A Total Rant

Anonymous · June 2014

A Total Rant

Anonymous · June 2014

If it wasn't almost July I would think this is a bad April fool's
joke.

I've had swollen glands since chemo. I've been on two rounds
of antibiotics and it's still swollen on my left side. Since radiation I've
developed a swollen node under my arm pit on the left side. It's also
accompanied by some swelling.

After my last round of antibiotics the PCP told me to
contact her if the swollen gland didn't go down. I sent an email. I was told to
contact my oncologist. At the same time, I also sent an email to my radiologist
to see if it could be a possible side effect to the radiation. He told me to
contact my surgeon. I sent an email to the surgeon, she told me to have the
oncologist look at it during my infusion appointment tomorrow. I contacted the
oncologist, he told me to follow-up with the surgeon. WTF??????? If this a test
of patience I'm failing miserably. I feel like a human football.

Thanks for letting me vent. If I was a drinker, it would
definitely be cocktail time.

odie16 · June 2014

SDB,

I am so sorry that you are getting bounced between specialists and agree that it is unacceptable. Please mention it and your frustration to your onc tomorrow. Hopefully your onc can address it or get the surgeon on board. Saying a small prayer for you and please keep us posted...

Hugs,

Karen

SallyS70 · June 2014

SDB, I am thinking of you ... so sorry your docs are not consulting each other without putting you in the middle.

ruthbru · July 2014

Good Grief! Tell your oncologist how you feel about this and don't be nice about it, give him hell! They are all supposed to be working FOR YOU!

* just for the record my radiologist told me to always see him first before ever seeing a surgeon if I had a concern.....because lots of goofy things can come up even long after rads....and a surgeons first thought is to cut you open!

*also don't e-mail them anymore....call and talk to a real person and demand an appointment; if that doesn't work, go to their office and don't leave until they have set up an appointment!

Anonymous · July 2014

Thank you for letting me vent. I was so irritated that day. This really is the only place where everyone understands the frustrations we go through.

I didn't even get to see my MO today. Just the infusion nurse. The surgeon did schedule me for an appointment on the 14th. I didn't really care which doctor saw me. I was just tired of being passed from one doctor to the other.

Thanks for the advice Ruth. I actually started with my RO, but he referred me back to the surgeon. My surgeon said that typically something like this would be handled by the MO. I forwarded his email to her, and she scheduled the appointment for me. I'm just not sure why it has to be so complicated.

Tomboy · July 2014

AAAAAAAAAARGH!!!!! thanks, SLO, and thanks for bumping your excellent rant!

Anonymous · July 2014

It was a good one, wasn't it?

Kudra · July 2014

Forwarding his e-mail to her was a brilliant move! Basically, you told them to duke it out and get back to you when they had a plan! Cool!

Anonymous · July 2014

Thanks Kudra! It worked so well I had both my surgeon and MO schedule an appointment. LOL

Went to the surgeon last week and I got the results of my ultrasound which was negative. Thank goodness. It still doesn't explain the lump I'm feeling and the loss of my range of motion in my shoulder- also the pain. I see my MO on Tuesday to address the swollen glands in my neck and will ask him about the lumps at that time. Maybe it's just normal after treatment to develop all these lumps???? I will also ask for a referral to the lymphedema specialist. I'm getting a bit of swelling, so I want to make sure it's not caused from that. I didn't have any nodes removed and my risk of developing lymphedema was supposed to be very low.

I had my Muga scan on Thursday. They had a difficult time getting into my vein the second time, so they had to use my infusion vein. I developed a huge bubble when they were injecting me. I sure hope they didn't mess up my one good vein!! I will find out on Tuesday when I get my infusion.

I've decided to make this my VENTING thread! I hate complaining on the other threads!! So, if anyone else needs to vent or complain, FEEL FREE!!! I should rename it the Whining thread!! or, totally TICKED OFF thread!!!

Anonymous · October 2014

Here is my new rant.

My mammogram is due this month. When speaking to my MO, I explained that I didn't want a mammogram because so far, out of the five breast lumps I've had in my lifetime, not one of them was caught through mammogram. I told him I didn't want to be exposed to the radiation for a test that hasn't worked on me (dense breasts). So, he ordered an ultrasound instead. The imaging department called and set up an appointment, and sent me a confirmation through the mail to confirm the test. I drove an hour to the facility. When I arrived in the parking lot, I received a call that they can't do that test without a mammogram first. Needless to say, I was very upset that they scheduled me knowing it couldn't be done, and they waited until I was already there to call me. My MO and BS were both on vacation at the time.

