How far out before one stops seeing her oncologist?

Yuge

Dear Members of this List,

Has anyone stopped seeing your oncologist and now only sees your family doctor or gynecologist for care? I wonder if anyone knows of any research on whether, or when, it is advisable to stop seeing an oncologist.

I was diagnosed with stage two estrogen positive breast cancer fourteen years ago.

Thank you for any light you can shed on this. 

Harley44

Sorry I can't help you.  I was dx'd with ER+/PR+ bc in March 2007, and when I saw my onc a couple of weeks ago, he told me that when I reach two years out from my tx, he will see me once a year.  Now I am going every six months, and I feel comfortable with that 6 month plan.  I don't know if I will feel comfortable with once a year, or even discontinuing seeing my onc. 

Maybe your onc can advise you on the follow up schedule.  Are you seeing your onc once a year at this point?

Hugs

Harley 

jfsnh

As far as I know, the onc follows you forever after BC, because mets can occure so far out.  Of course, the decision is always yours, but that is the recommendation.

otter

jfsnh, I think the recommendations aren't that clear-cut.  Where did you read (or hear) that we need to be followed by our oncologist "forever"?

otter 

Member_of_the_Club

I am assuming that eventually I will go to once a year but I will always see the oncologist.  Particularly since I will be on hormonals for a long time and will need to have them monitored.  Since I had a lumpectomy I will also see my surgeon every six months forever for a clinical exam.

mke

No, I don't know of any research on the subject. I first had BC in 1998 and after a couple years of 6 month appts went to yearly until I had my second BC in 2006 and a third in 2008. I suspect that I will be seeing an oncologist yearly for the rest of my life. My family doctor is happy with this, one less thing for her to worry about.



I get my BC care at a major university medical center and have taken part in several clinical trials so they may want to keep tabs on me for their database.

Harley44

Member,

WOW!  You see your surgeon every SIX months for a clinical exam?!   I had a bi-lateral mast., but I see my surgeon once a year for a clinical exam.  

My onc says that after I'm two years out from tx ( I guess that doesn't include the hormonal tx, but maybe it does), I will only need to see him once a year.  

I wonder why all the drs. have different plans for followup?

Harley

abbadoodles

My regimen:

No follow-ups with onc unless I have symptoms.  I'm not on any meds, including Tamoxifen or the AI's.  If I were, I would be followed because of that.

I had a six-month follow-up with bs, now I'm on once a year for 5 years.

BTW, I am not at a hick medical facility but a very well-respected one in New England with a dedicated breast center.

Although I know the frequency of follow-ups is dependent upon individual situations and in many instances is totally necessary, sometimes I think the frequency, in *some* cases, is "cover your butt" medicine designed to protect the practitioner from negligence lawsuits.  Just my jaded take on it, of course. 

caaclark

I am 3 years out and see my med.onc. every 4 months and my rad. onc. also every 4-6 months.  I don't think I HAVE to see the rad. onc. but I like as many people keeping tabs on me as possible.  The thought of going only once a year freaks me out!  I was stage III with pos. nodes so I would guess that is why they continue to see me frequently.

LorenaB

My aunt had stage 1 bc about 14 years ago, had lumpectomy + rads, no chemo (no positive nodes) and she still sees her oncologist once a year.  At least, I think it's the onco, it might be her surgeon? Anyway, my point is that she continues to be monitored even though she has been NED for 13+ years.

car

I've been following this thread w/interest because my first thought was OMG I might be cut off from my onc. I really like seeing him and like being monitored. He's up on the literature, presents at San Antonio, and is very proactive. He sent me downstairs for a CT scan when I showed up at a scheduled appt. w/two black eyes due to a self-inflicted concussion (I fell over my dog who was sleeping in the hallway when I was heading into the kitchen in the middle of the night in the dark w/no glasses--stupid, stupid) to rule out a subdural hematoma. In a sense, I feel like he's a high-tech primary and really understands my condition.

Member_of_the_Club

Well I still have both my breasts so that may be why I see my surgeon every six months instead of once.  I assume it is as much for a new primary -- for which I have an elevated risk -- than for a local recurrence.  I don't think I would agree to go once a year.  I have a lot of trouble doing self exams because of the scar tissue, I just don't know what is troubling and what is the new normal for me.

 Anyone else see their surgeon every six months? 

iodine

I was dx'd in Sept '02.  I saw my onc at Vandy Med ctr. every 6 mos for 2 years, had a scare, so saw him another year for 6 mos and then once a year till last spring when I was released.

I had seen a breast surgeon yearly for mammo f/u and finally decided that was a waste of my time and his when I get the results of the mammo before I leave, so I stopped going and have my pcp order the mammo and f/u with him yearly.

Of course I was able to schedule an appt with the onc if I had any problems.  Mostly I addressed any problems by telephone, thru his nurses, in between every 6 mos and then every 12 mos.

I have often felt that f/u is carried on too frequently and too long with oncs and esp. rad oncs, who really offer less than nothing at a f/u (at least with my dh, that was the case) and it's just extra co-pays, if you have ins. and some of us don't.

