14.2 cm mass. Only visible on MRI. I'm so scared.

Becky63

I have normal mammograms & ultrasounds.  Four specialists since 11/13, because my breast was leaking.  I knew this wasn't ok.   I'm 63.  I had a lumpectomy 2 weeks ago with 5th specialist.  She dx DCIS.  THEN, insurance approved an MRI.  I just learned the results yesterday.   12 cm mass remains after 2.4 was removed with the duct.  She said I will be contacted next week by scheduling to see her.  I'm going to die aren't I?  I haven't seen anyone with a mass that large.  The pain from the lumpectomy has been increasing,  not diminishing.  I am so scared.  

juneping

Becky,

you're not gonna die....seemed like the mass was DCIS. so may be you'll have a mastectomy later. your doc will discuss more with you. take a deep breath....

Obxflygirl1

We are here for you.    Was a biopsy done?   How did she know it was DCIS, if not.  If it is DCIS, you are very lucky in that it is not invasive cancer, but confined within the duct.  If you have to be diagnosed with this beast, this is the best to hope for. 

This is the truly hard part, the waiting to know exactly what you are facing.  We've all been there and understand .   If you need help sleeping because of the anxiety , please call your physician.  This is not a time to be shy about your needs.  Put yourself first.  Let us know how we can help you.  

I'm sure others will be along to post soon.  The weekends are kind of slow on the boards so don't think we aren't being supportive.   Thinking of you for sure.

Becky63

Dr. scheduled me for a ductectomy.  She saw some tissue that concerned her, so she did a lumpectomy too.  The diagnosis was DCIS. A lot of other things too in the pathology report.  She planned on doing another lumpectomy, removing my nipple too.  The MRI was previously denied, but okay now that I have cancer. MRI revealed the 12 cm mass remaining.  She said I will be having a mastectomy.   How can it still be DCIS if it's outside the duct?  

juneping

i don't know the logical detail of how the conclusion of your dx or dx in general. but i "feel" you should be okay. i don't know if all IDC begin with DCIS but from what a MO explained to me, it seemed that way. hopefully someone knows better can explain better.

Infobabe

Becky, this is confusing.  DCIS doesn't form a mass.  It is non invasive and follows the path of a milk duct.  But if there is more than DCiS in there, that would make it different.  

Who is calling it a mass?  You or your doctor.  So you must get a copy of your pathology report.  If you live in the States, it is your legal right and many doctors just give it to you without being asked.  But get one.  And you are not going to die.

Becky63

It seems that it may have started as dcis, but has become invasive having grown beyond the duct boundaries.  How could it grow to 14.2 cm & still not be visible on an ultrasound or mammo.?  The MRI is where she saw it & called it a mass.  

Infobabe

Then I guess Becky, we just have to play the waiting game.  Your doctor sounds diligent.  Be glad she fought for an MRI for you.  It's like pulling teeth to get one these days.  

I could make some guesses but it is best to wait for the pathology report and your doctor's recommendation for treatment.  But I really don't think you are in a dire situation.

Holeinone

Becky, 

Sorry you are having to deal with the unknown. It seems like they don't know until they get in there. Having DCIS is the dx we all would like to have, if we have to get breast cancer. The big mass, is still just a mass, could be benign, or a cyst. 

Lots of woman think there tumor is one size before surgery, turns out to be something else. Waiting is a nightmare, we have all been there. 

Try to keep busy with stuff you enjoy...I cleaned closets last summer when I was going through all the tests & surgeries. Keep posting, it helps to stay sane...

NancyHB

Becky - I am so sorry you find yourself here with such a challenging question.  It sounds like you've have a rough time of it lately, getting just enough information to be scared but not enough to know what's going on.

First - yes, this area of whatever it is is big.  But size is just one aspect of a cancer diagnosis.  The other is type of cancer.  You've been told they removed DCIS, which by itself is non-invasive and a "better" type of cancer (if there is one...which there really isn't...but being non-invasive is good).   Your pathology may reveal another type of cancer - having that info will help you understand so much.

The truth is that not every cancer is seen on mamo or ultrasound.  Invasive Lobular Cancer, or ILC, forms in sheets rather than lumps; it is often not seen on Mamms or US (I have a friend being treated for this right now.  Two years of "normal" tests and finally she pushed for an MRI and was dx'd).  So yes, there are cancers that don't show up.  I'm not saying thus us what you have, but rather answering your question.  

 I hope you get answers from your doctor about your cancer soon.  And please come back and let us know how you're doing.  I'll keep you in my thoughts.  *hugs*

bc101

Do you know if you have dense breasts? That may be one reason why it was hard to see on a mammogram. Ultrasounds will show more than a mammogram, but MRIs are the best imaging test for seeing cancer. 

There is a thread here just for women with large tumors. I'll try to find the name of it for you - that might be a good place for you to start... Just knowing there are others like you will help a lot.

