Oncologists - How long do they follow a patient?

mawhinney

How long does an oncologist follow a patient that is not receiving active treatment? I am 6 years out from diagnosis and not receiving meds or active treatment so I'm wondering how long will I be followed.

Moochelle

Mine said for 5 years, then my PCP will see me every 6 months

farmerlucy

I'll see mine for five with the option of seeing her another five after that.

AmyQ

Hmm, good question. I wonder if that still applies for us Stage IV folks. 

Jazzygirl

Moochelle- I was told I will see mine for 5 years. I am 1 year past my treatment and will have my next follow up late summer. I get follow ups with my BS and oncologist every six months, and my MO see me mostly to manage the AI's and just check my overall health.

If you stay on any type of AIs for longer than 5 years, they may want to continue to see you as they worry about the side effects like osteoporosis.

I would ask your PCP what he/she thinks.

Morwenna

Wouldn't you at least have the option to stay on indefinitely as a stage IV patient??? 

edwards750

My ONC said 5 years. I thought I might have to stay on the Tamoxifen after 5 years but she said no reason to. I am 3 1/2 years out so another 1 1/2 to go. While I don't like the SEs of Tamoxifen it is kind of an additional insurance policy.

Diane

mawhinney

It has been 6 yrs since my surgery. Saw my onc yesterday. Even though I am not in active treatment or taking meds, she would like to continue seeing me once a year. My breast surgeon also wants to see me once a year so I am going to schedule  one appt. every 6 months. That way someone is looking me over every 6 months.

Racy

mawhinney, that sounds like an ideal solution!

Juliecc

I am grade 1, stage 1 on Tamoxifen.  My schedule is to alternate every 3 months with the Onc and breast surgeon for 2 years, then be seen by someone, probably the Onc, every 6 months for 3 years, then yearly for 5 years (until 2014).

When I see my Onc next week, I'm going to ask why I will have the follow ups with the surgeon for 2 years.  Wouldn't the Onc have more of an idea about signs of recurrence?  What does the breast surgeon do?

sundermom

I was seen every 3 months for the first 3 years, and that will change to every 4 months for years 4-5 and every 6 months for the rest of my life. I have blood work at every appointment and a PET scan every October.  The appointments give me much needed reassurance that everything is A-OK. 

KLJ

I haven't even heard that I need to see my BS again ever! Better check on that. Right now I am seeing my Oncologist every month. What has everyone been told about mammograms in the future. My daughter, who also had BC, was told never even though she had skin sparing, nipple sparing surgery. My oncologist didn't agree with that and said she should have them. He didn't really give me a straight answer on myself. We're still so new to working on my future treatment!

Juliecc

KLJ with a BMX I was told no more mammograms but to do self exams checking for lumps or changes.  Since our TEs are behind the muscle and we have little or no breast tissue, any local recurrences would be right under the skin.  

farmerlucy

KLJ - It is interesting what docs do in dif parts of the country. My onc wants yearly MRI. She said after year 5 maybe I could go to every other year.

SpecialK

I don't think most people continue to see their BS very often once past their post-op and maybe every six months for the first year. IMHO the BS is more qualified to physically examine than the med onc. The BS treats physically, MO systemically.

klj - if you have had a BMX you don't have enough breast tissue to look at with a mammogram. Generally, if you have a recurrence in the remaining breast tissue it is obvious because the implant reconstructed breast has the implant, a layer of muscle and then a layer of skin. Any lump is seen under the skin and you can see it. I am unaware of anyone with a MX/BMX who has had mammograms on post-surgical implant recon.

FireKracker

I'm 4 yrs.NED

I don't see my BS

I don't see my onco either

I do have regular blood work ,yearly mamo and OBGYN

I'm not takin any of the meds

So why bother

I'm sick of goin to drs.I am 73 and I want my QOL..