I didn't have stage 2 and declined chemo, so I may have a different outlook from most. 

Anonymous

Im two years out and still see my onco on a 6 month cycle. At first it was every 3 months and then at 18 months they changed to the 6 months...I asked my onco how long I would be monitored and he said that in a few years if I decide to not take further hormal treatment my monitoring would go to yearly.

I think alot of it depends on the oncologist's belief on how long to monitor and what each of our personal situations are.

Jule

BFidelis

I am 2 years out from lumpectomy (followed by AC-T, Herceptin & rads.)  I see my onc every 6 months.  She said @ 3 yrs. out, I may drop to once/year.  I was supposed to follow up with my surgeon, but I hate his office manager so much that when I found out I could 'follow up' with the onc instead, I jumped.  I told the onc & her nurse that I will perfom surgery on myself with a grapefruit spoon if necessary before I will EVER have anything to do with the surgeon who has a troll working as his office manager.  (She couldn't 'find the space' to give me to privately tell my husband the results of my bx; I got to give him the news in the stark hallway outside the surgeon's office.  Like there wasn't even a cleaning closet I could have used for less than 5 minutes you horse-faced goofball!.  Well, that and when I went for my 1 year f/u w/surgeon he asked how I was and when I answered "not bad for having just gotten through the worst year of my life" he treated me like I was CRAZY.  As in saying oh, come on now.  It wasn't that bad.  Are you seeing a psychiatrist?  I believe you need to be medicated.)

But I love my onc.  Only prob is now she got a new nurse and I DON'T like the nurse at all.  Seems kind of condescending and not very honest.  "Now you know that you need to let us know if your having any problems, because we won't be doing any 'regular' tests."  Lady, I KNOW what mets are; my mom died of this disease and you can see that in my chart if you looked. 

 Maybe at some point I'll just stop going all together.  Who the heck cares anyway?  From what I see on these boards, if you get mets, it's a crap shoot.  Some women live a very long time with them and others are gone in 4 weeks.  And just what would it mean to discover mets "early"?

Just my 2 cents.  Maybe I'll feel differently tomorrow.

Beth

Yuge

This discussion has been very helpful in answer to my question. So far it seems there are no clear cut standards for what determines for how long one is seen by an oncologist. Next time I talk with mine, I will ask her and post what I learn. 

 

My question was the first time I have ever posted on a breast cancer board, and I greatly appreciated reading people's thoughts. Thanks

wallycat

The dietitian that wrote her book is 18+ years out with her second cancer, and she still sees her onco once/year.

I just saw my onco today.....I'm almost 2 years out and he still wants to see me every 3 months.  He said he loves all the studies I bring with me (I also email him stuff I find that is interesting) and he enjoys hashing out studies/trains of thought.  As my insurance is covering all of this, I secretly think that if it is covered, why not continue to schedule the exams.  We had initially discussed a PET scan at the 2 year mark, and today, he said it is up to me and nothing really warrants it.

I'm very mixed with that....who WANTS to have the scan...so many false positives....but maybe he knows what he's doing.  

So I am at 3 months and my surgeon at 6 months. (I adore both of them).

I don't mind having the extra safety net.

Bugs

I'm almost 3 years out and my onc still sees me every 4 months.  I have a feeling he may put it to 6 months after the next visit.  My surgeon cut me loose after she took my port out.

car

Wallycat, I'm w/you. I got my first postop MRI in October. Mammos on my remaining breast are yearly (after a clinical exam by my BS) and MRIs every 2 years. I like the MRIs just to be sure that I don't get an ipsilateral recurrence (in my foob). It might be ridiculous since I have abdominal tissue under that skin and not breast tissue, and I have a really low risk of recurrence, but you never know.

Plus, I adore my onc. He's also setting up a molecular marker protocol which I should be entering next year. So we'll be adding a needle biopsy. This time it was caught early by a very vigilant PCP, and I don't want to take any chances and am covered by insurance that (at least right now) has been good.

Veryhopeful

I saw my med onc every six months for three years.  I stopped taking tamoxifen and stopped seeing her.  I was "supposed" to see the med onc and the rads onc once a year after 5 years.  I haven't seen anyone since the 3 year mark.  I determined it was a waste of time and money.  Nothing was ever done, only a quick breast exam, pretty worthless, since I learned to do a better one on myself - experience gained after having had so many of them.

The surgeon?  I saw him twice in the first year and then ended that relationship.

 I believe too many doctors are seen and it is just a repeat of the same stuff.  Rad onc's office called and sent letters every 6 months.  I finally sent them a letter and explained how I felt and they quit bothering me. 

I'm 5 years out and doing fine.  If anything "suspicious" comes up, I'll call someone.  Other than that, I don't believe constant scanning and testing is good for you, unless it is absolutely necessary.

 Good luck to all.

roseg

For my situation, where I had DCIS, the NCCN guidelines are an annual mammo and a physical breast exam every 6 months for 5 years.

