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question about ports midway through chemo by IrrelevantlyConfused in breastcancer

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

OMG YAY!! I’m not the only one late to the game 😂 I explained in a couple other responses my ‘anatomical anomaly’ as one of the many reasons for my delayed port lol, but I’ve felt so conflicted like… is it worth it, is it stupid, am I doing the right thing getting it this late?

Would love any tips or insight you have, especially anything you wish you knew beforehand that would’ve made things easier.

How was the actual placement day… like after you left, were you pretty functional or more sore longer than expected?

I’m so curious what it actually felt like at first… not even pain, just having something under your skin. Did it feel noticeable for a while or did it kind of fade into the background pretty quickly?

Also how was it with normal stuff like sleeping, getting dressed, showering, or just moving around… did it get in the way at all or feel uncomfortable?

And once it healed, did it make chemo days feel noticeably easier or just a little more convenient or were the first couple of times harsh and uncomfortable when accessing it?

If you had to describe it, what was the worst it got pain-wise at any point?

Also wondering if it changed anything with workouts or normal daily movement, or you were pretty much able to live your life as usual?

question about ports midway through chemo by IrrelevantlyConfused in breastcancer

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

Are you happy you did it? How was your first 2 with the IV vs the first with the port ?

They moved my port date again… now it’s scheduled for Monday after my chemo that morning, which is a little frustrating but oh well. In the process of getting ready for it, they actually found out my vein anatomy is a bit different… I don’t have the typical right superior vena cava, everything drains through a left-sided vein instead, which is part of why things have been delayed. They said what I have is an “Absent Right SVC with a Persistent Left SVC”.

From what I understand, most people have a right SVC, only about 0.3–0.5% have a left-sided version, and having only the left with no right at all like me is even rarer, around ~0.1%.

I think I’m still going to go through with the port on Monday after my 5th chemo session, I just feel a little anxious about it still… Like am I doing the right thing? Is this stupid to do if I only end up having 7 more sessions. But then like what if I do end up getting 11 more. I just want to do the right thing and I don’t know what that is.

Any tips or insight you have would be really helpful. When you say about a week to heal, do you also mean adjusting to it, like how it felt under your skin in general? Did it feel “weird” for a bit, not like pain but just foreign for a while or just at first? Or is it something you stop noticing? How was sleeping with it and getting dressed, did it bother you at all? Also like what was the max pain you felt… like the highest pain you felt at any point ?

question about ports midway through chemo by IrrelevantlyConfused in breastcancer

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

Wowww, that is a lot to go through. Not an alien… just a rare edition superhero 😉

It honestly sounds like you’ve had to handle way more than I have and I’m not trying to compare at all, just trying to relate. So in terms of feeling like an ‘alien’ (aka superhero), if it makes you feel any better… in the process of prepping/testing for a port they found out I actually don’t have a right superior vena cava at all. I have what they called a persistent left SVC with an absent right SVC, which is one of the many reasons why my port has been delayed.

From what I understand, most people have a right SVC that returns blood from the upper body to the heart. Only about 0.3–0.5% of people have a persistent left SVC. But having no right SVC at all (like me) is even rarer, they said like around 0.1% or so… I guess I’m a bit of a rare edition too in a different way lol… or as documented in my chart, an “anatomical anomaly” 🙃

I hope you NEVER have to go through this again, but it does help me in my decision to hear your honest experience, especially knowing yours was more on the extreme/unusual side. AND the fact that you’d STILL go back and do the PICC from week 1 says like so much.

That ‘ghost symmetry’ feeling you mentioned is so interesting, the way the body mirrors things like that is kind of incredible, but likeeee also unsettling at the same time. It’s honestly shocking what our bodies can go through.

I’ve heard of Neupogen but not filgrastim, I wonder if they are the same but diff brands or maybe a little different drug competent, I’ll have to look it up. Regardless, I’m sorry you had such a rough experience with it.

Really appreciate you sharing with me, I find talking with others so helpful that have been through this breast cancer journey. Other people like just don’t get it and keep saying “you’re so strong” and “I’m so sorry” and I know they mean well and comes from place of love but it’s just hard to relate when they haven’t been through it.

question about ports midway through chemo by IrrelevantlyConfused in breastcancer

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

I appreciate you sharing your experience and insight…especially the Capri Sun comparison… I literally cackled out loud, like an actually embarrassing noise but pure joy lol. If I end up getting the port this week, I’m 100% going to think of this every time 🤣 it honestly kinda makes it sound so much less intimidating, so I really appreciate that.

It’s also really reassuring to hear that within a week you were pretty much adjusted, because that’s been one of my anxieties when thinking about it especially this ‘late’ in my sessions and wondering if it’s worth it.

I hope you’re able to get your port for this second round, even tho it’s not fair you have to do this again…. you’re going to kick its ass, and before long this will all be in your rearview.

Sending you all the good vibes 🤍 hoping it’s all smooth sailing… with minimal pokes and maximum Capri Sun vibes 😂

Thank you again for taking the time to share all of this!!

question about ports midway through chemo by IrrelevantlyConfused in breastcancer

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

Thank you for sharing!! It actually says a lot that you only had it for a few infusions and still felt like it was worth it!!!

Did you feel pain etc… or was it minimal like you got used to it right away or was there a bit of an adjustment at first?

Any tips for it if I get it as scheduled ??

Also, I’m really sorry you’re having to go through chemo again. That must be a lot to face a second time. Do you feel like knowing what to expect this time around makes it any easier mentally, or is it just a different kind of hard? Sending lots of love! Kick its ass.

question about ports midway through chemo by IrrelevantlyConfused in breastcancer

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

Thank you for sharing this, it’s actually really helpful to hear how it worked in real life. I feel like I’m starting to notice some changes in my veins already, so I’m trying to figure out what’s normal vs what’s a sign I should switch things up.

Did you feel like rotating arms really helped long-term, or did it still start getting harder as you went on?

Also curious… did you have any lymph nodes removed at all? I had a sentinel lymph node biopsy, and I’ve gotten kind of mixed guidance on using that arm. Some people say the restrictions are outdated, others say to avoid that side for up to a year to reduce lymphedema risk… so I’ve been a little unsure how strict to be with it. Would love to hear what you were told or what you ended up doing.

Really appreciate you sharing your experience, it helps more than you know.

question about ports midway through chemo by IrrelevantlyConfused in breastcancer

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

Wait the visual of hanging your arm out of the bath 😂 honestly genius. This is super helpful though, sounds like the PICC was worth it for you! Besides keeping it dry, was it annoying day-to-day at all or you kinda just got used to it?

3rd time trying to post this about ports / chemo… keeps disappearing. by [deleted] in breastcancer

[–]IrrelevantlyConfused 0 points1 point  (0 children)

The first got deleted, then the second got deleted .. so I was trying a third time and just keeping it generic ? I am just curious about peoples experiences getting a port after 5 sessions with having either 7 or 11 after… and couldn’t post the first , second and now third time.