Tamo - who should prescribe & follow me?

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TwinCityTwin
TwinCityTwin Member Posts: 4
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

I'm 41 years old and was diagnosed with LCIS and ADH last October.  Since then I have done a fair amount of research and saw a genetic counselor.  I have decided to take Tamoxifen and monitor (alternate Mammo and MRI every 6 months with a doctor breast exam each time). 

Here is my dilemma - I can't figure out who should prescribe the Tamoxifen for me and follow me for any potential side effects.  My Breast Surgeon says she doesn't typically prescribe it, my Ob-Gyn says she has never prescribed it.  My BS is recommending I go to my Internist who I can't imagine has a lot of experience with it.   I feel a bit like a hot potato.   Should I be seeing an Oncologist, even though I don't have cancer?  How do I best coordinate care across so many different doctors?

Any advice would be much appreciated.  Now that I have finally made my decision, I'm anxious to get on with it.

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  • lisa-e
    lisa-e Member Posts: 819
    edited April 2010

    An oncologist is the most appropriate person to advise you on the risk versus benefits of taking tamoxfen in your situation.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2010

    I was diagnosed with LCIS over 6.5 years ago and took tamoxifen for 5 years. I have gotten my scripts for tamox from my gyn a few times, but usually from my oncologist  who now writes my scripts for evista. (who also coordinates my high risk surviellance of alternating mammos and MRIs every 6 months, does breast exams and bloodwork). As you probably already know, there is a lot of controversy surrounding LCIS; although it is technically a stage 0 in-situ non-invasive bc, many in the medical community consider it only a marker for higher risk. All my docs consider it bc, just a non-invasive type of bc; so personallyI feel more comfortable having a cancer specialist (oncologist) coordinating my care. Feel free to PM me if you'd like.

    anne

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  • 1rarebird
    1rarebird Member Posts: 91
    edited April 2010

    I agree with lis-e, a medical oncologist will have the most experience with Tamoxifen--its pros and cons and what it can do and not do for your sittuation.  Tamo has been their bread and butter for almost 30 years now when it comes to ER+ breast cancer and there has been so much written about its application I would think that if anyone can get a handle on it for you, a med. onc. will be your best bet.

    Good luck--

    bird

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  • TwinCityTwin
    TwinCityTwin Member Posts: 4
    edited April 2010

    Thanks to all of you for the quick replies.  I will get busy trying to find a good oncologist in town.

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  • tamgam
    tamgam Member Posts: 255
    edited April 2010

    I agree the onc is best for the rx.  I had the same initially and saw an onc.  She suggested Tamox. but I decided against it.  Fast forward 2 years I am recovering from a BMX .  Had DCIS and invasive tubular carcinoma in right breast.  I was actively monitoring with mamms and MRI so it was found pretty early and I feel lucky.

    I try not to second guess myself but I would def. have taken the tam. if I could do it over.  It can have some nasty side effects, but it's proven to work and the SE are better than invasive bc. I will have to take it now but haven't gotten there yet.  Best of luck to you.

    T.

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  • jenniferv
    jenniferv Member Posts: 9
    edited July 2010

    Hi Anne   -  I find myself in this situation - My onc discharged me  - 5 years out -  and he was not willing to continue working with me - My OBGYN is prescribing now the Evista but my issue  is the referral for the MRI which no one at this point  wants to do - so I face nagging the breast surgeon and the OBGYN for this MRI referral - in the meantime I am due next for a  dx mammo so I have a few months - - Jennifer V

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2010

    jennifer--perhaps you could find a new oncologist that could coordinate your follow up care? Mine has taken care of my scripts for tamox (now evista), done yearly bloodwork, breast exams, and schedules MRIs and mammos (but your gyn could also do that too). I'll be seeing my oncologist indefinitely, as the risk with LCIS does not go down over time.

    Anne

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  • TwinCityTwin
    TwinCityTwin Member Posts: 4
    edited July 2010

    I agree with Anne,  I think you should look for another oncologist.  Thanks to the advice here, I found a great oncologist who tells me he will follow me for as long as I want and be my quarterback.  He will take care of my scripts, MRI and Mammo orders, bloodwork, breast exams, etc.  I have now been on tamo for about 6 weeks and it is going well.  I have only seen him once so far, but feel much better knowing that I have a quarterback for my care.

    Pam

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  • leaf
    leaf Member Posts: 8,188
    edited July 2010

    Good for you, Pam!  There is nothing like having doctors who know your situation and care.  My 5 years of tamox will be done next year, and my onc is retiring, so I'm switching to another.  I haven't met her yet, but I hope she'll be as good a quarterback as yours.

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  • leaf
    leaf Member Posts: 8,188
    edited August 2011

    Well, I was pretty surprised about my onc visit today.  When I last saw her in Feb, she had wanted to only see me once a year, and have someone else do the clinical exam the alternate 6 months.  So I was ready/resigned for that.

    Since I'm finishing up my 5 years of tamoxifen this fall, she'll see me again in Oct.  In the meantime, she's going to try to order a Dexa scan, and I think she's contemplating putting me on an AI, depending on my labs.

    So she is a lot more attentive than I thought she would be! I still haven't been able to approach her with the possibility of MRIs, or even a baseline MRI, but I'll see her in a few months.

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  • TwinCityTwin
    TwinCityTwin Member Posts: 4
    edited August 2011

    Wow, it's never ending.  My oncologist also ordered a bone density test earlier this year.  He said that there was recent research that showed that the medicines that were used to treat osteoporosis (like Boniva) had some side benefits of reducing the occurance of breast cancer.  He wouldn't prescribe it on it's own, but if I happend to need it anyway, then it might be worth it.

    On another note, I had a bit of an issue a couple of months ago.  My oncologist called in my renewed prescription for Tamo for year 2 and when I picked it up, it was twice the size of what I had been taking.  Long story short, Target made a mistake when I first filled the original prescription, which should have been 20mg.  They mis-keyed it and gave me 10mg.  I took 10 mg for an entire year without knowing it was half the dosage I should have been taking.  I am still more than a little upset about it.

    Good luck in figuring out what you are going to do. Keep me posted.

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