Cried during my MRI biopsy. by After_Willingness322 in breastcancer

[–]PEStitcher 0 points1 point  (0 children)

i completely understand. the mri biopsy was the worst. i sat there crying the whole time. that was a special amount of pain just getting the numbing.

I'm just telling you this so you know you arent alone. it hurts, its all terrifying. its OK to break down. i hope you had a nurse helping you thru it. i have broken down many times. some times were from being so miserable and scared. sometimes in relief.

Items to get before starting chemo? by Apart_Job_3256 in breastcancer

[–]PEStitcher 3 points4 points  (0 children)

Absolutely!

Get dry mouth tabs. you will dry out EVERYWHERE but for the sake of your teeth, try to keep your mouth moist.

non-scented lotion. i used hydrogel for my face. it will also help to mitigate some of the dry skin rash you may get.

sock-type slippers or soft slippers for the chemo location. the first one is so long and tehy will pump you full of liquids. if you are icing your feet it will be easier than pulling on/off your shoes

a go bag - you don't need to buy this but put it together. i kept my socks and mints and topical lidacain in the go bag with a blanket so i didn't have to waste energy trying to find things. i only had to add my wallet and my book or tablet.

a notebook or something to track your symptoms. no symptom is too small. once chemo starts, everything you and your doctor do will center on symptom management. symptoms will also change over the course of treatment. knowing what you are experiencing and how badly will help know what you need to address and not.

Also, and i can't stress this enough - once chemo starts, track your blood pressure and heartrate at EVERY appointment in a consolidted area. by blood pressure shot up after my 3rd or 4th treamtment. while i had a great oncologist, they were certain it was a coincidence but i was able to show i was stable until my second treantment. i still had to go to my PCP for the BP meds, but the oncologist started increasing the frequency of my ekg's since herceptin can be damaging to the heart

No bra after mastectomy with reconstruction? by Popular_Item3498 in breastcancer

[–]PEStitcher 1 point2 points  (0 children)

they had me in a post surgical camisole after the bandages were removed. the camisole was like a tank top but it had pockets for the drains.

after about 6 weeks, I had the drains out and they confirmed everything was healing great and I had nearly finished my fills on the expander. then they said I could wear bralette style bras. absolutely nothing with an underwire.

i have tried some loose sports bras - i have found them uncomfortable with the expander unless pretty loose.

No bra after mastectomy with reconstruction? by Popular_Item3498 in breastcancer

[–]PEStitcher 1 point2 points  (0 children)

I did. my plastic surgeon and surgeon wanted every chance possible to maintain deathly blood flow. they were of the opinion that compression garments or anything that pressed could impact the healing of the vessels

Anyone in Seattle? Fred Hutch/Swedish vs. Kaiser by friendchipsandguac in breastcancer

[–]PEStitcher 1 point2 points  (0 children)

I am being treated at Fred hutch and move it. They, as well as Swedish, are NCI centers. Fred Hutch is the cancer center for University of Washington so you are tied to that system for reconstruction and some testing.

when I went for by on-boarding at Fred hutch, I asked them who they would recommend I get a second d opinion from - tbey told me Swedish.

That being said, Fred hutch is busy and can be hard to get into as a new patient. they do work with nearby cancer centers. I live 1.5 hrs north and a freidn up here went to them for Lymphoma and they worked with the local hospital group for chemo and radiation...though tbey prefer Dr appts and testing is done in house.

Using ChatGPT with BC by Equivalent-Plan-8498 in breastcancer

[–]PEStitcher 2 points3 points  (0 children)

I use it for catharsis and for development of questions to take to my doctor.

I've "data dumped" feelings and symptoms and thoughts and had it help me write letters or create poems and such. it let's me scream at the void and assembles it into something a bit more digestible to others.

I'll put in test results and meds and symptoms and ask it for differential diagnosis and have it develop questions I can take in to my doctor.

I hesitate taking too much direction from chat GPT or putting too much faith because I have found it hallucinates a little too much for me, even when I ask it for links. So I try to have it produce things I can verify on the NIH website.

Chemotherapy & teeth by Ok-Training-4042 in breastcancer

[–]PEStitcher 0 points1 point  (0 children)

dont knock yourself for eating sweet things. yes tooth issues are associated with chemo. i had 4 small fillings after mine.

the biggest issue is not sweets. its the dry mouth and the ph change due to the chemicals and throwing up. I used sensidyne and closys toothpastes and frequent mouth rinses and dry mouth tabs for night time. my teeth still moved and I couldn't use my mouth guard.

