How often do you meet with your Oncologist?

[Rainykatie]

Greetings everyone. I'm here this evening wondering how often you (or your loved one) meets with their oncologist during active treatment?

I'm trying to gauge if my mom is getting appropriate, or typical care. A quick background- we are pretty new to this. She was diagnosed in mid-April with colon cancer with liver mets. Three days after diagnosis she had a port put in, and a week after that (as soon as insurance cleared), she started FOLFOX. She was really in a bad way at the time of diagnosis, unfortunately the cancer was found due to her symptoms of indigestion, nausea, and pain.

Now that the dust has settled, we are starting to wonder about the quality of the information we've been given. We met with the oncologist during her initial hospitalization at the time of diagnosis, where we were told that clinically the cancer appeared to be adenocarcinoma and had spread to her liver. We then had a follow up visit with her a week later, where this diagnosis was confirmed. At the time, we were pretty much deer in the headlights. She was prescribed a ton of medications (anti-nausea, appetite stim, painkillers) to deal with her symptoms and the chemo. The oncologist said that she could have 3-5 more years with treatment. My mom was barely able to eat and was so weak. I wondered and worried at her starting chemo. There were so many meds and they were so confusing, that we totally messed them up those first few weeks and didn't get straightened out until our next appointment, which was with a PA.

Anyway. Here we are 6 weeks or so later, and she's been through 3 rounds of FOLFOX now. The good news is after a rough spell and another hospitalization after the first treatment for a partial blockage (that cleared on its own), my mom is doing a lot better. She is now eating like a normal person, having regular bowel movements, and is feeling her energy returning. We even went out to dinner tonight! However, since we met with the oncologist before beginning treatment, she has appointments every 2 weeks with a PA who really doesn't seem able to answer questions about the plan. Apparently, she only meets with the oncologist every 2 months. Is that normal?

Now that we've had time to take all this in, we've starting doing research. No other treatment options were ever mentioned to us. The oncologist never even actually explained that she was stage 4. Obviously we figured this out by our own research and learning that when cancer has spread to another organ it is considered stage 4, but is it unusual for this not even to be mentioned to a patient? Also, I see lots of chatter on this forum about genetic stuff and many people's siggys have mention of genetic info. This was never mentioned to us. Is it standard to run these kind of tests at the beginning of treatment? I also see discussions about immunotherapy and other trials, also never mentioned.

My mom's partner and I are in a bit of disagreement. My mom's partner feels like we are not getting adequate care at this point. I feel like my mom was in a bit of a triage situation and the oncologist just acted really fast to start treatment. From poking around a bit on the internet, it seems that FOLFOX is kind of the go-to, best chance to knock back advanced colon cancer a bit. I feel like perhaps the oncologist just acted fast and that saw that at the time, we were pretty much unable to absorb much information as we were all still reeling from the shock and despair of the diagnosis. Also, my mom was so weak and having serious gastro problems, and at the time we started treatment there was talk of wondering if she would need surgery or not making the long term plan really uncertain.

But only getting a chance to talk to her every 2 months? Wondering if this is normal. And given the lack of info, if this were your mom would you be looking around for other options for treatment?

Thanks for any perspective you all can offer, and thanks for taking the time to listen. This is such a great community and I am happy to have found it! I have a close friend who had stage 3 colon cancer (and beat it!) a few years back who told me about this place.

[CRguy]

Hey Rainykatie my edited replies are in ColoRectalBlue

......
There were so many meds and they were so confusing, that we totally messed them up those first few weeks and didn't get straightened out until our next appointment, which was with a PA. That should all have been explained and set out for you

...... she has appointments every 2 weeks with a PA who really doesn't seem able to answer questions about the plan.
As someone with many years of medical experience I will not talk to "PA" folks ... if I have issues I will speak directly to my specialist
BUTT I can be a bit of an asshole, am aggressive for health care and "know" as much as they do, so I realize I may be a bit of a different "patient"

Apparently, she only meets with the oncologist every 2 months. Is that normal? during active treatments I was Ok with 6-8 week meetings WITH THE DOCTOR .. not any assistant ( although I did reverse engineer a few residents during my treatments !!! )

