Doctors & Staffers Need to Listen! - SHARE Metastatic ...

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Doctors & Staffers Need to Listen!

Survivornow profile image
32 Replies

Well, my Oncologist's Assistant just keeps on giving. I refuse pain meds (I have a torn rotator cuff in the same arm that I have lymphedema and chest cancer.) My system simply cant handle the side effects, that cause other extreme issues. So, I take BC powders, but only on a full stomach and I drink carrot juice and buttermilk before taking any meds. I have had stomach issues since childhood, so I'm diligent about caring for my stomach. I cant handle Ibuprofen, Bayer aspirin, etc. Even with a full stomach, they give me horrible stomach pain - always have. I can't explain why the BC's don't!

So, in my last appt that went bad, I explained all this again to the Assistant. We were talking about the horrible joint pain I am having, that has built up, from the Inhibitor. She told me to stop the BC's and she gave me a prescription for a med to help fight my RA inflammation. I reminded her that I can't handle Ibuprofen after she told me it's like a stronger version. And I reminded her that I have stomach issues. She did that dismissive "thing" with her hand and said, "It won't hurt your stomach". My husband picked up the prescription on his way home from work and the warning on side effects - "can cause stomach pain and bleeding ulcers, fatal heart attacks"! Right. Thank God it only cost $3 with insurance, but Geez! I won't be taking it! I'm on enough meds that can potentially harm me in other ways because I have to, because I plan on living a long time. But why add more to that?

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Survivornow
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32 Replies
nstonerocks profile image
nstonerocks

Can you sit down with this person and tell her as unemotionally as you can that you feel dismissed by her. When she doesn’t listen to what you’re saying and waves her hand in the air, you feel put down and the end result is nothing changes. Sounds like she is acting like she’s on an assembly line and your the next one coming down the belt. I get it having worked in health care where the numbers can be overwhelming. You have to fight to keep a holistic approach to patients. But that doesn’t mean you stop trying. Or if you really want to floor her, bring her a cup of coffee or tea and sympathize with her work load and then lead in to how her responses to you make you feel unheard and you’d like it to go better. If she can’t be “fixed,” is there a way to move on?

Survivornow profile image
Survivornow in reply to nstonerocks

She is my Oncologist 's Assistant. I see her more than him, which leads me to believe he definately feels like I'm not an urgent patient now - which is great. She is very knowledgeable, but obviously needs to take a break or brush up on her people skills. We will have a discussion next visit!

nstonerocks profile image
nstonerocks in reply to Survivornow

let us know how it goes.

Barbteeth profile image
Barbteeth

Unbelievable!!

You ought to take the side effects leaflet with you at your next appointment...highlight the warning about stomach bleeds and irritation and just ask her point blank why you were prescribed this medication when you told her you can’t take meds like these

I would!!..and I’m not one to say anything usually but this is so awful

Barb xx

Francesca10 profile image
Francesca10

Seems to be contagious. My onc and Pcp have not been hearing at all lately. Without writing a book, I saw an allergist- I don’t have rashes. I have hives. And he thinks it’s the faslodex. My onc ordered pet scan after so many discussions I don’t want it. Went deaf. I had therapy yesterday and she will speak with him. Right now I am tired of fighting to be heard.

I find it all ridiculous. My Pcp told me months ago when he saw the rash my pants were too tight.

I feel you. I am there. I am going to change doctors soon-def the Pcp and will see about the other one.

Frances

Kate407 profile image
Kate407 in reply to Francesca10

My PCP is also an Osteopathic Doctor, (DO). I searched until I found one who's Internal and trained in Geriatrics. I grilled her and asked if she'd be with me right up to the end. She spent at least an hour with me, left the office to see someone briefly. When she returned, she said, yes.

Now, whenever I need to see her, almost always I get in that day or early on the next day.

