Birads 5 with calcification
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@lisat8228, It's a pain to redo all your imaging but UAB will have better, newer machines than Tuscaloosa. My US and biopsy pathology from the rural hospital were inaccurate so that explained why MGH redid everything. Tuscaloosa is bigger than my local hospital but UAB wants to make sure everything is correct before your treatment begins.
As Illimae said the chemo is pretty standard at any hospital. You'll also be closer to home so you won't have to travel so far after an infusion. Having the surgery and reconstruction if you want it at UAB will most likely give you a better cosmetic outcome. It's good that starting treatment is in sight.
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@maggie15 I completely agree with you about the imaging and I'm actually okay with the idea of repeating some of it if needed. However, I’m leaning toward declining the MRI-guided biopsy.
During my appointment, the radiation oncologist mentioned seeing something on the mammogram of my right breast (I had imaging done on both sides) that looked questionable. She wanted to make sure it wasn't pre-cancerous even though they didn’t see anything on the MRI or Pet scan. But both the oncologist and the breast surgeon who came in afterward said it wouldn’t be necessary to pursue further if I’m already planning on a double mastectomy, which I am so I was surprised when scheduling called today to still schedule me for it.
They were actually really intrigued by the location and feel of my tumor. While it’s not unheard of, invasion into the pectoral muscle is somewhat uncommon, and they all agreed it was a great catch something they definitely would have missed if they were relying solely on a physical exam.
That said, while I know UAB has some of the best doctors, more advanced imaging, and access to more clinical trials, it is also a teaching hospital. With my case being a little unique, I’m sure they would love to use me for teaching purposes. I can tell, just by seeing how fascinated they were with my tumor placement. I just don’t want to go through another biopsy unless it’s absolutely necessary
@scaredme The nurse actually called me that afternoon to set my start date for chemo, and I was given the option to begin on the same day as my next appointment, which is the 13th. So it’s officially set, I’ll be starting treatment that day.
Since I’m doing chemo first, the only information they can go by right now is what showed on the ultrasound, MRI, and PET scan, which thankfully didn’t indicate any lymph node involvement. But I completely understand that staging can still change later on, especially after surgery, and I’ll be sure to keep that in mind moving forward.
For now, I’m just thankful to finally have some answers and feel like there’s a little light at the end of the tunnel. I really appreciate your support, it means a lot.
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@lisat8228 MD Anderson is the same and I had to repeat my initial tests there but I get it their equipment and their techs. I thought it was a pain in the butt but I totally understand the need for the most accurate comparisons. I’ll be checking in on you and how things are going but I wanted to tell you that while chemo does suck, it can be kind of relaxing. My chemo center has heated massage chairs, snacks and TV (most do, I think), I just hang out basically, not too bad.
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I wouldn't want to repeat the biopsy either. That's invasive and it isn't going to change your treatment. It's a big ask from them!
Glad to hear that you have a start date for your chemo! If they haven't given you a script for one already, ask for a numbing cream for your port. They didn't give me one until I complained that it hurt me for them to access it.
I found making a chart and crossing off individual sessions to be helpful as I navigated chemo. I also made it a point to continue with my walking regimen during treatment, which I think really helped me to mitigate side effects. Do not be afraid to take the anti-nausea meds they give you. I took them proactively for the first 1-2 days after chemo, I believe, at least for the A-C part.
I lost my hair around day 17, so you have a few weeks to plan for that. I didn't mind that part so much.. I got a bunch of cute hats off of Etsy and felt kind of liberated being bald.. (If no one had told you, you lose your hair everywhere on your body and not just on your head.. lol).. It was a "unique" experience.
Hoping that you can relax a bit and enjoy your weekend now that you have a plan in place.
