How Many No Longer see their Oncos?

Here in BC, Canada, the protocol is to only see your onco if you have any problems.  My family Dr does my every 6 month check up & he does a way better job than the onco.  She called me a few days ago to tell me that my last markers & bone scan were fine & she said as far as she's concerned she doesn't want to see me again til I change over to AI in 4 more years.

It's been 7 years this month since my diagnosis and I haven't seen an oncologist since very shortly after my lumpectomy in March of 2004. I saw the first oncologist just twice and fired him on the 2nd visit. The next one I also saw twice - once when he suggested taking arimidex and ordered blood work to be sure I was really in menopause and the last time just to get the blood work results and refuse the arimidex. He told that since I wasn't actively undergoing any kind of cancer treatment, then there was really no need for me to continue seeing him and that I should just continue on seeing my PCP as needed and to return to him only if I needed his services in the future. That was music to my ears and made perfect sense to me. I just get yearly mammograms and that's it.

Susan, he wants a chest MRI??

Probably the most sensible approach, IMO. Stops overtreatment but keeps an eagle eye.

Hi, Dejaboo--

First:  I see my breast surgeon once a year -- she orders and interprets my mammograms and does a really thorough breast exam.  (I had a left mast/SNB with no recon.)  My surgeon is also the person who writes orders for breast forms and mastectomy bras, and watches my left side to see if my "Stage 0" LE is flaring again.

But, I also see my med onco regularly.  The schedule with her has been twice a year, timed so that I would see either her or my surgeon every 4 months.  My onco does a really thorough breast exam too, using a different pattern than the one my surgeon uses.  She also asks me different questions and we talk about different issues.  Oh, and because I'm on Arimidex, she does blood work once a year, and orders and discusses my DEXA bone density scans.

I was about 18 months into all this when my onco said I could back off on the frequency of recheck appointments so I was alternating between seeing her and seeing my surgeon at 6-month intervals. (They're at the same center and they can both access my records.)  I asked my onco how long she would continue to see me, and she said, "At least 5 years.  I need to follow you as long as I have you on something that could do you harm."  She meant the Arimidex, of course.

Last time I saw my onco (last November), I asked her about long-term followup.  The Breast Health Clinic at my cancer center has developed a "Cancer Survivors" service that provides continuing followup after 5 years.   I was wondering if that's where I should go when I reach that point.

My onco's answer surprised me.  She said she didn't think the "Cancer Survivors" service was all that worthwhile.  She said what I really needed was a good internist (internal medicine specialist) who would follow my blood pressure, cholesterol, glucose, etc.  I don't recall exactly how she stated it, but what she said made me understand that I needed to be as vigilant about age-specific things like heart disease and diabetes as I currently am about BC recurrence.

I like my PCP.  He has been following my cholesterol, BP, thyroid function, etc., for 25 years.  He never has done a breast exam on me, and I don't think I want to start with that.  And, I'm also not ready to go to him for my cancer follow-up.  Honestly, he's gone over to the dark side.  (Sorry.)  He thinks I should be on Evista, not Arimidex, even though Evista is not approved for women who've already had BC.  He believes in "hormone balancing", "good" vs. "bad" estrogen, compounding hormones for aging women and men, ... all that stuff.  He knows I'm skeptical and we still get along fine.

So.... the long answer to your short question (sorry again) is that I'll see my onco for at least 2-1/2 more years, unless my insurance company says I can't.

otter

This has me concerned for when I go off Femara if I will get dumped by my Onc.  I do not have any faith in the Ob/GYn who knew I had a hormone imbalance and continued to give me OC pills into my mid 40's.  My PC is clueless about vitamin D levels.  The last few times I've gone to the Ob/Gyn there was no breast exam done because they figured that is being done by my Onc --- who does not do a very good one...... 

That's why I love my PCP, she's very thorough and takes her time with all her patients.  She is much more thorough than my other docs.  She also orders all my blood work and does all my physicals.

Bren

lindasa (I love how we all move from thread to thread together - it's so nice to see my friends popping up everywhere), I, too, felt as though my ex-PCP was in a mad rush every time I saw him. I will only get a new one if I have to. I had implants put in so I think I need an MRI every two years, but I feel comfortable working with my very handsome and wonderful PS on that.

Since I had a BMX, the breast exam on me is cursory, but my onc does it. He also feels my armpits and neck.

I don't think I would ever turn my cancer follow-up care to a PCP. I am one who feels more comfortable with specialists and it may be because of my health profile: I have dealt with one congenital disease that I almost didn't survive as a child and required two major surgeries to vital organs, and I have dealt with two more incurable diseases as an adult, one of which is chronic (although the symptoms are not). BUT, I never, ever get: major flus, infections, constipation, weird pains....anything. I never get ill. Ever. Unless it's deadly, of course.

Deja -

We are on  about the same path - this year, my med onc went into semi-retirement and changed jobs - I have decided not to see anyone else. This past year, she gave me the option of trying Femara - I did, for a month, and was stunned at how much of the "arthritis" pain I was experiencing was due to tamoxifen, and that it was possible to have continuous hot flashes on an AI. So, of my 3 choices - tamox, AI, and nothing - I chose nothing. Which actually surprised me; I was so sure I would do the 5 years, no matter what

I changed PCPs after diagnosis - she was so sure it wasn't cancer, and so incredibly unsupportive throughout the whole wait for getting in for a mammo - and I think I like the new one.

I have standards now; and if I ever need another onc (God forbid!) I know what to look for. But I feel pretty comfortable with my membership in the it-aint-a-gonna-come-back club. 

Hopefully, regular mammos will let me know what's going on. And I have a great orthopedist, who has already told me that if I ever get symptomatic again (last time, it was bursitis), she will gladly order a bone scan.

So, I'm letting the oncologists treat the people who need them, and I am back in my old life, although I do drop in occasionally, if only to see that y'all are okay.

Good luck!

My onc switched me to six-month appts. pretty quickly. She says I'm at pretty low risk of recurrence, plus she likes the monitoring I've been getting from my other docs. My new gyn is doing a pretty good job, and so is my PCP. (PCP is an internist who tests the hell out of me; at first it bugs me, then I thought, well, at least he's pretty thorough. And he never blows anything off.)

A woman I know with a diagnosis similar to mine says that if all goes well I'll be switched to yearly onc appts., and the day may come when they tell me not to come back in at all. Of course, she's close to eighty, and her onc told her that at this point, the cancer is not really an issue.

btw, I agree with what everybody's saying about going to the onc's office: sad and stressful.