Choosing an Oncologist

macdebbie

I need help....

I'm struggling with the oncologist relationship.

I met with two oncologists at 2 different practices, both practices recommended by my BCS (there are 3 in town, but the other one doesn't take my insurance). I vetted all of them via Vitals and Health Grades and chose them based on their training, years in practice, reviews, and additionally for the first one because a neighbor whose husband had pancreatic cancer, and another neighbor whose father-in-law goes to him raved about him.

I met with the first oncologist, whose practice is next door to my BCS. I found him a tad arrogant, but to be honest, I was a discombobulated because I had only been diagnosed a week prior, and had barely read up on the oncology piece so didn't feel prepared. I also wanted to tape the meeting and left my phone at home and couldn't get the recorder to work on my husband's phone. But I did talk to a couple of people later who had also met with him or used him and said they found the same, or as one person put it - "there are other people in that practice with softer bedside manners". I was a little upset because I was stressed trying to just pick someone and had called the PA at my BCS's office, and asked for help. All she really told me was who they send a lot of cases to, not anything about their personality. But when I met with the BCS, she told me she would not have "matched" me with this oncologist.

At the time I met with the first oncologist, I felt I was bothering him with my questions, but as I look back over my notes, I see that he did answer all of them, in great detail. He told me if my tumor was 6mm or greater, I would qualify for Oncotype, which I do want done. He even detailed what a chemo schedule would look like if necessary. And technically, I felt he knew what he was talking about. He seemed willing to work with me saying that he would discourage it, but if I decided to not take Tamoxifen due to the side effects, he would consider a lower dose, but realize that hasn't been studied.

The second oncologist was very different. He asked me what I knew about my cancer, sat between my husband and I and drew pictures, to show exactly what my cancer meant, but when I tried to press him on treatment, all he would say was under 5mm no chemo and no Oncotype, 5mm-1cm we would have a "lengthy discussion" and 1cm-2cm and less than 3 nodes we would talk about Oncotype. That leads me to believe he's not as open to Oncotype as the first Oncologist. When I pressed for details about treatment, he told me not to go down that rabbit hole as we don't have the final path, and my focus should be on the surgery. The problem with that is the BCS told me once she has the final path she notifies the oncologist and he sends to Oncotype or not right then to get the ball rolling because it takes 2 weeks for the results, and it's best to have all the data in hand before I meet with him for my post op which isn't scheduled until 9/30. Additionally, my insurance has to pre-approve it which could take several weeks. She if he waits until 9/30, that brings me into mid-October before I have any results IF he even agrees to Oncotype. It also pushes off my radiation appt which the radiation oncologist wanted 2 weeks after my surgery and after my BCS post op.

I called the second oncologist's office yesterday to try and figure all that out, and am not really happy with the interaction. I spoke with 3 nurses and a financial counselor, none of whom knew who does the pre-approval for Oncotype. Someone was supposed to find out and call me back and no one ever called. I asked if the dr had a dedicated PA I could talk to and he does not. He has a dedicated nurse only, who I never spoke to.

At my BCS's office it's easy. If I have a medical question I call the dedicated PA who answers the question or forwards it to the BCS. If I have an insurance question, there is one person who handles all that. The first oncologist's office has a similar set up with each doc having one or two PAs.

So I feel like the first oncologist knows his stuff, has good experience, but his bedside manner is a little off-putting. The second oncologist also is very smart, has the same number of years experience, has a softer bedside manner but is not as detailed as I would like. Hard to tell in 1/2 an hour, but I couldn't tell if he would dictate treatment more or see me as a partner. In listening to the tape of my visit with him, it seemed he was a bit condescending, constantly asking "does that make sense, do you understand?" which after hearing it about 15 times was a little annoying.

To complicate matters, when I was first looking for an oncologist, I posted to Next Door and a woman reached out to me after I had met with the first one, and she actually works in that office. An oncology nurse at the same office who I didn't know is a new neighbor also reached out to me. Both confirmed my feeling of the first oncologist not having the softest bedside manner and said he is really, really good with "stats" and will push me hard, despite side effects, that he is all about outcomes.

They told me there are other oncologists in that practice who would likely be a better fit and suggested names. Unfortunately, they didn't suggest the same names! They did tell me that their office relies heavily on the PAs and so you don't always see the oncologist, and I don't know if I like that or if that is a non-issue. The second oncologist said I would always see him.

