Can Anyone Help?
Hello All,
Thanks for the support of this site.
I found what felt like a lump in 2015. Dr said dense tissue so I did not worry. Asked her to check again to make sure 2016, she did and again said no worries. November I noticed as I bent over the tissue in the are was puckering/denting slightly. Had annual a few weeks later and asked her about the change. She still thought it was nothing but set up mammo just in case.
Had mammo Friday, immediately followed by ultrasound. Tech looked horrified and said they were so shocked bc I'm so young (37) and no family history that they didn't expect this, but must do biopsy next week bc so sorry, but readiologist is very concerned, this area is very suspicious. I'm now terrfified. They wouldn't tell me anything concrete but I'm convinced by the tech's reactions it is cancer. I could tell by her face as soon as she started looking on the ultrasound that it was not good. Biopsy isn't until Thursday, and test results won't be back until next Monday.
Here are the main questions battering around in my head. They never told me how big it was. Would that give me any idea how advanced it is and/or chances that it has spread? Can I call Monday and ask to see the ultrasound? Would it matter? They did look at the lymph nodes under my arm and said from the ultrasound at least, it didn't look like they were affected. I know that's hopeful, but how hopeful? Does that mean it's pretty certain it hasn't spread? Or could it still be in other places?
I can handle surgeries. I can handle treatments. At this point they could cut them off and I could care less...what I DONT feel I can deal with is hearing it has metastasized or is in other places. I have two babies still in single digits.
Can anyone give me any ideas about any of my questions? The thought of waiting nine more days sounds completely unbeatable to me.
Thanks all
Comments
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Hi, Colleen. Take a deep breath and keep breathing. Waiting is torture and worrying can't make the time go any faster.
There should be a written reports from your mammogram and ultrasound by the radiologist that recommends the biopsy. You can contact your imaging center and request a copies of those reports. That likely will give you some more information about what they are seeing.
There are a lot of people on these boards that are very good at translating the medical-ese used in reports. I'm not one of them sadly but if you share what's written someone will help you decipher it.
Hang in there. This waiting time is rough for everyone so we've all been there with you.
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Thanks for your response. And sorry for the typos, I can’t think straight! Waiting is torturous and inhumane. Ugh
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I'm surprised that the radiologist didn't discuss the findings with you after the US was done. Usually they will tell you what they see or suspect and why exactly they are requesting the biopsy. Definitely contact the imaging center and request a copy for yourself. I think it is very important for us to have copies of every test/biopsy to keep in our personal records. You never know when it might come in handy. Very cruel of them to make you wait without giving you some type of info. Good luck and keep us posted.
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The more I hear from others the more frustrated I get that the radiologist didn’t come and talk to me himself. The tech just kept repeating “very suspicious” “very concerned” and apologizing. I asked how bad it was “he’s very concerned.” She made me feel like it was a death sentence. I started assuming he didn’t come out because it was so bad he didn’t want to face me. But I did notice other techs talking to other patients about what the radiologist had said, so it didn’t seemlike he was talking to anyone. And the fact they said the lymph nodes didn’t look affected made me feel there had to be at least SOME hope?? My mind is going to all the worst places of course.
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Colleen,
Like others have said, get copies of those reports and post them here. We can help you understand.
The techs are not supposed to say anything. Nothing. Nada. Zip. They aren't doctors, and shouldn't be relaying anything the radiologist (who is a doctor), said to them.
If the radiologist was **that** concerned, they should have come in and talked to you about it, rather than going thru a tech.
Again, got the radiologist reports, and post what they say here. We can help you understand
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Thanks everyone. I will call Monday and request.Do I just ask for a copy of my ultrasound and mammogram reports?
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Colleen - I cannot believe the tech said anything to you at all or even showed any kind of reaction, no matter what she did or didn't see. In fact, I would be inclined to tell the radiologist about it because I really don't think they are allowed to do that (HIPPA laws, etc.). That's downright awful to have that happen. You should only be hearing from the radiologist.
Definitely go get a copy of the radiology reports. You have every right to them and it will help you. DON'T go to Google or Bing for your information (I'm a great one to talk!). Every one of us and our cases is different and there is no website anywhere that can speak to you specifically.
I know it's so hard, but try to breathe. It took exactly one year and 2 days for my cancer to form and become as big as a small pencil eraser. It's not growing while you sleep.
Keep us posted. You came to the right place; you will get the most tremendous support here!!
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Colleen, so sorry you are here, and understandably frightened.
It is the weekend now so some of this may not be possible until next week.
1. Are you in a center where you can access your records electronically by signing up online? That might provide sooner information not just now, but also later when waiting games come up
2. Are you able to call anyone from your primary care team over the weekend to at least get preliminary information read to you or faxed to you about what the mammo and US showed?
