I apologize this is long, but I need some help. My oncologist resigned in May without warning. I have seen his PA for the past 3 months. I'm not exceptionally fond of her (she's judgmental and gives me the impression she is nosy. This is her 2nd career, she was a journalist before), but I understood that I needed to see someone within the practice before I could be reassigned. I had heard great reviews from my soon to be new oncologist. I met with her yesterday and I am not a fan! My appointment was at the end of the day (I usually have a 7:45 am appointment and this was at 3:45.) and I felt rushed to be seen, infused with Zometa, and hurried out the door. I left the office in tears as I felt shuffled through the system as I have patiently waited for an appointment with this very valued provider. I was unable to ask questions about her idea of a plan, refills for medications or whether or not I should get a flu shot. I was literally sitting in the chair for Zometa and they were cleaning the machines and turning out the lights. One dear soul sat across from me in disbelief and actually asked if they wanted her to leave so they (nurses) could go home! I know it is the system instead of the provider herself, but geez!!!
I had been with my past oncologist in this journey since 2006. I feel deserted! He spoke my language of facts with a little of humor and we were all set to go. This new oncologist is very clinical. She harped on genetic testing (I am a carrier of ATM and Chek2 mutations.) and went on and on that my family members also need to be tested. My father is 71 and has had bladder cancer, my mother is deceased and my brother (48) has routine screenings because of my father and I. My children are 20 and 23, finishing college without cares of "future health crisis". I can only recommend that everyone gets these tests, but why should I put a damper on their lives if I don't have to? The oncologist wants to change my routine of appointments, stretch Zometa out to every three months and do more lab work. I'm fine with the above but wasn't told or given an opportunity to ask WHY? The icing on the cake may be that she told be to be prepared for Ibrance to stop working because I was approaching the 2 year mark. I have understood that this can happy at any time, but I think my first appointment was a little abrupt. Do you think I am overreacting? I plan to give her another shot, but I don't have another office visit until late November. The next appointment is scheduled for 7:45 am.
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If your new oncologist got great reviews, there is a reason. Some of them are not as personable as we may like, but that is not the point of what we need them for. I know my onco has many patients. If she took the time to sit and and respond to every fear or question her clients had, she would not be able to see and take care of all her patients. Doesn't she have a PA or a nurse navigator who you can ask those questions to. My onco spends an average I would say of about 7 minutes with me, going over blood results and such. I don't particularly care for her bc she seems a bit forgetful to me, but things are working good and I have enough friends, so I just need her to do the medical part of things. You may have caught her on a day that her schedule was super busy. I would give her another chance. She earned those good reviews, but if you really do not feel comfortable, then go to another onco. As for the Ibrance, I know women that have been on it for three years and longer. I got off after three cycles and am now on Verzenio. It was not because of progression but I felt awful on the Ibrance. Meanwhile another cancer woman I know loves it bc she has been on it for so long (125 mgs) and it continues to work for her and she work full time as a teacher (so much for the germs) and her and her husband also run a large cattle farm. I get the flu shot. Actually, my onco suggested I do but I have always gotten it in the past. My onco came into my room once while I was waiting to see her and apologized and asked if I could wait a bit bc her prior patient had just been given news and was hysterical. I said no problem. But if every single patient needed that extra time, she would not be able to see them all.
Thank you for your response. I'm not overly sensitive to the amount of time spent with me as a patient. My entire appointment of labwork, discussion and 20 minute Zometa infusion lasted 50 minutes. It has always taken 2+ hours for these appointments. I could understand if the office was full, but I was the last man standing! No other patients were there because they told me so. I work full time as a teacher myself but my past oncologist never wanted me to get the flu shot. I know that this is learning a "new normal" again, I just didn't need the additional stress of transitioning to a new oncologist at the beginning of a school year.
Odd how different oncos are. My onco told me to get the flu shot and even suggested the shingles shot but I told her No...I will continue to just get the flu shot as I always have. They even offered it in the cancer center but I had it done already. I was on Ibrance at the time and had no reaction to getting the flu shot. Maybe that was it. You were the last patient thus she was exhausted or whatever. Give her one more shot but if you do not feel comfortable, try to find a new one. I don't have the energy to put into it and I do not dislike her. I am never one that needs to know much. I told her at beginning of my treatment with her. I was on forum boards where women get themselves all worked up about tumor markers and keep charts and really stress themselves out and keep all the paperwork. I told her from beginning. I am not one of those women. I don't need to know my tumor markers, I don't need copies of anything. Basically all I need to know is it if is working or not, and if not, what is the next type of treatment. Been a year and a half for me and that works. But I realize some women feel better knowing everything. Unless my cancer spreads, that is all I need to know. It is stressful to start from scratch. You may have just caught on a day that she was super busy and being the last patient was tired. Give her another chance and you may be happy that you did.
