Medical Onc followups necessary?

DianneS · 07-22-2009, 11:04 PM

I am wondering if my onc is nuts.

I want to transfer to another onc in a different city, for many reasons. The medical onc I have been seeing told me today that I don't need to be seen by a medical oncologist, even though I had an appt. with her for 3 month follow -ups. I am her2 positive. Is this typical?

Are any of you seeing just your family doc and not an onc? Seems to me I should continue to see an onc until probably------ forever.

What do you ladies think?

BonnieR · 07-22-2009, 11:18 PM

How could you not be seen by an oncologist if you are still receiving Herceptin?
I finished treatment a year ago and am still being seen every few months for lab work and check ups
And "forever" sounds about right to me too!

harrie · 07-22-2009, 11:46 PM

Diane, I see my medical oncologist every 6 months. I do blood tests every 6 months also. I see my OBGYN annually and see my internist annually also.

MJo · 07-23-2009, 06:33 AM

I go to the Helen Graham Cancer Center in Delaware. I saw my oncologist every 3 months for one year after treatment ended, now I see him every six months. Eventually I will see him once a year for the rest of my life. That's how he treats his patients. His nurse practicioner told me has survivors that have been coming to him once a year for 16 years.

Karen Wheel · 07-23-2009, 07:00 AM

Well - I know here, in Italy - my docs see me well, almost every week (still) and my chemo was finished 6 weeks ago.... I have Herceptin every 3 weeks - but they are following me closely.

My regular Oncologist (she is the 2nd in command under the head Prof here at the University Hospital) still looks me up almost every week - to see how I am and to check in with me...

And she is the one who said they will want to see me for a visit (once my therapy is finished) every 3 months.

I think (or thought) this was normal because of the aggressiveness of the Her-2 ... but I'm with you thinking your Oncologist might not be taking it very serious...

Again, I'm new to all of this - and I'm doing treatment in Italy - and in an "different" healthcare system --- where they don't get rewarded for seeing more patients --- they get paid to go to work - and actually --- I like this set up! I feel that I matter - the same as the next person - and that my doctors are really trying to do the best for me ...

Hope that helps - Karen

Karen Wheel · 07-23-2009, 07:02 AM

Thank you for that - coming back for 16 year comment --- were they all Her-2???

Thats the kind of stuff I really want to hear! Beats the standard "5 year survival rate" ....

:-) Karen

Adriana Mangus · 07-23-2009, 10:45 AM

Dear Dianne;

I believe you need to continue be seeing by the oncologist. The oncologist needs to do a blood test and see if herceptin is still working for you. In addition to other tests like the serum Elisa? Check the posts- from other members and you will see...

I see you live in Canada. Is this the way socialized medicine works? Don't be afraid to speak up your mind.

Keep us informed, please. Good luck.

Love,

Adriana

Yorkiegirl · 07-23-2009, 11:00 AM

I still see my Onc every 4 months. I get blood work done as well during that time. It has been 4 1/2 yrs for me now.

Cathya · 07-23-2009, 11:44 AM

I live in Canada and have only just for the first time not seen my oncologist every 2 to 3 months. I see him next month and that will make it 5 months. It's been going on to 5 years this November.... Yahoo!! I have been referred to many specialists during this period and I must say I have received fantastic treatment. My oncologist and his nurses listen to my questions and concerns and take them seriously. In Canada each province is a little different. I have heard very good things about BC though and agree that seeing another oncologist is likely in your best interests.

Best regards,

Cathy

Diane H · 07-23-2009, 11:51 AM

I think either your oncologist is confused or is not communicating well. This is is not the standard of care in Canada which by the way is very, very good. . So I'm thinking this is a mix up of some sort. You should definitely keep seeing an oncologist at least once a year, and very often your breast surgeon once a year also.

Mary Jo · 07-23-2009, 12:22 PM

I am 4 years NED and see my onc. every 6 months and have blood work at those visits. I see my internist every year (cholesterol/blood pressure/Vit. D levels checked) and anything else non cancer related. Also, I see my GYN. every year.

tricia keegan · 07-23-2009, 01:14 PM

I'm four years out and was seeing my onc six monthly up to recently but have now switched to once a year. I think I recall her saying when I was dx that I'd see her regularly up to five years when I'd be discharged by her unless there was a problem.
At the time I could never imagine being five years out so did'nt listen too well, but definatly think you need regular onc check ups.

Jean · 07-23-2009, 01:23 PM

It doesn't matter if you are HER2 postive or Her2 negaitve....an onc. will usually see his breast cancer patients every 3 months in the first year after treatment (early stage) Then continue
with visiting either every 4/ or 6 months depending on the patient. My dr. sees me every 4 months, while others he is seeing every 6 months....After 5 yrs.
he sees his patients 1 per yr.

Audrey · 07-23-2009, 03:22 PM

I saw my oncologist last month for my annual check-up (8 years since my diagnosis) and asked her how long I should continue my annual visits. She recommended 15 years, which sounded about right to me.