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@illimae I’m totally with you—while the extra imaging is definitely a hassle, I know it’s for the best and I’m willing to push through. But another biopsy? 😬 That’s a no for me. Your message gave me a little peace of mind about starting chemo it’s comforting to know it’s not all terrible. Heated massage chairs and snacks actually don’t sound too bad! 😅 I’ll definitely keep you posted on how my first session goes. And if you have any tips or little “chemo hacks” that helped you, I’m all ears. I saw a girl on TikTok say sour candy helped with the saline taste from her port, and ice helped prevent mouth issues ( I think sores) with the Red Devil. I’ll let y’all know how it all works out. Thanks again for everything it really means a lot
@scaredme Thanks so much for sharing the tips. I hadn’t even thought about asking for numbing cream for the port, thank you! I’ll definitely bring it up before my first session. And I love the idea of tracking each session with a chart. it sounds like a good way to stay motivated and feel like I’m making progress. No one warned me about losing the hair everywhere. Lol! Interesting 🤔 I don’t think that will bother me at all. I’ve been more worried about nausea. I’m really praying I’ll be one of the lucky ones with minimal side effects. When the nurse called to schedule, she mentioned that whichever day I start on will be my treatment day each week. That’s actually why I chose Thursdays. I figured being closer to the weekend might help. With summer winding down and school starting back up, I need all the energy I can get at the beginning of the week to get the kids to and from school. Now I’m kind of second guessing and wondering if Fridays would've been better so I could use the weekend to recover. Either way, I’m planning some simple air fryer meals so my 16 year old can help out with cooking on the days I’m not feeling up to it.
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One other thing that I forgot to mention is that AC chemo makes things taste weird! I had many food aversions during that phase in treatment and I am normally not a picky eater.. I couldn't stand the taste of coffee and needed to add salt to everything (like even Ramen and corned beef hash tasted bland). I also couldn't stand plain water so I had to add Propel powder to it (It is really important to stay super hydrated for a few days after treatment). Once I got to the Taxol part of the treatment, everything tasted normal again. I think the reason has something to do with the Chemo destroying cells in your taste buds, but I'm sure that there is a better explanation out there somewhere.
As far as other side effects, I didn't have too many, other than feeling tired, "weird" and "off" for the A-C phase of Chemo. I did develop chronic dry eyes as a lasting effect of treatment (I still am using Restasis years later). I also had neuropathy in my feet which went away when I stopped treatment, but those seemed to be a side effect of Taxol.
I also had slight weight gain. Believe it or not, most women tend to gain weight from Chemo, as odd as it sounds. I think it is related to it putting you into a menopause state, as well as the fact that they give you steroids to mitigate side effects. I was 48 when I went through treatment, but never got a period after Chemo (I am 53 now). This is in part due to my age and the fact that I get Lupron shots every 3 months (to suppress ovulation), but I guess there is like a 90% chance at my age that Chemo would cause permanent menopause anyway. Since you are younger, you may have different results, though your Oncologist may also put you on a Lupron/Aromatase Inhibitor regimen after active treatment to prevent recurrence for 5+ years, which would keep you in menopause during that time.
It sounds like your local Oncologist is doing exactly what my team at Dana Farber did for me (and what I've seen with others with similar diagnoses online) , so I think that you can rest assured that you are getting good care at the moment. However, I would definitely consider switching for your mastectomy and follow-up care since you will have access to Clinical Trials and more support services.
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My local cancer center (Kellogg, in Evanston, IL) gives out Lemonheads hard candies to mask the metallic taste that some chemos produce.
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@scaredme It’s funny you mentioned the weight gain because they actually talked to me about starting a Mediterranean diet. Right now, I’m 245, and they said I’ll probably gain around 20 more pounds by the end of treatment. They told me that’s about the average total women usually gain.
@chisandy You’re now the second person to suggest sour candy. I’ll have to remember to pick some up at the store, just in case they don’t provide any during my treatment. I want to be prepared.
Speaking of weight, ladies… 😅 My breast surgeon was supposed to schedule an appointment for me with the plastic surgeon to discuss reconstruction options. On Friday, I got an email saying I can’t meet with her because my BMI is too high for the surgery. She said I’d need a BMI of 35 or lower before I could have reconstructive surgery (I might be remembering that number wrong, I didn’t feel like digging through the email to double check, lol). She also mentioned she understands it’s not something I want to focus on right now, but the surgery has to be done within 2 years after the mastectomy. After that, I wouldn’t be able to get it. She suggested I talk to my PCP to see if they could prescribe something to help me lose weight.0 -
Hi @lisat8228, You are right to focus on chemo now and then surgery. After that is done your PCP can probably prescribe a GPL-1 med to go along with the Mediterranean diet. My sister lost 70 lbs twice, once with WeightWatchers and more recently (after she regained) with Ozempic. She said the second time was easier in spite of some manageable side effects. Some plastic surgeons have BMI cutoffs of 40 or a number between 35 and 40. You’ll have the time to get to your goal weight after treatment and will be able to focus just on reconstruction and the recovery from that. I hope the chemo goes as well as it possibly can.