You keep rumor markers when they go from 125 to 600 in 2 months. Every case (and our needs) are different. We need to support on another. BTW on forth treatment since November. Things change, quickly! Just diagnosed with pneumonia, another suprise! Just keep fighting for your health and dignity. Stand up for yourself, if not have an advocate. 🙏💕
Well since my onco has told me (and another friend's onco had told her) that tumor markers are not definitive of anything and are rarely used because they could be high because of another reason, she does not use them. I do not need to know what they are if they are not useful for treatment. Everybody has their own way of preferring to handle their cancer and treatment. Many women likes to keep notes, others graphs, but I have seen on forum boards how stressed they get about them and worry unnecessarily. So I chose not to know them since my onco said there are loads of things that can cause tumor markers to rise and lower and not just the cancer. For those who wish to keep track, that is up to them. I prefer not to know and just be told when there is an issue or my medication is no longer working. The only real thing I learned from various forum boards is that the medications that they have now every woman has different experiences with side effects and such. Some women on the Ibrance feel the same on their week off. That was not the case with me. I got extremely ill on the week off and was unable to get out of bed but others praised it and felt no different. So what works well for one person, does not work the same for another. I do not get nervous with scans either. I kind of go by "it is what it is" and my worrying is not going to change the situation. I try hard to give cancer too much of my life. I had surgery and had to be off of the Ibrance for almost four months (and I was happy about that) but the recovery took so much longer to heal bc the Ibrance had compromised my immune system (cut tunnels in my leg) that when I went back to the cancer center and did retesting they found that a new cancer tumor had grown in the same breast I already have a tumor. My onco decided that the Ibrance was not for me and now on Verzenio, the lowest dose which does not make me tired, and I know how I am going to feel every day. The 150 mg. of V twice a day was horrible, then the lower dose of 100 mg. twice a day was the same. Then I went on the lowest dose 50 mg. twice a day and what a difference. I don't get as tired, I know day by day basically how I am going to feel. So this scan is I guess to check on the second tumor. I just don't get upset or worry about it because it won't change anything. There are always more lines of treatment. Ibrance seems to be the first line of treatment bc a majority of women if they get stay on it for a year seem to be doing very well on it and alot of years. I read where women ask their oncos how long do they have to live? I would never ask that bc an onco is not a psychic. To each his own way of dealing with this. Very sorry to hear though that you have been through four lines of treatment within a year. I can imagine how stressful that could be. Wishing you the best.
Reading Kearnans reply made me temper my response which was going to be “run.” What do the reviews say? She seems a bit uncouth to me, and btw I’ve been on Ibrance over 4 years and have read about others on it 6. So she may be using statistics but why steal your hope and cause angst needlessly. Or at least prematurely. Give her another shot but I would tell her, and I’m sure you will be diplomatic, that you would like to be able to ask questions and participate in your plan of care. You understand it is a very busy practice, but just a few extra minutes to discuss things with her would go a long way to allaying your anxiety in dealing with this diagnosis. If you don’t like her answers or demeanor you can either resign yourself to a clinician who is probably clinically competent but not particularly compassionate, or find someone who is a better fit. I honestly don’t know why anyone goes into oncology who does show concern for the person behind the disease. There’s always radiology...or research.
To add to insult, I was just called to schedule a brain MRI for Monday due to the doctor’s recommendation. This was not discussed in my appointment yesterday! Geez ...
She seems on point clinically but not very personable. That would unnerve me. I’m so lucky. I have a great clinician who spends time talking about how this affects my life.
