This may seem like a pretty obvious question but what does everyone discuss with their oncologist at the monthly meetings? On assumption side effects remain the same, you feel in good health and there are no scans to update on I’m often at a loss at to what to discuss. I often find them pretty awkward to be honest and that I’m eating into time that he would prefer to spend on clinical trials! And given how expensive they are (for the insurers at this stage!) I feel I would like to make better use of them.
What to discuss with your oncologist? - SHARE Metastatic ...
What to discuss with your oncologist?
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JKMS
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I haven’t met mine yet. Diagnosed Nov 2020 and she rings 3 monthly after scans to discuss on telephone. Now it’s 6 months next one Feb 22 as I’m doing ok. Talked about Christmas and holidays mostly at the last call. She seems really nice and I’m hoping she will be there when I really need her a bit more in the future. She always asks how I’m doing and if there is anything I need etc but I find I talk more to the nurses every month who do my injections at the outreach clinic and they offer so much good advice too.
I only get a call from oncologist when I’ve had a scan , normally a few days after with the results.
That’s really interesting and I wonder why I have to see mine every month. I did ask if it was necessary and he said yes 🤔 We don’t really see eye to eye either so I would have thought he would prefer not to see me ha ha. I am very glad to hear you are doing so well and in that context it makes perfect sense not to have to see them so often!
That seems odd to me that you haven't met your oncologist although when I went from every three to 4 weeks then 6-8weeks it encouraged me a bit because things seem to get better. I also get bloodwork once a month to ensure things are stable so that also help. I would suggest a meet and review your results on a regular if you can. You don't want them to miss something important with the gaps. I'm glad your doing well. Best of luck
Hi. I was diagnosed Sept. 2020. We meet every three months face to face. I'm a relational person, so I can't imagine just doing zooms or getting info through nurses etc. We talk about everything during those 3 month visits. She asks about me and then I ask about her family. The first sessions with her was mainly explaining to me about my specific cancer and medications. Her first question to me is always about how I am feeling and side effects. She always goes over my scans and all reports and the report from brain/radiology oncologist. That usually leads to her answering questions I might have. But then I always ask her one "big" question each time. For example right now I am overwhelmed trying to figure out my nutrition/diet and supplements. So, this month I asked her about the sugar/cancer relationship and she gave me loads of info to think about, and referred me to a nutritionist who just called me this morning. Another visit we discussed marijuana for sleep help. Another appointment we discussed the idea of second opinions. I asked her if she will let me know when SHE feels another opinion is needed and she reassured me that she will and who she works with for additional input for her patients. My next appointment I want to ask her about the research she does. She takes Mondays off for research and I'm curious what she is researching. Bottom line, I look forward to meeting with her as she is kind, knowledgeable, patient, and I know she really cares. Hope this helps! Lori
Hi, Lori!Out of curiosity, what did your oncologist have to say about the sugar/cancer relationship? It seems there are so many varying views on whether there is even a relationship; and if so, when are sweets considered too much? As someone with a sweet tooth, I worry about testing fate. Thanks for any info you can provide!
Linda in Seattle
On sugar, mine has said there is no relationship! Enjoy in moderation like everything else.
I have that same concern. I watch what I eat but even though my sweet tooth is better it’s still my one weakness.
Good idea about the one big question and I will think about that for my Monday appointment! Great that you have such a positive experience
Sounds like you have a great oncologist! I meet with mine every 3 or 4 months to discuss how I am doing and latest scan reports. I spend more time with the nurse though and they usually want me to ask my questions to the nurse and then relays what I asked to the doctor. I am still trying to get comfortable with her, she has a bit of an aloof personality, not like my previous oncologist. She does not want me doing supplements but set me up with a nutritionist and a therapist, which I appreciate. She has great credentials but I would like her to be a bit warmer towards me and a bit more open to things other than medications.
