Just Diagnosed and Now waiting

Debsta

Hi everyone.

I got my news on December 27th and I'm still not sure what is really going on. I had gone to my primary doctor right before Thanksgiving because I had a lump in my armpit. She was not really concerned and was convinced it was a cyst, but sent me for an ultrasound and mammogram, neither showed anything unusual. She then sent me to a general surgeon and that's where things started getting strange. The General Surgeon started talking about my ultrasound and how it only showed an enlarged lymph node, but it wasn't abnormal. She then looked at my armpit, and said the ultrasound technician did not take the correct image, but that the lump was just a cyst. She gave me the option to have it removed, and I agreed it was probably best. Throughout all of this everyone kept saying "its most likely not cancerous".

I went in for the surgery to remove the cyst on December 19, expecting as she called it "a pinch and a bee sting". She said there was probably no reason to send it to pathology, but it was up to me. I asked her to send it, because you just never know. During the procedure, she found a bunch of scar tissue, even though I have not had any cuts or surgeries in that location, and said, it was most likely due to ruptured cysts in the past, and she agreed that sending to pathology was necessary now, because it was slightly unusual. When complete, she told me that I most likely would not hear until the following week due to the Holiday.

On Tuesday the 26th my phone rang with a number I didn't recognize. Turns out it was the surgeon asking me to call her office in the morning. I knew she was technically on vacation, so I immediately started thinking the worst. After a bit of phone tag, she called again on the evening of the 27th and told me the news and that the breast center would call me in the AM. I ended up going to the breast center on the 28th, got another ultrasound, another mammogram and again both came back negative. My Dr. sat down and explained how I did everything backwards , and now they have to retrace the steps to get all the details. i made an appt for my MRI, and then my DR is going to reopen the area of the cyst, and also do a lymph node biopsy at the same time.

Right now all I know is that the pathology report says it s Invasive Ductal Carcinoma, ER+ PR+. The issue is that they cannot find the primary which after going on google really concerns me. The Dr. has added me to the Tumor Board because its not a typical case. Hopefully i'll have more answers after my MRI and I'm debating if I should take a trip to Boston for a second opinion at Dana Farber.

Moderators

Hi Debsta and welcome to Breastcancer.org,

We're so sorry to hear of your diagnosis, but we're really glad you found us. As you will certainly find, our community is chock full of super helpful, supportive, and knowledgeable members always willing to help, lend an ear or a piece of advice. One of those pieces of advice we know will be to stay off "Dr. Google"! We know it's tough at such an uncertain time in your diagnosis, but stay on trusted sites like Breastcancer.org, and within this Community where many others have been where you are and are now thriving.

We hope to hear more from you as you navigate your diagnosis and treatment. Please come back often, ask lots of questions, and get the support you need. We're all here for you!

--The Mods

Shellsatthebeach

Since this sounds like a complicated case, seeking a second opinion at a cancer system seems like a reasonable decision. I did the same thing. I'm very glad I did.

OCDAmy

So strange! Why isn't the primary Cancer the cysts that they removed? Isn't that where the cancer was found? I hope you get answers soon. The waiting is truly the worst part

EastcoastTS

I'm a newbie to this, too, but I would get the appt at Dana Farber. I went to MD Anderson for a 2nd opinion and just had such confidence there.

Sorry this is happening to you. Ask any and all questions you can think of and we'll try to answer.

Georgia1

Debsta, I am honestly a bit horrified. Not because you are in any danger, but because your surgeon made such a mass of things. My strong opinion is that "reopening the area" in yet another surgery is a weird recommendation. Please send your pathology report, US and mammogram to Dana Farber, and go see someone there. From what you've told us a sentinel node biopsy makes sense, then any next steps can be based on that and the pathology report from the initial surgery, which Dana Farber will probably want to re-analyze.

Please let us know if you have questions along the way. You will be fine; it seems like they got the IDC mass removed. But you need a second/third opinion. all best wishes to you.

Sharonk0711

Hi,

I just got the news too. I have 3.5 cm lump on my right breast at 10 o'clock, my obgyn says it's aggressive but stage is unknown due to the breast surgeon will have to run more tests. All I know is I have invasive ductal carcinoma. I wish I knew more. Good luck!

Debsta

Thanks for all the kind words and support everyone. I just had my MRI and am now waiting the results, hopefully I will know more soon.

Georgia1

Good news, Debsta. And sorry I sounded so "bossypants" in my last post. I guess that's the risk in thinking/typing fast! You have all my best wishes.

SharonK, sorry to hear of your diagnosis. Once you get the biopsy results you can make a treatment plan, and I must say I felt so much better once the "waiting around" stopped and I could take some concrete steps. Do let us know how we can help: the ongoing threads on this site on IDC, lumpectomy and radiation saved my butt and inspired me so much.

HollyDollyD

Hi Debsta,

They might be waiting on further testing. Initially, my HER2 came back equivocal with IHC staining, so it was sent out for FISH analysis. These things take up to a week. So if they aren't giving you the information piecemeal, then it might be 5 - 7 business days. I was proactive and told them to give me results as they came in - and they did. Let them know what you want, they will help you. You can also call and ask on the status of the report.

Holly

HollyDollyD

Hi Debsta and Welcome!

I wouldn't hesitate to get a 2nd opinion if you are not satisfied. You can even fly down here to MD Anderson, although I'm sure Boston is great, too.

Hugs,

Holly

gigibee

welcome Debsta, sorry you have to join us but this is a great place with wonderful people and valuable info. I hope you get a clearer idea of your case and treatment plan soon, you will find waiting is the hardest part.

Debsta

Hi Georgia1, no worries at all, I think your post mirrored a lot of m own thoughts. To clarify a little, my original surgery was done by a general surgeon because they really didn’t think it was anything other than a cyst. She referred me to my breast surgeon ASAP, and since then I really think the breast surgeon has been playing catch up and trying to get all the answers. I’m hoping the mri will show something, but I’m also anticipating a lymph node biopsy as well.