I would definitely find another dr. Trust is important battling this damn mbc. I would call and speak to her- what is the test for!? I would not do something that was not discussed first of all. Reviews can be fudged like anything else. You have to be okay with her and you are not. I think she is insensitive and should be in research. To tell you that about ibrance is too much. I would run😘 I have worked with drs for 40 years; some are brilliant with no bedside manner at all but I would see them if needed. I don’t need a lot but respect, openness and communication are necessities for me with my docs.♥️
Well that would bother me. Any testing that you are going through you should know about. I had a first onco at a different hospital. I had seen her before she was leaving for vacation for two weeks. Then I got a call from the hospital that I am scheduled for several tests. I said who ordered them. I just seen my onco last week and she did not mention them at all. They hemmed and hawed. I said I am not coming in for those tests. I said you cannot even tell me why I am getting them and my onco never mentioned them, so you can go ahead and cancel. When she got back, I was annoyed and asked her who ordered these tests that you never mentioned. She did not even know about them. She looked at the computer and said Oh, I guess they were doing it as a safety precaution. No, this was because when I first started, I had (or thought I had no insurance) so I went to this place which helps low income women and such. I accidentally found out when there that I did indeed have govt. marketplace medicaid. I was shocked. I had tried to find medical coverage I could afford on the marketplace website but I was overwhelmed and just stopped. Then I started getting all these brochures and thought Oh they seen my name in the system. Turns out (and I had laid out about $3,000 in medical bills for other types of issues I was having) and apparently I had been put on Affinity First medicaid but like with the rest of the envelopes, I assumed it was junk mail and threw it out. So I had medicaid for a free year. One thing I noticed on medicaid was that any doctor or place I went to wanted to do all these tests. I realized that is how they make their money. So a brain MRI, no you should have been explained why they feed the need to do that. My new onco tells me beforehand when she is setting up a test. You have every right to know my a brain mri is being done. I would have told them unless I get a phone call from the doctor as to why this is being done, I am not coming in.
Well I had the MRI yesterday and they discovered that a spot that was treated by Gamma Knife in 2017 has grown in size. They are unsure why this has occurred. It could be fluid or it could be regrowth. Now we wait 6 weeks before we have another MRI to see if there is a change. The onc and radiologist onc didn't appear to be too concerned. The Gamma Knife procedure is one of the scariest I've undergone. Maybe the new oncologist was on point when she asked for this MRI when the previous oncologist never spoke of it? Emotions are all over the place.
I never heard of the gamma knife procedure. Now, I am too scared to look it up after seeing what you posted. Why would a stage iv patient need such a procedure if you do not mind my asking?
It is a form of radiation. I had a small lesion on my brain back in 2017. In gamma knife they can precisely radiate one area instead of the entire brain. Sadly after last week’s MRI, this spot has grown. I have to wait and see if it is just inflammation or if the lesion has grown.
So sorry to hear that. I will pray that it is just inflammation. The fact that the word knife was in there made me a bit wary. Here's hoping that it is just inflamed. Was this from breast cancer or a different type of cancer on the brain. Wow, you have been though a lot!
Original breast cancer diagnosis in 2006 and rediagnosed with MBC in 2017 that was found after suffering terrible back pain for 2 years. After I complained that physical therapy was trying to kill me, they threw their hands up and sent me to the pain clinic. It was there in a single mri that MBC was found. Scans determined it was on my hip, vertebrae in my back and a spot on my brain.
That terrifies me, brain cancer. I had a friend who married her elementary school boyfriend. She wanted nothing more than to have be married and have children. She had what I thought was a wonderful life, nothing like mine PLUS she was beautiful. She had four boys and desperately wanted a girl (she grew up with three sisters). She finally got her girl. About six months later her husband had been complaining about headaches now and then. They were due to go to a wedding and this time he was in agony and they took him to the hospital. They found a large cancerous brain tumor. Again, didn't drink smoke, exercised and just a really good man. Within a month, he died in the hospital. She completely fell apart bc she never had anything really bad ever happen in her life except the death of her grandparents in their 90s. Her parents had to sell their home and move in to take care of the kids. Luckily, and like us all, whatever does not kill you makes you stronger. Her kids grew up fine and she is close with her daughter. For some reason that always scares me. See you know your own body. Scary stuff cancer. This is my first round with cancer and diagnosed at stage iv so never had chemo, radiation. I remember not being that upset and I was alone at the time. It's odd....in the beginning months, I found it kind of interesting..like surreal...like eventually this would be over soon. Now, here I am a year and half later, Ibrance had to stop after 3 months, and now I am just angry that I have to go to cancer center or for scans. Wasn't angry in the beginning but now angry at the cancer all the time. But it would be worse. The best thing is that I have learned to let go of the little things that used to upset or bother me. And that is a blessing. I wish the best for you. So much to deal with.
I think most of them go into oncology because they do want to help woman with breast cancer. But I also think after a few years and having to give women bad news or tell them that something is no longer working and/or spreading, that the patients naturally get upset and devastated. Imagine having to do that all day every day for years. I think at some point for the onco's own peace of mind, they have, to a certain extent, be more clinical because it has to be depressing to tell a woman has cancer has spread or its the last line of treatment and deal with their fear. Then go home and come back and deal with it every day with different patients. I am sure some oncos even get upset although they may not show it when something is no longer working for a patient.