Now that we've had time to take all this in, we've starting doing research. No other treatment options were ever mentioned to us. The oncologist never even actually explained that she was stage 4. Obviously we figured this out by our own research and learning that when cancer has spread to another organ it is considered stage 4, but is it unusual for this not even to be mentioned to a patient?
Depends where you are and where she is treated. New treatments are always being explored and sometimes a patient needs what is not just what "we have always done" ... BUTT it all depends upon your Mom's EXACT situation

My mom's partner and I are in a bit of disagreement. My mom's partner feels like we are not getting adequate care at this point. I feel like my mom was in a bit of a triage situation and the oncologist just acted really fast to start treatment. From poking around a bit on the internet, it seems that FOLFOX is kind of the go-to, best chance to knock back advanced colon cancer a bit. I feel like perhaps the oncologist just acted fast and that saw that at the time, we were pretty much unable to absorb much information as we were all still reeling from the shock and despair of the diagnosis. Also, my mom was so weak and having serious gastro problems, and at the time we started treatment there was talk of wondering if she would need surgery or not making the long term plan really uncertain.

Are you or the "partner" certified Oncologists ?
My go to position is : get your experts, trust in them to do their jobs. IF your Mom needed ASAP chemo intervention then so be it.

But only getting a chance to talk to her every 2 months? Wondering if this is normal.Please see above comment for my exam frequency

And given the lack of info, if this were your mom would you be looking around for other options for treatment?
In addition to being my own Stage IVa patient, and a vet for 36+ years, I have been active caregiver to 2 geriatric patients, one of which was my father. Second opinions are ALWAYS on the table ... BUTT .... it is not up to you / us to decide ... it is UP TO THE PATIENT. If Mom is Ok with how things are going you need to listen to her. IF she is NOT then you need to advocate for her.

NO ... not an easy place to be in

BUTT if it were easy anybody could do it

I have found only the folks HERE who live and breathe this "life" as patient/advocate/caregiver are up to the task.

YES you found the best place NOBODY ever wants to be ... BUTT

WE ARE ALL here for you when you need us

Keep us in the loop or PM me anytime

Best wishes
CRguy

[Rainykatie]

Thanks, CRGuy!
I appreciate the fast response.
Good to hear that the every 2 months frequency is pretty normal.

I know what you mean when you say this is up to my mom and you're absolutely right. I hope that my phrasing of that question didn't come across that I was the sole decision maker here. I think I feel pressure though to guide her since my mom has been super overwhelmed and has looked to me for help with decisions about her care and treatment. She has had difficulty focusing during appointments and has commented that it "feels like everyone is talking about someone else besides me". She doesn't want to do any research or read anything, either, and has been relying on me and her partner to do that. I can't really blame her.

I tend to feel similarly to you about this- that I'm not an oncologist and I'm relieved that the one we have acted so fast. Yeah she didn't explain a whole lot, but she seems very highly regarded in the medical community. I have faith she knows what she is doing, but I definitely was curious as to whether we are getting "typical" interactions with our medical team.

I definitely could do without the PA however. It doesn't help that the PA assigned to my mom's Onc is very brusque and standoffish. I know that doesn't mean she's not competent, but it's hard to see someone so frequently with whom my mom definitely has a personality conflict with.

[Brearmstrong]

I get to meet with my oncologist before each infusion, so every two weeks. He is wonderful and always waits for me to give him my new list of questions and concerns. I hope you are able to get more personalized attention. This is all so hard and scary without that challenge!

Brenda

[betsydoglover]

When I was on Xelox plus Avastin, I saw my onc 10-14 days into the 3 week cycle - in other words the time when side effects would likely be the worst. The second time I was on Xeloda and Avastin - again the same schedule. When I continued on Avastin only, I saw her at every treatment. She did not actually think every time was necessary, but was concerned that insurance might not pay otherwise.

It probably makes a difference that my on does not have a PA - a PA should be good, but if you have concerns about him/her, then you should talk to your oncologist.

Take care,

[DebZ]

Yikes. Every two months? Before I became chemo-for-lifer, I saw oncologist every two weeks right before infusion. Now I see his NP and/or him every two weeks (they alternate). But if I wanted to see him only I could. Was there no mention of potential surgery for your mom?

[Rainykatie]

I get to meet with my oncologist before each infusion, so every two weeks. He is wonderful and always waits for me to give him my new list of questions and concerns. I hope you are able to get more personalized attention. This is all so hard and scary without that challenge!

