Breast cancer

You've got your plan in place, now.... Now you get to execute. (Don't I sound like a megacorp manager? Shudder.) Seriously, you've got this. I've had several friends and family members go through chemo - some with the port, some without... The port was largely preferred. And the chest was chosen because with lymph node removal in your armpits, they can't use the arm anymore. (At least that's what my brother's oncologist said.)

You got this. We are behind you. Feel free to whine about how crappy you feel... just know that is temporary and you'll be feeling better after all the chemo stuff.
 
I'm so happy that you have a team that you trust. Also, it's great that they are in as big a hurry as you are to get started. Blessings on you for the heart tests. We are with you!
 
braumeister said:
Incidentally, you'll definitely come to appreciate the port. It simplifies things a lot
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You want the port. Knock you out when they do the procedure to install it, And it's better than trying to keep an IV needle in your arm for chemo later. Might feel weird, like you're the bionic woman. Still better than the alternative.
 
I too know someone who had triple negative with lymph involvement. After treatment like your planned she is still in remission 10 years out. Re port location. With surgery planned I would think they will want to use the other side but you can ask. If seatbelt straps are an issue a small pillow strategically placed can help

Best of luck
 
Thinking so much about how you are doing, though you don't know me from Adam (or Eve). My SIL named her cancer "Earl". The Dixie Chicks had a song some years back called "Earl's Gotta Die". That was her mantra throughout her treatment. She is still around more than 15 years later. Maybe you can pick and "Earl" for yourself!
Many prayers for the journey ahead!
 
I recommend you do a little self research on ports. Just Google What are the risks of a chemo port? My only oncologist recommended not getting one as they require careful cleaning and can be a source for sepsis. My friend had one for his chemo and spent weeks in the hospital fighting a blood infection because he didn't keep his area clean enough.
But the alternative is an IV each treatment. Along with all the other needle pokes for various tests and such, it adds up. I actually logged every treatment and visit. From first suspicion to 3 months after my last chemo, over 100 needle jabs. A port would have aleved many of those, I always followed my oncologist advice.
 
I had a port for dialysis. Yes, you have to keep it clean. I'm not. sure of a chemo port, but mine could not get wet, so no shower. It was in my upper chest area so at least I could take the hand held shower nozzle and wash below my waist. I had no choice but I would take a port over being stuck any day. When they took blood, no problem, just take it from the port. Nice since I was having lab work (blood draws) frequently. I didn't find it hard to keep clean.
 
I was told on the 18th to stay right by my phone 24 hours/day waiting for multiple calls that should arrive any minute. These calls were to set up the installation of the port, schedule the heart tests (EKGs?), and schedule chemo. I have waited right by the phone as directed (except when I was in the shower for no more than 3 minutes and I didn't get any calls even then). So today, I gave up and called back to find out wtf. The girl who answered just could hardly believe me. I was tempted to tell her to try living MY life for a few days and see :2funny: (but I was "good", and apologized for being difficult).

So, she sent me a packet of forms (and I checked my email while she was on the phone to make sure it arrived). And, I have an appointment for Friday at 10 AM to meet the breast surgeon who will be installing the port next week at some (so far unspecified) time.

At least I'm making a little progress! At least I hope so. Meanwhile during this week of further waiting (and waiting, and waiting....) the tumor has started itching a lot and has become painful, and I can almost feel it grow. All I can say is thank heaven for Tylenol.

I'll update you at some point in the next few days. :) Hopefully all of this angst is silly and some sort of treatment will be started ASAP.
 
Hang in there. You will soon be on your way to beating this cancer and continue your relaxed life with Frank.
 
Dtail said:
Hang in there. You will soon be on your way to beating this cancer and continue your relaxed life with Frank.
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I hope you're right. I keep reading that this is the most aggressive and deadly of breast cancers, and how early detection is ever SO important, but I guess all that is a lie because they don't seem to give a hoot about moving on to treating it any time soon. OK, that last sentence was said with a complaining petulant tone of voice but I am pretty aggravated right now. :2funny:
 
The angst is definitely not silly. They don’t say the waiting is the hardest part for no reason. Good that you got on their butts to get things moving again. Being told to wait with no specific timeframe would drive me nuts. Keep that in mind as you move forward. Try to get specific dates, or at least deadlines (like, we’ll call you within three days . . .). It will help.

Wishing you all the best.
 
Jerry1 said:
The angst is definitely not silly. They don’t say the waiting is the hardest part for no reason. Good that you got on their butts to get things moving again. Being told to wait with no specific timeframe would drive me nuts. Keep that in mind as you move forward. Try to get specific dates, or at least deadlines (like, we’ll call you within three days . . .). It will help.

Wishing you all the best.
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Thanks, I'll try to get specific dates out of them. Usually they say they will call me very soon, which I guess means weeks/months later. I tried to get a date for the port installation today, to no avail. I also asked about scheduling the heart tests and she pretty much blew me off and then immediately changed the subject to something I needed to write down right away (the time of my appointment on Friday). I swear these girls are hired based on their ability to dodge questions.
 
