I'm so sorry you are feeling not supported emotionally and psychosocially with your cancer care. The care I have received throughout my 5+ years since diagnosis I am fortunate to say has been inclusive from the start to meet all my needs. I know I am probably fortunate and sadly perhaps not the norm. When I see my oncologist for appointments it is always for an hour, my husband has attended every appointment so is always included in all discussions.
I think being diagnosed during Covid as you were was a very difficult time and perhaps the delicate conversations often done during initial appointments were much less personal and things got missed. Again I feel fortunate that all through Covid I still saw my oncologist in person rather than Zoom or via telephone.
I think melancholy thoughts are ok.....especially after a long day of appointments etc. My cancer center also uses a patient portal pre-appointment questionnaire that must be filled in online and it addresses most of the things you mentioned above around needs. Of course along with that is a symptom sheet and how it is impacting your day to day life. When my appointments start the first thing my oncologist does is bring up the recent forms I have completed and discusses any areas of concern.
Sharing your thoughts with others like us in the same fight and that understand is good for your soul. This MBC business is no joke and the journey is hard for all of us. When we get good results we celebrate and move forward until the next bump that brings reality and the disease back foremost to our thoughts again and the cycle continues for as long as we do. If your team is not giving you what you need then be an advocate for yourself and ask for what you deserve. You are worth it! Take care.
Glad for your experience. An hour appointment with any doctor is unheard of, that would mean my Onc could see 8 pts a day and I know he has a lot more than that as well as inpatients. I wouldn't even have enough questions to ask for an hour
I remember back in the day when doctors used to look at you. Now they just look at the computer. Sometimes I wonder why I’m even there! I guess it’s up to us to bring up any issues we have. It would be nice if they took more time with us but it just doesn’t seem to be like that anymore.
I'm pleased to hear you're 4+ years down the line from diagnosis and I fully agree. There is room for improvement in looking after our emotional well being, not just the physical side.
I've not been asked how I'm feeling either although there is an abundance of leaflets on display in the Oncology department which patients help themselves to as required. I assume there is no time to deal with emotional well being in the clinic so they don't ask unless the patient brings something up or breaks down in tears.
In the UK the National Health Service is crumbling. There are long waiting lists for counselling. I can't see that changing.
Thank goodness we have access to this forum where we can share our dark times and get comfort from others in our position.
I too am on board with this topic. I have noticed that when I get my document of my visit, that I have to ask for, that everything that I have stated about pain, how I am coping, being dizzy or whatever, is never written down. So, I wonder if there is another place somewhere, where, it is actually in my file. Doc just asks about pain. I state the other stuff, and have written it down myself, prior to appts, so I have it recorded. My lungs are never checked, nor is my blood pressure or oxygen level tested, unless I ask.
Hving worked in hospitals for years, I cannot think of anywhere else it would be written down. I am very surprised they do not do vital signs every single visit.
We never get vital signs taken except in the ward before we start an infusion. Our weight is taken although during covid it wasn’t.
We have access to a breast care nurse and it’s her responsibility to ensure we have all the support we need. That includes social services, physiotherapists, mental health services etc. She answers phone calls, texts or emails 7 days a week so she’s always available for help.
Oncologists are focused on cancer treatment but everyday living needs are outside their remit although any ancillary medical issue they do help with, such as referrals.
Exactly. That is why I just might buy those things to keep track myself. I do check my pulse often if I am feeling off. Thank you for replying and letting me know that in reality, vitals should be taken at each visit. I wouldd think this would be an advantage for all doctors to do, especially with the meds we are all on that cause issues with our hearts too.
You are so right! The emotional and fear topics are usually more difficult than the physical I found myself my own psychologist. No one even mentioned this til my last appointment after 10 years of dealing with original dxand mbc dx. I have found social workers basically useless.
that is odd. My onc asks me those questions at every visit and is eager to refer me to mental health care givers. I am very blessed though. My onc is part of a hospital that has a mind-body medicine dept. that understands the importance of treating the integrated person, not just the illness.
I am fortunate that my onc and the cancer center I go to asks these questions at every monthly visit.
They also have a company called Thyme who call every couple of weeks to check in on the non-medical side of this disease.