Brenda

Brenda, that is so wonderful. I agree, it sounds like we are in need of more personalized attention. My mom keeps saying she feels like she is on a conveyor belt. Thank you for the reply!

[Rainykatie]

When I was on Xelox plus Avastin, I saw my onc 10-14 days into the 3 week cycle - in other words the time when side effects would likely be the worst. The second time I was on Xeloda and Avastin - again the same schedule. When I continued on Avastin only, I saw her at every treatment. She did not actually think every time was necessary, but was concerned that insurance might not pay otherwise.

It probably makes a difference that my on does not have a PA - a PA should be good, but if you have concerns about him/her, then you should talk to your oncologist.

Take care,

Thank you Betsy for the response. That makes perfect sense to meet right when side effects are the worst to try to manage symptoms. I wish we were able to meet with the onc more frequently too. Since we have really only met with her once at the beginning, we now have so many questions and no way to get them answered since the PA is less than helpful. We should bring this up at our next appointment with the oncologist. It seems unfortunate that it is now still a month away! We called to try to get in sooner with her, but were told she didn't have any availability until August.

[TrojanGirlie]

Hi,

I can relate to what you are experiencing. I am a caregiver to my husband with Stage 4 cancer who was diagnosed 1 year ago. At the beginning he was Stage 3 and I felt like we were very passive and trusting of our doctors. He progressed to Stage 4 during chemo and radiation and our oncologist (from Kaiser Permanente) told us he had never seen anything like that and he felt my husband's cancer was acting "weird". That really made us seek out a second opinion from UCLA medical center. The doctor there told us that our oncologist should be meeting with us every 2 weeks. Right now, we see our Kaiser oncologist about every 2-3 months and we usually have to schedule the appointment. We also started to request medical records from each appointment because we started to find that our Kaiser oncologist was not necessarily giving us the full details when we asked. For example, he failed to mention that new scans had shown tumor growth in a different region. We really liked our oncologist and I think in an effort to remain positive, he would sometimes sugarcoat information. After disagreeing with him about our chemo treatment after meeting with a UCLA oncologist who told us to attempt immunotherapy next after FOLFIRI+Erbitux failed, our oncologist went MIA and stopped returning our emails, phone calls, and even told us there was no reason for us to come into our scheduled appointment. My main advice is that you should ask lots of questions and your oncologist should be able to answer them. Our UCLA oncologist spends time answering whatever questions we have and will explain why a particular treatment will or won't work. We would switch their permanently but it is about 2.5 hours from home and not covered by our insurance, but we do not mind paying out of pocket for a consultation every once in a while. I have learned so much from all of the message board postings, but ultimately you have to be the biggest advocate or your family.

[Rainykatie]

Right now, we see our Kaiser oncologist about every 2-3 months and we usually have to schedule the appointment. We also started to request medical records from each appointment because we started to find that our Kaiser oncologist was not necessarily giving us the full details when we asked.
We really liked our oncologist and I think in an effort to remain positive, he would sometimes sugarcoat information. After disagreeing with him about our chemo treatment after meeting with a UCLA oncologist who told us to attempt immunotherapy next after FOLFIRI+Erbitux failed, our oncologist went MIA and stopped returning our emails, phone calls, and even told us there was no reason for us to come into our scheduled appointment.

Hi, thanks so much for the reply. It does seem like we are in a bit of a similar situation. Does your husband meet with a PA with more frequency? Seems like we are on the same plan- every 2-3 months with the oncologist. Does not seem like enough to me at Stage IV. Or any stage, for that matter.

I think we are in the same position with our oncologist trying to sugarcoat everything. I think we are intentionally being led to have a positive outlook. Which is fine, because I get that attitude can help here, but if we aren't getting the right info- that can also be a detriment!

That is really unfortunate about your oncologist going MIA after hearing of the UCLA consultation. Has your husband been able to start immunotherapy?

[TrojanGirlie]

We were finally able to start immunotherapy and chemotherapy combination today.

We never meet with a PA, only the oncologist and not very frequently. We can always call and make an appointment should we need it, but we won't be seen right away. We try to follow what the UCLA oncologist says and try to schedule an appointment with our Kaiser oncologist every 2-3 weeks, but he rarely has availability, but we try.

[michelle c]

When I was on chemo, I saw my oncologist before each treatment. He went over my bloods and asked about side affects etc.