what was your follow up plan after chemo?

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flyrzfan
flyrzfan Member Posts: 557

Hi everyone,

I recently completed chemo and spoke with my Dr. about what we do now to monitor me for reocurrance. To my shock and awe, she said "nothing, we assume you are cured until you're not."

I am curious if this is the standard for everyone? I expected (and want) at a minimum, for my tumor markers to be checked. I thought they'd get a baseline and monitor them? I would like, but don't feel as strongly about getting baseline scans as well. It was discovered during my chemo treatments that I have Non-Alcoholic Fatty Liver Disease so I had hoped to get a complete picture of my liver so that we had something to compare it to should it ever be necessary.

Thanks for you input...

Comments

  • flyrzfan
    flyrzfan Member Posts: 557
    edited November 2008

    bump...

    anyone?

  • abbadoodles
    abbadoodles Member Posts: 2,618
    edited November 2008

    Yes, Bonnie, that is pretty common.  Apparently, they have found that the survival rate for those who get all kinds of screenings and scans is no different from those who develop mets that are picked up when symptoms become apparent.

    This may change some day if and when tests/treatments for bc change/improve.  In the meantime, as your doc says, you are considered free of disease unless and until something happens. 

  • flyrzfan
    flyrzfan Member Posts: 557
    edited November 2008

    Well, even though I don't like the thought of it, I do at least feel better that it's not just my doctor! Thanks...

    Susan ~ anytime after the Holidays? Or between Thanksgiving and Christmas. I'm finding that my days are booking quickly already! Tis the season to be jolly....

  • nowheregirl
    nowheregirl Member Posts: 894
    edited November 2008

    Hmmmm maybe it's because I don't live in the U.S. but it sounds really odd to me. I've been having the follow-up scans regularly (MRI's CT's and bone scans every 3 months for the first year after treatment, 6 months for the next two years and 12 months till I mark 5 years). Also since I have to meet with my onc every 4 weeks to get the Lurpron shot done, I get the tumor marker done like every 3 months along with the bloodwork. And most people in my BCO chemo group do get the follow-ups on the regular basis too and they all live in the U.S. Personally I would feel insecure if my doctor didn't order the follow-up scans for me because not every recurrence is noticeable. Maybe you could insist on the follow-up on the regular basis?

    xo

    Fumi

  • revkat
    revkat Member Posts: 763
    edited November 2008

    I see the onco and my BS every 3 months this year, then every 6 after that for a while (not sure how long). The onco runs basic blood work, including a tumor marker, but she says it's not really worth much, she just does it since we're already doing the CBC and liver stuff. But as far as scans, it's what you said, nothing unless I'm having symptoms. She cited the bit about no increased survival when you compare mets diagnosed first by symptom or first by scan.

    So, your follow up sounds normal to me. Although I think all of us are a bit surprised that it isn't any more extensive when we first are told about it!

  • sunshine787990
    sunshine787990 Member Posts: 147
    edited November 2008

    Hey girls I totally agree with you!  I'm finished with chemo and radiation. I went for my appointment with my Onc...  well they did blood work....and said see you in 4 months and smiled at me and that was it!  I guess I wanted a certificate or something telling me I had completed this portion of my cancer treatement and details of what was next?

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited November 2008

    I've never had a scan.  I did have an ultrasound once for abdominal symptoms.  This is all normal especially for someone who was stage I.  Your onc will move quickly if you have any symptoms.  

  • flyrzfan
    flyrzfan Member Posts: 557
    edited November 2008

    I'm sure she will, it just surprised me that I had more follow up with meningitis than I'll get with cancer...although few co-pays is OK with me!

  • KKing
    KKing Member Posts: 425
    edited November 2008

    Yes, I asked the same thing and was told to go and live my life.   He said if I develop a problem, I should call him and we will deal with that then.   It seems a scary thought after all the chemo and rads and then you are left look after yourself.   I am booked to see my onc in May which will be a 6 month checkup.   I guess we have to get use to this now.