I told my BCS after I met with the first oncologist that I would like to see someone else in that office and she said that's not possible, that the oncologist office has a policy not to allow that. I don't understand that, as how are you supposed to know if you click with someone if you don't meet them. I made it clear when I booked the appt it was a meet and greet. But the person who reached out to me that works there (a PA) told me that she could arrange that to happen. The oncologist she recommended she said is forthright but very personable, manages his caseload well, and doesn't rely on his PAs as heavily. She said he has a PA who has been with him for years, whereas she told me the first oncologist that I met there is going through an upheaval with his 2 PAs - one is leaving for maternity leave, and the other is leaving the practice. So there will be a lack of consistency in his practice for quite a while. He is 62 and has been practicing for 30+ years. He is also on the boards of several cancer groups so stays up to date. I initially had asked the PA at my BCS's office about him and she said she didn't know much about him, so I decided not to see him.

The first oncologist's practice that I met with (who also works with the recommended oncologist from the PA who works in his office), has a lot of nice things - they have a portal where I can ask questions and get my test results. They also have a Social Worker on staff, and participate in a lot of clinical trials. The second oncologist's office has none of that. They are both in the same building so location doesn't matter. One of my neighbors is a nurse and she really likes the practice the first and recommended oncologist are in.

I'm tempted to meet with the older recommended oncologist to have a third person to compare. It would be awkward, because if I don't click with him, I don't know if I could go back to the first. I don't get not being able to interview multiple oncologists in the same practice to find someone who is a good fit for you.

Can anyone help me make this decision? I have to decide fairly quickly, as surgery is 9/14 and I need someone finalized by then so that Oncotype can be sent.

This is keeping me up at night. SO stressful....

AliceBastable

The only reason I won't use a particular doctor is if they are grossly unprofessional in some way or if their information seems out of whack. I've never cared one way or another about personalities - it's a plus if they're a good doctor and irrelevant if they're a bad one. I'm completely neutral about my oncologist personality-wise. She's thorough and stays up-to-date on studies so that's all I need from her.

wrenn

My oncologist is arrogant and a couple of people I know dumped him for another onc. I was too overwhelmed in the beginning to do anything but just go along with whatever. When I broke down in exasperation finally he was quite warm (on his scale of warm) and he was really good knowledge wise so I was glad I stuck with him.

exbrnxgrl

macdebbie,

I’m not sure if there is one right way to pick an mo. For me, feeling personally comfortable with the mo as well as the mo being knowledgeable and experienced were equally important. I knew that I really needed both but that’s not true for everyone. I switched mo’s early in my treatment because although my first mo was very knowledgeable (department head too), I felt he didn’t really appreciate or answer my questions and kind of had a “Don’t worry little lady. Leave it up to me” attitude. I knew that this would absolutely not work so I switched. However, you need to evaluate what matters to you. Take care

PS: My mother hated her obstetrician’s bedside manner and overall condescending attitude. Never the less, he delivered all three of her children because I, the first born, was healthy. She believed that if he delivered her other babies they would be healthy too! Go figure.

macdebbie

xbrnxgrl, I feel the same as you. Experience but with a good bedside manner. Two things that frustrate me to no end are not being open to questions and an office that doesn't run well. Sometimes that wears on me more than anything else!

I'll see what happens today after calling the 2nd oncologist again today. Got nowhere yesterday. If it's more of the same I think I'll be moving on.

sunnidays

What I do at appointments is ask questions and my husband writes down the answers, my husband and I have a list of questions ready before we go in. The oncologist I see has a very brisk manner and is not exactly warm on the other hand she is a breast cancer specialist and a professor of oncology so on balance I think that is more important in the long run.

moth

It's a bit different in my province as we don't really shop for oncologists, though we can switch if we have a real mismatch....

for me, it comes down to 2 things:

-does this person know my type of cancer (or is willing to do a crash course & stay up to date on it?) and are they confident in their ability to treat it according to best evidence based practice?

-do they listen to me? I need to be heard if I bring up recent studies, conference reports, or trials etc and when I have questions. I need to be treated like a member of the team and an involved decision maker. I do not like being told what to do without first being heard about what I think. But also, when I have a good rapport with an oncologist, the whole point is for me to trust their skills, education and clinical experience and to just take their advice and recommendation without second guessing it.

