I wasn't going to post until I knew more, but....
I am overwhelmed with anxiety today. It's horrible. I'm not used to this. I know you've all heard it before, but I also know you all understand it completely. I'm not really asking for anything I'm just completely losing it. And it's only the beginning for gods sake.
Here is what little I know. call back mammo (as usual I have dense breasts), ultrasound as usual. But this time they saw something they didn't like so biopsy. Appears to be 2mm. They were wonderful and biopsy wasn't too bad. Healed beautifully. Confirmed cancer Only 2/3 biomarkers back: Estrogen: Positive. Progesterone: Positive. Her2: Equivocal so it's out for FISH. Had Breast MRI with and without contrast on Friday. I am claustrophobic but it went very well I must say. A little dizzy afterward but that's it. So now I am losing my mind waiting for the third biomarker and the MRI results. Sitting at work and can't concentrate. But I can't take off because there is only so much leave in the world and I have NO FREAKING CLUE at this point what I am facing with regard to treatment, or if it's already spread everywhere and I'll be dead next month. I was okay over the weekend, able to put it out of my mind. But now I am just a complete mess. I'm not used to this lack of self control.
That's it. I simultanesously apologize and say thank you.
ETA: I forgot to mention that I see the surgeon tomorrow for the first time.
Comments
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Mom2bunky so sorry to hear you are joining all of us on this ride. The good news is you have taken the first necessary steps to get proper treatment. Good for you for doing your annual mammograms and I am glad you had quality care that followed up when a discrepancy was found. These first few days are the absolute most difficult because you don't know a treatment path as of yet. You should get a better idea during your meeting with the surgeon, along with a consult with an oncologist and/or plastic surgeon depending on what choices you may make regarding surgical treatment. I think the hardest thing for me was I felt I had to rush rush rush to make decisions and get the cancer cut out of me as quickly as possible. My doctors assured me we didn't have to do something in the next week and that was very hard for me personally to accept. Looking back, I realize they were giving sound guidance even though I felt things moved too slowly. Allow yourself the time to determine what type of treatment option works. Get a second opinion if you have concerns about what you are told. And remember, you won't make a wrong choice, just the choice that works best for you. You won't know the full extent of your pathology until after surgical excision and potential lymph node evaluation (you didn't mention if DCIS or IDC or other). So keep an open mind because what you think you are going to do may change.
I wish you the best, let us know how you are doing.
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Unless you step in front of a truck, I doubt you’ll be dead tomorrow 😜. Seriously, this is the absolute worst part of the whole ride. Waiting. And there will probably be more tests. And waiting. Don’t panic till you have to, not even then.
Once you get your team and plan in place, it gets easier. You feel in control like something is FINALLY happening.
Suggest stay away from Dr Google, keep your mind and hands as busy as you can. If you can’t sleep, don’t be afraid to ask for something to help.
You can do this!
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Oh, I remember those feelings so well. Sure I was going to die soon and a horrible death. But your tumor is so tiny. Even if it was 2cm it would be considered early stage.
I’ll tell you what my surgeon told me: “You will be fine. This is cancer with a little c, a bump in the road, a minor inconvenience. You will be fine”. And she was right. I am fine. It was a whirlwind for a few months but just keep putting one foot in front of the other and you’ll be out the other side in no time.
Sending hugs,
Lucky
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Thank you Rah2464. I apologize for not including more information it's all still such a jumble to me. I don't know what half of it means, though i am learning fast. I was truly vent typing. In answer to your question, I'm looking at the report and it states "Moderately differentiated invasive ductal carcinoma measuring 1.3cm in maximal length in this material." The biomarkers are "Estrogen R Positive: ] 90% strong intensity nuclear staining" and so is the Progesterone receptor, also ] 90% (I can't seem to locate the "greater than" sign on this keyboard!). My lymph nodes appeared "clean" to the doctors on the ultrasound, which is great but I realize isn't the final word. As I mentioned the HER2 is the other thing I could hear about at any second, it's been out for FISH.