At a minimum, call and tell them you are very anxious, and consider asking for an urgent prescription for a sleeper or anxiolytic. If they have no info on the weekend, tell them you want it first thing when available Monday, so you are on their radar. You could g to the radiologist but they do not typically set up time for drop-ins and it may not be more helpful than waiting for results info.
3. A larger tumor can still be slow growing and lower grade!
4. Negative US lymph nodes is good but does not definitively rule out spread, if this is cancer. But even if it is spread, there are very good treatments these days and many women here and elsewhere who live many, many years after spread have remissions and control. Do not assume it is spread, most have not spread at diagnosis, especially if lymph nodes are negative. So even if cancer, there is most certainly lots and lots of hope!
We are hoping intensely for a good result for you.
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Yes, call them Monday and tell them you want copies of both the mammo and US reports. It's your legal right to have copies. Im not sure if you live close enough where it's easy for you to pick up the copies, or if they can fax them to you or something.
Snickersmom is right. It was very unprofessional of that tech to say or show any reaction. Drives me crazy when they do that.
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Yes, usually they want you to pick them up and show ID. I have a binder I just put everything in. Hang in there!
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Thanks so much everyone! We do have electronic access to files supposedly but I can’t find a thing that’s recent other than the appointment for the biopsy is listed. I’ll call first thing Monday and I am close so should be able to pick up after school. Or, I may even message my dr tomorrow and ask her if she can tell me anything more.
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Definitely get a copy of that report. I’ve been getting mammos and us for years, and I’ve never had a tech say anything. It was always normal. In November, my mammo showed something suspicious. The radiologist came out and spoke with me afterwards, and explained exactly what was seen. He also said someone would call to schedule biopsy. What you’ve explained is highly unusual.
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Colleen, my heart goes out to you. This was handled all wrong. The tech had NO BUSINESS giving her opinion or relaying anything the radiologist may or may not have said. It has nothing to do with HIPAA and everything to do with common decency. As such, try not to read anything into what she said or how she cut her eyes at you. Until you have a biopsy NOBODY knows what you have there. And that's the really scary part, IMO. Not finding out we have cancer, although that's bad enough, but being in that special hell when we are scared and don't have any answers.
Take heart from the fact that the majority that ARE diagnosed with cancer are early stage. The vaaaaaast majority will never die from BC. Very few are at stage 4 at initial diagnosis. And even at stage 4 there is a lot of treatment available. So it's not a hopeless situation, even though it probably feels like it right now.
For the moment, try not to Google stuff (everything "breast" leads to cancer, and a lot of that information is flat-out wrong and out of date.) Do what you can to keep busy. I find that keeping my hands busy helps me to not perseverate on worries. Things like cleaning, painting, sewing, reading aloud, anything that I have to engage my mind and body in at the same time. Nothing that puts me in "the zone", because then I just get stuck and worry. Monday will be here in two more sleeps. Call your doctor on Monday and tell them exactly what you told us. Get them on your side (personally, I think any good doctor would be horrified if his staff did something like this!)
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thanks so much ladies. Hearing from others in this situation gives me hope. I am anxious to get my reports and get back with you on what I read. I’m so angry the radiologist did not speak to me
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So I private messaged my doctor this morning and asked her if she could give me info from the report bc I was told nothing other than “very suspicious” “very concerned.” She was very angry that the radiologist did not speak to me as well. She will be home around 4 today and said she would let me know what she saw on hers as soon as she got home. I guess whatever she doesn’t tell me I can find out when I go get my copy tomorrow. I hated to bother her on a Sunday, but...
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Colleen, I am so glad to hear that you were able to contact your Dr and that she responded. Hang tight, there, girlfriend. We know this is brutal.
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BIRADS 5. 😞 Now I'm just praying it hasn't gone far.
ETA: no suspicious lymph nodes, which I am clinging to
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hang on to the positives. I was a birads 5 and ended up with maybe a dead microcalc in one node. I am doing great according to my oncologists. It has almost been 5 years since my biopsy. Prayers and HUGS!
I am so sorry the radiologist was so unprofessional in my opinion.
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1.3cm on the ultrasound. How is that in regards to size? Big? Small?
ETA and thank you for the response. I’m sorry, I can’t think straight!!
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Colleen, that number would correspond to the largest measurement, and would be about half an inch. So not big at all. I believe when it's less than 2 cm it is considered small in breast cancer staging too, so along with the low likelihood of lymph node involvement that is good news.
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That is the first thing that’s given me a real deep breath in two days. I know it’s not certain that it’s hopeful news, but certainly good signs that I’m going to cling to as hard as I can!
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Ok Colleen, deep breathes. Slow deep breathes. If the diagnosis is positive, and you know the chances are high that it will be, talk with your Dr about some anti-anxiety meds. You will be having a lot of information coming at you.
