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Frustrated today about follow up care, again. Tamoxifen Bone Scan
Scarletkate
19 Posts
So frustrated today. My six-month appointment with my oncologist was switched to a phone appointment (again) late last week. I understand the need for it to be by phone, but I had a sneaking suspicion that I’d end up having my appointment with her nurse again, not the oncologist. Nothing against nurses, but I’ve had issues with this one not understanding or misinterpreting what I was saying in the past. And sure enough, the call came through and it was her nurse. I explained to her about the horrible pain that I was having in my legs. I told her I have pain in my joints from the RA, but this pain was different, it was in the bones, not the joints. She then went on to say, so your problem is joint pain. I tell you my frustration level went up a few notches in a couple of seconds. I said no, I have joint pain, I have had joint pain for years, I am able to handle that. I cannot handle the bone pain that I have been having since going on Tamoxifen. She went to talk to the oncologist and when she came back she said okay, we’re going to take you off Tamoxifen for a few weeks to see if that is what is causing the pain (it takes 2 -3 months for Tamoxifen to get out of your system) and we’re going to send you for a bone scan….and yes, this is how she said it and this is how blunt she was….to see if the cancer has spread. What does one say after that? Thank you, I’ll wait to be notified of the appointment. And then I cried. About the uncertainty (again) and about the lack of feeling properly cared for. This is not the first time the "ball has been dropped" so to speak during my care. I am so thankful that these forums exist, not only to allow us to gather information but to vent as well. I guess I will get up tomorrow, brush myself off and start all over again. Take care all.

5 Replies
JustJan
449 Posts
Scarletkate‍ I am so sorry you had this experience. I cannot imagine how frustrating and upsetting this is for you. I would be contacting someone in charge and explain the situation to them so that they can correct behaviour and the nureses definite lack of telephone manners. I know that times are difficult with Covid and they are trying to keep people out of hospitals as much as possible but there comes a point when a one on one visit is required and the doctor needs to lay eyes on you and give you an exam. Can you call and request an in-person visit sooner than later? Unfortunately, I think the telephone just adds a level of removing the patient from the equation. If they can't see you, they forget there is a person on the other end of the phone and they treat it like a task. Even with Covid, there is no excuse for complacency or improper care.

Sending you a hug.



Runner Girl
1509 Posts
Scarletkate‍ ,

I'm sorry the nurse was so unkind in her choice of words. I have found that as well and shrug it off to the fact that the likely spend all day listening to complaints and probably just can't help themselves sometimes.

About 6 weeks into my stint on Tamoxifen I had random, moving leg pain in only my right leg. My oncologist send me for an ultrasound the next day to ensure I had no blood clot, I did not. I increased my magnesium supplements and the muscle pain was much diminished. About a year in the bone pain became a problem, particularly in my feet and legs. I tried it all to no avail, until I tried the previously mentioned acupuncture. When they switched me to Exemestane I had terrible gastrointestinal pain. The nurse I spoke to didn't really believe I had such pain, but she took my issues to my oncologist who asked that I stop taking the drug and see if it went away. It did, the next day. I called back and was advised to start it again to see if it would return, it did. So I did some reasearch and discovered that one ingredient in the pill was mannitol, which is a sugar alcohol known for causing gastrointestinal distress. When I had my chat with my oncologist I told him I stopped taking it and why and told him I wanted to try the Anastrozole instead. He agreed. With a lactase enzyme I am doing well on this new pill.

I suspect your bone pain will lessen quite quickly when you stop the Tamoxifen. If you are going to restart it, you might want to get yourself an acupuncture appointment and see if you will have the same, successful results.

I wish you well with the bone scan.

Runner Girl
supersu
90 Posts
Scarletkate
ugh....I am sitting here feeling like this emoji 🤯
I am so frustrated for YOU right now!

I went thru my entire experience during COVID---ugh. I chalked up all of my frustrating interactions to the fact that I came into the system literally on the first day of shut downs and me and my team were working thru COVID together. they didn't know how to practice thru a pandemic and I sure as heck didn't know how to have breast cancer...... why don't 'they' get it tho??? it has been over a year now, you'd think they would have fine tuned this stuff.

I honestly appreciated chat and info gathering appointments to be done virtually - saves time, saves energy etc etc
BUT when we, the patient, request an IN PERSON visit, I think we should be granted that visit as long as it is safe to do so.
and as far as complaining about the nurse......uhhhhhh...not sure how productive that all is - you don't want problems with her going forward, (says the queen of non-confrontation-haha). she was probably harried and busy and simply regurgitated what the doc said. she must care or she wouldn't be working there....but yikes! again, 'they' just don't get it!!!! news like this, delivered so bluntly is damaging to us!!!!

if you are able to advocate for yourself, there is always a patient liaison type person that you could speak with at every institution---could be a good place to vent to also

I also have RA, and my rheumy and that team are all super FANTASTIC. I would, (and did actually), request an appointment with them to differentiate symptoms that could have been RA, could have been CA! not sure if that is an option for you??

thanks for your vent, know that I hear you and I feel you

I will cross my fingers and toes that you get a quick bone scan with beautiful clear images
let us know what happens

cheers & hugs
su

#bonescan #covidCANCER #patientcare #patientrights
Scarletkate
19 Posts
JustJan‍ Thank you. As frustrating as it is for me, just the thought of putting my family through another "wait and see" is heartbreaking. I have considered asking to speak with the doctor directly. I don't think it is going to make a difference in this particular circumstance though. I believe in the future though I will insist on speaking with the doctor. I gather from the conversation that my next appointment is supposed to be an in-person appointment. However, now that Ontario is locking down again, who knows what will actually happen. The thought of going to the hospital for a test or to see the doctor right now is scary. There have been several outbreaks at the hospital attached to the cancer center. BC is such a terrible thing to deal with in the first place and dealing with it has only been made worse by this pandemic. Thank you again, Jan for your support.
Take care,
ACH2015
2007 Posts
Hi Scarletkate

There are times when some of our medical team are less than compassionate. The mot important thing here is that you got your message across, you got results for yourself and hopefully this stoppage of tamoxifen solves the bone pain problem. We can all at times feel we aren't heard or listened to or are being brushed off with no concern for the emotional side of dealing with cancer.

We know ourselves best, and we need to advocate for ourselves - like you did with that nurse.

Runner Girl‍ appears to have had a similar situation to yours, and it was resolved with a switch of medications.

Keep moving forward - and keep getting your message across.

Keep well

ACH2015
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