I seem to do well if there is nothing imminent. I can compartmentalize and put it away for a few days, with only occasional frightened feelings. But on days like this, when I know to expect the results at any moment or at the latest (I hope anyway!) tomorrow, I just can't manage it well at all. Does anyone else feel this way? It's not denial on the "good days." It is just truly more of a "really no need to be worrying about this right now. offices are closed. nothing to be done. moving on." But waiting for the phone is horrible.
I think it may be time for another good, ugly cry. -
Thank you Lucky. I hope you're right. Part of my problem is that I've always been so healthy. No surgeries, no real illness. I've never even had a cavity. so I'm not only afraid of the prognosis and dying. I'm terrified of every procedure. I've given birth. that's my extent of a hospital stay and the MRI was only the third IV in my life. So it's crazy. "BIOPSY?! OMG!" "MRI???? OMG!" I canvassed so many people, including my teen son's friends, and I do believe I may be the only person on the planet who hadn't had an MRI. Ha ha!
Anyway, I recognize that I need to just buck up and deal with all the procedures. I'm not the first one. These aren't experimental. Just suck it up. As you say "one foot in front of the other." One step at a time is becomming my new mantra. Thank you, that really helps. I am feeling calmer now.
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Thanks spookiesmom. I am staying away from Dr. Google. I am even staying away from reading here. At least until I know what I am dealing with. But I am grateful to be able to come here and vent. I have a lot of friends, a loving husband and very mature son. I'm lucky with a great support system. But for really really just losing it venting, I'm grateful to have this resources.
I really really hope it's true that this is the worst part. Because otherwise, man....
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Having both of your hormone receptors be really strong is a good thing. That means that tamoxifen/AIs will be a powerful tool for you.
I didn’t need chemo or radiation (mastectomy instead of lumpectomy) and I was blown away by how simple my treatment was. I couldn’t believe it when my dr said I just needed surgery and then my small daily pill. Wow, you mean, that’s it? No torture, no terror?
I had always been really healthy too. When the hospital called to do my preadmit survey I answered no to every question. The hospital worker said, “wow, you’re so healthy”. Yeah, except for this CANCER!! Being healthy should help you bounce back quickly.
Did they tell you your KI67 or what grade your cancer was
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Wow luckynumber that is wonderful! The nurse mentioned aromatase inhibitors with respect to me eventually, but really it's so early I'm not sure if she was just talking out loud or not. I take it then you're not on HRT. Everyone is telling me I'll be taken off, I've only been on it for 2 months, so that can't be the cause of this but okay. I'll do what I have to do. But I'm very concerned as there is major, fatal heart disease on both sides of my family as well as depression and vascular dementia. All things that estrogen is suppose to help with. I was already being treated for crazy high blood pressure (also new and exciting), and I am not overweight or have any other bad cardiovascular disease markers, at least. And the HBP is fixable with a pill, or in my case two. Well, we'll cross that bridge when I come to it. I will obviously be taken off tomorrow when I see the surgeon. One step at a time.
So let me see. I'm looking at the report and what it says is "KI67 clone MIB-1 (DAKO); computer assisted quantitative IHC." What does that even mean??!
ETA: Oh wait there's more: "Proliferation Index (Ki-167), 18% nuclear staining.
The only thing I see about grade is "histological grade: grade II. There's also a nuclear grade score of 2/3. No clue what any of this means, good or bad.
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Dear new friends, thank you. The panic attack has passed.
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So I just got my MRI results back and it's good news. It appears to be only the known cancer and the lymph nodes look good, as does the other breast. The tumor presented as 2.7 cm whereas in the ultra sound it was 2cm. but the nurse assured me that they won't know the true size until it's out, and that in her experience the true size is likely somewhere in the middle.
I have also just learned that I am HER2 negative.
No idea what that means, but I'm sure I'll hear all about it from the breast surgeon tomorrow.Thanks again everyone for holding my hand today.