ElaineM · 07-23-2009, 03:28 PM

I think they are neccessary. Over here they start with once a month, then go to every 2-3 months, then every 5-6 months, then every 8-9 months, then every year for at least 5 years, more if neccessary.

Jean · 07-23-2009, 03:52 PM

Audrey,
"8 yrs" that sounds sooooo good.

hugs,
jean

chicagoetc · 07-23-2009, 06:25 PM

My oncologist told me I would be seeing either him or my surgeon every three months...for the first five years (then every six months). [Though I guess the rules could change in the meantime.] It sounds like there is no consistent standard for followup?

Melanie

caya · 07-23-2009, 07:23 PM

I also live in Ontario, and I saw my med. onc. every 4 months until I was 2 years out - when I was doing Herceptin I saw him every 3 weeks. Now that I am 2 years+ he will see me every 6 months for at least 5 years, probably longer, I haven't really discussed this with him.

I have been very pleased with my medical care during my BC journey, just have to focus on getting well.

all the best
caya

DianneS · 07-23-2009, 09:53 PM

That's what I think, too. The secretary to my onc called and said "Dr. -- " (Should I say who it is so no one else will get stuck with her?) said you don't need to see a medical oncologist..

I have the message saved on my answering machine, just in case. My hubby and I are blown away...it's scary. I always thought that British Columbia was rated very well when it came to breast cancer but if I take the advice of the BC Cancer Agency I'd probably die. I asked my family doctor today about not seeing a medical onc and he was surprised. He said of course I would want to continue seeing an onc as he isn't familiar with tests, etc that need to be done and cannot interpret them. Now I have to call back and do some more arguing. My onc has caused me more stress than anyone, by saying contradictory things - such as, did I want to continue doing taxotere and carboplatin or stop at 4.5 treatments? Originally she said 6 tx. I did one more treatment tho she wasn't advising me to do so. I feel I have to be my own advocate. This sucks because I don't know what I'm supposed to be advocating FOR. Now I am worried that I haven't had the proper tests so far after chemo. I am still doing Herceptin. Can I share what I've had done (if I can remember!)

~By onc: bloodwork one month after chemo (one done by my request in April)
Echocardiograms every 3 months...
~exam at 3 mos after chemo (June) to check surgery area, listen to lungs, palpate abdomen and check bloodwork
~given Arimidex (AI) at visit in June without being told I should have a bone density test first. I initiated that test which showed I am osteopenic. I had no time to ask onc questions about the AI since I didn't know I would be given the AI at that visit.
~AI stopped due to nausea (which has also stopped after AI discontinued). I was on it 3 weeks and quit last Sunday.

How long is it safe to not be on hormone therapy? I am only weakly ER positive, so....when I asked the onc in mid June why I wasn't given AI's before (I finished chemo in March 09) she said 'because I had been a little toxic'. ?? She never told me that at the June visit when she gave them to me. Does everyone wait 3 months after chemo to begin AI's, or is she just remiss?

The only doctors I am seeing are my family doctor and the lady doctor who administers my Herceptin (a sweetie, not the crazy onc). But she is an internist with a certificate for administering chemo and is not a cancer doctor. She has told me she isn't qualified to interpret tests or order them.

So - see why I am freaked out? I feel I am on this journey completely alone. I live in a remote area, no support groups and travel several hours just to get my Herceptin.

It is scary to me that a doctor supposedly so highly regarded, & has co-authored a best selling breast cancer book for this province can screw up this badly.

This disease is stressful enough without having to wonder about one's care. I must disagree in that I have found the bc experience in B.C. to be sub-optimal.

A few weeks ago via phone regarding taking the AI, she said 'you could recur at any time'. This totally freaked me out! All I had been hearing prior to this has been "You're cured....you have a good chance at a cure....blah blah...' I commented to her that breast cancer has no cure. See what I mean by her flip flops? When I confronted her she said 'I've always told you this'. So not true.

I hope I can get someone to help me soon.

caya · 07-24-2009, 06:47 AM

Dianne,

This onc. may have written a book, but it sounds like she is too busy to handle your case if she can't remember what she told you and is constantly flip-flopping. You have every right to continue to see a med. onc. for at least 5 years (especially since you on an AI - a family dr. should not be monitoring that). A number of gals on this site changed onc. for various issues, in my opinion you should request a change. You say you are in a remote area of BC, are you close at all to Vancouver or one of the bigger towns where there is a big cancer hospital? I have never heard of someone who isn't even finished treatment to be told she does not need to see a med. onc. anymore - Maybe the secretary is trying to reduce her workload...?

I started Tamoxifen 2 months after I finished chemo, 1 month after I had started Herceptin, so I wouldn't worry about that one extra month.

Yes, you do have to be proactive and your own advocate, but the med. onc. should be your guiding light, I know mine is.

all the best
caya