Waiting on Lymph Node Biopsy Results

Happy New Year everyone! I'm 42 with absolutely no family history of breast cancer in my family. In fact, I don't even know one person who has had breast cancer. I've been diagnosed with bilateral breast cancer - IDC in both breasts, Grade 3. My MRI showed suspicious lymph nodes on both sides - which I had biospies done last Friday. I should hear back something either tomorrow or Wednesday - but the waiting is agony. It seems like with each additional test I get done, the waiting for the results gets harder. I will meet with my oncologist this Friday for the first time and my husband and I are planning on telling our children (two girls, ages 8 and 10) about my diagnosis that evening. This has really blindsided me - as I know most people are when they get a cancer diagnosis. I have always been such a planner - maybe even a bit of a control freak - and this has just completely thrown me for such a loop. I just want to get to the point where I can know what exactly I'm dealing with (I'm terrified that it has spread throughout other parts of my body) and I want to know what the plan of treatment will be so I can know what to expect. I had my mammogram on December 4th - when the radiologist told me "this looks like cancer" and so I've been worried with just bits of info trickling in for the last month. The anxiety is exhausting....

Hi.

I'm so sorry that you are here for this, Paisley. We're all in the good fight together.

This might help, if you haven't found other resources on breaking the news to your kids: http://be.macmillan.org.uk/Downloads/CancerInforma...

Yup - waiting sucks big time - especially for all of us planners and control freaks. I felt the same way - "OK, we know what this is now let's get the sucker out, and get moving with treatment. Let's make a plan."

If it gives you hope, my Mom is coming up on 10 years. She had stage 3 - and a less than 20% chance of survival. We put together her survival team - so if it helps you, here's what we did:

Survival Team

Research Head (in charge of reading relevant research, translating it into English, and liaising with the oncologist, to make sure we were all on the same page and everyone understood all of our options)

Nutrition Head (in charge of researching diet, nutrition and exercise, as well as CAM. CAM had to be checked by the oncologist)

Meal Train (in charge of organizing meals both for the patient while in hospital AND for the family during treatment)

Support Train (in charge of finding good videos, arranging friends, stopping friend overwhelm, etc.)

Medical/Records Head (in charge of keeping all the records and notes and making sure that what we ordered was what we got, insurance filing, etc.)

Prayer Head (in charge of prayer cover, AND printing out all prayers for Mom, because that gave her hope. People around the world were praying.)

Kid Care Team (in charge of picking up/dropping off kids, ensuring their life is as normal as possible and helping them through this)

Now that I'm fighting my own fight, I've added one more for my team:

PR Head (in charge of notifying friends so I don't have to deal with 1000 emails from colleagues, co-workers, etc.)

It's taken me 2 weeks to pull my team together. So I know when I go for surgery the week of Jan 8-Jan 12, all I have to worry about is getting better - and all my husband has to do is support me through this. Everything else will be covered. When people ask what they can do - I let them know about my teams and ask them to join my prayer team and another team that they would like. I've created a list of my teams with the head contacts, so that when my family needs to know: "Who do I call for.....?" if I'm not up to it, they have options. If you don't have great insurance, you might also consider a financial team head, who can work on a go fund me page or help find low- or no-cost services for you.

Just putting this all together has really helped me DO something that will help down the road, and taken my mind of sitting and having a pity party.

Sending you lots of (((HUGS))).

Holly

Having a PET Scan to check two new lymph nodes on first post surgery MRI. Complicated by post radiation pericarditis which has caused major inflammation. Thinking this test will be a waste of time, but recommended by radialogist who read MRI, and MO ordered the test.

Paisley~~ I'm sorry you have been given this diagnosis. I have not been diagnosed so I cannot begin to say that I know how you must be feeling, other than the anxiety of waiting for more information. I am glad that you found this place because there is so much positive support here.

Lucky~~Great suggestions. I have been reorganizing my closets and laundry room this past week. Tons of stuff to take to Goodwill. It has helped to take my mind off of the waiting and it will help to get these done prior to my excisional biopsy  and whatever comes next.

Holly~~ What an awesome list!! I am sure it will benefit many others. it should be made into a stick somewhere here. I have copied and saved it for future reference myself. Thanks. Good luck with your surgery and keep us posted...maybe start a separate thread on your progress.

Holly how can I print off a list of your teams? If I had something like this I know it would be so much easier.

So I got my lymph node test results today and they were both negative!!! What a big sigh of relief that is! I meet with my MO on Friday and will discuss chemo and whatever else - it'll be the first time meeting him, so I'm not really sure what to expect. My BS gave me the test results today and said, "Your case is really, really, really complicated." This of course is concerning to me. Apparently because of my age - 42 - and the way this has presented itself - pretty much have cancer all through both breasts - I'm complicated. My husband's cousin is an oncologist and lives on the other side of the state. We've been talking to him a lot to get his take on all of this - I've also sent him all of my test results thus far. Tonight, he said that he's encouraged by the negative lymph nodes, but still feels that I need to have either a PET scan or a CT/Bone scan since the cancer is so extensive at the time of diagnosis and because of my age. He's also concerned about the size of the non-mass enhancements that have shown up (left side was 10cm x 7.4cm). My lymph nodes, while clear, were also pretty big - 2.6cm. He said it would be unlikely for the cancer to skip over the lymph nodes and spread, but said he and his colleagues all were in agreement that further scans should be done. I'll have to see what my MO says about this on Friday. I'm so tired of these tests and waiting - I really just want to get started with my treatment....