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It means you won’t get Herceptin, and you might have an Oncotype test to help determine if chemo is warranted. Two cm is a threshold for some treatment decisions—I’m not sure how that factors into Oncotype testing. FWIW, ki67 doesn’t seem to drive any decision making, and most tumors seem to be grade 2 or 3. The ER+ means hormone therapy will be beneficial to you—Tamoxifen if you’re pre-menopausal or an aromatase inhibitor if you’re post. Both get rid of the estrogen in your body.
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Go do something fun tonight. You can't see your surgeon before tomorrow, so you can use the time worrying, or having fun. I vote for fun.
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Hi mom2bunky,
Welcome, though I am sorry for the reason you are here. Waiting is the hardest part. Once you have seen the surgeon and the oncologist and have a game plan it feels more like you are in control. You aren't, of course, but it feels like it. Lol Don't be surprised though, if it feels like things are moving incredibly slow. I remember when I was first diagnosed I had my biopsies, I saw the surgeon, I saw the oncologist, I saw the plastic surgeon, my plan was set...then I was waiting again. For me it was a matter of would I have chemo first or surgery? Then I was waiting on scheduling. It seems like scheduling always slows everything up. Just be patient. And be gentle with yourself. Do things that you enjoy to keep your mind off of everything ahead. You'll get there. And remember you can always come here for love and support!!
Sending hugs to you!!
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thank you everyone! You are all so wonderful.
I’m voting for fun too! I think I’ll binge watch the end of The Crown and I have dinner dates with girlfriends tomorrow and Wednesday.
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You are definitely in the hardest part. When you have no plan yet. You're right.....you have no control over the results . I coped by doing what I could control. I knew I'd have surgery, so I made and froze a few meals. I cleaned thoroughly so things would be in better shape that way. I got ahead on anything else I could. That occupied my mind, was productive, and gave me a little control. Best wishes. You CAN do this.
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great ideas KBee! Will do same. Thank you
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I can certainly understand your fears. I went through the same. You never think that this can happen to you. I had a lumpectomy with intraoperative radiation on Mar 20th. Lymph node was clear. Found 2 small tumors, one 1.3 cm grade 3 and one right next to it at .7mm. Path report states positive margins, so back to the OR on Wednesday. Also found that I will need outpatient radiation as well. You have to take it one day at a time. I was a walking zombie in February, but now I am just doing what I am being told. I will opt for mastectomy if margins come back again positive. Then no radiation. I keep telling myself that there will be an end to all of this. Keep the faith.
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Thank you UpstateNYer and everyone else for your kind words of empathy and great advice. Here's an update, and then I guess I need to move on to a different section of these wonderful forums. I'll figure out where...
So I'm taking your advice and just enjoying myself at every opportunity. Having coffee, dinner, drinks with friends. NOT spending time talking about this with them, instead just having fun. Reading, doing things I love. Frankly, we should ALWAYS live this way!
So I saw he surgeon yesterday, BFF came with me as a second set of ears and it was a great comfort. I've decided on lumpectomy with reconstruction and radiation. However, since my KI-67 os 18, they're going to have to do an oncotype test, sending my tumor to California, to ensure I don't also need chemo before the radiation. Sigh. That will be another nail biting time waiting for THAT result. The surgeon says she doesn't expect any "surprises" with this, but it's out there and will be until we know for sure. I'll manage.
So very upset about having to go off estrogen AND then taking aromatase inhibitors. I've only been on HRT for two months but it had made SUCH a difference in my life.. I felt like a new person. It sucks it sucks it sucks! But I'll manage because I have to.Because my mother may or may not have also had breast cancer (long story but in short, she felt ill, and by then cancer was everywhere, she died in three months. Nexus was never really determined). Doctor says it's rare for cancer to TRAVEL to the breast so she's going with it was breast cancer, so they recommended genetic screening. It's highly unlikely i have BRCA because there is literally no other history of any cancer of any kind in my family except for my mother and I. But we'll see. That would change the surgical plan of course, but I'm trying not to worry about this one because even the doctor says it's not likely and they're just being super careful.