I watch what I eat,see a natural Dr.and chiropractor for other issues

odie16

I am almost three years out now and still see both my BS and MO yearly. Will see the BS yearly for five years and the MO every year for at least another ten since I have 8 1/2 more years of Tamoxifen. 

bandwoman1234

At my first consultation with my BS he said that he would see me for the rest of my life which I hope is a long time! I am about to finish rads this week and I know I will see my RO in a month. I am not sure of the long term plan with her. I will start on a drug for five years with my MO soon and again not sure about his follow up plan yet. I had just been thinking about this before I saw this post. I will see my RO on Monday for the last skin check I imagine and will ask her how the follow up plan works. My team is all in the same medical group so they do a lot of communicating with each other which gives me a certain level of comfort. We have electronic medical records where we can email anyone on our team of doctors as well which is really nice and convenient thing. I do suppose there are different philosophies among all the different doctors. Also if you are near a teaching hospital that might influence the best practice in the  areas surrounding that as well.

Anonymous

I see my oncologist every 4 to 6 months - almost 10 years since diagnosis. At stage III (5 lymph nodes), triple positive, I have a high risk of recurrence or mets, so he wants to keep close tabs. He orders blood work including tumor markers at every visit, does exam plus reminds me to get other cancer screening exams like colonoscopy & yearly skin cancer check by dermatologist (I'm high risk for skin cancer, too). No routine scans or MRIs unless I report issues or symptoms that need to be checked out, except bone density scans. At my most recent visit just this week, he said I need to start on osteoporosis meds, largely due to the Arimidex I am on (9 years now).  

I see my breast surgeon every year, soon after mammogram (had a lumpectomy, not mastectomy). For the first few years, I had breast MRIs & gamma-specific breast imaging, but that was stopped after five years. 

I saw the radiation oncologist once (I think) after I finished radiation, but no more visits needed unless I have problems in the irradiated area.

Blessings2011

I'll be three years out in September of this year.

I had a BMX with recon, but no chemo or rads. I did do a year on Arimidex, and six months on Femara before I stopped the drugs altogether.

I saw the MO every three months for the first year, every six months for years two and three, and will see her once a year for years four and five. 

I take no meds, I get no bloodwork done, and have saline implants so no MRIs for me. 

The MO usually includes a thorough physical exam of The Girls when I see her, but since she is so busy, she said that the new (absolutely adored) breast surgeon could do it, or my OB-GYN could do it. She just reminded me to do a self-check of the breast mound skin as SpecialK mentioned.

However, at Kaiser, I have access to ALL of my docs for the rest of my life if I want - as long as they don't retire!

coraleliz

My BS, who currently sees me every 6months, said it will go to once a year at some point in time. I don't think she's very happy with some of the care I'm getting from the MO. As SpecialK mention, the MO does a MUCH better exam. Although being thin & totally flat, it's not that hard & I probably could do it myself.

On one hand, I'm tired of going to doctors & want to move on. On the other hand, if a problem should arise, I want to be already connected.

If I should chose to stay on Tamoxifen or an AI for ten years, I guess I'll be seeing the MO(or maybe a different one) for 10years total.

jessica749

I would think the MO follows you as long as you are in active treatment - includes taking AI or T

This is why I believe  5 yrs is/ was standard.  However, one implication of longer usage (upping period of AI or T from 5 to 10 yrs) I would think means an increase in the number of years patients must be monitored and seen by MO from 5 to 10.  Can't just prescribe medicine wo monitoring you on it at least 1x a year...

I have compared notes with some fellow patients at my large cancer treatment center and while there appear to be basic rules it seems depending on your particular situation you may be seen more or less....Everyone has particulars within whatever general guidelines 

You can ask your MO how long she/he will follow you, and express your feelings about the answer. They may be open to discussion.  Mo can tell you why they want to continue seeing you even if your active treatment has ended. Of course if they prescribe medication you need to be seen or they won't renew your prescription!

BigT16

I thought it was odd when my BS told me I would be seeing him every year. Thanks to the responses here, I'm more comfortable knowing this is common practice.  Any body taking Tamoxifen, what are your side effects?  I just started Tamoxifen in April and my joints are sore and swollen.