Blessings❤🤗🙏

Kate Q

Francesca10 profile image
Francesca10 in reply to Kate407

That’s a blessing. Really. I made an appt with a new Pcp. I wAnted to change for long time and did make appts and saw other drs. Timing is an issue but I will have to do what I need to do. I need someone who listens and doesn’t attribute some things I question “nurses are difficult”. I am going for the pet scan july5th against my own better judgement. Agh!!!!!!!

nstonerocks profile image
nstonerocks in reply to Francesca10

I rarely tell people I’m a nurse because them their guard goes up. I understand. Glad you advocated for yourself and got a new doc. Hope this one is more responsive. Good listening skills and empathy are so important when you’re dealing with peoples lives. All the more when their lives are on the line.

Francesca10 profile image
Francesca10 in reply to nstonerocks

♥️♥️Good to hear from you Nancy

nstonerocks profile image
nstonerocks in reply to Francesca10

Hi Frances. Sent you a message. 💕

Justme153 profile image
Justme153 in reply to Francesca10

Hi Francesca10 can I ask why you are opposed to the pet scan?

Francesca10 profile image
Francesca10 in reply to Justme153

I don’t like pet scans. It is a lot of radiation. Plus I have found if I have mri things show up that we’re not on the scan. Now I won’t do them- on cardiac 🎧meds - side effect of treatment. I can’t go 8-9 hours just on water with cardiac meds. It is hard enough to balance electrolytes and food with these meds.

By the way Happy New Year♥️

Justme153 profile image
Justme153 in reply to Francesca10

Happy New Year to you also!

LadyPastor profile image
LadyPastor in reply to nstonerocks

I try to let all my nurses know that I appreciate them and what they do. I know that most of their interaction with patients are when they don't feel good and are often grumpy.

Sister3nkc profile image
Sister3nkc in reply to nstonerocks

I hear you, i don't tell them i am a nurse either. It changes things....

LadyPastor profile image
LadyPastor in reply to Kate407

I have been greatly blessed by God with my medical staff. Everyone of them listen to me and won't even leave the room unless they are sure I have been fully heard and have no more questions. What's more, they take what I am saying, discuss it with me, helping me understand why it would or won't work. I strongly pray for that for everyone else here as well. It really makes a huge difference.

kearnan profile image
kearnan in reply to Francesca10

Falsodex can and is known to cause rashes or itchiness. When it happens to me, I take a over the counter benadryl.

Mindysooty profile image
Mindysooty

Thats utterly ridiculous. You asked the direct question and were categorically given the wrong advice. If you can, you should make another appointment. First and foremost you want a solution to your pain, secondly she needs to be made aware of the error she made in case she does it again to someone else.

I agree with Barb! We're not here to pacify medical personnel who are getting paid to treat and yes.... pacify Us, who are fighting for our lives!! You have a legitimate medical condition why you cannot take certain meds. That should be in your medical record and medical staff should be aware of that and above all, it should be a major consideration in your treatment. This nurse is so wrong on two fronts....her medical assessment of you and her dismissive attitude of your statements. Keep fighting for yourself my friend!❤️

Janeway19 profile image
Janeway19

Ugh. I grew up poor, so I rarely went to doctors. Getting a stage IV dx through me into what I would now describe as a nightmare jungle of insanity. One of many life problems I've been struggling with while dealing with my new health issues is a significant change in my social life. It's a long story I'll skip past here, but I brought this up with an RNP earlier this year and was gobsmacked by her reply. She actually suggested I single out one of my interests (hobby), find a group or club that does that too, and if I join them, I stand a good chance of making a new friend.

I'm 57 years old, and I was just prescribed advice on how to make a friend. Good lord. It's like we walk through the front door of the doctor's office and the reality of our lives evaporate and we become statistics in a chart, and if the statistics in your chart say your fine, then everything else is in your head. And in my case, I'm also an idiot who shouldn't be trying to have a conversation about stress when I obviously just need advice on how to make friends (eye roll).

Or in your case, your body is just a machine and what your body has experienced for decades doesn't actually matter, just take this pill.

Best of luck to you. Sharing this post so that we might eyeroll together.

nstonerocks profile image
nstonerocks in reply to Janeway19

Haha. Let’s all roll our eyes on the count of three...

Sister3nkc profile image
Sister3nkc in reply to nstonerocks

1...2...3...🙄

nstonerocks profile image
nstonerocks in reply to Sister3nkc

🙄

blessedmother profile image
blessedmother in reply to Janeway19

I love that you used "gobsmacked" It's a wonderful word. Sorry for your issues but know you made someone laugh tody!🤗

mariootsi profile image
mariootsi

That is awful. I have stomach issues with meds also and I understand.Like you I can't even take aspirin!