That's pretty much it. I want results! I don't want to be condescended to and I want to know that my oncologist in on my side and willing to fight for tests, treatments (or in my case, compassionate access to a drug from the manufacturer).

exbrnxgrl

I should add that since I knew I had mbc shortly after my bmx that I knew my relationship with my mo would be a long term thing. If one is lower stage, then good bedside manner might not be as important as your relationship may be shorter.

sunnidays

Also, there are only 3 other oncologists I could see unless I want to travel and none of the others are breast cancer specialists.

BtwnStars

You are good to do research and ask questions and keep options open. I think, maybe tho you’ve done so much, you confused yourself.

I agree with the 2nd MO in that you really can’t get into oncotype and treatment plans until surgery and pathology. I had a similar diagnosis to you and the hypothetical changed a lot for me after full path and oncotype results. Unfortunately restraints by insurance isn’t something to get around.

Focus on what you can control right now which is selecting the MO you are most comfortable with right now. I ask also, while I think experience is great, I have a young MO who is aware of more recent treatments and things and I love her frank manner and she is very warm too.

Your diagnosis is very treatable and seems to be caught early, so most likely, depending on full path, you will have very standard care. So seems like it does come down to how you feel, personality wise about MO, but like someone else mentioned, you won’t be spending all that much time with them.

Double check with your BCS bcz I believe mine ordered the oncotype. It may have to be something joint between BCS and MO.

Please don’t stress and take care of yourself while you wait for surgery. You will be ok and if you choose the wrong MO and you aren’t happy with their care, you can always change. I know it feels like you want to rush thru and get it all done, but the timing will be left up to your treatment plan and doctors and availability, just have to go with it and not drive yourself crazy.

Are there nurse navigators or a counselor in practice you can talk to to sort it out?

Wish you well with your choice

Cowgirl13

My oncologist was my second opinion doc. The first oncologist was very well thought of and head of a department but I didn't feel very comfortable with her and also, the practice was too busy. I arrived about an hour early for the appointment and couldn't believe all the people in the waiting room. When I went for my second opinion, and I knew he was good--the minute he walked in the door I knew I would be very comfortable with him. I just never worried about anything and my last visit will probably be sometime this fall as I have 'graduated' after 10 plus years. I'm so thankful for him.

macdebbie

btwnstars, yes, I know Oncotype can't be done until after final path. I'm feeling a lot of pressure from my BCS's office. They told me they needed me to pick both my radiation therapist and my MO ASAP - and that was only after meeting the PA, I hadn't even met the BCS yet because they wanted to invite them to the Thurs review board meeting where my case would be reviewed.

That involved vetting people, then trying to set appts, learning about their modality and then going to the appt. I hadn't even been diagnosed 3 days when I had to start to pull all this together.

Then when I met with the BCS, she told me that the MO should have a "if this than that" conversation regarding Oncotype with me, so that right after final path Oncotype could be sent if he decided to do it (and I would be aware of his decision based on our conversation - i.e., if path comes back this, then we will do that) so that when I saw him for pre-op, he knew if chemo would be warranted and the visit would be useful for me.

But in the rush of all these appts and trying to educated myself, run a business, and life, I forgot to ask him that and called his office to discuss, and also relay that for whoever sends Oncotype out, my insurance requires pre-approval and they require a special way to get it. I can't afford to get stuck with a big bill.

I've called the MO's office and tried to discuss this, and for 2 days have just been getting the run around. they shuffle me between multiple nurses, the MO's dedicated nurse never calls back and I'm getting frustrated. A disorganized office is a pet peeve of mine. I'm going to call one more time today, and if I don't hear back from either the MO or his dedicated nurse, then I am going elsewhere, as I only have two weeks until surgery and this needs to get resolved by then. If they won't respond to me, I need to go back to the other MO and get him in the loop, talk about Oncotype (my BCS won't send it, she said that's up to the MO), and set up a post op with him.

I agree that it appears as of now that this is an "easy" cancer, so personality of the MO might be most important. To complicate matters, I was in contact with someone who works at the first MO's office (I didn't know initially she worked there) and she agreed about the first MO's bedside manner and said there are better fits in that office and she could arrange a meeting with someone else she thinks would be a better fit (they don't usually allow it), which is why I'm so aggravated with the 2nd MO's office not calling me back.

