Waiting on Lymph Node Biopsy Results
Comments
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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....
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wow, Paisley, you sure have a lot going on. It was a 2 1/2 month wait for me too from original mammogram to surgery but I kept super busy to try to keep my mind off it. Maybe you could use this time to get done all the things you won't want to do in the next couple months - deep clean the house, clean the closets, make and freeze meals, etc.
How are you sleeping? I could only sleep every other night and I wish I had known to ask for anti anxiety pills or sleep meds.
I also had cancer in both breasts - IDC in one and DCIS in the other. Made the decision to have a BMX pretty easy. I didn't have reconstruction and have never really missed my breasts. I used rub on nipple tattoos a couple times and really liked them so I got permanent nipple tattoos, which I like very much.
Keep hanging in there. Think of this time as preparing for battle
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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
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HollyDollyD
That is a wonderful idea!!! Sounds like you have a awesome team and that will definitely help with your outcome!!! Not having to worry about returning emails, taking calls and keeping everyone updated definitively takes pressure away from you.
Paisley2916,
So sorry you have found yourself with this diagnosis. But I'm glad you found this site. Everyone here has been so helpful and the site itself is very informative. Take time to stop and breathe. It gets easier! I too was just diagnosed 12/11 and while searching for answers to so many questions, I've decided to slow down so I don't worry myself into a freezy! Yep it's hard but doable in due time. Hugs to you!!!
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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.
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Wow, Holly, I am impressed! Talk about hitting this head on. Your idea for teams is fantastic! I think it should be listed somewhere that newbies can find it. Good work!
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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.
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OK ladies - I've stuck it under another post: Creating a Survival Team so that we can all support Paisley here as she goes through her journey. We're all thinking of you, Paisley!
Hugs,
Holly
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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.
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Everyone on this site is so wonderful. I spent the last few days feeling alone and this site is really helpful to talk to people that are going through the same things.
LuckyNumber47, I love your ideas of using this time to "prepare for battle". I've had trouble getting motivated the last few days, but took your advice today and started to clean house and I felt a little bit better at the end of the day. I think I'm going to focus on getting my house deep cleaned for when I start chemo - which will hopefully be starting in the next couple of weeks. I won't know for sure until after meeting with my MO on Friday.
HollyDollyD, your ideas for teams are fantastic! Not too many people in my family/friends know yet - I have limited who I've told until I tell my kids. But the ones I have told, have asked how they can help and have been really supportive. This list gives me some specific ideas of what help to ask for, and I thank you for that! When you wrote: "Creating a Survival Team so that we can all support Paisley here as she goes through her journey. We're all thinking of you, Paisley!" I was almost brought to tears - ok, I was actually brought to tears when I re-read it tonight. It's so important to have this support outside of my family and friends. I worry about how much to talk to my family and friends as I don't want to overload them with worry. Everyone here understands exactly what I'm feeling because they are going through the same things.
SavedbyGrace1972, we were almost diagnosed at the same time - I got the call on 12/13. I'm going to take your advice and "slow down". It's easy to become obsessive and spend so much time googling - often in the middle of the night when I can't sleep. Hoping to find out my lymph node biopsies tomorrow.
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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....
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Paisley,
That is awesome that the lymph node biopsies came back negative. I had a similar situation as yours in the sense that my MRI showed 3 enlarged lymph nodes and I had a biopsy done which came back clear. (Only on one side though). While this is good news, my MO said that biopsies often give false negatives. My MO ordered both a PET scan and a bone scan. I know all the tests are so stressful, but knowing what you are dealing with will help ease the stress. My PET and bone scans came back clear, and I will be thinking of you and hoping yours do too.
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