I need some advice regarding my oncology nurse. We didn’t get off to the best start when she rang me to tell me my cancer had spread after being all clear for a year and that they had discovered a bone met. I was in shock, on my own at home and shakily asked what the next step was. and She matter of factly told me that we would look to see if we could find a clinical trial. To me back then I took that as there was very little hope and I was going to die. After a horrendous few days with the family we were told by the oncologist and private specialists we were years away from that and that there was a lot of treatment options ahead. Then she told me off for asking for details about some nodules in my lungs because they had gone. They were not gone but still there the same as the first scan unchanged. Now in February she told me I didn’t need blood tests before my hospital treatment of Denusomab because of COVID. Arriving for treatment I was told they wouldn’t give it to me without and I was treated as if I was being difficult for turning up without. After leaving several messages in the past few weeks and again yesterday morning asking if my next scans have been arranged she left a voicemail yesterday afternoon saying not to worry it was all in hand. I sent a message today asking when they had been arranged and which scans were requested. Surprise surprise, they were requested yesterday afternoon obviously prompted by my morning phone message. So as you can probably tell, I positively dislike this woman and dread dealing with her finding her incompetent and standoffish, do I raise this with my oncologist? Is it worth rocking the boat? Do I ask for another one? I think a lot of people there are so scared and grateful for any little tlc when they see her (I know I was) that it has gone to her head but it’s making me really angry. For myself and everyone else who might be too unwell to fight for themselves. Phew 😅 rant over but I would really like your take on this. X
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Scandia68
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I had to complain about a nurse last year...she injected my denosumab into a muscle instead of under the skin and I had a lot of bruising...I didn’t want to say anything but then I thought she may be doing this to other ladies...maybe she’s not had training or it was a one off
I didn’t want to rock the boat but glad I did...the next time I went for an injection everyone was a bit aloof but they’ve all forgotten now...obviously they were given a revision on injection technique...we have to trust them to look after us...that wrongly injected drug wouldn’t have worked so I missed out on a month
Going back to this nurse you see...is she the only one?... is there a ‘head nurse’ you could have a quiet word with? And request to be dealt with by someone more sympathetic
For goodness sake we deserve to be treated in a kind and respectful way...she’s not doing her job correctly and needs to be told...demand what you’re entitled to...after all we are the patients who are paying her wages indirectly...if we didn’t have cancer she’d be out of a job
I’m ranting a bit but I was a health professional for over 40 years and treated my patients with kindness and respect...it’s not difficult
Thank you so much for your input Barb I really appreciate it. She is the specialist oncology nurse to my oncologist and supposed to be my first go to. I didn’t ask her anything for about a year after the horrible first telephone conversation which stayed with me for a very long time. I don’t know if my oncologist would have more than one specialist nurse. I suppose I might be able to use someone else’s since we clearly don’t gel. I’ve had denusomab several times into a muscle so thank you so much for highlighting that. Now I know I’ll be aware. We learn something new every day x
Hello. I would definitely ask for another nurse if you don’t feel comfortable with that one. When I was first diagnosed metastatic I was assigned an oncologist that I did not feel comfortable with. I asked to be changed and it has been so much better. My daughter is the breast cancer nurse navigator at a different hospital but I’ve had the benefit of her guidance and knowledge as well. Lucky me! Not sure if you have a navigator where you are treated but they are the link between you and the doctor and can answer your questions and assist with any concerns you have. Best of luck with your journey!
I’m so sorry you’ve had such a time dealing with the nurse. I’ve always gotten my scan results straight from my doctor in person. I’ve never missed an appointment even during this covid stuff. He is so comforting to me and seems so caring. I wouldn’t want to hear good news and especially bad news from anyone else. I feel like he celebrates with me when it’s good and is just as disappointed when it’s not so good.
I would definitely request something different. There are pleasant compassionate nurses out there.
Your nurse's behavior is appalling. I don't understand why the oncologist is not giving you this information. It seems inappropriate for anyone else to give you news that isn't happy news. I would have a talk with your oncologist. Let her know that the nurse lacks empathy and that you want the doctor to call you. Also, let her know she has put your shot in the muscle and that you aren't comfortable with her. Blessings Hannah
It is so f#}%^# disgusting! I'm so sorry you have to put up with this.
I kind of understand uncaring breast cancer nurses. Mine often forgets to get back to me. I rang my nurse 4 times last week to find out when to get my bloods down and when there would be a bloods request slip left at pathology. I was never rung back and was in tears at the final hour.... When I rang yet again after not hearing from them and they said come on now.
But I agree. She should not be the one giving you the news and telling you what to do especially if she is this bad at her job.
It's just sooooo not okay. Not supportive. And I can't believe they treat us like this.