I don’t doubt it. But as a nurse and as someone whose oncologist has been doing this for decades and who manages to show concern for all aspects of my life with this disease, compassion fatigue is something you have to be on guard for and try to fight off. It is hard working in what may amount to a healthcare factory, seeing unmanageable numbers of patients and dealing with reimbursement constraints. But it’s no excuse for being so curt that a patient leaves tearful, fearful, uninformed that you’re ordering a ct. everyone has a bad day. There are days we could all do better. That’s why I said give her another chance. But if this is her baseline attitude towards patients, you have to decide if you can deal with this. I don’t know that I could. This is way more than routine healthcare.
I don't have what I would call a friendly relationship with my onco. It;s strictly medical. I just stay there because the cancer center itself has an attorney, a social worker, a nurse navigator and has waterfalls and plants and large wall aquariums. So I deal with her. She is not rude, not friendly, just matter of fact and that is okay with me. She does not answer emails or phone calls. She does not work on Fridays. She told me if at night I am ever feeling sick or something feels off or if it on weekend or Friday, just call the cancer center (they are only officially open M-F 9 to 5) and she said an oncology doctor is always on call to answer questions. That is fine. She is entitled to a private life also.
Omg! I can’t do a long reply rite now cuz I just posted 2 others and am finally 2:30 am feeling sleepy-I’ll try to remember to revisit as we could offer each other help (if u can see my post about same thing with new OA as primary care-Ugh)
But I must comm ent on the 2 year mark-my new Oncologist after 9 years at Mass General Hospital in Boston and Dana Farber my new UCLA-affiliated doc in Calif was in on the initial use of Ibrance/Femara therapy and he said and I quote: “I know of a woman who has been on this combo with effect for 8+ years (he lost touch with her after he moved bout 3 hours north of LA where I live)”.
I don’t know how to do email or PMs from this app—if you know how feel free—maybe what works for one of us may help the other through this transition.
Lastly, I’d definitely mention to head nurse first as courtesy about how insensitive and unprofessional maybe even in fringe of unethical and moral to do that to you and another patient—give them opportunity to correct that; then mention to doc that you did that & you’d prefer to offer chance to improve before he/she intervenes; but get their opinion on same.
Oops I said I couldn’t do long thorough comment and here I go on tangient again!
Thanks for listening I’ll try to be bit more thorough with my next eeoly
My thought is to send her an email about how you feel. And what you are used to in appts and you hope that going forward things will be smoother. Start with your surprise about the request for the brain MRI. Take your time to write it.
I started down the metastatic BC route earlier this year, saw a NP at the third appt who I was not impressed with; she did not seem to be informed enough. Told the oncologist that I refused to see her going forward unless I felt they were on the same page. And that wish was granted. At Sloan Kettering there is an online portal to use for messaging, as well as email right to the doctors. I use it.
BTW my oncologist now is the one who at my first appt with her a couple of years ago (I think I saw 5 in 5 years) told me I was a candidate for survivorship, which I was in for a couple of years. At my appt with her in Mar of this year I said...I'm baaaack!
I am big on telling them when things go right, as well as wrong!
If for whatever reason, I am not happy with my onco or she leaves or something, Mt. Sinai would be my next step. But I have to say I think I am more pleased with the entire cancer center as opposed to just my onco. I go to Maimonides cancer center in Brooklyn, NY. They have nurse navigators (who did all the paperwork for me to receive SSDI, all I did was sign, a social worker who from my first appt. at the cancer center arranged for me (since I do not drive and have nobody to drive me) set me up with free car service to and from all appts. I am not married, have no children and no family so having that type of support from the Cancer Center makes me want to stay there. My onco on the other hand will answer questions I have at my appt. but she does not respond to emails or phone calls (doesn't work on Fridays) so I was told that if anything happens, there is always a doctor on call and to call that number. Am I upset, no? Only because I realize the doctor has her own private life and she cannot answer or make phone calls to all her patients. So far I have not had to call though.
I would call and insist on a meeting with the Oncologist . I imagine she is overwhelmed with taking on a huge number of patients! But, you need to write down all your concerns and go very gently. Remember that she knows she is being compared to your previous Oncologist by all the patients, so she may be defensive.
I found it very stressful switching oncs when my original left just as I was dx with mbc. I loved her. She was so calming and patient.
My new onc came highly recommended too and I have found her to have a somilar personality to my old onc. I also find it easier to talk to her. She understands that I am totally traumatized by this dx. I see her every other appt. When I see her PA.
