Awaiting Biopsy but know it's cancer
First post. Had a mammogram and the radiologist told me it was likely invasive carcinoma with DCIS. My mother got breast cancer when I was 9 years old and died when I was 13. I was her caregiver. So I guess you could say I have been waiting 40 years to hear those words.
I have told no one. I am a Christian and have been praying and relying on God's word. I have been already blessed in this process. I just know that once I tell it, it's out. I know it will change every relationship I have. They will look at me and see cancer...and whatever that represents to them. And I dread that. I am very independent and find it difficult to ask anyone for anything. But I love to help others, so this is a huge role reversal for me.
My biopsy is this Tuesday, 5/2. I plan on telling my husband on Tuesday night. My college age son will be home in 2 weeks and I will tell him then. My husband is very quiet and doesn't show his emotions. He will not know how to support me and will be afraid and feel helpless. My son's best friend's mother is battling breast cancer for the second time. She is very ill. And, of course, he knows about my mother. He and I are very close.
I feels good just to be able to say it to someone. Any words of wisdom on what to say to my husband and son would be so appreciated. When do I tell the people at work (I work in a hospital so they will ask a lot of questions...) and how and when do I tell my friends?
Thank you for listening.
Comments
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Sorry Upheld---hoping your biopsy is uneventful and that the radiologist is completely wrong.
I ended up telling everyone pretty much right away, but I wear my emotions on my face so it's hard to hide things. And I got the call with my diagnosis at work, so my boss was the first one to know as I turned into a blubbering mess. My coworkers have been very supportive. With my husband I just went home from the OB visit where she felt the lump and cried. As much as everyone kept telling me to not worry, deep down I knew, having a family history. The radiologist though said after the biopsy "I'm worried"---talk about an "oh, OK" moment.
I am a Christian too and have been changed by this, for the better, although it's not what I would have picked.
Please keep us updated, we are all here for support and questions!!
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I was very surprised by the out-pouring of prayer and hands-on community support my DH & I received when I put the word out at church and at work.
All my family lives 450-2500 miles away, so they were unable to be "boots on the ground"; however, I didn't think the would just neglect me emotionally. I have 4 siblings and a mom. The only one who ever called to check on me was my brother, whose weekly message every time was "please don't die. I can't live without you!" Which sounded nice the first time, but quickly became about me comforting him.
I decided to keep it off Facebook until after treatment was completed and my hair grew back. I didn't want my situation to be idle gossip. But my bosses were great about making flexibility in my schedule ( I'm a community health nurse), and my Sunday School class kept us in meals for 5 months! The people I knew the least we're the ones who helped and stood by us the most!
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Upheld,
Sorry you are going through this and saying a prayer it still turns out to be benign. Though sadly both of my ultrasound doctors were spot on (orig diagnosis and recurrence). I would not tell coworkers (if you can hold out) until you have your plan in place with the doctors. It should come together pretty quickly after diagnosis (if positive) and the scans they will most likely want to do. Otherwise you get so much unwanted advise and from the more ignorant people - looks of terror. That does not help! Especially with the advances in medicine, treatment and surgery. I hit the 5 year mark and consider my recurrence (local) to be "clean up" am NED and plan on being that way permanently! God bless and be well. This place is a great resource. Use it as much as you need.
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Thank you ladies for your replies! It feels good to just "try it out" by posting here. What can I expect in terms of time after my biopsy results? How quickly does a plan fall in to place? What other tests might they run?
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i knew my biopsy results in less than 24 hours, saw a surgeon 4 days later. Along with that I had pathology results. Because I am young with family history they sent me for genetic testing. She also sent me for MRI to make sure there weren't any other areas of concern. So within a month of diagnosis, no, from finding the lump actually... I was in the OR.
I also had a CT and bone scan but those were after surgery, because they found cancer in one lymph node.
Sometimes they do chemo before surgery and certain pathology makes you more likely to need chemo. I didn't get chemo at all. They do gene sequencing tests on the cancer cells to determine if chemo is helpful or warranted--my test was called a mamma print which is a newer test. I didn't find out those results for several weeks after my surgery, so the "plan" was nebulous until then.
I went from surgery to radiation and am now a couple months into hormone therapy. I didn't have to stop working and am still trying to enjoy what's left of my thirties.