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@lisat8228 Im going to say few things that aren’t intended to be discouraging or questioning your doctors, it’s just from personal experience, especially with regards to weight (I was 285 lbs at diagnosis).
A healthy diet is great but can be impossible to maintain on chemo. I’m surprised that anyone gains weight at all. I lost 40lbs during treatment because after a couple months my taste buds and appetite tanked and everything tasted like ass sweat. Veggies were a no, meat was a hell no, only ramen noodles and candy got me through it, even pizza turned on me and that one hurt, I recall crying at work because I was hungry and everything was terrible, lol.
Also, given my weight, I had plenty of breast to work with, my team recommended the surgery to remove a small patch of cancer cell remaining after chemo with a reduction and lift, 2 surgeons, 1 OR, it was about 4 hours and done. Are you having a mastectomy? If that surgery can be done, why is “reconstruction” dependent on BMI?0 -
@maggie15 @illimae
Thank you so much for the much needed advice! I actually spit my juice out at the “ass sweat” comment 😂😂😂. I was definitely looking forward to shed some pounds so I have to admit, I was shocked to learn that some people gain weight during chemo, and even more shocked that my weight would be such a big concern right now when I feel like cancer should be the main focus and everything else secondary. But hey, I’m no doctor.@illimae , please never hesitate to share advice, even if you think it might come off as discouraging. I want it! even if it’s not exactly what I was hoping to hear. That’s why I come here first: because the advice is honest and trusted. So no sugarcoating for me!
Interestingly, these weight loss concerns aren’t even coming from my doctors here in Tuscaloosa. I’ve previously mentioned my weight to both my breast surgeon and radiation oncologist here, and they both told me, “That’s not a concern right now.” The pressure is actually coming from the doctors at UAB (my second opinion). As bad as I wanted to love my visit with them, I left that visit disappointed for two reasons:
1. They tried to push for a second biopsy even after the oncologist there said it wasn’t necessary.2. They put a lot of pressure on me about my weight when I’m already in the middle of fighting cancer.
For me, losing weight is a fight in itself. I can’t battle both at once. I’m also confused about how I can have a mastectomy at my current weight, but not reconstruction. I made it very clear I’d be having a mastectomy, a double one at that. I would think a double mastectomy is a more complicated surgery than reconstructive. But once again, I’m no doctor. lol!
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I’m so relieved to be starting treatment tomorrow, but I haven’t been feeling my best physically these past three days. I’ve had a lingering headache since Sunday, and nothing I take seems to help. I’m pretty sure it’s from all the running around I did last week. All three of my kids started school this week, so I spent everyday last week on the go from sunup to sundown, school shopping, both girls had hair appointments, I had a drs appointments on both Tuesday and Wednesday, plus catering a huge spread for my sister’s gender reveal on Saturday. Imagine the stress. Im glad to be back out the house but I definitely overdid it. lol! I can always tell when my blood pressure is up, and right now it feels like it’s through the roof! Fingers crossed it’s back down by tomorrow.
One more question! sorry for flooding y’all today! I read somewhere that it’s not recommended to share a bathroom during chemo. I have a six-year-old who, despite having her own bathroom (shared with her two siblings), prefers to use mine most of the time. With treatment starting tomorrow, should I keep her from using my bathroom?2 -
@lisat8228 Yay for getting started tomorrow. For the bathroom issue, I’ve heard that too but my husband always used our bathroom no matter what without any issues. You might discourage her for now but I’d double flush, just in case.
