Follow Up Plans

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chinablue
chinablue Member Posts: 545

I am in the middle of radiation treatments after chemo (4xAC, 12xT) and mx.  I was wondering what kind of follow up plans you have with your onc. and/or bs. 

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  • LRM216
    LRM216 Member Posts: 2,115
    edited March 2010

    Umm - not so much!  I see my onc every three months for complete blood work and tumor markers.  Although she doesn't find them terribly reliable, she does look for consistency with the results.  Since they are have been under 10 since my chemo ended, and remain so, should they shoot up to 40,50, or higher, then she would become suspicious and resort to more testing and scans.  Otherwise, any pain someplace for 2 weeks or more, she will consider a "symptom" and test for, otherwise, no scans unless syptomatic. 

    Breast Surgeon is every 6 months for mammo of cancer breast and good breast - and an ultra sound after the mammo.  This goes on I believe for 5 years.  From what I have discussed and read from others, this seems to be about the norm.  Hope this helps.

    Linda 

  • chinablue
    chinablue Member Posts: 545
    edited March 2010

    What kind of blood work? 

  • angelsabove
    angelsabove Member Posts: 363
    edited March 2010

    Hey Chinablue......I am 4.5 weeks post 32 radiation treatments. I did double mastectomy first. Then did 12 weekly Taxol and 4 tri-weekly FAC. I then went off to radiation. (32 treatments)...I will see my Oncologist on this coming Monday. I was told I will see her once every 3 months for check up and blood work. They say the blood work is tumor markers.....Unsure what that really means. My Onc. said she would scan me every 6 months but she did say that is not standard protocol. I saw my breast surgeon after chemo was done for 6 month follow up checkup. She said no need to see me anymore unless I felt there was some sort of a problem.....Well......I have no boobs maybe that is why that is. I would love to share with you more. I will pm u later....I gotta run n get my kiddos. By the way I was 36 at dx.....

    May God Bless Us ALL 

  • angelsabove
    angelsabove Member Posts: 363
    edited March 2010

    Oh yea .....confused how do they stage this stuff. I was told stage IIB....Am I really IIIA????? Been meaning to ask that just havent got around to it......

  • chinablue
    chinablue Member Posts: 545
    edited March 2010

    What are tumor markers?  Is it a reliable test?

  • angelsabove
    angelsabove Member Posts: 363
    edited March 2010

    I am bumping this because I also do not understand tumor markers.....

  • PauldingMom
    PauldingMom Member Posts: 927
    edited March 2010

    No tumor markers here either that I am aware off. I go and see one of my 4 docs. about every other month. This month I go see the rads. doc. then in May I see Onc. and GP. 

  • chinablue
    chinablue Member Posts: 545
    edited April 2010

    Is anyone getting regular scans (PET, CT, MRI, etc.) as follow up?

  • chinablue
    chinablue Member Posts: 545
    edited April 2010

    Bumping this up...

    Is anyone getting regular scans (PET, CT, MRI) as follow up?  What happens at your follow up check ups?  Does the onc just ask how you are doing? 

  • Titan
    Titan Member Posts: 2,956
    edited April 2010

    I'm 8 months from chemo..no scans yet for me though I could have one if I asked for one...will see the onc every 3 months for two years, the bs every 6 mos..not sure how long for that..will have a mammogram every 6 months for I think maybe 3 years.

    I have had my D3 level checked twice.

    I'm pretty much given a physical exam plus a breast exam.  And we do talk...about how I feel, what vitamins I'm taking..what I can do to help myself out...any kind of concerns I may have.

    I try to behave and sit there and talk but actually I just want to run out of the place!

  • chumfry
    chumfry Member Posts: 642
    edited April 2010

    I don't know if this is still current, but in 2005 my docs basically said routine full-body scans post-treatment turn up so many false positives that the anxiety to the patient is not worth the small benefit of maybe finding something real.

    In general, it seems like they wait for a symptom to appear and then they test it. Like if you have a bunch of weird new headaches, they'd MRI your brain. Or if you have lung symptoms, you'd get a chest X-ray. But they don't typically just scan your whole body, looking for trouble.

    For the first few years post-treatment, I saw my onc every three months. She'd do a very thorough physical exam, checking both breasts and feeling my lymph nodes and liver. She'd also ask me how I was feeling and if anything weird had cropped up.

    I'd also have a mammogram on my remaining breast every six months. And it was that mammogram that found my second tumor in my "good" breast in 2007. Now I've had two mastectomies, with implant reconstruction, and I'm doing really well.

    I've "graduated" to seeing the onc every six months and it will probably go to annual visits soon. Of course, if anything weird crops up, I can come in earlier than that. The blood work I get generally just checks my liver and kidney function (I think). Maybe that would help show mets or maybe they're monitoring me for long-term damage from chemo.

