Birads 5 with calcification
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@lisat8228 Im happy to read that you’re finding your footing. Starting treatment is weird in that is kinda scary, kinda calming and oddly motivating. Best of luck with scans and treatment.
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It’s good you are getting a second opinion at UAB so that you can evaluate your options. Some people might get treatment started in a timely manner but I wasn’t one of them.
An oral surgeon told me that I had cancer (really!) when he biopsied my jawbone which was still not healed a month after a tooth extraction. When he told me I had an infection in the bone I was thrilled it wasn’t bone cancer. He burst my bubble by telling me this only happens to people with cancer or HIV. He was right - I had breast cancer. I had a PICC line inserted into the superior vena cava of my heart and had 8 weeks of IV antibiotics. They wouldn’t do surgery until I was off antibiotics. I don’t know if my tumor was bothering me since the PICC line was in my chest and I was on opioids for 4 months pre surgery. It all worked out OK in the end and hopefully it will for you as well.
I ended up going to the big teaching hospital since my local hospital has three general surgeons and two oncologists who treat every kind of cancer there is. You’ll be able to choose the treatment plan and timeline you feel most comfortable with. I think most people have hiccups along the way because there are so many variables involved.
I’m glad your mom is helping out so that you can deal with all this knowing your children are well cared for. Once treatment starts things get better because you know you are eradicating what doesn’t belong in your body. I hope your appointment goes well.
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UAB is topnotch—it's one of the nation's leading university teaching hospital systems.
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@illimae Thanks so much! It’s a rollercoaster, literally!
@maggie15 @chisandy im completely confident that UAB is going to be a better experience. I haven't even had my first appointment yet, and it's already been more helpful. They reached out proactively, shared a ton of resources I didn’t even know existed, and offered to sign me up for them without me having to ask. I’m sure similar support is available in Tuscaloosa, but the difference is that UAB actually cares enough to provide it, unlike in Tuscaloosa, where it feels like they intentionally keep that information to themselves.
@scaredme My PET scan is scheduled for Tuesday. I was instructed to avoid all sugars and carbohydrates on Monday and to drink at least 80 ounces of water throughout the day. I truly wish they would’ve did this scan earlier. Im so scared of what it might uncover. I just have too many symptoms that’s not primary BC related 😭I’ll keep y'all updated.
SN: I searched through threads where PET scans were discussed, and in nearly every post, the scan revealed something 😔. I just want a fair chance to beat this 😞
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The waiting game is the absolute worst. I am really hoping that they can give you results from your PET Scan ASAP so that you can put this out of your mind and focus on your upcoming treatment. Isn't it crazy how you'll be happy with "just" stage 2 or 3 Cancer once you get the results? The mind is a crazy thing.
I'm assuming that this is the last piece they need before they start treatment. I actually started chemo the same day I got my results, which was also the same day I got my port placed (What a long day that was!) It was a crazy time.. during Covid so I had to do it all by myself.
Wishing you good news this week. I am thinking about you and keeping my fingers crossed.
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@lisat8228, I had a FES PET scan (rather than the usual FDG PET) looking for E+ lesions. My MO told me that all kinds of things like arthritis, inflammation and prior musculoskeletal injury would light up on the FDG given my medical history. In spite of that my pulmonary fibrosis lit up since it happens to have estrogen receptors. The radiologist knew what it was since all my chest CTs were in my record. Just because there is uptake doesn’t mean there is cancer. Doctors use your medical history and prior imaging to interpret what they find. Even if a biopsy needs to be done it can be benign. The PET found no metastasis and my MO and I learned something about PF.
I hope your PET shows nothing of concern.
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@maggie15 You’re really giving me so much hope 😫 Once these scans are done and treatment starts, I’m planning a solo trip. I’ve never taken one before and have no idea where I’ll go, but I know I need it. I just need to get away for a bit. Have you ever done something like that?
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I had a CT scan and have also have had MRIs along the way. I think it may depend on the center you go to. Even with my last scare, they did not do a PET scan.. they moved to biopsy when the CAT Scan and MRI results were inconclusive.