Do you have someone going with you tomorrow? Do you have plenty of mints and snacks? I definitely recommend getting a warm blanket, even if you don’t think you’ll need one and try to go to the bathroom before the hook you up, so you don’t have to drag the pole around. I’ll be thinking of you and will look out for an update if that IV Benadryl hasn’t knocked you out for the day.
good luck and rest well 🙂0 -
The "no sharing bathroom" advice is likely due to chemo patients being immunocompromised. But during the early part of the COVID pandemic the same advice was given to families of physicians treating COVID patients. (I made my husband change in the garage and put his scrubs in a trash bag to be hot-laundered). I laid in a supply of Lysol & Clorox wipes and wiped down every surface he might have touched in the bathroom—including faucet & toilet handles, doorknobs, light switches, the seat, etc. But you will likely receive a shot of Neulasta the day after chemo (or be given the OnPro wearable device that auto-doses you the next day) to help your immune system. The reason for weight gain during chemo is usually the steroids administered to prevent nausea, vomiting & inflammation; but taste disturbances vary from patient to patient and it's possible that the only nutrition some find palatable is also fattening, Some also turn to THC (sativa especially) to fight anorexia, and the resultant "munchies" can also put on weight. And different subtypes of breast cancer require different chemo and targeted therapy regimens—some of which can affect taste buds differently,
My BFF had a BMI of 40 when she was diagnosed with widely disseminated Grade 3 DCIS and because she hadn't worn a bra in decades opted for bilateral mastectomy without reconstruction. But her surgeon offered her reconstruction (and assumed right up until it was time to be wheeled into the OR that her surgery would include it).
My BMI at the time of my lumpectomy was 32—and after a few years on an AI had climbed as high as 34.4 (211 lbs). I was put on the wait list for the hospital's weight management clinic when I hit that not-so-magic number, but was given a copy of the suggested very low carb diet. By the time a place in the program opened, I had gotten down to 196. That near-keto diet got me down below 150, even during the pandemic. I fell off the wagon after my ocular melanoma diagnosis and threw myself a pity party. By Jan. 2024, my BFF was dying (of a stroke after double-bypass caused by her T2D, I was her healthcare proxy, and I had just lost my beloved kitty). When I went to the endocrinologist for my semiannual osteoporosis checkup, and the scale said 183, she asked if there was anything I wanted to tell her. I unloaded, and she suggested Zepbound (tirzepatide), a second-generation GLP-1 which is also a GIP (regulates insulin aa well as hunger). I managed to make it all the way down to 135—15 lbs below initial goal and 5 lbs below revised goal on the minimum "starter" dose of 2.5mg. After maintaining for 6 months, the food noise began creeping back so I went up to 5mg (considered the lowest effective therapeutic dose, though most patients go at least to 10 if not 12.5 or even 15mg). I've been at 132 lbs on 5mg for 7 months now!
One thing I read was a mouse study in Japan—obese mice who'd been given breast tumors were then administered tirzepatide. They lost 25% of their body weight…but also their tumors shrsnk by 25%. Mice are not humans, but just putting it out there…
I wouldn't start a GLP-1 while still on chemo, though—the combined GI side effects of both therapies would be additive and thus intensified ("potentiated").
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@lisat8828
Best of luck today! I hope that everything goes smoothly for you.
That is interesting about the reconstruction surgery and BMI. I had both done at the same time and the reconstruction was a much more complex surgery (and purely cosmetic), so that's probably why. The only thing I heard was that they don't want you to do it (the reconstruction) if you are a smoker since that is supposed to impede healing.
As far as weight, they are probably fairly accurate with that 20 pound statistic, but they are likely considering all treatment and not just chemo. I gained 3 pounds during chemo, but added another 12 with the meds that I am on now, for a total of about 15 over where I started. It is hard to say where I would have landed if I hadn't had this happen since I'd likely be in menopause now anyway. Although the weight gain pisses me off, I am happy to be here 5 years after a stage 3 diagnosis and I'm sure that I can attribute most of that to the meds I'm on. As my kids (and husband) say, they don't care at all about my weight, just the fact that I am still here. It is quite a perspective.
Focus on getting through chemo right now and try not to worry too much about the BMI thing, You have enough on your plate (no pun intended) at the moment. You may also want to ask your local team about it.
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Thank you so much, ladies. I’ve read all of your advice and comments and truly considered everything you’ve shared. Honestly, I trust y’all more than I trust myself sometimes lol!
Just wanted to give you a quick update. My headache finally went away, and I woke up feeling calmer and in better spirits. However, as I suspected, my blood pressure was high today at 170/105. I’m almost certain it was even higher yesterday and Sunday.