    I'm certain I've never been tested for tumor markers. That seems like something reserved for ladies who have mets. But I'm not sure about that. I get my treatment at the Mayo Clinic, so I'd think they'd be pretty up to date on the protocol to follow after treatment.

    I know a lot of women get anxious or depressed at the end of their treatment because they want to keep fighting. But once you've completed your regimen of treatment, it's time to grieve your losses and start healing.

    Recovering from treatment will take longer than you think, probably at least six months. So try not to get too impatient and cut yourself some slack. You've just been through a war, and the battleground was your body. Healing is hard work, too.

    --CindyMN

  • Titan
    Titan Member Posts: 2,956
    edited April 2010

    Thanks Cindy for your post!  I had tears in my eyes!

    I get freaked out enough just going to have a mammogram and to see the onc and Bs...I just can't imagine the stress a scheduled scan would have on me..

    At least since we are "special" now we get the results of the mammogram right away...instead of having to wait..that helps a bunch.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
  • chumfry
    chumfry Member Posts: 642
    edited April 2010

    I just now realized that today is my three-year anniversary of being diagnosed with BC the second time. This fall will mark five years for my first tumor. I don't want to say I'm "confident" about my future, because that might jinx things. :D  But I'm starting to think that I might actually live long enough to use my retirement benefits. (I turn 52 in June.) LOL

    --CindyMN 

  • gcpommom
    gcpommom Member Posts: 883
    edited April 2010

    I am 10 months post chemo, and have seen my onc once, 3 months after finishing chemo.  I was supposed to be seen every 3 months, but at that appointment, he changed to to every 6 months.  Not sure why he went from every 3 to every 6 months after only one visit, but it made me nervous.  He also doesn't believe in unnecessary scans, but would give me one if I really wanted it.  I see him next month, and will probably ask for a scan then, I figure one or two scans a year can't hurt.  He doesn't do tumor markers either...or they just don't tell me their doing them??

  • ShondaE
    ShondaE Member Posts: 48
    edited April 2010

    I am almost 1 year out from my last chemo treatment.  I see my onc every 3 months for the whole blood work gammett.  She has yet to do any other scans although after my last chemo treatment she did order a PET scan. 

    I have finished with my reconstruction and have my new implants now so I will probably ask her to do at least a US just to check everything.

    Shonda 

  • tibet
    tibet Member Posts: 545
    edited April 2010

    Cindy

    Congrates to your 3 yrs out . We need more sucess stories here....like yours.

  • Luah
    Luah Member Posts: 1,541
    edited April 2010

    I asked my onc this very question today.  At my cancer care centre, I will get follow-up exams with my onc every 4 months (for a year I think), then every six months, then once per year. Mammos once per year.  As my cancer wasn't detectable by mammo, I will be scheduled for yearly MRIs too.  

    CT and other scans will only be done if I have symptoms.  She said all the evidence shows that scans do not alter outcomes... although as I pointed out, this runs counter to what we're always preached about BC  i.e. get your annual mammos because early detection leads to better outcomes... wouldn't the same be true of mets to liver or brain or bone?  All the same, I'd be concerned about the rads involved in a bunch of CTs.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
  • Luah
    Luah Member Posts: 1,541
    edited April 2010
    Hahaha hhfheidi!  What I mean is: if we say (as we do) that screening mammos should be routinely done for all women who might have cancer in the boobs, why do we not say we should do routine organ screening for women who, because of a history of invasive BC, might get mets? (usual spots for trip neg mets being liver, brain and lungs). It seems intuitive that the earlier the diagnosis the better the outcome. 
  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
  • Luah
    Luah Member Posts: 1,541
    edited April 2010

    hhfheidi: I totally agree, and I'm not anxious to have a bunch of scans either.  In fact, I'm kinda glad the studies show what they do, I just have to come to terms with the inherent contradiction.  (or maybe it's not contradictory - after all, there's that recent research showing routine mammos aren't justified by outcomes, but that's another whole can of worms!)   

  • 123Donna
    123Donna Member Posts: 49
    edited April 2010

    Here's a list of possible questions you may want to ask your onc.

    After Treatment Questions to Ask Your Oncologist
    1. How often are my follow up visits?
    2. Will you do a full panel blood work at each visit?
    3. Will you do tumor marker tests? If so, which ones? E.g, CA 15.3, CA27.29 and CEA
    4. Will you test my Thyroid level?
    5. Will you test my Glucose level?
    6. Will you test my Vitamin D3 level?
    7. Will you test my Cholesterol level?
    8. If you had a lumpectomy, how often will you get a mammogram? Ultrasound? MRI?
    9. If you had a mastectomy, can I get a routine MRI?
    10. Will you order scans? If so, what kind, eg. PET or CT and how often?
    11. Will you order a bone density scan? If so, how long after treatment? Will this be yearly?
    12. Are there any clinical trials I should consider to help prevent recurrence?
    13. Would you recommend a bisphosphonate (e.g. Zometa) for me? Are there any clinical trials I should consider, eg. S0307?
    14. Would you recommend me taking a daily baby aspirin?
    15. Are there any supplements you recommend? Any that can prevent recurrent, e.g., turmeric?
    16. For neuropathy, is there anything to help me? What about over the counter supplements or prescriptions?
    17. Are there any diet recommendations, eg. Anti-inflammation or Mediterranean?
    18. What are your exercise recommendations?
    19. Any other lifestyle changes to help prevent recurrence?
    20. What do I look out for regarding warning signs, eg, for brain, lung and liver? Should I wait a couple of weeks to see if the symptoms persist or can I call immediately?
     

