How can it not be?

Holliepea85

I went yesterday for what I thought were just tests for a lump I had found.

Had an ultra sound and the lump is and also enlarged lymp nodes, had a mammogram that said the same. And then a biopsy and a marker put in.

Went back to see the consultant who said it had been graded for 1-5 as a 5 so they were very worried, come back next week for biopsy results. Then started talking about genetic testing like it was a done deal. I wasn't expecting any type of results so was massively in shock. I thought it was weird how the nurses kept asking if I was ok and said "I expect it's all sinking in now"

So if I have a 5 and they are discussing treatment then how can it not be? Surely if there was hope they would have given it to me.

etnasgrl

When you were told it was graded a 5, did they mean your BIRADS score?? If so, a score of 5 means "highly suspicious of malignancy". That being said, it's not a done deal until the results of the biopsy come back. 
To be honest with you, the consultant that you dealt with should not have said anything to you, let alone talking about genetic testing, until the results are in. You are already worried and stressed, she should know, as a professional, not to make it worse until she has reason to.

Waiting is the hardest part and I know right now you feel so overwhelmed and afraid. Try to relax. Try to distract yourself as best you can. Hope for the best, prepare for the worst. And if the news is not good, that does NOT mean there is no hope. Millions of women have received a breast cancer diagnosis and are THRIVING today.....myself included. You will be just fine. Take things one moment at a time. You'll get through this! 

MTwoman

Holliepea, So it sounds to me as if your lump was given a BIRADS 5 score (read more about that system here: http://breast-cancer.ca/bi-rads/) based on it's characteristics. That score comes with a positive predictive value of 95%, which means that there are times that women get b9 pathology results, but it isn't typical. So they were trying to give you a chance to prepare yourself for a bc diagnosis (without outright diagnosing you). I would plan on bringing someone in to your appointment, someone who is cool under pressure and can take good notes or help you ask good questions. You don't want to get too many steps ahead, but if you do get a diagnosis, things can move pretty quickly. Start thinking about your support system and how you may want to activate them if you need to. I am sorry that you're in the awful stage of waiting, it really sucks. If you get a diagnosis, there will be a bit more of that as there are other results to wait for and potentially other imaging to acquire. You can do this. We will help you.

Holliepea85

Thank you.

Ok so I have read up about that score. Possibly worse than I thought. I guess everyone feels like this but I am angry!!

I'd actually rather not go and get my results now.

waytooanxiousmommy

I am actually in exactly the same situation. The doctor told me from ultrasound that I have breast cancer. He also said looks like it wont be early stage, that my lump was medium sized, that my lymph nodes were probably not involved (not confirmed until sentinel node biopsy), that I should have genetic testing as I am 48 and that I would have a lumpectomy and radiation.

I do think that this was overwhelming for me to hear as my biopsy results are not in but I know he sees a lot of these cases and so maybe most of these guesses will be accurate.

I am very anxious by nature and this is a terrible situation for my anxiety. I will have pathology back next Wednesday. Did you have your biopsy yet?

exbrnxgrl

holliepea,

Although this is overwhelming and scary, try not to get ahead of yourself and don't think that this is the end. I have lived,and lived well, for over 6 years with stage IV bc. I work, travel, enjoy my Family and friends. Yes, someth,ings have changed, but I would have missed out on some wonderful years of living if I had given up at dx. If you have bc, you have no way of predicting how things will go. It might turn out better than you think!

Holliepea85

I had the biopsies. Have to wait 8 ate for results.

Maybe naively so, but I'm not not worried I will die, I just don't want any of this. I don't want to have to be brave or get through anything.

MTwoman

Holliepea, No one wants to have to be brave or go through this. Honestly. No one. You are so not alone in that feeling. Regardless of what your pathology shows, though, you've just got to keep moving forward. You don't have to be brave, you just have to show up. And you'll get through it. We all have brave days and not so brave days. You can do this.

GreenEyes81

You will find strength you did not know you had. Then you will look back and think that was not so bad as you get ready for the next ride.

waytooanxiousmommy----I am VERY concerned with what your doctor is telling you. It's one thing to prepare a patient for dx (imo they shouldn't even do that...but another story) it is a whole nother to be telling you what surgery to expect, treatment ect. He KNOWS CRAP, regardless of his expirence. All they did is find one lump...another is found that all changes. I had biopsies on 3 of 4 lumps found, 1 was IDC. A week or so later I had an MRI....it found 2 more lumps that were later confirmed more IDC. Lumpectomy went out the window after the MRI.

I just really really caution you holding his advise as solid. Recommend getting an MRI before any desision is made, and maybe a 2nd opionon. It is really easy to "trust" your doctor so you don't have to deal with the stress of a 2nd opionion. It is HARD! I am happy with my surgeon, but honestly looking back I wish I had gotten a 2nd opionion.

I just got a 2nd opionon for reconstruction, I am so very thankful I did!

There is still a chance he is flat our wrong as well and it is b9.

Feel fee to PM if you would like to chat.

Holliepea85

I seem to be fighting a constant battle in my head to plan nice things, go to work and stay focused and try and take my mind off it, or just think sod it and go to bed with lots of wine. The thoughts in my head are exhausting.

NotVeryBrave

Hollie - Everything you're describing about how you feel was so much like me. It's a rollercoaster of emotions and hard to find a steady place. Try not to expect too much of yourself right now.

Was the "consultant" a radiologist? I have mixed feelings about how the info was shared with you. On the one hand - yes, they don't have pathology results and therefore don't know for sure. But I'm the kind of person who wants a "heads up" about this kind of stuff. I met with a BS briefly (because my OB/GYN required it before the biopsy) right before I had the biopsy done and asked her how likely she thought it was cancer from the images. She said 95%.

Regardless - no one should be discussing treatment possibilities at this point. There are so many options and preferences. If you end up needing to make decisions, I do agree that second opinions are super helpful.

I don't consider myself brave (see name) and I don't like to think of cancer as a battle or a fight. For me - it's just stupid bad luck and I'm just trying to get through it.

Holliepea85

I saw a radiologist who gavebthe results to the consultant. It was all such a shock as I thought I wasn't just having tests, I didn't think I wouldn't get any results. I didn't even take anyone with me and it didn't really sink in whilst I wasn't there.

I think they were talking about genetic testing as my sister had bc 4 years ago at 31yr, my age now. The consultant wanted to see if she would come in for testing at some point.

Holliepea85

I have really flipped out today. I felt a lump in my neck. I rang the doctors crying and went to see her. She said it is my lympthh node that's come up, but might be all part of my body fighting a disease. She rang my consultants secutary to try and get me seen sooner

MTwoman

Holliepea, can you find out if the center where your consultant works has a Nurse Navigator? They can be extraordinarily helpful, especially when things start to seem like they're happening really fast and your mind isn't tracking everything yet.