You definitely need to talk to your oncologist. He is relying on her to be his representative and she is doing a horribly shitty job. Number 1, your oncologist should be giving you scan results, not her. Number 2, we should not be told off for asking any question. It is our body and we have the absolute right to know anything we need or want to know. And three, she should be on top of things and not telling you total lies, re about your scans and your blood tests. I would go into your oncologist with a written list of when and what she has done, tell him you no longer want to put your life in her hands and ask him what he plans to do about it. If he hems and haws, tell him you want a definitive answer by your next appointment.
I complained about a treatment nurse who was giving me my shots in a different spot than most nurses. Her shots gave me terrible reactions at the site. My doc said thanks, she’s been a problem before, we will get on it. No problem now!
I’m sorry you are having this problem. I should have started with that but it made me so mad I just started writing. No one should have to put up with someone like that! Let us know what happens! Hugs and a pinch of bravery to help you navigate this situation! Elaine
Hi Anne,
I get that everyone has an "off" day from time to time. Maybe they have just had to give bad news to a patient, or they have had a long day at work. But the way this oncology nurse has behaved is unacceptable. She has lied, given you the run around and made you feel uncomfortable on a number of occasions. I really feel that you should speak up. As Elaine mentioned, I would make a list of specific things that she has done, and present that to your oncologist. That way it doesn't look like you are just picking on her, but have solid evidence of what is going on.
As for being "difficult" and asking questions, you are simply invested in your health. You have every right to ask about what's going on in your body. My oncologist expects to spend time answering my questions at each consultation as I always take a notebook with me. She has never made me feel that I cannot talk to her about any issues I am having. I am sure that if this oncology nurse was the one with metastatic breast cancer she would have a completely different perspective. My favourite nurse at my Macmillan centre has metastatic breast cancer and she is the most lovely, compassionate lady. She normally administers my zometa infusions, but she was not there last time and I was disappointed.
I think it would be for the best to mention what has been going on with your oncologist. It is not fair for you to have to deal with her incompetence, lies and general manner towards you. You deserve the very best care and to be respected. Compassion goes a long way for us all. After all, we deserve it. We have to live with this dreadful disease. Why should our lives be made any harder than they already are?
Just been reading your history and it looks like we have very similar cancers and on the same meds. I too have had to Ned scan readings. I have another scan in a few weeks time. My oncologist has dropped me down to 75 Palbociclib as my white blood cells are struggling to two bounce back. Do you have this problem?
I'm very interested to find out about the diet that you seem to be following have you got the details? I am insulin resistant but not on metformin (although my fertility specialist 18 years ago put me on metformin in order to conceive my three children).
Hi All I am doing is low GI diet very few carbs and avoiding fat. It seems to work for me, I check my blood sugar levels throughout the day
I am so sorry you are experiencing this . I know it can be extremely frustrating. When I was first diagnosed 17 years ago with the initial B.C. I felt taken care of , guided / counselled.
Fast forward to metastatic diagnosis 5 years ago . It has been a bit of a gong show , different nurses , oncologist , medical doctors . I have finally started paddling my own canoe and don’t rely on the clinic to follow through on anything . It can take up to 6-7 calls just to get a prescription sent to a specialty drug store . This was just this week . Every month there are mix ups on something .
For cancer clinic appointments I would take the day off work ( was self employed then ) drive an 1 & 1/2 hrs to my appointment wait for2-3 hours and then see a medical dr that I didn’t even know for 10 minutes and then they would tell me I wouldn’t be seeming the oncologist that day .
Personally I love the telephone appointments, I have my list of question which the oncologist answers and I go to my local medical centre for my bloodwork and injections as scheduled by me.
Other than the mess the pandemic has caused I did notice that things had gotten a bit better since last fall with appointment waits.
But I have been lucky that they have always been kind .
Hang in there , you are not alone . Keep paddling that canoe .
You have to advocate for you . You have every right to complain .
Please ask for someone else. In fact, if it were me, I would switch oncologists. A larger cancer center is the best bet for the best care, in my opinion. My doctors are very responsive and the NP working with them always answers my questions promptly and with the utmost courtesy. I am being seen at the Univ of Michigan.
Lol! Sounds like the week I’ve had...finally scheduled TH morning my scans for M...and only after 3 of my phone calls...anyways u don’t blood work for Denusomab/XGeva...it’s predecessor Zometa u do because it bothers your kidneys so they have to take the Creatinine first. I’ve had both and often have to correct them.
