Best Of
Re: Zoom Meet-Up Bonded by Breast Cancer: Place to Keep Chatting
@moderators
With the sciatica-like pain I'm pretty much limited to laying down or standing up and can’t work, so I should be able to attend the Friday group. Can you send me the email with the link?
Thanks for getting back to me. I’ll check out the podcast now.
Re: STEAM ROOM FOR ANGER
My turn to vent about a tangentially related issue. My parents insist on aging at home and 3 to 6 hours away from me and my 2 younger sisters. There are sibling dynamics that complicate the situation, but long story short, the youngest sister has chosen to martyr herself as their primary source of transportation to the more complex medical visits for only my dad. Mom is in denial about her cognitive decline in spite of both her mother and brother having Alzheimer’s. Dad is the son of a surgeon and surgical nurse and like preachers kids, he is a doctor’s worst nightmare.
Our middle sister pretty much keeps her mouth closed and doesn’t want to be involved in conflict. Our youngest sister has always had the feeling that she wasn’t given the same attention we got because she was always in trouble. She lied constantly, often broke the very lenient rules our parents set and never appreciated the things our parents did for us because she expected to be treated like the wealthier friends we grew up around. That sets the stage…mostly.
I’m estranged from our youngest because of her attitude towards my chemotherapy and prohibiting me from having access to the $12k quilting machine my mother bought for us and specifically for me to use during my treatment. It was located at sister’s house and she said my chemotherapy was hazardous to her health.
Okay TMI,
So today she group texts us about dad’s latest Dr appointments regarding the edema in his legs. Dad is resisting the recommended options and not understanding that the solution is not one single thing but a combination of things that work together. So I text some recommendations and get shot down on every single one. My sister’s text responses are thinly veiled but the message is clear… butt out and let me handle this.
I’ve been dealing with lymphedema for years so I know a little bit about how to handle chronic swelling. I realize that I am short on patience right now because I’m in so much pain with my current sciatica mystery, but I’m just so annoyed by the dismissive attitude of my sister. I’ve tried to get the 3 of us to act together to get our parents the best possible in home resources so they can remain in their home as they wish, but I get pushback every time I recommend anything.
Thanks for listening. Just needed to get it off my chest.
Re: Were you diagnosed young (under 45) with breast cancer? We'd love to hear from you!
@lexa_voltz
We’re so sorry we missed your post! We can feel the weight of everything you’re carrying — chemo, surgery, learning about your BRCA2 mutation, and now facing another big decision while still healing. It’s a lot, and it’s okay if some days you feel strong and other days not so much.
With BRCA2, doctors often recommend a bilateral mastectomy to lower future risk, but that’s only part of the picture. You’re in the driver’s seat. Another surgery might feel overwhelming right now… or like peace of mind. Only you can know.
Ask yourself: In five years, which choice will bring me more peace? Will regular screenings feel reassuring or stressful? Do I need to decide now, or give myself time to heal? Talking with a genetic counselor or getting a second opinion can help bring clarity.
You’ve already shown so much courage and self-advocacy. Whatever you choose, it’s your body, your story, your life.
Sending you strength and clarity,
Your Mods
Re: Having difficulty feeling 100% certain that I want a prophylactic bilateral mastectomy
Hi @lexa_voltz
Sorry you have joined our club that no one wants to be a part of, but glad that you have found us.
I don't have the BRACA-2 gene mutation, so my decisions don't compare so well to yours. I noticed you haven't had any replies yet, so I decided to respond anyway. The one thing we all have in common is there are always really tough decisions we end up making. I have found that reading and informing yourself as much as possible is a good first tool. Beyond that, follow your gut. Once you make your decision, it is the right decision for you. No regrets. None of us has a crystal ball to know in the future if the decisions we make are going to work out well or not so well. Make your decision, follow up any action needed for it and move on. (Easy to say right?)
You might try using the search tool to find other posts related to BRACA. You could also start another post and specifically put BRACA in the title to attract the attention of others who have had to make decisions related to this genetic.
Best of luck with your decisions.
Take Care.
mandy23
Re: Stage IV MBC Fitness
Here is an interesting High Intensity Interval Training Calculator. HIIT is recommended to reduce fatigue, improve outcomes, etc. but I had a hard time finding an actual definition of what that meant. Now we have a definition somewhat calibrated to age and fitness.
For those of us with Fitbits, some have heart rate monitors which will help if you are going for this HIIT plan.
