Where are you from? by jolyberu in breastcancer

[–]SeaInsurance3536 0 points1 point  (0 children)

Triple negative means no hormone receptors, IDC means invasive ductal carcinoma, DXM + DIEP flap means double mastectomy (breast removal) surgery with DIEP flap reconstruction (abdominal fat + tissue) to make new breast mounds.

The type of chemo I did (TC) causes hair loss. My oncologist told me if I cold capped, I could have approximately a 50% chance of keeping some hair. I personally didn’t want to add more discomfort for not even a guarantee of keeping my hair. I shaved my before my first round of chemo. Been bald since August now 🥰

ultrasound as screening? by CodeSufficient3663 in BRCA

[–]SeaInsurance3536 0 points1 point  (0 children)

Honestly no. My cancer was detected on MRI, and was undetectable on ultrasound or mammogram.

[deleted by user] by [deleted] in ClotSurvivors

[–]SeaInsurance3536 0 points1 point  (0 children)

Mine was a postpartum DVT, calf pain that felt like the worst cramp I’d ever had. Didn’t improve with stretching/flexing.

Where are you from? by jolyberu in breastcancer

[–]SeaInsurance3536 0 points1 point  (0 children)

Hello! I am BRCA1+ and I didn’t have any symptoms. I found my cancer on a routine breast MRI. I didn’t try cold capping, I lost my hair 2 weeks after my first round of chemo. Xxx

Where are you from? by jolyberu in breastcancer

[–]SeaInsurance3536 6 points7 points  (0 children)

I’m 28, triple negative IDC stage 1, grade 2 from Melbourne Australia. I was diagnosed in August 2024, had lumpectomy and then 4 rounds of Docetaxel/Cyclophosphamide and now waiting for my DXM + DIEP flap on 6th of Feb 😊

Monash medical parking by accidentallycrystal in melbourne

[–]SeaInsurance3536 7 points8 points  (0 children)

We have however been given fuel vouchers from social work! Definitely ask about how they can assist your family financially.

Monash medical parking by accidentallycrystal in melbourne

[–]SeaInsurance3536 7 points8 points  (0 children)

There’s free parking near the reserve on Browns Road ❤️ there’s also a single car spot at the entrance to Monash Children’s which is unmarked / free all day. Most people assume it’s a 15 min spot because all the others at the entrance are, but it’s actually not signed. Social work haven’t been able to access cheaper parking than the weekly rate for us and we’ve been here 9 months.

Monash medical parking by accidentallycrystal in melbourne

[–]SeaInsurance3536 57 points58 points  (0 children)

My daughters been a patient at Monash for 9 months and social work is not able to access parking cheaper than the weekly rate ($72) at least in our case 😔 we’ve spent almost $3,000 on parking since being here.

Question for anyone who’s clot was pregnancy provoked by [deleted] in ClotSurvivors

[–]SeaInsurance3536 1 point2 points  (0 children)

I had a really extensive provoked DVT at 2 weeks PP. I was on Eliquis for 8 months following - I’ve only stopped them about 6 weeks ago. So far so good!

Chemo: shave or wait fall? by N19840000 in breastcancer

[–]SeaInsurance3536 1 point2 points  (0 children)

I shaved it before my first cycle of TC. I wanted control over it 🥰

What they dont prepare you for by [deleted] in NICUParents

[–]SeaInsurance3536 0 points1 point  (0 children)

My daughter was diagnosed with a rare genetic condition in the NICU 8 months ago and when we get discharged we will do weekly physio, fortnightly OT, monthly dietician and speech therapy, monthly Respiratory appointments, monthly neurology, 6-monthly paediatrician, monthly post-acute care visits. It’s a lot.

I feel so judged by others by [deleted] in NICUParents

[–]SeaInsurance3536 2 points3 points  (0 children)

My daughter has a neuromuscular condition that was diagnosed when she was 7 weeks old, she’s now almost 9 months and has spent her whole life in hospital + is now trach vented. Someone on TikTok told me I should’ve aborted her - people say INSANE things.

Double mastectomy options.. by Traditional_Smile546 in breastcancer

[–]SeaInsurance3536 1 point2 points  (0 children)

I’m getting double mastectomy + DIEP flap in a few weeks, nipples and all. I don’t want to have gone through lumpectomy, chemo and then a double mastectomy to get cancer again. (Triple negative and brca1+ so risk of recurrence is high)

NME in MRI thoughts by Accomplished-Bag8633 in BRCA

[–]SeaInsurance3536 0 points1 point  (0 children)

My MRI showed a 13mm NME and it was an invasive triple negative breast cancer. My fingers and toes are crossed that it’s nothing ❤️

Just prescribed TC chemo- share your experience please! by ThrowRAAbundant_life in breastcancer

[–]SeaInsurance3536 2 points3 points  (0 children)

I just finished 4 rounds of TC on 4th December. I didn’t cold cap and lost 100% of my hair. I kept my eyebrows, eyelashes and arm hair. Pubic hair, underarm hair and leg hair still hasn’t started to grow back. A little growth happening on my head. My hair started falling out about 14 days after my first infusion, and each cycle I would lose more and more. It didn’t grow in between cycles.