Yes, there is a nurse navigator, but to be honest she hasn't been much help. I called her and for 10 days never heard back. I told my BCS when I met her and she said she was going through some "personal health issues" and a few days later she called me and just told me about some programs - exercise, stress reduction, nutrition that are a hospital almost an hour away so nothing that would be useful to me.

It will all work out in the end somehow...

ThreeTree

macdebbie - My surgeon who did my biopsies and gave me the results, made a referral to an oncologist at the cancer center that is located on the same campus as my hospital and medical offices. They have a radiologist there (at the cancer center) whom most people just see routinely when they use that facility. (This is all a major cancer research center combined with a university teaching hospital all NCwhatever approved.) I don't know how I was actually assigned to the oncologist that I got, i.e., don't know if the surgeon made a specific referral or if the cancer center itself just gave me to the next one on the list (there are 3 or 4 oncologists at this location). I just went with it all because I was in shock. I did have questions and they gradually got answered over time. I met with the oncologist I was somehow "assigned" to and she's been fine as far as chemo, etc. was concerned. I think it was a pretty routine thing, e.g. if it's this kind of cancer and tumor, then you get this kind of treatment, etc. She is a very nice person, she's a bit young with two little kids, and I do think she believes she has more knowledge and experience than she does. Outside of chemo, I question just how much expertise she really has about medicine in general (supposedly board certified in both internal medicine and hematology). My regular provider also questioned just how much she knew outside of oncology when he was looking for some cholesterol info. I only really saw her for chemo and now for follow ups and that's fine. I also see the surgeon for follow-ups and I trust her much, much more and direct most of my questions, if any now, to her or other providers.

I did meet with the radiologist that seems to "come with the cancer center" I went to (again well known and well regarded), and she was very nice and very helpful, seemed to really know her stuff - took lots and lots of time to answer my questions. This radiologist, the surgeon, and the oncologist (at least I think she was included) had all already been to a tumor board meeting about my case. The problem with this radiation arrangement was that it was for regular photon radiation and I had been researching and becoming more interested in proton radiation, as I had a very large left sided tumor. She advised me to go for a consult with the proton radiologist at the proton center (also located on the same campus) and so I did. I wound up bucking their prescribed treatment and routine by going with the proton radiation, because I thought it was best for my situation. I actually liked and preferred the regular photon radiation doctor far and above the proton radiologist and I wished to high heaven that the first radiologist could have been the one to do the proton therapy, but that couldn't be. To this day, I wish I had had the first, but "regular" radiologist, but I am very, very glad I got the proton radiation.

I thought about switching oncologists, but decided I might get more "beyond chemo and oncology expertise" with another, but again, she is a very nice person and was easy to talk to. I think you have to weigh the bedside manner vs the expertise vs the actual type of treatment that is best for your situation, It's a hard thing to do.

What I don't understand for your case, is why you are the one expected to round all these people up and sort it all out to begin with. My surgeon was wonderful and arranged everything for me and I made a few changes as I went along. Also, I was so lucky to have everything all in one place at an excellent university teaching hospital/cancer center combo campus.

I'm sorry that your situation is the mess that it is and causing you so much stress. I hope you get it all sorted out and that you have a real smooth treatment ride.

macdebbie

Threetree, thanks so much for the info.

I too am very interested in Proton Therapy but when I spoke with the regular radiation therapist here, she told me that it was only being used in very select cases for pediatrics, brain tumors, and prostate cancer, which I know now reading is not the case. I think she said that because they don't do it here in Charleston, and maybe she's not up on it because it's not here. In any case, I thought seriously about going back home (Boston area) so that I could have Proton therapy as we could live with family for the 5 weeks and I would feel I got the most advanced care possible. I am worried about traveling now with COVID though, and since mine is a tiny (@6mm tumor they think) it may not be as big of a deal. Where are you located? Is Proton Therapy a shorter course?

I think what happened with the doctors, as I was diagnosed on 7/29, and I met with the BCS PA because she was on vacation on 8/2. We went over my path reports, what everything meant, the treatment plan, I got blood drawn for genetic testing, and she gave me a "provider list" and told me I needed to pick an oncologist and radiation therapist soon so they could be at the tumor review board meeting of my case.