W2R said:
Thanks, I'll try to get specific dates out of them. Usually they say they will call me very soon, which I guess means weeks/months later. I tried to get a date for the port installation today, to no avail. I also asked about scheduling the heart tests and she pretty much blew me off and then immediately changed the subject to something I needed to write down right away (the time of my appointment on Friday). I swear these girls are hired based on their ability to dodge questions.
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I'm sorry you're fighting with bureaucracy here. As others have mentioned, it was also my experience that this period (diagnosis, treatment plan, waiting for port surgery) was horrible. Each day felt like a week. Hang in there and treat / distract yourself as much as possible. This really was the hardest part for me.
 
Pushing them on these specific appointments, like you describe, is exactly what I think you should be doing. I always feel like with these offices, you're just another patient/number to them, but for you, it's your life! In this case, like you said, they told you this is an aggressive fast growing type, so it would seem time is of the essence. Keep being your own advocate - call them every day until they schedule everything you need. Don't worry about bothering them - I'm sure however these call make them "feel", it can't be as agonizing as you waiting and worrying at home with no answers. From the lack of response you describe above I would also probably be leaving a message for the doctor to call me and discuss these delays with them. I suspect the doctor sees more urgency around the next steps than the office staff does.
 
I'm so sorry for the ridiculous delays and sense of non-urgency on their part. It's incredibly frustrating and only adds to how scary all of this feels. I really feel for you and remember it all too well.

I became the MOST annoying patient ever, I swear. I am usually very nice but when I got the run-around, I became very, very assertive. I surprised myself! I knew some staff had to have thought, oh no, here she comes again! I didn't care at that point, lol.

It eventually works...squeaky wheel and all that. Nobody cares about your health as much as you do....sooooo...go right ahead and advocate for yourself as much as you have to!

Hang in there!
 
I too had some tough experiences with the hired help scheduling aspects of my battle with cancer. I recall I was supposed to get a bone marrow biopsy, followed 3 days later with a visit with the oncologist to review and discuss the results. I tried several times to get his staff to schedule, but kept getting a lame excuse; the girl who does the scheduling is not in right now, but don't worry, she'll get the message. I called every day for 2 weeks. Eventually I had the appointment with the oncologist and boy was he pissed he didn't have that biopsy. I explained the problem, showed him my phone log with names and times who I spoke with. I got the biopsy but the lesson was learned:
YOU ARE YOUR OWN BEST ADVOCATE
Just remember that no one cares about you like you do. It helps if you have a spouse who can run interference for you, but many of us are on our own when it comes to this. I have no idea how elderly people who haven't the wits to realize they are given the run-around and end up dead because of the poor clerical scheduling.

One thing I can highly recommend; when you go in for your first chemo, you'll be introduced to a cancer treatment advocate who will be assigned to you. You can call them any time, day or night, 24/7 and get someone who knows the ropes and will get things done. From that day forward, I would call to tell her of my latest upcoming appointment or that the doc said I was to get scheduled for this thing or that, and she made sure it went through and didn't get back burnered.
Now, part of the problem was the whole COVID pandemic, but I swear, lazy people used that as a lame excuse and I shouldn't have let them get away with it.

Stay on top of everything, document everything and get that advocate's contact info.
Cheers!
 
skipro33 said:
I too had some tough experiences with the hired help scheduling aspects of my battle with cancer. I recall I was supposed to get a bone marrow biopsy, followed 3 days later with a visit with the oncologist to review and discuss the results. I tried several times to get his staff to schedule, but kept getting a lame excuse; the girl who does the scheduling is not in right now, but don't worry, she'll get the message. I called every day for 2 weeks. Eventually I had the appointment with the oncologist and boy was he pissed he didn't have that biopsy. I explained the problem, showed him my phone log with names and times who I spoke with. I got the biopsy but the lesson was learned:
YOU ARE YOUR OWN BEST ADVOCATE
Just remember that no one cares about you like you do. It helps if you have a spouse who can run interference for you, but many of us are on our own when it comes to this. I have no idea how elderly people who haven't the wits to realize they are given the run-around and end up dead because of the poor clerical scheduling.

One thing I can highly recommend; when you go in for your first chemo, you'll be introduced to a cancer treatment advocate who will be assigned to you. You can call them any time, day or night, 24/7 and get someone who knows the ropes and will get things done. From that day forward, I would call to tell her of my latest upcoming appointment or that the doc said I was to get scheduled for this thing or that, and she made sure it went through and didn't get back burnered.
Now, part of the problem was the whole COVID pandemic, but I swear, lazy people used that as a lame excuse and I shouldn't have let them get away with it.

Stay on top of everything, document everything and get that advocate's contact info.
Cheers!
Click to expand...
Thanks for the tips and for understanding the problem! :)
 
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