  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited November 2008

    I would say you should request a liver ultrasound....I did and got it..

    they should also do it if you are going to take tamoxifen..

  • otter
    otter Member Posts: 6,099
    edited November 2008

    I asked my onco about follow-up, especially since I'll be on Arimidex for at least the next 5 years.

    She said routine follow-ups would be at 6 month intervals, and I could alternate between seeing her and seeing my breast surgeon (a surgical onco) who is in the same medical center.  I saw them both in August, when I had my 6-month post-surgery mammogram on my remaining breast.  My next appt. is in February '09, with my onco.  In August '09, I'll have another mammo and see my surgeon again...assuming nothing else happens in-between.

    Scans are not used for routine screening at my cancer center, at least not for women with Stage I BC.  I did get a DEXA bone scan to check bone density when I started on Arimidex this past summer; my onco wants another DEXA in 2 years.  There are no routine scans for mets, though, and there is no blood work to check "tumor markers".  My onco does order blood work for liver function testing, but apparently that's done only once a year or so.  (I'm not sure.)

    I've read some of the papers containing guidelines and recommendations for follow-up after BC tx, and they say routine screening with CT, PET, bone scans (other than DEXA), or tumor markers, is not worthwhile in early stage BC.  One paper said most mets are discovered because of symptoms that develop between scheduled follow-up visits.  Most of the papers say there is no survival advantage in women who receive regular screening--they just don't live any longer than women who aren't getting screened.

    I know there are exceptions to all this, and I know there are oncos who follow a more rigorous schedule.

    otter 

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited November 2008

    If you are on tamoxifen you should have periodic transvaginal ultrasounds.  Also, a checkup by a opthalmalogist is a good idea because the chemo can do funky things to your vision (and rarely tamoxifen as well).

  • sunshine787990
    sunshine787990 Member Posts: 147
    edited November 2008

    Member_of_the_Club

    How long should you wait before you go to your opthalmalogist?  I'm finished treatment 10-24-08 and started tamoxifen 10-29-08  I was wondering if anyone was considering a body cleanse?

    I have been looking at Arbonne's  any suggestions?

  • KKing
    KKing Member Posts: 425
    edited November 2008

    sunshine... I was wondering about the body cleanse.. what is Arbonne's??   I am making a smoothie in the morn with wheatgrass... I read this is good after radiation therapy.  I was told milk thistle is good for the liver but I am quite uninformed.  I am open to suggestions.

    Enjoy the day

  • sunshine787990
    sunshine787990 Member Posts: 147
    edited November 2008

    KKing  I'm just starting to look for a body cleanse or detox....Arbonne is a product my daughter ask me to look at.....but I found out it is not FDA approved.  I feel like I need to do something but not sure what. 

    I wish they would give you instructions on this is what you need to do after treatment!?

    I did start taking vitamin D & calcuim also eveing primrose for the hot flashes.

  • carolsd
    carolsd Member Posts: 358
    edited November 2008

    I had some tests at first diagnosis: CT scan, ultrasound, bone scan. Nothing found. They were mainly because I asked about them, I think. I'm not so sure my onc would have ordered them otherwise.

    My onc has stated he doesn't request tumor markers because he finds them to be unreliable. I've always had a little bit of a suspicion about that but I've never known what my tumor markers are.

    I see my onc every 6 months now (4 years out) and he always asks "any lumps, bumps, unusual pains?" and I say "no" and he does a perfunctory exam and lab work and that's it.

    I'm comfortable with it. I'm aware of the belief that it doesn't improve survival to find out about mets sooner rather than later.

    But anyway, the main thing is "you're done with chemo!! Congratulations!!!"

  • sunshine787990
    sunshine787990 Member Posts: 147
    edited November 2008

    Thanks carolsd  I am soo glad to be done! 

    Sometimes I feel like I have gone thru all of this with my eyes closed...just hoping for the best!

    Well I'm done and so far so good!

    Have a great week-end

    Deb

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