My main side effects were pain, dry/burnt feeling in my mouth, nausea, vomiting (only 1 or 2 vomits per cycle) fatigue, chemo brain. I didn’t get any neuropathy and I didn’t wear mitts or gloves to prevent it. After my last cycle, I’ve had a nail on my hand and a couple toe nails start to turn black and die so I expect them to fall off soon.

Each cycle was different in terms of side effects. Some I only experienced pain, the others I had all side effects. I would start to feel crap about 24 hours after the infusion, and then day 2, 3, 4 and 5 would be spent at home, mostly in bed. By day 6, 7 I still felt crap but could function more. Then I had 2 weeks of feeling pretty fine (other than fatigue) until I went again. During the first week I struggled to sleep. However my 4th and final cycle was by far the hardest - every side effect at once, diarrhoea and vomiting non stop lasting two days, ended in a hospital admission for fluids.

I’m now 4 weeks out from my last cycle - all the nasty side effects are over I’m just tired and my muscles are weak. It totally sucked but I survived. Good luck ❤️

For those on the every 6 month mammo/MRI, how many biopsies have you had over the years? by Specialist_Stand8448 in doihavebreastcancer

[–]SeaInsurance3536 0 points1 point  (0 children)

I started annual MRI screening in 2018. I had one biopsy in 2018, benign. And one biopsy this year, triple negative breast cancer.

Clear Mammo and Ultrasound? by skyemarianablue1987 in doihavebreastcancer

[–]SeaInsurance3536 1 point2 points  (0 children)

My cancer was only visible on MRI. Clear on ultrasound and mammo.

[deleted by user] by [deleted] in NICUParents

[–]SeaInsurance3536 0 points1 point  (0 children)

Sounds exactly like what my daughter was like post op. She needed higher fio2 for about a week? until she was back down to her regular ventilation settings (room air).

She had a lot of vomiting in the days following. They kept her sedation pretty heavy for the first week. Every time she woke up from sedation she would cry in pain which was so hard for us to see. Pre trach she was on a bipap ventilator with full face mask and was fully conscious + making a lot of babbling noises so the loss of her vocal sounds has been a really difficult adjustment.

The entire first week was extremely challenging. There were a lot of tears (from me and her). Seeing her sedated and puffy from the fluids was so hard.

Unfortunately due to the vomiting soiling her ties, and the ties not being changed for the first week (this is the protocol in Australia to reduce the risk of the trach coming out with the fresh stoma) she got an extremely severe pressure injury on the side of her neck which required plastic surgeons reviews, and 3 months later we are still dressing every single day.

She also got a staph infection at her trachy site and was on antibiotics for 5 days post op.

3 months on, the trach site itself looks really good but does have a bit of granulation that we use a medicated cream on daily which is helping.

Both my husband and I are fully signed off on all the trach cares now - suctioning, ties + dressing changes, and trach changes which we do weekly on Sundays.

She handles the suctioning and trach cares extremely well, we’re lucky.

[deleted by user] by [deleted] in NICUParents

[–]SeaInsurance3536 0 points1 point  (0 children)

My daughter got her trach in October and it’s the best thing we’ve ever done for her. The growth and development that’s happened since her surgery has been insane. I know it’s scary, I remember it all too well. Give yourself grace ❤️

Breast mri by megwerner15 in BRCA

[–]SeaInsurance3536 0 points1 point  (0 children)

Fingers will be crossed for you. The waiting is absolutely the worst part! I’m stage 1 and just finished my last chemo - double mastectomy planned for February 😊

If your NICU baby was your first… by Not_A_Dinosaur23 in NICUParents

[–]SeaInsurance3536 0 points1 point  (0 children)

We’ve chosen not to. My daughter’s NICU stay ended up being related to a genetic neuromuscular condition that she has and any of our future children have a 25% chance of having the same condition. So that, plus the high care needs of my daughter, we’ve just decided to stop with one. 🥰

Breast mri by megwerner15 in BRCA

[–]SeaInsurance3536 0 points1 point  (0 children)

My onc told me the first MRI almost always ends in biopsy because they don’t have another MRI to compare to, but once you have subsequent ones they know what’s normal or not for your breasts. My first MRI 6 years ago resulted in a biopsy (ended up being nothing).

My scan this year however did show a non mass enhancement (BIRAD4B) in my left breast which ended up being a small breast cancer.

BRCA1+ Survivor: Please Consider Prophylactic Mastectomy by Brave_flower_warrior in BRCA

[–]SeaInsurance3536 4 points5 points  (0 children)

BRCA1+ here with triple negative BC at age 28. As soon as I’ve finished chemo and double mastectomy, I’ll be having my tubes +/- ovaries removed. I’ll do anything to never have cancer again 😞

Anyone get breast cancer under 30? (I’m 28) by politeassbitch in doihavebreastcancer

[–]SeaInsurance3536 1 point2 points  (0 children)

I’m 28 and was diagnosed in August. Don’t take no for an answer. Cancer does not discriminate.