Good luck today. Treat yourself to something sweet and wonderful after the scan. I can't imagine having young children and going through this. Mine were 14 and 18 when I was diagnosed and were really helpful in getting things done (as was my husband). If you want a few days alone, take it.. you certainly deserve something fun to look forward to.
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The PET scan and EKG went smoothly this morning. I expect the results will be available on the portal before my upcoming appointments, the 5th with my new care team at UAB and the 13th with my current oncologist (not sure why it’s so far out). I’m going to do my best to avoid opening the report 😭 Physically, today has been rough. My breast is extremely painful, and I’m starting to wonder if the tumor is now actually affecting the muscle. I’m also feeling discomfort in the upper middle part of my back and I’ve noticed the short of breath comes when lying down. I wonder if that could possibly due to the tumor’s position. Honestly, I’d be shocked if the PET scan doesn’t show something unusual. And let’s not forget the persistent leg pain. It just feels like so much is happening all at once. Still, as the saying goes, “Faith the size of a mustard seed”, that’s all it takes. I’m holding onto hope that, despite the pain and uncertainty, things will work out in the end.
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I would imagine that they would call you with the results long that appointment, but who knows. If not, that is terrible. You could probably call the office if you want to talk to someone before that. I'd agree that you do not want to open the report yourself if you can keep from doing so.
I seriously went down a rabbit hole last year at this time, 100% convinced that I had mets in my sternum, so I am still holding out hope for you. Stress can do a lot to a body and once again, keep in mind that Stage 4 de Novo is rare. The odds are in your favor.
Not sure if you have a script for Ativan or Lorazapam (or pot gummies if they are legal in your state), but I would highly recommend you get one. Worry at this point is understandable, but it isn't going to help you. Stay strong.
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@scaredme I’ve been trying to remind myself that worrying won’t change the outcome, it just adds more stress to everything else I’m already dealing with. Easier said than done, though.
The mental rabbit holes are brutal, especially at night. I’ve convinced myself I have every type of metastasis imaginable. Breathing issues? Must be lung mets. Leg pain? Femur mets. Headaches? Brain mets. Back pain? Spine. Nausea? Liver. 😭😭
Honestly, I feel like if the PET scan comes back clean, half these symptoms might just vanish. I even convinced myself I was losing weight… then I stepped on the scale and turns out, I’d gained. Just like you said, it’s wild how powerful the mind is.
Cancer messes with everything, even normal emotions. It’s like it rewires your instincts. And I know that even if I beat this, life won’t go back to what it was. A simple cold will probably send me into panic mode.
I also feel like if I had the energy to actually get out of bed, I wouldn’t be spiraling this badly. The fatigue is unreal, like my ankles are shackled to the bedposts or something. lol.
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Pet scan results are on the portal 😭😭 I’m soooooo scared to look at them. I’m panicking so bad. Idk what to do. I don’t want to know. This is so hard. Lord, why me.
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Not sure what I'd do at this point.. A week is a long time to wait.. What does your family say? It would drive my husband nuts..
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@scaredme They're just as scared as I am. I wish I had the courage to open them. They've been accessible since yesterday morning. I wrapped up my scan around 10:30, and the results were posted to the portal at 10:55. Im wondering if my doctor has even looked at them yet. He hasn’t called.
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@lisat8228
Maybe such a quick turnaround is good news? Thinking that if they found something, they'd need to classify it.
I know that my lymph node biopsies took forever to come back..
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How are you doing? Hoping that you have come to some peace about your decision whether to wait or not on looking at the results.
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@scaredme Thank you so much for checking on me. I've taken some time to settle down and decided that I'll wait to review everything with my oncologist. Right now, I'm at peace with not knowing. I feel it's better to hold onto the possibility that it might be nothing than to open it now, risk seeing something concerning, and still have to wait a whole week before I can talk it through with my oncologist. I'm going to do my best to enjoy what might be the last calm weekend I have for a while
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Thinking of you today. I hope you get some answers today from the new Oncology care team.