LOL...My onco set me up with a nutrionist and a psychiatrist (all at the cancer center) once I went into palliative care (which I have been in for two years) basically bc once it got into spine, I need major pain meds. The nutrionitist wanted me to keep a chart of what I ate each day and I laughed and said, No, I do not think so. I have horrible eating habits (single and no children). I was not going to be doing that. And then the psychiatrist was even funnier. He was a man and he kept asking me if I ever felt like hurting myself and I said No. He must have asked the question about three times in various ways. I said why would I need to hurt myself. I have stage iv breast cancer, that will take care of me hurting myself and laughed. I said, this doesn't work for me. He said okay. He did not realize (I found out afterwards that I was stage iv). It is a cancer center so there are people with all different kinds of cancer. I told my pain doctor (who I really really like, much more than my onco) that I think I disappointed him bc I did not want to hurt myself. but it was something they make you try when you are in palliative care. She takes care of all the pain meds I need and is not stingy.
Hi Linda,You asked me what my onc said about sugar and I see there is another question about that just today also. My onc does not believe that research shows that sugar causes cancer to grow. She is a believer in good nutrition, low sugar, very limited alcohol and exercise. She feels conclusions are being made about sugar and MBC that are not in line with the research findings. She said yes, cancer loves glucose, but it will turn anything into glucose...protein, fats, and carbs, so if there is not glucose available the cancer cells will get their need of glucose by other means. Even by eating the dead cancer cells. She does not want her patients to think that if they have a little sugar, and their scans are not good, that the patient did something to cause that. Personally, I stay low on sugar because I know that it is just plain healthy eating and good for immunity. With that said, we are having peach pie tonight for dessert.😀 Lori
Ha. We talk about horses. 🤦♀️🤷♀️
Trials are great when you run out of other options. Seems to me if you are stable and have energy to do what you want, stay the course. A stage 3 trial is more appealing but at my stage I am to ready to get into a stage 1 where they are testing for safety--I'll wait as long as I can on that!
I sometimes ask my onco questions that I really am not ready to do or know I will not do , just to see what she says.
Just curious: Can you provide an example of one of those questions?Linda
My onco from day (after being referred from their breast cancer center to their cancer center once I was diagnosed as stage iv). She said her goal was to keep me alive as long as she could with the best quality of life. Here I am four years later but I had always told her I am NOT willing to do any chemo or any real invasive surgery or deal with any drugs that had really bad side effects. I am not married, have no children or siblings and there is no one that depends on me so I am not willing to put myself through that. So I think she gets annoyed with me bc she had wanted me to do radiation to my spine when the first lesion showed up and I said no, I told you I would not. Then a few months ago a second one showed up. This time (I think she thinks that I do not listen to her (she is right though LOL)) she had a radiologist doctor call me to tell me that it was in my spine but pushing towards my spinal cord and that if it got inside my spinal cord, it would be too late and I would be paralyzed from the waist down. Not sure if I believed her 100% but it scared me enough to do the two weeks of radiation. I just hate going to the cancer center. I do not think about it much when I am home (I NEVER read books, or articles, or videos about it) so I only remember when I have to go there. But the fear of being paralyzed scared me enough to do the radiation.
I can tell you this for certain, I have far less issues being on IV taxol than I ever did on pills. Also the taxol dramatically reduced my liver tumors and continues to do so. Also, my bone and spine tumors remain stable for the past two years. I have been MBC for 4 years now. I was mostly concerned about my liver and I do not have any more pain from that or any of the caner for several months. I easily would have been dead by early April if I had not done this but I knew that by looking at my scans, not just the reports. So, I am much happier on taxol for however long that lasts. I was surprised that it was so easy to deal with as I expected far worse.
I'm a long timer--diagnosed with bone mets from the get go, over 17 years ago. I haven't had monthly appts for ages, really don't remember when we moved to more time in between appts. My first onc retired about 3years ago. I really loved having her as my onc! She was very experienced, wise and knew alot about mbc. She told me early on that she pays most attention to what we tell her about how we're feeling, scans next and tumor markers a distant third. She was very direct in communicating, and that's what I had hoped for in my onc. I felt as though I could ask her anything. (We also talked about horses! She and her husband had several rescued retired race horses, and I had horses as a child and still love them!) If my onc wanted me to have appts more often than I felt necessary,I'd ask what their thinking was about the amt of time between appts. And it's okay to search for another onc if you aren't comfortable with the doctor you have. My "new" onc's office was relocated due to some organizational changes within the medical system and I told her that I would rather drive the 80 minutes each way to see her than switch to another onc. I am at a point in my life where I don't continue seeing doctors that I don't feel comfortable with. I hope you can find a way to be comfortable with whoever you onc is.