Personally, I like to get "big news" over the phone ahead of my next doctor's appt so I have time to digest the info, thinking it thru and getting my list of questions ready! But that is me and we are all different in so many ways! Also, I've never been assigned one specific nurse, although my first onc had a truly wonderful nurse who worked closely with her. Now that old experienced wise onc has retired (boo hoo!!! a huge loss) and the onc I see now is much younger and while very pleasant doesn't spend anywhere near the time with me as teh first one did. But I would be upset, too, if appts for tests weren't made and communicated to me promptly. And your experience is quite different than mine has been regarding returned phone calls and getting thru to my onc. I would definitely ask the onc about that and let her/him know how poorly the system is working for you. Is your onc in a private practice or part of a cancer center? I live in a rural area and have been driving over 100 miles round trip for onc related appts, tests etc but the local hospital now has a "cancer clinic" at least three times a week with oncs from the cancer center where I have been treated all along, so it is alot more convenient for me. If you are seen in a cancer center, it may be alot easier to change nurses or even oncs than if it is a smaller private practice. Personally, if I were in your shoes, I think I might consider going someplace else for treatment but probably would talk with my onc, first. Also, most medical practices have a person called the practice manager who is a good person to talk with if their system isn't working well for you. Good luck and please let us know how this all goes for you.
My advice would be to ask for a different nurse navigator/oncology nurse. She is too important to your well being, both physical and mental, to have to second guess everything she tells you.
And I would write a polite but detailed letter to human resources with both praise for the doctors, etc who worked with you and the details about the nurse. If we tell the good first, they are more willing to hear the bad.
Best wishes. My nurse navigator and I got off to a rocky start but became close friends after.
Ask for someone new. What you're getting is dangerous. I would speak to your onc. Can you get a new one? I see a great onc and his PA is amazing. I see the onc every time. But we don't mind on the odd occasion if we get the PA. Please, if you can, get out of there.
I am so sorry that you are going through this with of all people an Oncology Nurse.
I am on my fourth breast cancer diagnosis since 1974. I have always believed (and I still do) that Oncology Nurses are God's angels here to give patients support, kindness and a special brand of caring. And patience! And problem-solving for situations big and small. I have that now with a Nurse Heidi and I wish this for you. Please rock the boat with your Oncologist! With everything else going on you don't need the additional worry . Maybe this Nurse needs a different specialty?
I would report all this to your onc or supervisor. There are just some people who shouldn't work with cancer patients. She doesn't sound like the right person for you or anyone!
So sorry you have to deal with this unacceptable behavior! I agree with what everyone else has already said. Praying you get it resolved quickly for your health & peace of mind. ❤️🙏🙏
It is your life and your treatment and if for any reason you don’t feel satisfied then find another doctor. It doesn’t seem right that she made it seem worse than what it was. I personally think that if you ask questions or rock the boat then they don’t like it. I have been told my cancer is stable and not spread but there’s a nodule in my lungs that I saw and they have never said anything to me. The first pet scan it wasn’t there. I got pneumonia sometime after the first scan so I wonder. It’s your right to ask questions and if you don’t feel right then I would go to another dr. Hang in there🙏❤️
I dont have much to do with my onc nurse but she is nice, don't worry about rocking the boat, when I was in hospital and was reading my drugs chart and saw that they had signed that they had given me high calorie shakes but I hadn't had any and supposed to have them, so showed the matron on the ward she apologised and said I will get them from now on, I said thanks but don't understand how different nurses had signed it when they hadn't given it to me, I dont like complaining they have a hard job, but we have to look after our health.
Hi— Scandia68. Sounds to me like you have given the nurse multiple chances to interact in a positive way. If I were in this situation I would talk to your Oncologist and request a different nurse. We have soooo much weighing on our interactions with our care team. Not a time to be dreading talking to anyone! Not YOUR fault!!! Good luck and stay strong for you.
Yes, you should ask for another nurse and I would tell your oncologist the reasons. I would not want a nurse to call me with lab or scan results. I feel that is up to your oncologist. I do not have a specific oncology nurse where I go. If I have any questions, I call my oncologist and she returns my call within an hour or so. I have Faslodex shots monthly by different nurses each month. They always ask if I had any problems with the shots the previous month. I will tell them what side effects I had, if any, and I always remind them to take the Faslodex out of the frig when they are doing my vitals. I had a male nurse at my last appointment and I asked him if he had ever given these shots. Don't be afraid to speak up.
Thank you so much for all of your replies. You have convinced me to take action so watch this space 😁
Can you ask for a different nurse or is she attached to your oncologist as mine is? I would have a serious discussion with you oncologist about this. You deserve to be treated with respect and compassion.
I would not tolerate that treatment from her. You are not well, and should be respected, regardless. The care team at Stanford South Bay Cancer Center is AMAZING. I like my medical oncologist, breast surgeon and their teams, VERY MUCH.
I say, “ask for someone else!” Good luck, and GET WELL!
I've been thru a lot if this happened to me now l would get a new oncologist if they didn't change the nurse. You and all the other patients shouldn't have to put up with this.
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