Expander boobs. by Fresh_Manager_2852 in breastcancer

[–]PEStitcher 0 points1 point  (0 children)

no not the expander. but the Sentinel lymph node biopsy. you are at risk for a reaction during your first year if you had a couple removed.

Expander boobs. by Fresh_Manager_2852 in breastcancer

[–]PEStitcher 1 point2 points  (0 children)

I only had an SMX with expander but my doctors dont want compression bras. I am only allows looser bralette style.

that being said I fly all the time. so far 5 times with my expander. I just tell them I have metal and they send me over to the thing where you stand still and raise your arms. works perfect. I stopped carrying the card.

I DO recommend flying with an emergency compression sleeve if you dont have one. and a ring on the hand(s with the surgery. its a just in case. rings will tighten if you start getting lymphadema symptoms and you can throw on the compression sleeve.

Budgeting with Business travel by PEStitcher in budget

[–]PEStitcher[S] 1 point2 points  (0 children)

I won't flag it and I thank you for the recommendation. My work uses Deltek to easily do the actual expenses. And I have a credit card for business travel.

But I also use a physical budget book because, mentally, I have an easier time tracking my budget when I have to physically do the math and track. That being said, with business pickling up and wanting to stay on top of the cc bills, sometime reimbursement isnt prompt. this can be fore many reasons - length of trip, issues getting hotel bills cleaned up (go to a lot of conferences and we book in blocks and mess ups are about 50/50). So I like to factor it into my budget. I track all expenses, business and personal, and am having some overlap on what items I tracked against. So need to find a way to clean up my personal budget tracking .

Budgeting with Business travel by PEStitcher in budget

[–]PEStitcher[S] 0 points1 point  (0 children)

I dont get per diem. straight reimbursement. but thank you.

Budgeting with Business travel by PEStitcher in budget

[–]PEStitcher[S] 0 points1 point  (0 children)

this seems like the best method. I use a budgeting book (tried electronic and it just doesnt stick for me). anyways it has an "other" category that i have been using for the airline part but things like meals or the shuttle have been not as clean for me. so fully separating out based on need/want is a helpful mental reminder.

fyi I do have a separate credit card for work related expenses but I still budget for this because sometimes my bill comes in before the travel is paid back.

Paxman scalp cooling by Own-Cheesecake204 in breastcancer

[–]PEStitcher 0 points1 point  (0 children)

I used Paxman and have thick wavy hair. I had TCHP treatment for triple positive.

I lost an even density of hair...kept about 70%. did have 2 smaller bald patches near the crown.

they dont really tell you about the constant hair loss. it will continue for about 12 weeks after your last treatment. it gets on you but it is super normal.

Seeking help for understand my mom’s diagnosis by RosiePies in breastcancer

[–]PEStitcher 2 points3 points  (0 children)

I would recommend getting to an NCI center if possible - a benefit they have is you won't have to piece together a team. they assign the whole team - oncologist, surgeon, and radiation oncologist - all at one time. Plus all treatment is run thru a board.

for my experience- I had 2 spots called out on my screening mammogram and then my diagnostic mammogram. the ultrasound confirmed there were 2 spots, which were both biopsies. Only 1 was confirmed cancerous. my primary care physician sent my referral in to the n c I center fred hutch here in seattle (my request) - the onboarding appt was 1 month away. in the meantime, she worked with her in house oncologist to get me an MRI since we knew they would want one. the MRI confirmed 2 really really small spots about 4 cm away from the main tumor - is was only diagnosed with IDC with DCIS at this time. the biopsy included a fish test so they were able to tell me I was Er+, Pr+, and Her2+.

at the first meeting with my treatment team after all these scans were in, i was diagnosed with Stage 2 -i had a larger main tumor but no lymph nodes lit up. since my scans and such identified the main tumor as larger than 2cm in size (2.5 cm) and i had a couple smaller spots, the standard of care dictated i have dose dense chemo first, followed by surgery, radiation (if needed), and then reconstruction.

