Long term testing post double mastectormy

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ma0311
ma0311 Member Posts: 4
edited June 2014 in Stage I Breast Cancer

So, 7 months after my surgery, no tests of any kind, not even a poke around to feel for lumps has been done. Nothing. Is this normal? I'm feeling nervous and confused. I was on anastrozole, but it was making me ghastly ill, so right now, I'm not on ANY medication. No check ups. No tests. No medication. Live or die? Is that normal methodology? This is one of the country's premier breast cancer faciligies and I'm not feeling really good about it. Please if you have information for me, share it. I could use some input!!

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited May 2011

    Marilyn, I would suggest speaking to your onc. At the very least you should be having physical exam and probably U/S of not MRI.

    Best of luck.

    Leah

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    I've had both Onc already do a follow up and he checked for lumps... I have a 6 month follow up with my BS next month too.  

    It does seem a little odd to see no one at all for 7 months? 

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  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited May 2011

    My BS didn't usually follow up.   It was my onc, and she likes to see me every 4 months.

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  • She
    She Member Posts: 503
    edited May 2011

    I was kicked free of my cancer clinic right after my BMX/DIEP, which was without clear margins and is no longer surgically viable.  No further testing or treatment.  It was my third different BC.  So yes, believe me I know how you feel.  I paid for an MRI last year and I'll pay for another one again this year.  I'll continue to pay for them as long as I'm able to.  The alternative is to wait at least 18 months for one paid by my medicare.  Then wait another 18 months or longer for the next one.  I'd rather be short a few bucks and alive.

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  • lisa-e
    lisa-e Member Posts: 819
    edited May 2011

    My follow up appointments with my onc always include a physical exam, including a careful exam of my mastectomy scars and chest.  I currently see him every 4 months.  I also see my surgeon once a year.  

    Also, my gyn and my pcp examine my scars on amy annual checkups.  I don't mind - I figure the more people examining my lump, bumpy chest the better.  My onc says that a local recurrence would have a very distinctive feel, so a physical exam of my chest is the best way to pick it up.  

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  • ma0311
    ma0311 Member Posts: 4
    edited May 2011

    Considering that I'm supposed working with one of the top breast cancer facilities in the nation, I'm almost embarrassed to admit that I haven't seen a GYN at all and no one has done any kind of check up other than to see if the scars healed properly. Nor has anyone suggested this. I come from a cancer riddled family tree. My mother died of breast cancer, my brother died of cancer (pancreatic) a couple of years ago, both maternal grandparents too. I seem to have slipped through the cracks and find myself swinging in the wind with no one to talk to, no information, no medication, nothing. People ask me how am I doing and I don't know what to say other than I'm alive. I finally called hospital admin this morning and told my story there. Will that accomplish anything? I can hope so. Thanks for the feedback. I badly need it!

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  • lisa-e
    lisa-e Member Posts: 819
    edited May 2011

    Marilyn, I notice you are in England and I don't know what the standard of care regarding follow up is there but you should be able to find out with some googling.   

    There are  different anti-hormonal  drugs, esp if you are post menopausal.  If you have bad side effects with one you may find the side effects of another more tolerable.

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  • ma0311
    ma0311 Member Posts: 4
    edited May 2011

    NEW England, not England!

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  • lisa-e
    lisa-e Member Posts: 819
    edited May 2011

    Whoops, my mistake.  ;-)  I saw Uxbridge and read Cambridge.  

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  • Kezzie62
    Kezzie62 Member Posts: 189
    edited May 2011
    There is a Cambridge here in Massachusetts as well...Innocent
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  • ma0311
    ma0311 Member Posts: 4
    edited May 2011

    Actually, there is both a Cambridge and an Uxbridge in Massachusetts. We are "twinned" with Uxbridge in England. There's also both an Uxbridge and a Cambridge in Canada. The Uxbridge in Canada is the biggest of the three. Here, it's a small town -- about 12,000 people -- in south central Massachusetts not far from the RI border.

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  • beacon800
    beacon800 Member Posts: 922
    edited May 2011

    I know how you feel. I don't take any meds, have no mris, etc. I get a 1x per year exam by my bs for the next five years. My gyn also does a physical. I too am treated at a major university comprehensive cancer center. at first I thought it was odd, but they tell me this is correct for me.



    Did you do any brca testing in view of your family history? Those I know who tested brca+ get blood work and exams 2x per year even with their prophylactic BMX status.

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  • whynotme
    whynotme Member Posts: 2
    edited May 2011

     That doesn't sound right.  I'm still getting my fills after bilateral mastectomy with tissue expanders.  Both by breast surgeon and plastic surgeon will see me at least yearly.  The oncologist checks gives me a manual exam every 3 months.

    By the way, have you been BRCA tested?  Breast, ovarian and pancreatic cancer (among others) can be related to BRCA-2.  I am not saying it's a good thing--I'd rather be negative--but it does get you a lot more follow up.  My cancer center has a "survivor clinic" where they follow you for life.  I think you need to push on this.  

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