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It takes longer than you think to put a good plan together. For me, it was one month from biopsy to First lumpectomy. Then it was another week for re-excision for margins. Then I got a huge seroma and a huge hematoma so that put radiation on hold. And then I got my genetic testing back and that changed the whole business. So it was one month from diagnosis to First surgery, 6 weeks from first surgery to first chemo and 5 months from first chemo to BMX. And rads went off the table completely.
As someone up thread mentioned, be prepared for all the loonies to come out. I don't know what it is about people that makes them want to tell you all the bad stories about cancer. My own mother repeatedly told me a story about a young friend of hers who got breast cancer, had reconstruction , and 6 months later she died. Thanks for nothing , mom.
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Upheld - I agree about not spreading the word until you know for sure and a plan is in place. Admittedly I did the polar opposite. My SIL had been DX a few years before me so I felt comfortable telling her although she tends to spill her guts and everyone else's too. My family knew from the front end as well. They have been very supportive. As a matter of fact my sister was DX a year after me. Our mother had BC too but not until she was in get sixties. She died in her eighties but not from BC.
The town crier was my neighbor. She told the whole cove and even X neighbors. Wasn't her story to tell. She talks non-stop usually about her own family only so why she felt compelled to tell it without asking me still bugs me a bit.
I had to tell my boss because I needed some time off. My job was very detail driven and I was having trouble concentrating.
Once they did my biopsy it wasn't but a few days before I got the phone call. After that the process moved very quickly. Conferred with a breast surgeon, scheduled a lumpectomy and met with an oncologist who decided my treatment plan.
You lost your mother at a very young age. How tragic for you and your family.
This website is a godsend. Come back when you know more details. We will be happy to help in any way we can.
Good luck.
Diane
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One of the most useful things my counselor told me was "your cancer is not your mom's cancer". Until I was dx everyone I had ever known with BC had died from it. That experience sent me into a complete tailspin. Now here I am five years out and doing great. Remember Upheld, your cancer is not your mom's cancer.
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You do NOT have a DX (diagnosis) of any type of BC! It take a biopsy(s) to get a DX.
It can take days or even a week+ to get the pathology report back depending on how the Dr doing the biopsy sends it in. It can also be the next day IF the Dr feels it's imparative immediatsly but not usually done.
There is NO "One Size Fits All" when it comes to the different types of BC and the TX plans and possible prognosis.. Once there is a DX (if there is one), some of the possible Scans/tests ordered can include CT/MRI with contrast, Bone, PET, EKG/MUGGA,, ER/PR and HER2. There are others which include genetic and other tests.
Time frame once there is a DX varies greatly with the type (DCIS/IDC/ILC/IBC). It can also take a few days to meet with your Team (Surgeon, MO (Medical Oncologist) and. RO (Radiological Oncologist) as they all work together for the optimal outcome.
Don't prejudge your Hubby. He needed for you to be honest with him from the 'git-go'! It is amazing how much stronger Hubby's can be than we thought they could be. They can 'buck up' to handle what has to be done when they need to. My IBC hit Hubby hard. I've ways been that 'handled' most 'stuff' as he had been A/D Navy for 20 yrs so I had to be able to handle what ever might have happened and after he retired - just 'kept keeping' on. Other than occasional colds/sinus infections and 2 C-sections, I was never 'sick'. I told when I found the enlarged node under my arm and all that went on from then. Telling him was one of the hardest things I ever had to tell him (hardest was over MARS while he was deployed during Desert Storm when our older Son was not expected to live the night. Son did survive.). He had lost him Mom when he was 9 to Cervical Cancer and found his Dad dead from a massive heart attack when he was 16. So me having 'issues' when DXd IBC hit him hard BUT he was informed from Day 1 til today and as hard as it was on him - he took over and did all that he needed to do. Point is - nothing was every kept from him.
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Thank you again for the support ladies. Lots of words of wisdom. While I do NOT have a diagnosis of breast cancer, I know that I have cancer. As did the radiologist, the tech, and the nurse who counseled me afterwards. I'm thankful for this time to process it before I have to share it. I have not been dishonest with my husband. It will be awful to tell him and I know he will care but he will go on with his life and his work just as he has in every other difficult place we have been in. What will be the hardest will be to tell our son. I am thankful for the reminder that this is not my mother's cancer. I hope all I learned from that experience will help me to do this better somehow. My mother chose to make her 9 year old daughter her caregiver. I hope to not make my cancer my son's problem. I have no family to speak of - one distant brother and one nephew, a niece who is a blessing but all live states away from me. My husband has one bachelor brother. So I am very grateful for this board and for the women friends I have in my life. Thank you all!