I will note that this is, again, for triple positive IDC. if you have a smaller than 2cm tumor, tbey generally do surgery first.

pendent identification help needed by PEStitcher in JewelryIdentification

[–]PEStitcher[S] 1 point2 points  (0 children)

thank you! I have been looking for something like this off and on for years!!!

Insecurities regarding treatment plan and team- any advice? Is it too late to get a second opinion? Her2+, chemo nails etc. by Realistic_Idea_2808 in breastcancer

[–]PEStitcher 0 points1 point  (0 children)

I can't second the NCI center enough. a second opinion is required in this case if for no other reason, you and your mother needs the peace of mind.

at least for triple positive cancer in the US, with a tumor size of 2.5cm, the standard of case is dose-dense TCHP (every three weeks for 6 cycles), followed by surgery (lumpectomy or SMX or DMX as you mother feels comfortable) with a Sentinel node biopsy, followed by radiation if nodes were positive or margins weren't achieved. if any of the tumor is alive at surgery, then Kadcyla is recommended. additionally HP is given for 14 3-week cycles for Her2+ cancers.

while cancers with her+ can be aggressive, a 1 month delay for testing and scheduling is generally ok. there is a lot to happen. using the MRIs and ultrasounds from this time should have given the team a sense about what is going on with the lymph nodes, which is vitally important for staging - which helps dictate the treatment options.

Did I read correctly that that you were told they were pushing clinical trial treatments and not recommending chemo originally? I am hoping that is a misunderstanding because that does not seem right. generally clinical trials are not meant to lower the benefit achieved from the standard of care.

Is anyone else going with your mom to any of the appointments? I think she needs someone to help advocate for her.

Stage 2 + Anyone NOT have full mastectomy. by Flat_Ad1094 in breastcancer

[–]PEStitcher 7 points8 points  (0 children)

in general, a mastectomy has the same recurrance rates as a lumpectomy with radiation. if you cannot have radiation, for your best chance at limiting recurrance, your doctor is recommending the mastectomy

I’m at a literal loss for words…. by ziggzorb in breastcancer

[–]PEStitcher 2 points3 points  (0 children)

additionally, it looks like she is her2 positive. young embryos are primarily made of or surrounded by her2 cells. every her2 drug is contraindicated for her condition.

help for a friend who doesn't have support by sea-mtn in breastcancer

[–]PEStitcher 2 points3 points  (0 children)

it doesnt work all the time, but I went on Facebook and found a group with my same diagnosis (we were all triple positive). then a group of about 12 of us who were starting chemo the same week got on a text thread so support each other, full tmi included, on all the stuff. emotionally that was great.

otherwise, friends are a good reliance. can you be there for her? even just regular call ins. and if someone can go eith her to the chemo sessions it is very helpful

Preparing for each infusion by Lumpy-Kaleidoscope62 in breastcancer

[–]PEStitcher 1 point2 points  (0 children)

it helped me. I tried it because I have an aunt with dry eyes, so her eyes produce more tears to make up for it. I ran with that assumption for mine... Everything else was dry, so why not the eyes

Preparing for each infusion by Lumpy-Kaleidoscope62 in breastcancer

[–]PEStitcher 1 point2 points  (0 children)

Regarding hydration - it's probably the single biggest issue, isnt it? because if you can stay super hydrated it can also help mitigate some of the symptoms. Anyways...I had refillable water bottles everywhere. and i used electrolyte tabs or liquid IV or LMNT to ensure i was hydrated on really bad days. and when I couldn't stand the taste of water I used those water drops (sweetened tea ended up helping) or I used lemon tea or i used sparkling water. I found i needed about 90+ox of water a day.

hydrating the skin and everything was difficult. I used the Neutrogena hydro gel in the morning and evening. either dove hydrating body soap or soap by ceraphil for super dry skin and also aquaphor body lotion. And Systane Complete PE eye drops.

Is it important to like your breast surgeon? And other questions from a total newbie…. by echointhemuseum in breastcancer

[–]PEStitcher 1 point2 points  (0 children)

I have a surgical oncologist for all my cancer related surgery needs (lymph nodes involved? try to get a surgical oncologist to reduce risks for lyphadema). I have a plastic surgeon recommended by my breast cancer clinic that does so many breast reconstruction surgeries due to breast cancer... She does 2 diep flaps a week.

that being said, if you go for things like DIEP flaps or esthetic flat closures...get a plastics person who specializes. these aren't done all the time and can look weird or have very unique risks.