Before my chemo session, I spoke briefly with my oncologist. He told me my PET scan, echo report, and tumor marker tests all came back good. I still need to do a little research on “tumor markers” since I’m not sure exactly what they are or how they work.
My first chemo session went really smoothly. They sprayed my port site with lidocaine before inserting the needle, so I barely felt a pinch. The candy really helped with the saline taste, and the whole session was surprisingly peaceful. Like one of you mentioned, it honestly felt more like I was just hanging out.
So far, I haven’t experienced any side effects except for red pee. no nausea, nothing, just a little sleepiness, which I think is from the Benadryl. They prescribed me two different nausea medications (Zofran and another stronger one) so I can switch if one doesn’t work. I was told to take it before bed since nausea for some people starts 1–2 days after treatment. Fingers crossed I’ll be one of the lucky ones who doesn’t get hit too hard.
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@lisat8228 Im glad everything went well today. The pre chemo meds given on infusion day usually result in little to no side effects on the day of treatment but watch out for the nausea, diarrhea and other things on the list in the coming days/weeks. After a few rounds, it should be clear what you’re dealing with and when to medicate.
Tumor markers are tested at each infusion or at your follow up with your oncologist and they basically measure cancer cells within your blood. Some people stay in the normal range even if there is cancer progression (we see this with stage IV more) and for others higher numbers accurately predict trouble brewing. But, and it’s a big but, markers can be elevated from meds like Tylenol and even dead cancer cells during chemo. Many doctors will watch for a pattern and order a CT and/or MRI to see what’s really going on.
Thanks for checking in, I was wondering.1 -
@illimae
the funny thing is, I always try to give yall updates in real time. Most of the time, I’ll start typing while I’m still at the appointment, lol, and then end up having to finish it later 😂. Y’all are honestly the first people I’m eager to update, but it takes me all day because once I leave, I’m back to juggling kids and doing a million things. I’m always telling drs, nurses, receptionists, or anyone who will listen about this group and how yall have helped me in this journey. Most of what the doctors tell me, I already know thanks to this group. Maybe I’m getting ahead of myself, but I can’t help wondering how soon I’ll start to notice the tumor shrinking.2 -
@lisat8828
How are you feeling this morning? When I did AC chemo, I would proactively take the anti-nausea meds for a few days after the infusion.. I'm glad that they told you to take them before going to bed.
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@scaredme Thanks for asking! So far, so good, still no nausea, so I’m guessing the nausea meds are doing their job. I have noticed that I’ve been sleeping a lot between yesterday and today. I slept well last night, took the kids to school this morning, and then came back home and slept another four hours. I forgot to mention yesterday that they put a patch on me that’s programmed to give me a booster shot today around 1:00 p.m. (any minute now). It’s meant to help boost me back up. They originally wanted me to come in for the shot, but thankfully my insurance approved the patch instead.
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@lisat8828
I am so happy to hear that you are feeling ok. Not sure if your Oncologist mentioned it, but Neulasta can cause bone pain. Claritin works pretty well to combat that, so make sure that you go out and grab some and take it for the next few days.
https://www.drugs.com/medical-answers/you-claritin-neulasta-3548526/
Sleep all you can!!!
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@lisat8828
Had to look through my own story to give you an idea of where certain things might land. I had the dose dense regimen so I had infusions every 2 weeks. It sounds like you will be doing every 3 weeks, so hoping that you get 2 good weeks between cycles.
1.) Day 3: Finished oral steriods
2.) Day 4: Food aversions began
3.) Day 6: Felt back to normal, but keep in mind that chemo side effects can be cumulative so you may feel worse after each cycle.
4.) Day 13: Shaved my head before my second infusion due to so much hair loss. Wanted to get ahead of it.
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@scaredme I will also be getting infusions every two weeks. Today has been rough 😭. I woke up around 2 AM feeling nauseous, with a dry mouth and sore throat. I took my nausea meds, drank plenty of cold water, and went back to sleep. I still feel weak and overall unwell, and all I want to do is stay in bed and rest. It’s such a big change from how I felt yesterday.
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If you haven't already, set your alarm to take the anti-nausea medication on a set schedule, and I mean round the clock. I did that for the first several days. Do they have you on a steroid too? That is supposed to help lessen symptoms as well. Also, I hope you got my earlier message about taking Claritin.