A few things for the moment
~~STAY OFF OF GOOGLE. So much out there is outdated or will have nothing to do with what you may be dealing with
~~"Breast cancer" is an umbrella term that covers over 20+ Different kinds of cancers that can effect the breast. And that is not counting all the subtypes. And some of the subtypes have subtypes. It will take a bit of time to know exactly what *you* personally are dealing with.
"Just Diagnosed-Get prepared" In case you need to be doing something pro-active to feel like you are in control, this link will bring you to the "Just Diagnosed" section of BCO and this thread has some great practical advice of the things you can do to get organized.
~~~And keep breathing.....slow deep breathes.
Stage I
Stage I describes invasive breast cancer (cancer cells are breaking through to or invading normal surrounding breast tissue) Stage I is divided into subcategories known as IA and IB.
Stage IA describes invasive breast cancer in which:
- the tumor measures up to 2 centimeters AND
- the cancer has not spread outside the breast; no lymph nodes are involved
Stage IB describes invasive breast cancer in which:
- there is no tumor in the breast; instead, small groups of cancer cells – larger than 0.2 millimeter but not larger than 2 millimeters – are found in the lymph nodes OR
- there is a tumor in the breast that is no larger than 2 centimeters, and there are small groups of cancer cells – larger than 0.2 millimeter but not larger than 2 millimeters – in the lymph nodes
Microscopic invasion is possible in stage I breast cancer. In microscopic invasion, the cancer cells have just started to invade the tissue outside the lining of the duct or lobule, but the invading cancer cells can't measure more than 1 millimeter.
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Hey there--so sorry you're going through this.
1.3cm is small! That's still a stage 1 (anything under 2 cm is stage 1, unless you have lymph node involvement..then I think it's considered Stage 1B)
I've been on that roller coaster you're on right now. It's really rough, not knowing. That tech should never have told you ANYTHING abotu your ultrasound. That's so not kosher.
What happened to me was--they found a cancerous tumor in my right breast. They said it was 1.5cm. The first hospital I went to was ready to give me a lumpectomy and radiation.
Instead, I went with a surgeon recommended to me by someone I trust, and she ended up sending me for a breast MRI (like YOU, I have dense breasts).
Because of my dense breasts, the mammogram and ultrasound didn't pick up a) a fibroadonema in my LEFT breast and b) a SECOND tumor in my right breast.
So of course, going through all that (which meant I had to do THREE biopsies..ugh), I was a nervous wreck.
My surgeon said according to the breast MRI, my original tumor was over 2 cm..but after surgery, the final measurement was 1.7cm.
And I can tell you, they were right about there being no lymph node involvement--they told me that in the beginning just like they told you.
I feel pretty lucky.
Ultimately, I ended up doing a unilateral mastectomy on my right breast and saving the left, because I was negative for genetic mutations, and preserving the healthy breast doesn't increase your risk of cancer in any way. I preferred to have one breast that still had feeling.
You will get through this!
Keep posting here. There's lots of good info and support.
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Thamk you so much ladies. And thanks for the info about the MRI! I may just go ahead and ask for one. It’s scary to think someone could say “you’re fine” when in reality there’s something else lurking around that wasn’t seen
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Hi Colleen, First, I'm so sorry you're here, cancer sucks. I too had a very small cancer. Everyone kept telling me how great that was, but it still sucked.
You'll likely have a biopsy now, it may even be ultrasound guided, since that's how they found it (unless you had it, may have missed your post). With the size of your "tumor" (you could name it) I had a lumpectomy. Since no nodes were involved I had radiation and 5 years of pills for treatment (you'll hear more later).
A really great book to get or borrow from the library is Dr. Helen Love's Breast Cancer Book. She is amazing and a survivor as well. That book outlines everything. My motto always is "knowledge is power". You have many choices ahead.
You've come to the right place, nearly everyone here has been in your shoes. <<hugs>>
please keep us posted on your journey.
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Thanks again-books will be a great resource for me when I’m sitting on my hands as I love to read!
Ladies-is it normal to have pain? Ever since my mammo and US Friday I have a dull pain in the area of the tumor that comes and goes. Is it just from being jostled around?
Counting down the days till results...
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Yes, it is possible to be a bit uncomfortable. Have you heard when you will have a biopsy, or did I miss a post?
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Yes, my biopsy is Thursday at 8:30am. Because of the weekend it will be Monday (or maybe Tuesday if the place reading the results takes MLK Day as a holiday??). It's torturous that it takes so long. 😠
Thanks, I was a bit worried about the pain
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I feel your frustration. I’ve been waiting for my biopsy results since last Thursday.
Hang in there. Praying yours is B9.
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ugh I’m so sorry! It’s a horrible wait. Praying for yours as well. ❤️
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