I was diagnosed in Feb 2021, and it was more difficult then. If anyone is in western North Carolina and is looking for a cancer center, I’d be glad to share what info I have.
Completely agree with you! I think 2Hopeful put it best. It truly is a shame that some of us have that “take a ticket, take a seat” approach to our appointments and consults. Glad we have this forum so we know we’re not alone in our thinking. Prayers for you!
I understand your frustration and am sorry you have experienced this and do not feel supported. Maybe next time you go, you. could mention your concerns to the nurse and see what she says. You deserve to be treated well. I have been with my oncologist about 3 years. She is definitely not as warm and talkative as my prior oncologist, but she has very good credentials and has kept me stable. I do, however, love her nurses and spend way more time with them than the doctor. The nurses have always been the ones to check my heart, lungs, etc., tell me my test results and answer my questions. They are very kind and patient and supportive. I usually only see the doctor for maybe 10 minutes. She has never examined me. Many times I just say I don't need to see her as I feel the nurses have handled any concerns I have had. Plus sometimes I have to wait forever for the doctor to come in after the nurse is done. One time she actually forgot about me. I was at the office for over 2 hours! If I wanted extra services I always had to ask, I was never asked what I needed. They have given me good referrals though. Anyway, I am happy with how I am doing so I guess that is good for now. Sending you hugs and prayers.
My first oncologist asked me all that - she ended up leaving the medical profession. I like my new doc very much - he's very nice and very smart. The very first thing he says to me when coming in the room is, "How are you doing?" And he listens to my answer. Don't get me wrong - he doesn't really know who I am, I see him three or four times a year, but he's extremely busy and does still care. The nurses and my lab team also do every time I see them.
Well I have the same exact treatment at my onc office but I am there 8 years . My mother who lives with me has stage four metastatic, lung cancer and dementia Alzheimer’s. She is also a patient of my oncologist. I brought her to him. So being that they know that I have stage four metastatic breast cancer eight years I am now in remission since 2019. But on medication with horrible side effects nobody asks me how I am and how I’m coping. And I take my mother to her appointment two days before I go for my treatment once a month. And when I’m alone, nobody just pulls me on the side and says, how are you really. So I know exactly how you feel. My oncologist I don’t even think he knows if I’m married or have children. I don’t know if he does either. Eight years I go there once a month.
That sounds so tough, on top of everything you are dealing with to be the caregiver for your mom - cannot imagine. My father had alzheimers - it is a horrible disease. I hope you have support.
I have been wondering the same thing….while I believe I am getting excellent physical care my Onc doesn’t address any emotional aspects of this disease. Fortunaly I have done very well with my treatment so hasn’t been an issue so far but I will feel the need when there is progression. There is a questionnaire I have to fill out before my visit that goes to the nurse but nothing is discussed at my visit with the Onc. Fortunately I know that Duke has resources for counseling at the Cancer Center that patients can pursue but it is not part of the Onc visit. One of my mottos has always been “you don’t get if you don’t ask” so I think we all need to start asking.
Yep. I agree. And having been a hairdresser all my life I have always asked after people. Listened to them. I cared for my partner as he died of cancer 5 years ago. And now I’m on my own. I sometime feel so alone. Never lonely. But just like it would be lovely for someone at the hospital to ask!
I worked as a nurse for > 35 years. I did not work directly in Oncology but would see many cancer pts in the clinic I worked in. Though it was not relavant to the reason they were there, I always asked "how are you doing" "Have you started to regain strength after chemo" "How are you feeling about surgery" "Do you have support when you go home".
I am not meaning to complain about care, because I really do adore my Onc., I just think holistic care is lacking in all areas of medicine but particularly in Oncology and esp stage 4 cancer when you will be in treatment forever
Please ask your Onc for a referral to a palliative care dr. Palliative care does not mean you’re in the final stages of your disease. These specialists address any symptoms and pain issues you are dealing with from the moment you’re diagnosed with a terminal illness. I asked for a referral at the end of my first year with MBC when I couldn’t manage my pain with the usual OTC pain killers. I really like my PC dr. She is patient, attentive and has helped me with my pain issues particularly. She also referred me to a Physio and a Social worker. Btw, I’m in Canada.
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