Thanks good advice and agree. My one is pretty well known in this market so I always wonder whether I should stick with him because at the right stage he could be very helpful. The first oncologist I had I said farewell to and just as well as his diagnosis wasn’t right as I was de novo! So I guess that made me a little sceptical as well.
Hello PJBinMI, I'm astounded 17 years God bless you! Didn't know that was possible
Hi there, this is an interesting topic and great to hear others' experiences. Unless I have had a scan, I get a phone call and I certainly feel it's something the onc wants to get done ASAP to get on with more important stuff! BTW, it could be anyone at the end of the line, my hospital offers no consistency on who patients deal with, and that really affects the quality of the conversation. I often get told my bloods are 'fine' and sometimes I ask for the specifics. Even with face-to-face, it's over in a blink and only when I'm on the other side of the hospital door do I suddenly remember that pesky thing that's been bothering me... It would be nice to feel like someone there really had my back.
Although I see mine face to face your experience really resonates. And like you I often walk out and then remember something I had meant to ask! Often though my queries would just be referred to the breast care nurse - even during the meeting.
I had a friend who positioned herself between the onc and the door! lol That way she could block his exit. (Wish I had seen that!) The first few years I had this cancer, I keep a very large binder full of cancer related info with sections for medical reports, one for my own notes from appts, and questions for appts. That binder filled up quicker than I expected and "volume 2" ended up taking me thru the time I stopped adding so much, lol. I still get copies of reports of blood work and scans, and carry a small notebook in my purse with lists of questions and notes. I also have a couple of mild to moderate heart issues, so I write down my blood pressure whenever it's taken. I write it in my small pocket calendar book.
Good advice - I need to get organised and resist the sense I'm being hustled out. Thanks!
I am impressed. I do not keep track of anything. The center does have a patient portal so the day after I have my CT scan, they now put it immediately in my portal so I can see it before I even seen my onco in the next few days. I just read the summary (as does my onco) bc the rest is gibberish that only a radiologist would understand. I do not get upset by what I see and I do not google anything. I wait until my next visit. There was a spot in my kidney on my last CT scan (right before I was starting the radiation) so my onco tells me she was not going to mention it bc she knew I was uneasy about the radiation and said that the spot was small so they could not tell if it was cancer or not and I would have to wait until my next scan (should be sometime this month). In my head, I'm thinkin you said you did not want to bring it up before my radiation and yet she did anyway. LOL. I think she figured I saw it (which i did) but I was not stressed. Until I know for sure. I would not have even asked her about it. I will find out this month. I never stress about the results bc nothing I can do is going to change anything.
My experience of the nurse is leaving messages on an answering machine which are usually not returned; the nurse isn't there in the consultation. It's quite empowering to know what happens in other institutions - makes me understand why I'm not satisfied with my care, not just being high maintenance!
Yes the breast care nurse attends each meeting and often feels to me like she’s there to act as the main point of contact. Between meetings I would either contact her or the pharmacy direct as I take a fair amount of supplements so check interactions with them. I have emailed the oncologist once or twice in between meetings and to be fair he has responded. I’m not sure where you are based (I’m UK) but I always got the impression (and maybe I’m wrong!) that the standard of care in the US, on the assumption you can pay, was first rate and ahead of many other counties, certainly on the integrative side. I’m really interested to hear about others’ experiences as perception and reality are often very different I guess!
They have never advised me to take any kind of supplements and I am 61 years old, being diagnosed at 57. I never took a vitamin in my life, was never hospitalized, never really sick, except for a cold and sometimes could go three years without seeing a doctor. If i had a cold I stayed home and took over the count meds. I was and am still a long-time smoker of 40 years. Even my onco said she was not going to tell me to try and stop after 40 years and I would not have done so anyway. I only stopped drinking which I did not do much of anything but with all the meds I am on, I would not chance it.