She is always there for scan results appts. which I really appreciate.
I would see how your next appt. goes before you make a decision on your opinion of her.
The beginning of the day seems to be a better appt. as they are not as backed up as they are latter in the day. We never know what issues they have encountered all day.
I wish you luck. It is so important to have a patient knowledgeable onc that we have faith in and can discuss anything with.
Your note sure hit a nerve here! I'm a long timer (15 1/2 years with mbc) and for the last few years I was more worried about my onc retiring than having a progression requiring a change in meds! My onc was just the perfect onc for me! Experienced and knowledable about mbc, direct in communicating, able to say "I don't know" when she didn't. Not the huggy soft type but kind and supportive in a different way. She was my "security blanket." She retired last Dec after several weeks of being on leave, so I had no chance to say good bye or talk about what next. Sigh. I live in a rural area and our small town local hospital has a "cancer clinic" staffed by oncs from a cancer center in the 50 miles away middle size college town. Fortunately for me, a younger woman onc with experience with bc is now coming here. I've had three appts with her and she suggested I go to U of Michigan CCC to see her mentor for a second opinion so I did do that and he was very encouraging. That raised my opinion of her, too! But it still isn't the same! All that said, I think that having an onc we like and trust is really important. If you are stable and not worried about the cancer itself, wait to your morning appt but if you aren't, call and ask for an appt with her before 3 months and ask that you be scheduled the amount of time with her that she would have with a new patient, which you are to her! My long time onc was also super busy, and there were times when our appts seemed rushed but she always answered my questions and I always knew that when some thing was going on with my health, she would give me all the time I needed. And I knew that when she seemed rushed it was because she was giving other patients the time and attention they needed! I also have always gone to onc appts with a note to myself about questions I had, refills I needed and anything else pressing. And that has become even more important to me now as my thinking isn't as good as it was! I don't want to think it is age, but I don't like thinking it is cancer or cancer treatment either! I'm going to ask about whether there is a psychologist or somebody who can assess cognitive changes.......
My mind has become all confused also. I think its because of stress bc I had been on medicaid and never had to pay a penny. Now, I am on Medicare (which I stupidly assumed was the same.) Medicare expects me to pay $2,500 each month for my coshare of Verzenio which I could not do. So I went a month without and then the social worker called and was able to get me one month free. But like someone mentioned, you have to be your own advocate. I called Lilly (the co. that makes the Verzenio) filled out an online form (you had to be on medicare and have plan D) and then emailed to my oncos secretary and asked her to please get the doctor to quickly fill out the one page needed and sign it so that I could apply. They did so and I got the call that I was approved until the end of this year to get my medication completely free. My social worker was very impressed since she was only able to get me one month for free. I am in the middle of joining a pooled trust fund, have been accepted, money is going into the trust and now it has to go to Medicaid to be approved for a zero spend down so I will have Medicare as my primary, and Medicaid will pay my Medicare premiums of !35.50 for Plan B and $37.90 for Plan D and whatever Medicare does not pay for, Medicaid will PLUS pay any copays or deductibles. The documents are done and the attorney just has to submit them to Medicaid to approve. Medicaid will then pay 3 months prior of any medical bills I have. I was told it takes a few months so I did some research found the name of the supervisor of that pooled trust spend department and she told me to tell my attorney to call her and put expedited on it and she will make sure that instead of waiting a few months, that she can get me approved within a week. It is alot of phone calls and paperwork, but I took it upon myself and it worked out well.
No, I don’t believe you’re overreacting. I don’t like to feel rushed when I’m meeting with my doctors, especially my oncologist because this is a very important visit. For her to give you such an abrupt answer and then send you on your way without further discussion would rub me the wrong way as well. My oncologist told me she has a patient who has been on Ibrance for 5 years by the way. Do you have another way that you can contact your oncologist? Mine is usually available by e-mail if I have any further questions. Sometimes she’ll even give me a followup phone call in response to my e-mail. Is this an option for you?
Yes, I have reached out to her via email and an online chart system. I have told her that I felt that my visit was rushed and I that I had additional questions. She responded quickly. I’ll chalk that as points in her favor.
My onco never replies to emails or phone calls. She doesn't work on Fridays. She tells me if anything feel seriously wrong on a weekend to go to the ER at the hospital associated with the cancer center. I told her that hospital has such a bad reputation (their ER is the worst) that if I got run over by a truck right in front of the hospital I would demand to be taken somewhere else. She also said there is always a doctor on call at night and/or weekends who could answer my questions so always amazed to see that some oncos call their patients at home or like you actually respond to emails.
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