  • Luah
    Luah Member Posts: 1,541
    edited April 2010

    123Donna:  Great questions - wish I had them before my appointment yesterday!  I got the answers to the main ones: follow-up exams with onc every 4 months (includes bloodwork), yearly mammos. No scans unless I show symptoms.  As my cancer wasn't caught on a mammo, I will have a yearly MRI too. I forgot to ask her to add a Vit D test on my blood next week - will do so. I'll ask about clinical trials and aspirin thing too.  I'm going for nutrition counselling next week.  Thanks so much! 

  • retrievermom
    retrievermom Member Posts: 522
    edited April 2010

    I recently finished my four rounds of TC, and have asked about follow-up care with my onc the last couple of visits.  (I'll be starting rads soon)  My onc, like several of yours, does not do routine scans for the reasons hhfheidi mentioned.  I was puzzled, but went to the tnf website and saw their explanation matched.  My onc will be following me every 3 mos, but it's symptomology that will drive follow-up.  I am interested in the vit D3 stuff, and will follow up with him on that next visit.  I like your list of questions, 123Donna.

    I get freaked out periodically.  Today's my birthday, and I'm thinking about life expectancy.  Thinking I will go out and buy a low-fat cookbook. And go for a walk.  Then Ikea Smile

  • RaiderDee
    RaiderDee Member Posts: 150
    edited April 2010
    Happy birthday Retrievermom!  My onc said pretty much the same thing to me on my last follow up appointment after my final chemo.  He told me to walk away knowing I did everything I could medically to keep the cancer from coming back.  I am following a strict diet of no sugar, no soda, low fat and lots of fruit and veggies.  I have also stepped up my exercise and I've lost 12 pounds in the month since chemo ended.  I'm also drinking green tea every day and taking D3 supplements as well as a few others.  It's hard but hopefully worth it in the end.  It gives me a sense of control now that treatment is over.  At least I feel like I'm doing something instead of sitting around waiting and worrying about it coming back.  I still do worry though.  I guess we always will to some degree.         
  • retrievermom
    retrievermom Member Posts: 522
    edited April 2010
    Thanks, 2new.  I'm encouraged to hear you've been able to lose weight in just a month.  I like your ideas.  Did you have a test run for the vit D levels, or just start taking D3 on your own?  I used to be a Coke a day person, but the taste was awful while on chemo, so it was easy to give up.  I told my DH not to make me a b'day cake, since it's just the 2 of us to eat one.
  • RaiderDee
    RaiderDee Member Posts: 150
    edited April 2010

    My Onc is very old-school.  He kind of believes in the D3 thing but not really.  He didn't feel it was necessary to check my levels.  He said I was free to use any supplements I want so I'm taking D3 & Bromelain everyday.  I had 6 months of chemo and steroids.  I was so bloated by the time I was done that I thought I would explode.  I'm sure a lot of that 12 pounds was water weight.  I also gained weight because I knew that I was going to start this diet as soon as chemo was done so I let myself eat anything I felt like eating all during chemo.  I walk a couple of miles every night.  I workout on an elliptical machine and lift weights in the morning.  I also play softball every Sunday night with a team full of my friends.  We've been playing together for 7 or 8 years now.  I'm just gonna stay active and try to ramp up the exercise a notch or two.  As much as I miss my red meat, cheese and creamy sauces, I have to admit that I feel great on this diet.  Good luck to everyone trying to make healthy changes, it's hard, no doubt.

    Dee 

  • ATeamNana
    ATeamNana Member Posts: 464
    edited April 2010

    hhfheidi.....wow our diagnosis and stats are very similiar...

    I had 4 A/C  12 Tax then Lumpectomy .... almost done with rads.

    I've had 31 and have 2 more to go...

  • Titan
    Titan Member Posts: 2,956
    edited April 2010

    I take 5000 iu's of d3 per day....actually that is the ONE thing my ONC enouraged me to take which surprised me to say the least.   I sometimes think that they are more into the medical part and not so much in the nutrition/vitamin/exercise route.  I try to combine both...being TN's...we need to be able to do something!

    I walk/run 2 miles a day, take  d3, one a day, calcium, folic acid, thistleseed, flax oil, biotin, aspirin, ..and try to eat a lot of fruits and vegetables.

     This goes with the strip steak and wine I had tonight for dinner! 

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