Golden01

I see my MO every four months, will go to every six months sometime down the road. I am to see my BS once a year. He does an ultrasound to look for local recurrence. I am also supposed to see the plastic surgeon every six months to a year. I've skipped that one but will go this year as am coming up on three years when I am to have an MRI to check the implants. The MO has indicated no interest in ordering that for me. 

Tomboy

i guess i need to re- read the NCCN guidelines, because any CBE i have gotten, was just the briefest ones i have ever received anywhere, just the merest hint of a touch, and not often. i think only twice. and that was because i was concerned about lumps or bumps. the very best clinical exam i have ever gotten was 10 years or so ago, this one lady where i used to get my mammos' would do it before i got my mammo. But i don't remember what the guidelines said about that, either. It just seems to me that eventually, each doctor that follows us, would soon have a passel of people he already treated, plus a bunch of new people too. and then i begin to wonder, how thoroughly can he follow us with such  burden of people?

LRM216

I have reached 5 years this year, so my onc, at my last visit (every 6 months for the past year) will now see me yearly from this point on, unless of course I begin having any symptoms, etc.  Same with my breast surgeon - see will see me once a year now instead of every six months.  I know I will always be looking over my shoulder to see if it's catching up  - no matter how well the docs seem to think it's going.

Anonymous

I was dx stage I in 2005. I ultimately ended up with an onc being prescribed Tamoxifen then Aromasin for 5 years total. She cut me off so fast once that was done that I was nearly hit by the door behind me.  I'm sure it depends a LOT on dx.  I had no setbacks during those 5 years (except a heart murmur, which we checked out).  I got a blood test once to confirm menopause (since my chemo zapped my period INSTANTLY and we had to check so I could switch adjuvant meds).  I got one bone scan before starting...the Aromasin I think. I was really surprised to have never had any other scans. Seems like everyone here has bone and PET scans regardless of dx.  But she said "bye bye" and I was outta there. 

I NEVER saw my breast surgeon after she removed the drains.  I was surprised to see the post above me say that she still sees hers.  Some days I feel a bit left out in the cold (as I now try to navigate a finding of lung nodules).

jessica749

Whatnow, don't feel left out in the cold. I think what you describe is entirely normal, with many. Remember, what you get from the discussion board is a very skewed, unscientific opinion, I find!!! There's nothing wrong with that. Just remember, we all have so many different variables with our situations, AND we all see so many different kinds of doctors within the title "oncologist". I'm sure there is much leeway within the minimum standards of 'acceptable practice'.  There's little reason for an oncologist to continue to see you once treatment has ended. (But there's obviously  nothing wrong with any oncologist who for whatever reasons, continues to see a patient  past active treatment - taking AI or T. Frankly, I 'd love the "sense of security" it would give me to "check in" annually with my MO for the next 17 yrs….but I'm sure our "relationship" will end when my T use does. And why shouldn't it? That's a good thing, for the relationship to end with me 'healthy.")  How would an oncologist ever have room for new patients if they never said goodbye to their old 'cured' ones ?

Anonymous

Jessica, every onc is different in how often they see their patients.  Mine just recently moved out of state so I am handed off to another in her office.  I am more than 5 years out from dx and will probably see this new onc once a year until year 10.  I personally like the idea that we are followed after 5 years even if it is just to check how we're doing.  Also as long as we take AI's they most likely want to keep watch on that as well.  

BigT:  If you read the SE's of Tamoxifen, that may help to answer the joint issues.  I have done well on tamoxifen but you may ask your onc if you should be taking a baby aspirin daily as tamoxifen can raise your blood pressure or as my onc put it, makes one hypotensive.  Not a great SE.  

kdrez

I've seen my oncologist every three months for three years, every four months during this past forth year.  I anticipate that it will continue during the start of my fifth year this October.  I did see my surgeon every year the first three years.  Guess every oncologist is different.