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Hi upheld, I was told the biopsy was + for c, before I even woke up fully in the recovery room on a Friday. The following Monday my surgeon gave me the name of a good oncologist and sent my pathology report to her--I had heard of her before anyway--and told me I'd have to have chemo. He even offered to schedule me for a BMX but I felt in shock and very rushed, and in the end I waited 1.5 years to get my BMX/recon.
I found out on Sept 29, 2011. By Nov. 3, I had outpatient surgery to place infusion port in my chest, my lumpectomy had finally drained all the way and was healing, I had met with two oncologists (second opinions), talked about treatment options, did a bunch of research, and was getting my first chemo. So it was pretty quick but the entire month of Oct was a whirlwind.
It might have been quicker if I had just gone with the recommended oncologist first, but I wanted to talk to MD Anderson Cancer Center in metro Phoenix and see if they'd give me better care, even if I had to drive 3 hours for it every week. I found good care in Sedona, closer to my home with the recommended oncologist from my surgeon.
Claire in AZ
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I'm not sure if advocate waiting for a plan to be in place--maybe a plan for a next step? Because the one comprehensive schedule for treatment I expected has still never materialized!
I had sim for radiation last week and am waiting for a call right now to find out when I'll actually start. Throw in a few curve balls like a post-surgical MRI, unexpected doctor changes and a re-excision and it just seems better to focus on making a plan one step at a time!
I told a few people myself, and other than my parents and brother, I always try to focus on how lucky I am that it isn't worse. I occasionally post updates on FB about it, but I do so along with silly pictures of my dog or my "pretty flower" tattoo for radiation, to keep it a little light and try to show that they don't have to be scared of those of us with cancer--we are who we've always been and are still trying to lead as "normal" a life as possible while we deal with this.
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"Had a mammogram and the radiologist told me it was likely invasive carcinoma with DCIS"
Hi Upheld,It is still possible that you do not have cancer. While I understand the urge to "emotionally rehearse" or prepare for bad news, you will have time to feel those emotions if your biopsy's pathology report gives you the bad news you're anticipating.
If there were something you could do now that would make a difference in your health and/or your future healthcare, I would encourage you to do it. But you've done everything there is to do. Picked your facility and made your appointment. The only thing there is for you to do is show up.
And there's nothing to tell your son until there is something to tell. I'd tell your husband today that you have a biopsy scheduled, that you're worried and scared, but there's nothing more to do until you've had the biopsy--so can he help you keep your mind off of the whole thing today? (And maybe, can you have a hug, and would he like to take you to the appointment.)
If you get a BC diagnosis (from the biopsy's pathology report), we'll be here to help. But please don't waste today worrying about what you'll hear when the results come back.
My very best wishes for a B9 pathology report!
LisaAlissa
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Upheld, I agree with LisaAlissa. While the urge to "rush ahead", assume a diagnosis and start your treatment planning, is understandable, you don't actually have a diagnosis yet. And while you may eventually get one, there are women on these boards who've had a BIRADS 5 biopsy, whose providers were certain it was bc and who inevitably got back a B9 diagnosis. It does happen.
Most of us here really do understand that the not knowing stage, the stage where you are just waiting to hear, and dreading what may come, is the worst; you can't really jump ahead in this case. It may even be harder for you to not know, as you can't help but think back on what happened with your mother. But this testing, and re-testing phase is important. It makes a difference in what treatments are offered and what your risk is, both now and in the future. So try to take it one step at a time. Get the next piece of information and make decisions based on that and move forward. For most of us, there is time between initial diagnosis and follow up imaging, before a surgical plan (or chemo then surgery) is put in place. Then there is sometimes more info coming from the surgical sample that changes your plans.
I am still hoping for B9 results for you, but will welcome you to the club with open arms (although I'll still be sorry if you must join). ((hugs))
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Hi Upheld,
I'm hoping you get good news that your biopsy is benign.
I told people about my diagnosis as I felt they needed to know. My fiance knew from the beginning. He has been with me every step of the way, took me to both biopsies, and was in the exam room with me when I got the diagnosis. He has been my rock, and I am so glad I let him be there for me. I didn't tell anyone else for over a month after diagnosis. After I was diagnosed, I had genetic testing done, and the results of that took 3 weeks to come back. My oncologist and surgeon were going to base my treatment plan on the results of that testing, so I saw no reason to tell anyone until after that was back and we had some sort of a plan. Once my first surgery was scheduled, we told our immediate family. When the results of that surgery came back and we found out I had to have chemo, we told close friends and extended family. I'm doing everything I can to keep it off of Facebook - I want to keep my Facebook fun, not about me having cancer.
