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Shimmymoo
Shimmymoo Member Posts: 8
edited September 2015 in Surgery - Before, During, and After

I'm sorry to repost in this forum but I didn't receive any responses in the rads forum. Hopefully this is the right place!! I'd really appreciate some help🙏🏻

I just finished rads a week ago. I had a lumpectomy in early May, no nodes involved, highly er pr positive, no chemo. Because the tumor was .5 cm and for other reasons I guess, two different oncs said I didn't even need to do oncotype testing. It's weird bc I still kind of want to know my score but they both said it wasn't necessary. I'm being treated in NYC at a large well known hospital that is not MSK.

I'm seeing my onc next week to start tamoxifen. I'm wondering about follow ups. And monitoring

How long after you finished rads did you have your first mammo? Was it just a mammo? If not what else?

How often do you see your onc, breast surgeon and rads onc?

Who do you see after imagingto go over images?

Who schedules/recommends type of imaging?

Who do you call or see if you have problems pain questions?

I guess I'm not sure how actively involved the BS is involved after surgery. Is your MO the go to?

My BS office told me I'm not having a mammo until 1 year after (April 2016). This seems very strange to me. And very scary. Would the MO have a different opinion and would she overrule the BS? I'm not sure how all these pieces and Drs fit together!

Many thanks

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  • ladyboss1997
    ladyboss1997 Member Posts: 202
    edited September 2015

    I finished rads in November 2011. I had a bone scan and CT scan in December 2011. I did not have my next mammo until March 2012.

    I see my onc every 6 months. They did bone scans and CT scans annually for the first 3 years. Now I just do blood work every 6 months. I alternate mammos and breast MRI's every 6 months.

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  • Kicks
    Kicks Member Posts: 4,131
    edited September 2015
    1. I started Femara a week after starting rads - not after.
    2. I finished rads early March - had first mammo in Aug (a year after DX). I get an annual mammo every Aug.
    3. I do not see my Surgeon (last saw him about 6 mths post surgery), have not seen my Rads Dr since about 8 mths after rads ended and have not seen my Chemo Dr for 3 yrs. The first year I saw him every 3 mths for the first year then every 6 month for the next 2 years. Surgeon said he would have 'cut me loose' to my PA earlier except I had developed a large seroma and he wanted to be sure it was resolved. I burned very bad on rads and Rads Dr wanted to be sure the burns were healed before 'kicking me to the curb' and seeing my PA every 6 months. My Chemo Dr only quit seeing me every 6 months when when he left this facility to go to a more prestigious one on the East Coast. My PA has been my PC for almost 20 years and I totally trust her - see her every 6 months.
    4. Basically, I have had no 'routine' tests/scans. The Rads Dr wanted a new CT with contrast before I started rads so that was done the day I had last adjuvant Chemo so I could start rads the next week. The seroma did still show up at 6 cm and that I had developed Gall Bladder Sludge (yes that is a medical term) from the Chemo. I have had a couple of scans in the years since but they were not ordered 'routinely' but for specific issues. (I get an annual DEXA (bone density test) as I am osteoporosis.)
    5. It is my PA who orders my tests/scans and it is her I talk to. Blood work every 6 months.When the seroma developed - I saw Surgeon because it was surgery related. When I burned after rads, I called Rads Dr as it was radiation related. I never had any Chemo or general health issues while on neoadjuvant or adjuvant Chemo so never needed to call Chemo Dr.
    6. Pain was only an issue with the burns and I was given Vicodan for it.

    Remember - there is no 'One Size Fits All' when it comes to us, our DX, our TX plan, our Drs.and our overall health when DXd when it comes to what we experience. We are each very unique and no 2 of us have exactly the same 'journey'.

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  • Nocalmom
    Nocalmom Member Posts: 21
    edited September 2015

    Your dx is missing from your signature but it sounds like your mo will be your point person now for all your questions and concerns. Except for one gesture of a follow up appointment, my bs has been out of the picture since my surgery. I also feel a little a drift now that I'm basically done seeing my ps. I said no to tamoxifen since I had DCIS so have never even seen an mo. I'll get annual mamos on the 'good' side. I'm assuming my bs will check my 'bad' side at 6 month follow up and give me further instructions then. Funny how the doctors keep you on a strictly need to know basis. Most of what I know about my follow up and 'now what' issues I have learned from these boards.

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