My guess is if I had met with the BCS originally first, she would have provided a referral to a specific oncologist or a couple, same with the radiation therapist, but that one was easy as there were only two, they work together, and I liked the one I met with.

When I did meet with the BCS she told me that they do a lot of "matchmaking" so I think she is more involved in this. I had called the PA for help as I had not idea how to choose someone because even though you can vet people via Vitals and Healthgrades, personality is a big thing. The PA was pretty non-committal, saying only who they sent most of their cases too, didn't really elaborate of personality or who she thought would be a good fit for me.

So I've reached out to someone on the first MO's staff who knows the docs and she's recommended someone based on a long conversation I had with her. She also knows my PCP as she used to work with him, so knows what I like. She's trying to arrange a meeting for me now. It may not work, as my BCS told me I wouldn't be allowed to see anyone else there since I had already met with someone even though I was clear it was a "meet and greet". My sense is the BCS doesn't want to be referring to multiple docs because it looks bad. I really don't know. I just want to finally pick someone and be done with it.

I think if the woman I spoke with can't get me in to see this other oncologist, I'll just go back to the first guy I saw because clinically he was very good, and gave me a lot of info, and that trumps warm and fuzzy even though I prefer a combo of both. I just can't tolerate a really disorganized office. I put up with it with an old PCP for 2 years and pulled my hair out every time I had to deal with them, even though I liked the doctor. I left on my husband's urging and was SO much happier.

Thanks again for the info. I'm curious about your take on the proton therapy. I know it's supposed to be less damaging.

AliceBastable

I think it would have driven me bonkers if I'd had to find my own doctors. At the breast center I used, the mammogram, ultrasound, and biopsy are all done there, and the radiologist then passes the patient on to one of two surgeons who have their offices in that center. After my first appointment with the surgeon, she referred me to an oncologist - who was also the hematologist my PCP had referred me to, so I just changed the appointment date to fit the surgery. The oncologist wanted to see me before surgery just to touch base, which I appreciated. The RO was part of that hospital complex, and I think the only one for certain cancers. I didn't like him particularly, but I knew that was the most temporary relationship, so I put up with him.

One thing I found out was that all the specialists' office staff HATED my PCP and her staff. I'd been iffy on her for some time, and getting referrals (which my insurance demands) or any paperwork was so difficult, and most of her staff was so rude. So I finally switched and I almost get weepy with gratitude with how nice and efficient my new doctor and her staff are. So I guess for me, it boils down to how long and how often I'll see a particular doctor to determine if their personality counts.

ThreeTree

macdebbie - https://www.proton-therapy.org/map/

This is a map of proton centers in the US. Looks like there are a number in Florida, which wouldn't be far from Charleston, but with the Covid situation right now, I'd sure take my chances on Boston over Florida, if it was up to me! I'm in the Seattle area. We have the University of Washington, Fred Hutchinson Research/Cancer Care Alliance, and the Seattle Proton Center all kinda/sorta rolled into one. I have been so, so grateful that I've had that all available just a few minutes away. I hear these stories of others going all over the place and driving for hours and I really feel for them and count my blessings.

Proton therapy for me was the same amount of time as photon radiation would have been (every day for several weeks), and I did get a bit of a "sunburn" (not the accurate term, I know), and about halfway through I started to experience some pretty notable fatigue. 2-4 weeks after I was done, my skin was pretty much back to normal (there is some permanent darkening) and the fatigue had lifted. I remember it well because I was done with protons in late November of 2019 and by that Christmas, I had started to feel like my old self, so had a real good Christmas and New Year's. Then, I sadly had to start taking the dreaded AI (letrozole in my case) and have been blah and achy ever since. I so enjoyed those two months between the end or proton radiation and the start of the AI!

For those who can't do proton for whatever reason ($, geography, etc), one thing the proton radiologist told me was that "regular" radiation (photon) has improved greatly over the years and so the gap between the two types of radiation has gotten much closer re safety. You don't have to do a breath hold though with proton. It looks like your tumor is on your right side, so it might not be as important for you to do protons, due to that also. I think I saw where some insurance companies won't even cover it for right side, but it would be an individual thing. They absolutely use it for way more than what you were told. Because I went "out of the box" with this though, it kind of threw the other doctors off. Not in a bad or serious way, but they have their set system there as I described above, and even though the proton center was right there on the same campus, it was out of the ordinary for a breast cancer patient to go there and not to the regular radiation place. I noticed that none of them disapproved of my choice, but they just kind of stopped talking about it, or would just say, "Oh you went with the protons?!" kind of thing. They did not really seem to want to attach themselves to that choice of mine in a medical way. I assume it was because it was outside the "standard of care" that is their big deal these days.