I like Dr. Truitt generally when I am looking for a forward thinking medical perspective; however, he doesn't specialize in cancer.
>Z<
zarovka
Lumpectomy Planning: intraoperative margin techniques and need for a sentinel lymph node biopsy
I'm trying to help my spouse plan out a lumpectomy for her early stage breast cancer. Two things have come up in research:
- "no ink on tumor" margins are difficult to ensure and there is a risk for reexcision. It looks like there are techniques like Frozen Section Pathology or Fluorescence Guided Imaging that helps lower the risk for positive margins and the need for reexcision. How effective are these and are they worth seeking out?
- Does a sentinel lymph node biopsy ever not get performed? She has a T2 tumor with mucinous features, N0 clinical node status and is young for developing cancer.
Xgeva concerns about whitening my teeth
I’ve gone down the rabbit hole so many times trying to find answers on my own and then I stumbled upon this group. Maybe someone is in my situation and can help? I was diagnosed with PE+ and HER- breast cancer in 2014. I had 3 months of Adryimician/Cytoxin followed by 3 months of Taxotere. I am one of the many that my hair came back in a male patterned bald style🙄. Anyway, at the moment that is not my biggest problem. I had a double mastectomy with d-flap. I then had 36 radiation treatments.
After 8 1/2 years on Anastozole, I was told I could get off of it. I was very relieved because the hip and joint pain was horrific.
2 months later I had a bunionectomy and while I was rehabbing with PT, I began having severe pain in my groin and my hip. My PT thought it might have been from walking incorrectly for so many years so we quit the foot rehab and began to focus on the hip pain. I started using a walking stick to reduced some of the weight/pain. 2 months later I stepped wrong and jammed my leg. I fell to the ground in the worst imaginable pain. PT sent me for an MRI and this is were it begins.
Diagnosis: broken pelvis, stage 4 bone metastasis in left and right femur heads and the roof of the left acetabulum. That was last April (2024)
I’m now on monthly injections of fulvestrant and Xgeva and oral Ibrance. The Xgeva thing always made me nervous as they made me get clearance from my dentist the onset explaining that if I had any gum disease or teeth fractures it could cause necrosis of the jaw. I actually had an unnoticed fracture so my dentist banded it and capped it. It still makes me nervous.
All of this to get to my question: is it safe for me to whiten my teeth with the trays and gel? Does this weaken my teeth or put my mouth in any danger?
I fight with my lack of hair daily and now my teeth aren’t as bright. It’s hard enough living with a stage 4 diagnosis but to also be self conscious about your appearance doesn’t help! Has anyone successfully whitened their teeth while on Xgeva?
Re: Birads 5 with calcification
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.
Re: Abemaciclib Verzenio for Stage IV
Had my 58th faslodex injections today! Blood work showed high creatinine and low GFR.
Re: Abemaciclib Verzenio for Stage IV
@marcials1 I forgot to update you on my UTI symptoms. It was a bladder infection after all. The antibiotics knocked it out very quickly. I still get that uncomfortable feeling now but it’s definitely improved since getting rid of the infection.
I’ll be having a detailed discussion about letrozole with my oncology team in early September. I’ll definitely share what she says. I’m supposed to be seeing the PA but I’m using the messaging portal and it’s Journal feature to make sure I get the most information from the MO that I can.
I ended up in the ER yesterday with “sciatica” pain in my right leg. It was a very unpleasant experience. They said AIs can trigger sciatica-like symptoms. Joy! What really makes me mad is that it felt like the folks at this particular ER were just interested in getting patients out the door. I wasn’t given enough medication to get the pain under control before they booted me out the door. I had been treated like a druggie at an ER when I was in my 20’s and suffering from a migraine. Until I had a neurologist who made sure my medical records reflected my condition, I never went back to an ER for an unbearable migraine until my 30’s. The neurologist was horrified when I told him my self-treatment for really bad migraines was to hit myself in the head with a blunt object. Anyway, I won’t be going back to that particular hospital again.
My GP has put me on a course of steroids starting today and recommended reducing the 300mg gabapentin 3x and terminating the naproxen 500mg 2x that the ER put me on. Driving is extremely painful and I’ve had a pain level between 6 and 7 all day. I gave in and applied generic Voltaren to my leg and went to bed. I’m curious to hear how many ladies have developed sciatica while on AIs.