – big smile) to surgery?  Thanks in advance for all of your support as we all walk this journey together.

I have shadowed this forum starting a few days after my diagnosis and thought it was time to truly engage as the support is awesome and information is really helpful.Thanks ladies for sharing your stories, experiences and willing to support the newbies as we start on this journey. 

PS: I dont' have much on my profile since information is coming in so fast.   

farmerlucy

Hi ladyb - So sorry for the terrible news. It must be frustrating to have affected nodes but not have a known tumor. It sounds like your doctors are taking this very serious. I'm glad you found us. Considering joining the July surgery group.  It really helps to be with others who are going through the same thing at the same time. I found it very supportive. I hope you get answers very soon. Gentle hug to you.

Bren58

ladyb, first off, welcome to BCO, even though I know you would rather not be here. It does sound like your docs are taking this very seriously, but also are trying to be very thorough in their pre op testing. There is no undoing surgery once it is done, so they may just want to make sure that the surgery they are planning is the correct one. Also 6/9 to 7/1 is really not all that long. My first dx was in late May and they couldn't get me scheduled until the end of August. My second time I found the lump in early 2012, saw doc in May, then a second doc in June and surgery wasn't scheduled until September (neither doc thought was BC, just scar tissue). I know waiting is the hardest part, because you just want it over with and you want the cancer gone!

Keep reading here, but remember that even though we all have BC, we are all different in how we approach it and what our treatments are. Find a good team of docs that you trust, and try not to search Dr Google.

There is a great thread here called "What I wish I knew at the beginning of treatment" and it has some very good information.

Keep us posted.

ladyb1234

Thanks Bren58, Farmerlucy andTeka for the pointers, discussions to review and groups to join. I also thank you for your support and kind words. Bren58, my doctor and her staff ask me to stay off Dr.Google too. It was hard at first but I do stay away now as it brought my spirits down really, really, really fast. As you stated none of us wants to be a part of this elite club; however I am so happy that BCO is around to allow an avenue for discussion, information sharing and support from and to each other. I can't give much support now as I am still in shock, but hopefully I can give back to this community soon.

Thanks Teka I needed that hug this morning! Bren58 - I will concentrate on your scripture and carry it with me today if my mind begins to wonder  "I can do all things through Christ who gives me strength!” Amen.

Also, can I change my post name -- didn't realize until this morning I used the group forum name?

TB90

As for the liver issue, Percy experienced this too.  If you search her name, her posts will be listed and you can find more info about her experience.  She is lovely and would respond if you PM her also.  Very common to have these and they are almost always benign.  Good luck on your journey and as you are a quick learner, you will gain so much from these forums.  They are a blessing!

voraciousreader

Register at the NCCN's website...if you haven't done so already.  Read the professional (red logo) version of the breast cancer treatment guidelines including the footnotes and discussion at the end.

I wish you well!

Kicks

I'm surprised you are having a second CT instead of a PET.  In my case, the PET 'lit up' on an area along my lower jaw.  I was in with an ENT the next day for a biopsy.  He felt sure that it would come back 'fine' - it did, the next morning the path was in and it was clean/clear.

You haven't said what your DX is.  That makes a huge difference in what the TX (treatment) plan may be.  IBC does not 'show' on mammo/US.  The SOP for it is neoadjuvant (before surgery) chemo to get it to form a 'lump' and shrink.  It is becoming more common with other types of BC to do neoadjuvant, eespecially when it's already known that there is node involvement.

With a little more info, it might be easier to get more input from those who are/dealt with what you are.  I do understand that info for Profile can change (sometimes rapidly) but it does help with replies.  We are each so unique.

ladyb1234

Hi Kicks, I have not been given the official DX and information I have is that my biopsy returned positive for cancer cells in the lymph node.  My MRI, CT Scan and Bone Scane have come back clean.  MRI did not show any tumor or lump and they will provide official DX soon.  surgery is on 7/1.  Does that sound right? When does the official DX usually occur?  Additional CT scan  scheduled for Tuesday is to review the hemangiona that they spotted on the liver to make absolutly certain it is a hemangiona and nothing more.  That has me a very worried.  Can they tell without the surgery the # of nodes invovled?

Voraciousreader I will resiter at the NCCN's website to gain more informaiton.  TB90 I will reach out to Percy. 

Am I asking the right questions, am I getting the right info in a timely manner, do they have more than they are telling me, am I pushing hard enough to get the information is my main concern!  Right now I feel like I am in a web that I am trying to get all the right information.

voraciousreader

your final pathology report, following surgery, is what drives your active treatment plan.

Kicks

The biopsy would show the type (IDC, ILC,IBC).  All types of BC are NOT the same.  I can only speak for myself - my biopsies were done on a Thurs afternoon and at 8 the next morning I had the path. report.  We are each unique!  With more info, you can get more from those who are dealing with what you are .

Kicks

vorociousreader - Surgery is not always the first TX for ALL.

voraciousreader

kicks.. You r correct!  However, in this situation, she tells us surgery is scheduled shortly.  Furthermore, between biopsy and final surgery report...information might change.  Always good to have pathology report and learn about the signature of your tumor type.  But final report drives treatment decision.

ladyb1234

Hi All, quick update.  CT scan came back clear. The spot noticed on my liver during the first CT Scan was confirmed to be a hemangioma.  Spoke further with the doctor and surgery is scheduled for 7/11.   My DX will be given after final pathlogoy report after surgery as the Dr. indicated information might change and also because I have been labled with an Occut Primary Breast Cancer, meaning there is no tumor to be found anywhere which was confirmed through MRI. 

Thanks again all for the support.  Now preparing for surgery and chemo treatments then radiation, which they indicate is a must or highly recommended since the primary site can not be found.

annika12

my journey started the same way IDC  found in the lymph nodes but clear MRIs and mammograms. My surgeon finally found a very very tiny spot on the chest wall that she thought might be something and did a wire to it with MRI and then a surgical biopsy...it was tiny but still a primary tumor !! I was already at this point scheduled for neoadjuvant chemo and started to kick its .....  !! That was one crazy year ago Hang in there and hugs to you

farmerlucy

No screening saw my 1.1 cm tumor either. Family history, ALH, ADH, pushed me to a preventive mx and the tumor was found in the final path. What do you know about your breast density? I had blue ribbon screening - MRIs, mammos, ultrasounds, thermograms. That bugger was hiding in the extremely dense tissue. It can happen.