My work situation is a bit different. I do freelance work and have several regular clients. I told my regulars once my surgery was scheduled. I didn't want them to think I was just slacking off, and I've had to take a lot of time off for various appointments, so it just made sense to tell them. I'm glad I did - they have been very supportive. I'm not sure how I would have handled it if I were in a more traditional work setting.
Again, I'm hoping that you get benign results.
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While I'm still certain it is cancer, everything each of you have said has been spot on as I look at who to tell and when. It has also made me realize that there is a process in all of this that I am going to have to let unfold as it will. I can't have a plan at all until I know the result of each test and each appointment. As I read under each person's name, I see that cancer is not cancer is not cancer. Each one is unique. Up until the last couple of weeks, I thought breast cancer was one thing. Now I realize it's a multi-headed beast. Thank you again, each and every one.
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Upheld - let's hope the biopsy shows no cancer! But my Radiologist told me the day of mammogram he was 98% certain I had cancer and wanted to prepare me and to find a surgeon. When my mom was diagnosed, same thing - different Radiologist, but she told us because our family had been through so much with cancer, she wanted to prepare my 80 year old mom.
They were both right. I hope and pray yours is wrong!!
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I learned about my dcis diagnosis two days after biopsy day. The radiologist was quite certain that it was dcis, and obviously she was correct.
Once I received the official biopsy report, I spoke to my surgeon that day, and by the next week, I had my surgery scheduled. Within two weeks of diagnosis, I had my bilateral mastectomy with complete reconstruction. Overwhelming to say the least, but it's doable. Best of luck to you, my friend.
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My sister is at about the same boat, at this time, as to if, when, what, how..
She too had big concerns who to tell when and what.. she meets with her surgeon this aft to hear what the plan is following a biopsy of a second suspicious spot. (First biopsy was positive) She told her sons following that first result...timing good because one son out of the country earlier. I only bring this up because believe communicating with other BC people is key to dealing with it.. obviously my sister and I in touch right after her first messy mammogram.
Do think most 50+ people have seen BC take the life of a loved one years ago; however, feel they have it down pat now what treatment schedule 'really works' for the various types .. on this sight you will see the similarities in treatment for people all over the country/world with similar Dx.
Good luck and God Bless.
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Had my biopsy today. Two places on my breast and a lymph node. That was pleasant. The radiologist told me he was sorry I was going through this and both the ultrasound tech and nurse told me they'd be praying for me.... I'll have an answer by Friday at the latest. I'm going to tell my husband tonight. Thankful for this board!
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Keep ice on it and get some rest. Try your hardest to not bump your breast!
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I still think the only thing you should tell your husband is that you had a biopsy and DON'T KNOW the results, but are worried. Really - a positive attitude is a major tool for life & healing. I'll echo those above, don't borrow trouble.
As for telling - you don't have anything to tell yet. I agree with talking with your husband to let him know you're worried. I would not tell your children until you know a lot more details and have a plan for treatment. Otherwise everyone's lives are thrown into the same kind of mad worry that we know you are experiencing - round & round & round worry.
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I agree with MinusTwo! You had a biopsy, you are worried, and you HOPE that it turns out to be nothing. You don't have a diagnosis until you have a diagnosis from the pathology report. Hoping it's B9 for you!
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Told my husband I had a biopsy today. Kept it short and to the point.Told him we would know something in the next few days. So grateful for the advice here!
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That's great Upheld, sending positive thoughts your way!
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Biopsy results are back. Both samples in my breast and also the one taken from my lymph node all tested positive. The radiologist said it was invasive ductal carcinoma, Nottingham 3 aggressive. The rest of the results are not in yet.
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I'm so sorry to hear that! Will be thinking of you, as you await the rest of the results.
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I'm so sorry to hear your news. :-(
We'll be here to help when you have questions or more details.
Hang in there,
LisaAlissa
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So sorry to hear that Upheld! Please let us know what you need from us.
just in case your doc didn't explain the Nottingham system:
http://www.oncolink.org/frequently-asked-questions/cancers/breast/nottingham-score-for-breast-cancer
on that scale 3 is the lowest possible score (which is a good thing!). Hoping your report comes soon!!
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Sorry, was hoping for your sake they were wrong. Let us all know if you need anything.
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