My onco does not respond to emails or phone calls unless it is an emergency on her part and she is off on Fridays. My pain doctor does not read emails at all. I get it though. My onco once told me bc she seemed so frazzled that they are basically expected to see a certain amount of patients in a limited amount of time. I read an article about it once (it was about cancer doctors, not the cancer itself) and it said most oncologists are expected to see a patient every 12 minutes. So I realize that I am not her only patient and there are some people that need more of her time than I do.
I'm UK too and, like you, take supplements in an effort to give myself the best chance. Stupidly, because whenever I've raised questions with an onc about them the response to each has been 'no', I've stopped asking - not very mature of me!
Mine refuses to address it but the pharmacy have cleared most save for one or two. It’s tough but I guess I can see their point of view. My dream would be where each branch of ‘medicine’ supports and complements one another and treatment is far more personalised. I hope we will get there but in interim, sites like this are super helpful to share experiences so we can put that to our teams!
Yes, you're right, this site and the women on it have been collossally helpful navigating these unfamiliar waters
I've often joked that I used to have just two doctors, primary care and gynecologist, but now I have enough docs to field a baseball team! I've felt as though my body is broken down into pieces with the various doctors. A couple of years ago, I decided to see a gerontologist as I had read that they often are really good at putting the pieces together. I could only find one of those specialists within an hour and a half drive time from me and his office was in a very very poor part of the city. He didn't think I needed him given all the docs I had. Now I rely on my primary care doctor, who is in her 60s, is working just half time and would like to retire but there is only one other primary care doc around here and she doesn't want to leave her patients without good local resources. She's great at listening to me, answering questions, referring me to other medical resources and writing me prescriptions when specialists don't respond to my phoned requests quickly enough. I also switched from a mail order prescription service highly endorsed by my insurance company to a local pharmacy where they know me and provide great information. I pay a little more, but figured it out and it was such a small amount it was well worth it.
Thank yiu for your thoughtful question. Isn’t it strange that cancer treatment can fall into this vacuum when nothing is happening (thank God) but yiu always have to be on the alert. This fall my oncologist said she’d see me every 6 to 8 weeks instead of monthly…I felt like she was abandoning me! But in reality, she was giving me a chance to feel more normal while things are stable. You’re right…what do we talk about? Well, Covid and getting infections is always a worry because of IBrance…getting exercise, coping with emotions, and what to look out for in terms of symptoms…or questions about any new treatments or non traditional supplements. Hope all this helps!
Thank you and yes you are right - I always think the importance will become more obvious as and when I stop responding and need to move on to a new line of treatment. When nothing is happening less to discuss so maybe I should be happy with that! I think passed covid on to him to that’s one topic I avoid these days😱
Yup. Nothing to talk about means all ok 🥰
I love my onocologyst she is the sweetest. We are lucky to have all the onocologyst meet on a weekly basis to discuss patients any concerns . Currently I see her every 2 mths. They are still watching my 2 bone leisions and liver. Bones have started to heal, liver stayed the same. Have another CT scan next week then see her. I am still a newly starting 4th cycle of Ibrance. Soooo saying all that lol. They like to see you at least every 2 mths and scans about the same to see that the medications are working. Check to make sure you aren't having any crazy symptoms. I ask her questions about foods or vitamins. The nurse asks questions on how I am feeling, weight and blood pressure. We joke around and I make them laugh lol. 1/2 he in and out. Eventually as I heal time with Drs is less and less 🥰
Great to hear that you have had such a positive experience😊
We talk about the usual: bloodwork results, treatments and any side effects, and then I get into the idea of coming off all of these treatments at some point when I reach NED! My onc finally agreed that if I show consecutive clear PETs then we can discuss that plan. Thus far I was always told these treatments are forever. Progress~
I do love my doctors and they’re used to me getting into discussions on natural adjunct treatments and the potential of weaning me off this stuff someday. I’m a big believer in sugar being a big catalyst for delaying healing. They don’t agree, and many don’t, but my body and my breast literally hurts after I eat it. Not that I’ve been able to stop completely but doing my best to limit it.
I’ll never stop looking for ways to cease this disease once and for all. Currently I’m looking back into fenbendazole, which many women have had success with. Hormone driven cancers like mine need to be a little more careful, unless we’re already in Menopause or on hormone blockers.
I’ll post an interesting video I just saw on a woman with triple negative cancer who did well on it soon.