It seems you don't have enough information yet. Waiting is the hardest part. Hang in there! Your Dr. should explain the pathology report to you and suggest a treatment plan. And yes, it's always a good idea to get a copy of the report. Be sure to bring someone with you for support when you go - especially to those first few appointments. It's hard to absorb it when it's all so new. 

Sending hugs!

globalgal19

Hello Becky,

We've been down this road, and we feel your pain and confusion.  I had two masses, only 5.0 and 5.3.  In the end only one tumor had cancer and that bit was 2.8 cms.  

We also all wonder if we are going to die.  This has been the scariest road I've ever walked down.  Remember you CAN and SHOULD get 2nd opinions.  I saw two surgeons, and chose the breast surgeon over the general surgeon.  My cancer was both inside and outside the duct.

I'm one year out from surgery and FINE. Going thru the reconstruction process now.

There is so much to learn and understand, like a new language. 

I agree with all the comments above.  The waiting game is the hardest.  We are here for you.

big hugs,

Susie

farmerlucy

Becky - As others have suggested, take a deep breath. MRIs are notorious for false positives so perhaps there is an element of that in the results. I cannot imagine you having a tumor that size without you feeling it, or a physician feeling it in a clinical exam.  Take things step by step. DCIS can be widespread, as can LCIS. 

voraciousreader

It would be unfair to guess what is happening.  Was anything mentioned about your lymph nodes?  As others have mentioned, you can have other things going on inside of the breast that may be benign.  I will say though, mucinous breast cancer is often missed on mammography and can grow to be over 20 cms and be treatable... in fact, very, very treatable.  Probably more important than the size of an invasive tumor is the biology of an invasive tumor and even better is a non-invasive tumor.  Get a copy of the biopsy and imaging reports and ask to speak further with the doctor.  I wish you well!

Beatmon

becky63: as impossible as it seems right now, try not to be too scared. My DCIS was as large as yours..the entire duct. You may not have any outside of the duct. What the dr. May do now is want to make a plan with you what the next steps will be for your care. I did indeed have invasion outside the duct...very small areas...despite the dcis being so large. Hopefully you will not have invasion. Your surgeon will be able to explain to you what else is needed to be done, if anything. Also, as mentioned, let them know about your anxiety. There are meds for that! 

Try not to read anywhere else but here or the American Cancer before your appt. , the internet can scare you to death with false facts. Best of luck.

The1toC

Becky welcome to the cancer club, so sorry you got to join. 

14cm? Me too.

I had dense breasts so had annual mammograms and annual ultrasounds staggerd by 6 mos., for 4 years. In July 2011 a 6 mm lesion was seen biopsied and my journey began. I had NO symptoms at all. My gut was YELLING that this was bigger than anyone realized. I had a hard time convincing my surgeon to do mx since it seemed lumpectomy was appropriate. My surgeon couldn't hear my gut but respected my decision. The day after surgery he came to my room and said "that was the biggest tumor I have ever removed, how did you know?". I had no answer. The path report came back 14.1 cm. No I am not getting mm and cm confused. My surgeon got clean margins! Some +ve nodes.

I know a mammogram radiologist and pulled a favor if we could review all my previous breast imaging given what we knew after surgery; I would not think of suing since I really didn't believe an error. The cancer really couldn't be seen until it finally was.

I still can't wrap my mind  around my breast hadn't really changed or enlarged or grown carbuncles or something suddenly so it must have been the very cells converting but why not picked up on imaging? No one knows.

I can say in retrospect that I noticed 2 things. One, my own personal scent had changed to a bit onion garlicy and two, that when out in the sun that summer just before diagnosed, the sun felt caustic on my skin like acid. I guess my cellular repair wasn't working good.

Next month will be 3years since diagnosis and I am on the otherside of surgeries, chemo and radiation. I had my DIEP reconstruction 4.5 wk ago and the surgeon sent a node and breast tissue (because I forgot to tell him NOT to send it because I dontnwant to know!) The call came that evrything was clear. Of course I was happy! And also was happy to share with my original breast surgeon who I privately call "Dr. Savedmylife".

I wontget into it but I have had so many wonderful experiences and opportunities since being diagnosed, most that would not have happened without the cancer experience. I know that one day my life will end but today I am not ready-i have so much I want to do including seeing my 7&8yo into at leasttheir 20s perhaps older.

I dont know if this is true but I have heard that the chinese symbol for cancer is a combination of their symbols for "danger" and "opportunity".

Just being diagnosed is of course scary. Believe your cancer can be eliminated from your body with the skill and expertse of your health providers. Remember that you are a participant in your care. Ask questions. Ask what they would do if it were them (doesn't mean you have to choose that-in my case I would have had lumpectomy and radiation and likely not be around to write this lengthy entry tonight!)

I hope my sharing has been at least a bithelpful to you. At least know that you are not alone in this exclusive +14cm club.

I hope your journey is even better than mine!

Becky63

Thank you for giving me hope.  Most of the time, I'm still crying.  The double mastectomy is scheduled so far out, 7/3/14, and that is part of the problem.  Too much time to read and worry.