I think you have to sit with her and explain your situation again and if that doesn't work ask if you can see a different person.

I truly believe some people are just not cut out to deal with cancer patients.

Can you email or text your onc about this person?

We have enough to deal with without getting aggravted with someone who is not listening.

Maybe they can perscribe a pain patch. That way you can alleviate the stomach issues.

I use lidocaine pain patches for my arthritis with no side effects. Maybe that's a possibility. You can just get them at a pharmacy over the counter.

LadyPastor profile image
LadyPastor

I would consider getting another doctor if you can. We need and deserve to have a medical team who listens to us and make us a part of our own healthcare. We know our bodies better than they do and they need our input to do a good job by us. Medical staff come in two types. Those with a god complex and those who actually treat the patient.

I am lucky in that my team is compassionate and so are my doctors. I have two oncologists. One is in my home state and one that I have to travel to in another state, because health care for profit in America has changed from what's best for the patient to what's best to increase profits in many instances. My biggest frustration is that Big Pharma has one goal - to make huge profits off of the backs of a sick community. They do little or nothing about the often severe side effects.. They seem to want to get only to the point where they can make a claim, i.e., that their medication kills cancer cells and then they are done. I have called the makers of Ibrance and asked if they are working on this drug to improve the side-effects so that more women will be able to tolerate the drug better. I was told that they don't work on improving the drug and that they just move on to the next drug. In the meantime, one of their CEO's was paid $28M last year. I'm sorry but no one needs to make that much money. Perhaps that money would be better spent, on actually fine-tuning the side effects so more people could actually tolerate the drug. My doctors are very nice, but I am going to speak to them about this issue and the fact that they need to be more vocal with the drug companies and demanding more from them. Of course, in my country many or some of the doctors get "kick-backs," from Big Pharma. We also need to be more vocal and demand higher quality of drugs that we can actually tolerate long-term.

nstonerocks profile image
nstonerocks in reply to needabreakfromcancer

I wish I thought we could change Big Pharma and the influence they buy from our politicians. It should be illegal for government officials to take money, gifts, anything from anyone. Maybe then they would focus on truly serving us and protecting us. If this can’t be done, then the donations and gifts they receive should be on the front page of their websites as a disclaimer. In typeface large enough to read without a magnifying glass.

Survivornow profile image
Survivornow in reply to nstonerocks

Well, at my sister's urging, I tried the anti inflammatory med prescribed and my gut hurt so badly for 2 days that I finally ended up pucking all night Sat. night and still hurting today. Seriously! I have enough to deal with from my other meds to have this added on top! So disgusted with the lack of attention from my Oncologist's Assistant.

kearnan profile image
kearnan in reply to needabreakfromcancer

Doctors have enough on their plates. Why not write letters yourself to the pharmaceutical companies? Doctors attend seminars and are willing to try new drugs for stage iv because unlike years ago, now there are more options and they are all going to have side effects. I wonder, since my Verzenio costs about $11,000 a month, how much it really costs for these pharmaceutical companies to make. I guarantee you a lot less than we are paying. They are in it for the money but then again people want more research for stage iv and other diseases that are rare so where is that money supposed to come from?

nstonerocks profile image
nstonerocks

I think it’s time to fire her. Have you tried any of the meds like Prevacid or Zantac? Sorry you have this to deal with on top of everything else.

Godbeforme profile image
Godbeforme

Hate to sound like a broken record, but ginger root powder took away all my aches and pains as it is also an anti-inflammatory. I was taking 8 to 10 aspirin A DAY and when I started taking ginger root powder, 3 in the morning and 3 in the afternoon, I hardly EVER take aspirin anymore. When I started the ibrance I had to drop down to just 3 in the morning but it still works. I didn't take it for pain, I took it because I read that it kills cancer stem cells and then it ended up being a pain reliever for me, and hot flashes vanished, totally UNEXPECTED! The thing about ginger powder is, it's supposed to be good for your stomach too! <3 xo God bless you!

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