Try to sleep as much as you can. My Oncologist prescribed Lorazapam which you can use to induce sleep when you feel lousy. This won't last forever. You will very likely have a good week before your next infusion. Time to make that chart and cross off Session 1 when you cross over the hump.
You can do this. Can you imagine how awful your tumor is feeling right now? lol
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@scaredme I’ve been trying to reply since yesterday, but I was feeling really rough. Around noon, I started with a light headache, and by 4pm it turned into one of the worst migraines I’ve ever had. I tried lying in the dark hoping it would pass, but it didn’t. I searched the group to see if there was anything I could take that wouldn’t interfere with chemo, but I couldn’t find anything. I did see someone mention that their anti nausea meds caused headaches, so I avoided taking any more last night. Still, the headache wouldn’t ease up. My partner remembered me saying I had woken up with a dry mouth the night before and suggested I might be dehydrated, that I needed electrolytes, not just water. I drank a Gatorade, and within 30 minutes my migraine was gone. Thanks so much for keeping me on my toes about getting through this. And I did see your message about the bone pain and Claritin. So far I haven’t had any but I’m sure that’s subject to change so I’ll get some today to keep on standby. The imagine how your tumor feels joke is so real! Lol! I can already tell it has shrunk significantly!
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@lisat8828
Glad you found the cause of your migraine. I had my first about a month ago and had to go to the ER for them to give me a "migraine cocktail", so I realize how awful they can be. Not sure if marijuana is legal in your state, but my husband and I use the 1 mg gummies (2 of them) for headaches and they work well (but I would check with your Oncologist first). My daughter is a nurse and used to work in the ER and apparently many people go in for help with migraines, so I wouldn't hesitate to go if the pain reaches that level again. I also would reach out to your Oncologist if any of this is unbearable. They are the experts and can offer you the best advice. The goal is to tweak the meds to lessen/reduce symptoms. You will get better at this with each cycle, so the first one will likely be your worst.
I would drink Propel frequently (just add a powder packet to water) for the first 5 days or so.. Get yourself a 40 ounce cup with a straw and try to drink at least 2 of them a day, 3 would even be better. You need to get that chemo out of your body!!
I had chemo after my mastectomy, but that's fantastic that you feel like the tumor has shrunk already. It's doing it's job!! My husband used to personify my tumor and comment about what a bad day it was for it when I went in for my surgeries and it was waking up in a cold room instead of in me with a blood supply.. It definitely helped.
Hang in there and keep us posted.. Hopefully the worst is behind you. If you feel up to it, I found that walking also helped me a lot. Hugs.
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@maggie15 @scaredme @illimae @chisandy
I have a question, ladies! Other than waking up a little nauseous and the dehydrated headache on Friday, I’ve been perfectly fine. Honestly, I feel completely normal. Wednesday, Thursday, Saturday, and today I’ve felt just like myself. Should I be worried that the chemo isn’t working? I actually feel like my tumor might be smaller, but y’all know how my mind can play tricks on me. Lol! I just don’t feel anything like I thought I would. I’m not sure if I should be worried or thankful that I’m not having a hard time.0 -
@lisat8228 No, I wouldn’t worry, in fact, I worked throughout chemo and felt pretty normal early on but as someone mentioned, the effects are cumulative and tend to sort of pile up over time. I think the hair loss started around my 3rd infusion and other usual side effects after at about 3 months. Make the most of this time as it’s unlikely to last, sorry but that’s the honest truth for most people. On a positive note, once chemo is finished, I found that I bounced back quicker than i thought. Hopefully, you have an easier response but be prepared, it can hit slowly or hard and out of the blue.
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@illimae Thank you so much for sharing your experience with me! I definitely appreciate (and secretly look forward to) your brutal honesty as always 😂. It actually helps me feel more prepared knowing what might be ahead instead of just bracing for the unknown. I’ll take your advice and soak up feeling normal while I can. And I love hearing that you bounced back quicker than expected once it was all over. that gives me something positive to hold onto, especially since I’ve been seeing a lot of negative “after chemo” experiences.
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As I never had chemo, I have no advice—but illimae is spot-on.
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