That’s fascinating that they say you can consider coming off meds when you are NED. I have had a metabolic complete response (so far) and that had never been raised nor can I imagine it will be. Do post the video content when you can!
My onc only mentioned it because I keep pushing for it! I think I wore him down. This was the first time he ever even hinted at having a discussion about it. From day one even when I was in the hospital I was adamant that I wasn’t doing chemo. I have always had a natural mindset, and although I became much more willing to accept ongoing treatment / medications since my life was on the line, I’m always going to be looking to go back to natural, even if it takes some time.
Sorry! I posted the vid in a new thread. Here it is so you don’t have to search for it:
Let me know if it doesn’t show up
I have had a string of oncologists at Sloan, but each has been great. The latest one is young and really sharp. I see her once every three months and email portal her questions in between. Always answered same day! See nursing or lab team for shots in between.
We run through how I am feeling. Currently dealing with dropped foot, which may, or may not, be radiation related from April 2019. Have five doctors on this trying to figure out if it is permanent! Oy!
I ask questions about what would be next and how people do on it. Been stable since summer of 2019 after Feb diagnosis. Talk about clinical trials. She never rushes me. I make notes on my phone of what to ask her.
She lives in NYC and commutes to a satellite office here in NJ. During the pandemic, I offered to drive her back if her Uber did not show, which blew her away. I know her dad is older and she worries about him.
Last visit both her amazing nurse and her scheduler were out on medical leave, which really was tough on her. She came in and saw me without a nurse first to save time for me as labs had taken a while.
Know at some point she may move on, but really appreciate her now.
She last hugged me the second week in March 2020...I can see with Covid she misses that! Very warm person.
She sounds great and I’m very happy that your experience has been so positive😊
I keep a small note book handy that I write down my questions between phone appointments . Otherwise I get off the phone and have forgotten to ask anything.🤪. We usually discuss side effects that I am experiencing and how to minimize them . We go over what the future appointments will be re . scan s approx schedule , referrals to other drs , my oncologist has been amazing at getting me referrals to other specialist . I have not seen my oncologist in person since last Nov . I was seen by her dr .a month ago . And she is also very knowledgeable. But the note book of questions is key to me and keeping things straight .
Luann
JKMS• in reply to
That’s a v good idea!
• in reply toJKMS
I keep a list for each doctor I see. Too damn many to keep things straight lol. And I find you have to navigate and advocate for yourself . But I have great drs . Thankfully.
I do the same. I have a small notebook that I use for my monthly Onc. appointments and make note of questions throughout the month. Usually side effects, BP stats, questions about new treatments I’ve seen etc. and. I note his replies. Last week I asked about when to get my booster shot also.
I see my oncologist every month and in between I see my primary care doctor. Necessary? Probably not but it makes me feel like like someone is paying attention to my side effects and blood test results.
Blood test results is a good point and one that mine has never addressed. My nutritionalist and I actually go through them though and she’s an amazing source of info
Just want to say that this is a great discussion and I am so glad you asked about this, JKMS!
I meet with my oncologist every other month and with the nurse practitioner the other months. I have monthly blood work and Faslodex shots. My MRI scan is every four months. The oncologist and nurse practitioner ask me if anything has been going on the past month, how I am feeling, do I have any back pain, abdominal pain, headaches, and any changes in my bowels. I have a physical each month. The month I have an MRI we will discuss the results. We have also discussed the upcoming holidays and being with family members especially those coming from out of state. My nurse practitioner suggests that everyone have a Covid test before getting toether. I hope this helps.
Thanks. Very interesting that you have a physical each month and I might suggest that to them
Its been 4 years for me and for the past two years, I basically only see my onco after my three month CT scan. I have had scans always at three months. So that is the only time I see her is after I have had one done to discuss what, if anything, was found. Other than that, there is no reason to see her. Like, you what is there to talk about. I do believe some doctors do it just to charge insurance. I get ambien with two refills (for sleep) from my primary doctor. My friend who has private insurance her primary doctor always makes her do a facebook time (is that what it is called) consultation every single month to get her ambien when it can be given with refills. But this way her doctor gets to bill for it. Many of them lost money during Covid.
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