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paml
paml Member Posts: 81

Hi Everyone!

I finished chemo and rads in July and recently went for my 3 month checkup August then again in the early part of January. My oncologist did the usual blood test, talked to me for a few minutes and said, "Everything looks good. Ill see you in 6 months."  I said, "Are you sure?" I have a high chance of recurrence plus I have Stage 3 cancer!" He did not even check my mastectomy scar. His reply was. " Yes, your chance of survival is just as good as anyone else's. When I got home, I thought about this and became extremely angry! Isn't everyone suppose to have a 3 months checkup at least for the first 2 years when the chance of recurrence is the greatest? I feel like I have been ignored once again! Would you guys pick another oncologist if you were me? Please let me know what you think? I think 6 months is too long to wait!

thanks for you advice!

Comments

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited February 2010

    You're probably not going to like the answers you get so I'll start you off.

    ER+/PR+ and HER2- recurrence rates increase after 5 years, not within the first 5.

    Nothing that happens in 3 months can't wait until 6 months.

    If you have a pain or symptom that continues for more than 2 weeks, then you make an appointment.

    Finding mets now or later does not increase or decrease your mortality. It would only treat the symptoms sooner, that's all.

    Don't borrow trouble...you can't live month to month worrying about a recurrence or cancer will win over your life.

    We have very similar time frames and I have just learned to "move on". God I hate that term! But, I don't ever forget that I have/had cancer, I just don't worry the same way I used to.

    We are ALL just one diagnosis away from Stage IV. It doesn't matter what stage you are now. That was just for your treatment plan.

    Best of luck and gentle hugs....

  • apple
    apple Member Posts: 7,799
    edited February 2010

    Yes, your chance of survival is just as good as anyone else's.

    i think that's pretty encouraging... and is pretty much what my onc told me.  Of course, if YOU note abnormality you have the option of contacting your onc.

    my 2nd 3 month checkup is coming up.. and then I was told we'd check every 6 months. 

    of course you have the option of selecting a different onc.. but he got you this far... that's good.

    many many many stage III women are celebrating their anniversaries.  good luck

  • jinnypel
    jinnypel Member Posts: 73
    edited February 2010

    I think you'll find that your follow up schedule is normal practice as I had two 3 month check ups, seems you've had the same.  And I've spoken to a couple of other ladies who went to my same surgeon and they all had 2 - 3 mnth check ups and then went onto 6 months. 

    If you find something suspecious of course contact your docs.

  • ElaineD
    ElaineD Member Posts: 2,265
    edited February 2010

    It sounds absolutely fine. You need to start moving forwards now, and not dwelling on the possibilty of recurrence. To change onc now seems conterproductive-your treatment is over-and you've got through it. I don't think I've ever heard of anyome having 3 monthly checks for 2 years, so rest assured, he is not ignoring you.

  • everyminute
    everyminute Member Posts: 1,805
    edited February 2010

    I go every 3 months and wonder why - the doc does blood work but even that is not standard of care.  They tell me if I have an ache or pain to let them know, otherwise live my life.  I am not sure what they could detect in that appt but I go cuz they tell me to.

    I do get my vit d levels checked - and supplement to get/keep them high

    and I get zometa every 6 months

    and take my tamoxifen

  • KerryMac
    KerryMac Member Posts: 3,529
    edited February 2010

    My MIL is very happy that I get checked every 3 months - "at least they are keeping a close eye on you" she says. And, I think - well, what exactly do they do?? My BS gives me a feel, says all is OK, which I knew anyhow, as I would have been feeling myself up for the previous week. My Onc asks how I am doing, says all looks OK, hows the arimidex...... I don't know, I think if I got a reoccurance, I would know before anyone else.

    BTW, reoccurance rates don't rise after 5 years - if your are ER+, yiour chance of reoccurance stays higher relative to ER-'s - I think the reoccurance rate after 5 years for Stage 3 is about 13%, for Stage 2 it is about 11%. 