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@scaredme I just wanted to check in and share an update with my girls. I got a call from my radiation oncologist today, and I’m so relieved and grateful to say that the PET scan results were good. The cancer hasn’t spread beyond my breast. On top of that, my genetic test also came back clear, it’s not hereditary.
I truly can’t thank you all enough for keeping me in your thoughts. Your support means more to me than words can express.
Let the fight begin 🥊
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That is fantastic news! I 100% know the feeling of relief you are feeling now. I wonder if your symptoms will disappear now that you know they aren't being caused by the Cancer. The mind is a crazy thing.
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YAY 🎉
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Great news on the PET and genetic testing!
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@scaredme Even though my scan was good and what I was feeling doesn’t appear to be related to the cancer, I don’t believe my symptoms are just in my head. After I got the call from my oncologist, I went ahead and opened my results. The PET scan did show a minor spinal injury unrelated to my breast cancer. I've had occasional back and shoulder pain here and there for years, likely from carrying large breasts on a small frame. I still have permanent shoulder indents from bra straps, even 13 years post breast reduction surgery. Maybe my chronic, untreated back pain has just worsened coincidentally with the cancer diagnosis. As for the shortness of breath, I’ve noticed it mostly when lying down, possibly due to the tumor’s position. As for the leg pain, I’m not sure yet. We’ll have to wait and see if that magically disappears. Lol
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I had my appointment at UAB today and met with the breast specialist NP, oncologist, radiation oncologist, and surgeon. We reviewed the treatment plan from my current oncologist in Tuscaloosa, and it matches what UAB recommends. The UAB oncologist suggested I move forward with treatment in Tuscaloosa since they can’t get me started for at least two more weeks. He said the Tuscaloosa plan is solid, and I'm already scheduled to start on the 13th, which is much sooner. He also mentioned I can still return to UAB for my mastectomy if I choose. I’m torn. I really wanted to be treated at UAB, but starting sooner in Tuscaloosa seems like the best option right now.
Note: I received my staging today as Stage 2A. I was told by my radiology oncologist that the tumor measures 3.9cm.
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It’s great that UAB agrees with the Tuscaloosa plan. At this point it’s probably a good idea to get underway with treatment. Having surgery done at UAB might still be a good idea depending on the expertise of the surgeons available locally. I had an excellent cosmetic outcome with an oncoplastic lumpectomy on my 3.2 cm tumor which would not have been possible if the breast surgeon didn’t have that training. In spite of going to a top hospital I had a rare pulmonary reaction to radiation so while I received immediate and ongoig treatment it didn’t prevent it from happening. Once treatment is underway things seem more manageable.
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@maggie15 The breast surgeon at UAB reviewed all the options with me and confirmed what my local team had already explained. While the risk of recurrence is the same for both a lumpectomy and a mastectomy, a lumpectomy isn’t a good fit for my situation. I have two masses. One is DCIS, and the other is IDC, which is the primary concern. Since the masses are somewhat far apart, a lumpectomy would likely result in significant breast asymmetry. Given that, a mastectomy is the best option for me.
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Great news. Is starting treatment just chemo at this point? If it is, any hospital can do that, it’s pretty standard. Like the onc said, you can return there for surgery and I’m sure any more complicated aspects of treatment in the future.
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@lisat8228
That's reassuring that the UAB teams agrees with your treatment plan. I would definitely double-check that the local plan is to start on the 13th and not just schedule it.
As far as accurate staging, the only way they will really know is after they operate. Your situation is a little more complex than mine since you are recieving chemo before your surgery which could potentially eliminate the tumor and any lymph node involvement (so you may never know).. I am just throwing this out there to warn you because it was something that caught me by surprise (I was upstaged from stage 2 to stage 3 after my mastectomy). This is not likely to effect your treatment, so it isn't worth worrying about.
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@illimae Yes, chemo first. I’m completely on the same page with you. UAB also wants me to repeat all the imaging for their own records. I understand they prefer to rely on their own scans, but honestly, I’m not looking forward to going through it all again. They’ve scheduled me for a new mammogram and ultrasound this Friday, and then an MRI guided biopsy next week. Even though it’ll all be done in under two weeks, it still feels like a lot, especially after everything I’ve already been through.
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