Oncologists don't have a lock on breast exams and since I was on tamoxifen and needed to check-in with the GYN he said have him do the exam. It seemed reasonable to me. This year I'm seeing my Internist instead because I am due for a check-in over there. If I thought I had a problem I'd be on the phone and talk with my Oncologist for his recommendation about what to do. 

The NCCN guidelines are different depending on your initial stage and I think that's the thing to follow.

With 14 years and no problems I think that an annual mammo and breast exam with someone with MD after their name would suffice.

Anonymous

I'm 4 years out and see my oncologist every 6 months.  I see my PCP every 3 months for other health issues.

Mary

Dejaboo

This is interesting.  I think one should go with what they feel comfortable with.

I had a BLM in May.  I hate my Surgeons Nurse.  She is an absolute *^%.  I did not find out until 1 month later when my Dh mentioned to me that they wanted to see me back there.  They should have told me that or scheduled an appt for me.

I was told before my Surgery by my BS that I would see my PS after my BLM.  So that was the last word I had gotten.

I never went to see my Surgeon after my surgery.  Probably should have for one recheck.  But oh well.

I saw my Onco at 4 months & now will see her at 6 mo.  She does not do any tests or scans.  She does a Breast exam & asks you how you are doing..

After my 6 month check  up in April I wont plan on seeing her again unless I need to.  if I have any symptoms I will make an appt.

I will see my PCP every year.   And anyone else if I have problems.

My New PS likes to keep in touch with his patients.   So I will probably see him once a year....Just so he can ask me if I am happy with things.

Pam

Anonymous

When I see my Onc every 6 months he does blood work including CEA and Ca115-3.  I hate it.

Mary

vivre

I am not seeing any of them. It is too depressing for me to go near the cancer center and since I am not taking any meds and they are not supporting my choice to do this, I figure why bother? I will continue to get thermographs every six months because it does a good job of noticing any changes and I feel they are safe. I will also continue to get my blood levels tested to check my estrogen levels, by my wonderful chiro who has put me on the road to good health, with her solid advice about diet and nutrition. I feel so healthy, so why waste the money seeing doctors who will only lecture me for not taking their drugs?

Lynne3times

The first time I had BC w/lumpectomy and rads, I would go every 3 months, then six then at five years out I was done. Worked out fine and was closely examined by gyno and self breast exams until 13 years later when I got it again. same cancer other breast and pretty much same treatment and same sched w/the onc as before. As I was recently approaching the 5 year mark on 2nd BC, I asked my onc how often I would need to go. He said that he wanted to see me once a year indefinately as he wanted to be sure that I continued to get mammo's/MRI's. A few months after that conversation, whammo, BC for 3rd time, since I am having BLM on Jan 27th, I wonder how this changes everything, I am sure I will need to go for another 5 years for blood tests, etc.... There won't be any breasts to check, but hopefully the implant surgery will go well. Not really sure what to expect on my onc visits after BLM, should probably write this down as a question to ask him.

Harley44

Lynne

Hi.  So sorry you are having to go through this again!

I don't know what your dr. will suggest, but my surgeon told me that even though I had a blm, there is still breast tissue there, they can never get ALL the breast tissue, so I still need to be monitored for local recurrence.  This makes sense, since I know I want to make sure the chest wall stays free of bc...

Good luck!!  Please keep me posted on your progress.

Harley

BethNY

I think the protocol for follow up care depends on surgery, stage, and treatment.

For me, since having bilateral mastectomies, and not having implant reconstruction, I do not need to see my breast surgeon, unless I felt something. If I had implant reconstruction, I would have to get the two year MRI to check the device for silent leaks.

Because I took Herceptin, my oncologist made me see her every 6 weeks during the course of the year of herceptin, Then I graduated to the three month plan, then the six month plan. I am 4 and a half yrs from dx. She said in a year or two I will only see her once a year, but I will continue to see her yearly for the remainder of my life-- or until she stops practicing.

Obviously if I had a lumpectomy, I would still have 6 month to yearly mammo's, alternating with an Ultra sound or MRI.

I can understand being 14 years out, and not really feeling the need to see an onc anymore, especially if you have a far drive, or prefer your general family doc.  But IF you choose not to follow up yearly with your onc, you should have physicals once a yr with your regular doc, and have everything faxed over so your onc can keep your file up to date.

gsg

My onc and my breast surgeon have both told me I will need to see them for the rest of my life.  As long as I'm on Arimidex, my onc wants to see me every 6 months.  Breast surgeon is once a year.

 My primary care physician called me at home himself yesterday because I had asked for refills for asthma meds and he told me I had to schedule an appt to see him.  I complained to him that I'm already being followed by a lot of docs (also see a thyroid doc every 3 mos), but he insisted I see him by April.  He will only refill my prescriptions until then. I'm very burnt out on going to the doctor.  I guess I should schedule a pap with a gyne..it's been 2 years.  Aaaaaaargh.