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited February 2010

    I went every 3 months in the first year, every 4 months in the second year, and then every 6 months.  But my onc always looks at my scar and feels my armpit, collarbone and neck.  Blood work once a year.

    Do you still see your breast surgeon?  I still see mine every 6 months as well.  If you do too, you could "stagger" the appointments so you alternate seeing BS and onc every 3 months (my onc suggested this to me).

  • Celtic_Spirit
    Celtic_Spirit Member Posts: 748
    edited February 2010

    I see my onc every six months, and I'm just shy of hitting my two-year mark.

  • Bugs
    Bugs Member Posts: 1,719
    edited February 2010

    I think alot of the 3 month checkup schedule is the comfort level of the patient.  I did go every 3 months for the first 2 years then switched to 4 months for a year. I wasn't quite comfortable going to a 6 month schedule and asked if we could do "one more 4 month" and he was just fine with it. I've been at the 6 month schedule now for a year and I love it.

    You are the customer/patient.  If you are not comfortable with a 6 month schedule yet, ask if you can go for 4 or 5.  

  • lexislove
    lexislove Member Posts: 2,645
    edited February 2010

    Kerry, Im glad you cleared up the whole ER+ higher chance of recurrence AFTER 5 yrs thing.

    I also thought this. Woman take their anti hormones for 5 yrs then most....stop. So of course, that would put us at an increase. Well? No.

    I did ask my onc this, he may not be some high n mighty at some BIG cancer centre, but...hes excellent. Up to date, young and agressive with his treatment options.

    You should have seen the look on his face!  Undecided. He had been impressed at my educating myself about MY situation, but not about the recurence thing after  5yrs. His response, " Ummm, its actually the opposite."....

  • Mamita49
    Mamita49 Member Posts: 538
    edited February 2010

    I kinda believe its coming back or not. O% or 100%.

    My doc said, it COULD come back even after 20 years, BUT also not. The whole thing about 5 years, or 2 years or 10 years is not in his discussion with me.

    I believe right now that i am going to be fine, thats what everybody on my team says. I am doing great,,,,,,,,,,

    And it looks to me that way , thats what counts, thats what what it is.......

    I would not dwell on the 2,   5 or 10 year thing. 

    Best

    Carol 

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited February 2010

    That 5-year-increase comment actually came from another thread from months ago. Those of us who are HER- and Herceptin does us no good, tend to get an increase after the 5 year mark. But I like the way Kerry said it "relative", that is such a nicer way to think of it!

    Another spin, is that tracking since Herceptin started has really changed the numbers for HER+ which used to be a bad thing....so, relative to what they used to have, it's better!

    Did any of that make sense? Undecided

    See what happens when we just repeat (and believe) what someone else has told us????

  • Mamita49
    Mamita49 Member Posts: 538
    edited February 2010

    BTW' I see a doc from my team every 3 months for at least the next 2 years.

    I just rotate, Febr. the BS, May the radiat. onc, Aug the onc etc.

    Anyhow, they have a great communication between each other, and one knows about the work of the other.

    My breast surge. send me to see a dermatologist ( had a mole on my beely, was ok ) my rads. onc send me to a rheumatologist, ( Arthritis) my onc does the blood work....

    Its like almost every Friday when I dont work I have to go downtown, but the way I make it, its almost like a field trip, restaurand, window shopping, I see the whole thing positive..... 

  • diana50
    diana50 Member Posts: 2,134
    edited February 2010

    well, i am coming up 3 years past the 5 year mark...(smile)  for me; i just either am still clear or i am not. so far...still NED.

    since i was in a clincial trial; i was seen every 3 months for 2 years...that was part of the protocol for the trial.  then...down to 4-5...and the last few years....6 months.  i get blood work (liver enzymes.CBC, basic chemistries and tumor marker CA27.29. that is it. scans: breast..either mammo, US, or breast MRI.(very dense breast tissue)

    remember: you can ALWAYS call and make an appt in between scheduled appts. i only see my oncologist and surgeon...(surgeon only 1x a year)

    diana

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