Once home I got several calls throughout the week explaining why the test can't be done. Now I've been referred to member services to try and get it approved. Do you all think I'm being unreasonable to decline the mammo? If it had caught just one lump, I think I may have felt differently. I get so tired of hearing the "standard of care" spiel, but now I'm starting to question my reasoning. Anything out of the box seems to be such an uphill battle.

Ariom · October 2014

Hi SDB, I would feel exactly the same way, if in your situation!

That just sounds like madness to me. I am so used to hearing about women who are trying to get a Mammogram and the insurance company won't authorize it and here you are, saying it isn't a beneficial test for you and they say you have to have it anyway! AAAAArghhhh I wish you all the best!

Bounce · October 2014

I am so glad to hear someone else is refusing to get a mammogram.

I have been having them for about 10 years and on 3 occassions I sufferred excrutiating pain during compression.

The technician had to release me and then re-compress.

The year before my cancer was discovered (only shows on US) I had terrible pain and the technician did not compress my breast properly after that and I got a much higher dose of radiation than is usual.

Since doing radiation my breast is very tender - if anyone even hugs me hard it hurts for days.

My MO said I could do an MRI instead of a mammogram and my surgeon agreed.

MRI results were fine - then surgeon said she wants me to have a mammogram anyway!

I told her I believed the risks outweighed the benefits. She suggested US and I agreed happily.

BUT: She wrote on my medical forms - "Refuses to do mammogram" and for some reason this has really upset me.

She didn't write any of my valid reasons for not doing it or give me a reason for doing it.

Now I am just branded uncooperative. I feel this is so unfair.

Especially as no-one takes any interest in the fact that my breast is still so tender - Not the RO, not the MO and not the surgeon.

My regular doctor does care about my well being but he doesn't have the answers!

I thought of writing my surgeon a letter explaining how I feel but honestly I think she will just think I am crazy.

Anonymous · October 2014

Thank you both. It's good to know I'm not being unreasonable.

Bounce, I swear your post could be mine. I get horrible pain with compression too. "Refuses to do mammogram" - WOW. I have to tell you about something similar. I asked about MRI at some point in my treatment and my BS (who I love by the way), said that because of my fear of needles, an MRI probably wouldn't be a good thing for me to have. She said anything that popped up would have to be investigated with a biopsy and MRI's can show many things that turn out to be nothing. That sounded reasonable to me, so I agreed, no MRI. Later on when reading through my paperwork, I read - patient refused MRI. I wonder if they just have to put that stuff in there to cover their butts???

I've got to say, after all this time, my breast still hurts like crazy too.

Edited for typos. I blame it on auto correct.

SpecialK · October 2014

Important to note that in medical-speak "refuses" just means that you don't want it, it is not a judgement about lack of cooperation. My daughter lost it when during her Virginia kindergarten physical they needed to take her blood pressure - the word "blood" was enough for her even though I explained it was just a cuff that would squeeze her arm, she wouldn't do it. They wrote "refused" in her chart too - she was 5 years old.

Anonymous · October 2014

That makes sense SpecialK.

I thought the language was pretty innaccurate in my case when the BS was the one that suggested I not have the MRI.

In the case of the mammorgram - yes, I did refuse!! Declined sounds so much better though. hahaha

Tomboy · November 2014

declined does sounds so much better, and it would be even better if they gave your brief explanation why. Here's one that my bs-bs said in my notes verbatim almost, including quotes " kathe discontinued seeing Dr. f, because she "didn't like her bedside manner".. STFU!! oops, wrong thread! What i had told the bs, is that i stopped going to that doc, because if i had done my lumpy there, she had told me when i asked, if i was going to do an advanced health directive, and that dr said no. that she did not accept them... because she was her own private entity company, and, if she opened it up, it would be her decision right then. No. women fought very hard in the seventies for it to be done as a seperate surgery. plus, we hadn't even discussed recon! plus, what if things went south with anaesthesia? would they keep me on life support if i was brain dead. I had told my new bs those were the reasons! actually, the other one had a much nicer bedside manner!

Anonymous · November 2014

Did I read that correctly?

Your BS didn't accept advanced directives??

A Total Rant

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