So I see the plastic surgeon on Tuesday. On Wednesday, I see the radiological oncologist for a presurgical consult. Once I meet with the plastic surgeon the lumpectomy gets scheduled. They work together and it's all done in one procedure. Which is terrific, since I fear the procedures as much as the cancer, having never had anything done in my entire life. Don't have a medical oncologist identified yet, but will eventually.
So that's where I am. Thank you again everyone. -
It sounds like you are lining your team up and things are definitely moving along. Waiting for results is hard, but important to assure all bases are covered. Make sure they don't just test for BRCA, but that they do a complete panel. Hoping all results come back with good news!
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thank you! Will do.
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Your tumor size & markers sound favorable so far. I know the waiting is hell. Prayers that you will get your full info & will start treatment soo
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Thank you sflow. My lumpectomy/reconstruction is scheduled for May 10. Only two more weeks. The waiting IS hell. Then will come what to my mind seems the most terrifying part, the pathology report. I get stomach cramps just thinking about it, so I'm trying not to, since it will come in any case no matter how much a I agonize over it or not. Thank you kindly for your prayers and kind thoughts.
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mom - we completely understand your anxiety. Been there, done that. The fear factor literally takes over your life waiting even when you do your best to stay busy.
If we have learned anything else in this whole process it’s be your own advocate and time seems to stand still waiting for tests, surgeries, etc. We want to know like yesterday but the medical community seems to move at a snail’s pace.
I am the poster person for worrying so this was especially hard for me. I took anxiety to a whole new level. I finally caved and too anxiety meds. Helped a lot. You might consider taking some too. Lots of women do.
Keep us posted.
Diane
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Thanks Diane,
I have thought about it actually. But so far I'm okay without them. Somehow, I've been able to compartmentalize all this and it's helped me a lot. I have my ups and downs, no doubt about it. But I know how to handle them, when to let myself cry, when to let myself hit something. Etc..... That's true so far, who knows about later.
I've been very fortunate with my medical team so far, they have been extremely informative and kind, and timely. I read stories on here about how people have to chase their test results. That's not been the case for me. They tell me exactly when to expect the results to be back and they are. I hope this continues. I also have a good friend who is a doctor in the oncology field whom I can pester with my 967,000 random questions. She's been a tremendous help. Thank you for chiming in, believe me I'll keep that option filed away if I ever need it.
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LuckyNumber - I love your avatar. My mom donated to World Wildlfe and I got a stuffed blue footed booby as a result.
Mom2Bunky - I hope that the anxiety lessens for you.
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Mom
good luck- our stats are somewhat similar-- oncotype will be very helpful to you in making chemo decisions... I just wanted to reach out to say I am 10 years out- and feel great-- even though I have a few other bumps in the road. It is hard to get through life without some bumps in the road, but as my drs. said at the time (as did the others in other subsequent situations) this is a small thing-you will be just fine. The important part is to be vigilant about your body and any symptoms or unusual things... I think we all get a lot more tuned in to these things after bc if we were not there before....
Good luck-- I had a lumpectomy-it was about 6 hours total at the hospital-- then a bit of a wait for pathology, then a plan.... you will feel 100% better when you have a plan.
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Thank you kindly mom. 10 years that wonderful!
Our stats are very similar. I have IDC though. I’m so happy to hear things get better once there’s a plan
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am sorry you have to walk this path! At first what you are feeling is normal! This thing call cancer can be so scary. But, all you have to do is keep up the faith! Your mind is powerful and can help you heal.
The journey is a hard one but many of us have walked it and you will not died!! You got this!
Via
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Thank you Via!!
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I feel the way you do. I cry so much imagining all the bad things that could happen. I feel sorry for myself thinking I don’t deserve this. I feel ashamed like this diagnosis says something bad about me. I’m scared to tell people the diagnosis. I feel jealous when watching people go about their daily life. I’ angry at the disruption this is to my life and the things I have to miss out on because of it. I hate not knowing what’s going to happen. When I read articles I feel overwhelmed with new vocabulary and more dreadful possibilities. I have trouble sleeping at night. I am a mess right now.
Just venting
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