Proton is apparently better for your heart and lungs, with less likelihood of trouble months or years later, but still has side effects of radiation dermatitis and fatigue. One woman who was getting her treatment at about the same time as me, had to take a break because of skin issues. Another was just like me and got a bit red, but she was able to keep working, even though it was real difficult for her. I would seriously urge you to use the search feature up above and put in the search term "proton". A few of us have posted about our experiences with proton radiation on other threads and those will show up if you search the boards, under the term "proton". As with all of this treatment, people's experiences varied and they are worth reading about.

macdebbie

Threetree, thanks so much for the info. Funny, I did a search earlier and didn't find much on here, but maybe I was looking in the wrong place. Even though there are places that are drivable from here - Jacksonville (although you are right about FL and COVID), and Atlanta, the problem is lodging. We can't afford to pay for 6 weeks of lodging somewhere.

So my only hope is to go back to MA and stay with my SIL for 6 weeks and drive back and forth to Boston every day, which is about an hour. I SO wish there was something here or at least within an hour drive.

ThreeTree

macdebbie - You're welcome for the link to the map. You know I am not very good (or really all that interested in) with a lot of the features on this website. I pretty much just read and post off and on, but I have found the "search" feature in the upper left hand corner of these pages to be useful. It's not the best search engine around by any means, but it can help me focus on a particular topic once in while, although I do have to wade through a lot that is not really relevant to what I'm interested in.

You might try looking at posts by "Santabarbarian" as she posted extensively about proton therapy and has been a real advocate for it. I posted a bit and so did a few others. I just checked the search feature and put in "proton" and stuff does come up, although I'll say "time flies!" I think it was about 4 or 5 pages in that I started to see the old posts by Santabarbarian. There are a lot of recent posts that show up, including yours, that mention proton therapy. I am no expert with things on this site and I'm not "techy" in general, so I can understand you looking and not really finding anything. There is a lot about proton therapy buried in these various threads, however, and admittedly it is a chore to track them down. I think you can use the search to track down Santabarbarian's posts too, by entering her screen name and I assume all of her posts will show up. I haven't tried that before.

Living with family for awhile sounds like it could be fine. When I got my proton radiation, I sometimes overheard others (standing next in line to them, etc.) talk about how they were from other states (Hawaii, Idaho, Alaska, etc at my center) and how their insurance paid for them to stay in hotels for all those weeks, depending on their situations and medical recommendations, so that's maybe an option too. I also met some other people at the center who were staying with relatives who lived closer than they did to the center (as in your Boston case) and they all seemed to be doing fine with that. One woman and her husband who live over on the Olympic Peninsula (a good 1-2 hours away from Seattle and requiring a ferry ride) were staying here in Seattle with their daughter, and they were loving it, because they got to see their grandchildren all the time. Another couple who lived out of state were staying with their adult child who lives in Yakima (clear on the other side of the mountains here), but were making the 2-3 hour drive to and from every day, but that worked out for them (that's a lot! The mountain passes get snowy and sometimes are closed in fall and winter.).

Also, I had said something earlier about your tumor being on the right side and maybe not as needing of protons as some others, but I also remember someone's post on here about that. In that case the person's father or father-in-law was a doctor and he said that he thought it was wrong to assume that the right sided tumors didn't necessarily need proton, rather than photon, because per his expertise, the heart is essentially located in the center of our chests and there is definitely a chance of heart damage for right sided tumors also. I think this man was a general practitioner of some kind and not any sort of radiation or oncology specialist, but he did have medical training and knew some anatomy.

Cowgirl13

Macdebbie, I'm absolutely speechless at what you have been through. I've never heard of the breast surgeon driving the onc and radiologist docs. Surgeons cut. Oncologists drive chemo and hormonals. Radiologists drive radiology. I hope today is better for you. Keep us posted.