Who orders what tests?

DorothyB

I'm confused. I'm not sure what is supposed to be done now or who is supposed to order it.

1) found out today that surgeon is the one who orders follow up mammograms and will have the first one next month - 6 months after surgery

2) I have read here about cancer marker blood tests like CA-15 -- do I need these types of blood tests? Who would order them? When?

3) Since I'm taking tamoxifen, I have to watch for uterine lining issues, uterine cancer, etc. Who is responsible for having this checked? my primary care physician or medical oncologist or surgeon? How often should I be checked? How is this checked? (picturing a test like I had done once which was sort of like an ultrasound) When should it be checked the first time?

4) What other testing should be done? and ordered by whom? when? how often?

Thanks!!

MinusTwo

Dorothy - it's up for grabs. For awhile, my MO ordered everything. Now my OG/Gyn orders mammos or ultrasounds. For awhile my MO ordered all the blood testing. Now my PCP has taken over that job.

I have CA27-29 instead of CA 15 or others. My MO swears this is the 'latest' test. Many docs don't want to order these tests because the numbers are only an indication. Patients get freaked is the numbers go up and usually you need a set of at least 3 to determine which way they are going.

I don't take Tamox, but I'm guessing that should be your MO. Maybe in combination with your OB/Gyn?

It also depends on what your original diagnosis was and what treatment you've had so far. I have a full complement of blood tests every 6 months - without which I couldn't get my Prolia shots. I have a DEXA (bone density) every 2 years per Medicare payment rules. I don't have mammograms since I have no breasts left. You pretty much have to take charge and figure out which doc is the most responsive and ask about what you want. I'm assuming as long as you're on Tamox, that will be your MO and you'll likely see him/her every 6 months for the first 5 years.

gb2115

It depends. My surgeon orders the imaging like mammograms and MRI (makes sense because if it finds anything she would be the one dealing with it). My MO monitors my tamoxifen and told me it's not standard of care to do the tumor markers for early stage cancer. My GYN does the uterine monitoring (makes sense because she would be the one dealing with that problem). I get a yearly ultrasound but my understanding is that it's a little old school, but whatever.

Definitely a team effort but they all have their expertise. I don't see the PCP for anything cancer related.

Ingerp

It really is a little bit of a mixed bag. My RO orders my mammos, I think because I've had a relationship with her since 2016. I no longer see my BS--I get looked at plenty by my other doctors, so I'd only contact her if something else comes up (knock on wood!). I've never had any tumor marker tests--I agree that's not done with early stage BC. My MO writes my AI prescription. My guess is you'll keep going with your GYN to make sure your lady parts remain healthy. Once you're through treatment, you'll likely have 6-month follow-ups with MO and RO, although I'm now down to every 12 months with my RO. I'm going to see my MO for my first 6-month follow-up in a few weeks--not sure if that will change to once a year, although I doubt it, at least while I'm on the AI.

flashlight

Hi DorothyB, How is the Livestrong Program going for you? It is a workout!! I'm enjoying the program.

I decided I didn't want to be followed by my Breast Surgeon so I asked my RO to order my 6 month, after radiation, Mammogram. After learning that I really don't have to be seen by my RO routinely I asked my MO to follow. She is the one who I will see every 4 months. I took the initiative to call and make a GYN appointment and I am glad I did. Because of my age I didn't need to be seen yearly and my Primary ordered my Mammograms. My Primary is aware of what my MO is doing and it is like a second opinion for me. She also orders my labs and checks my liver function every 6 months due to the side effects of Tamoxifen. My Lymphocytes are low due to the radiation. I think at some hospitals you can rotate through so you see a different doctor every 4-6 months (MO;BS;RO) I wanted to limit who I was seeing on a regular basis. I agree it is confusing.

DorothyB

Thanks - need to add liver testing and take off the CA-xx blood tests.

I'm really, really liking the LiveStrong program. I wish it were more on-going after the 12 weeks. However, I'm not wanting to be diagnosed again so that I can do it again I like having others to share the exercise journey with instead of just doing exercises totally alone. I also like that I am being taught the right way to use the machines and personal modifications based on my specific needs - like changing the way I do the glute machine exercises for a bit.

I actually don't have a "gyn" - PCP takes care of that. Med Onc is still up in the air as the one who prescribed the tamoxifen has left MD Anderson and moved to a different oncology group.

flashlight

Check with your Livestrong trainers I think you can do the program as often as you like. I have some in my group that have taken it 3x!! I was going to my primary as well for GYN issues. When I started on the Tamoxifen I decided it would be better to see a GYN. Ask around and see who others recommend. It takes 3-4 months usually to get an appointment. Maybe if you liked the Oncology practice you could see a NP there and get suggestions on other Oncologist in the practice. Hope things go well for you.

DorothyB

I was told that you can "re-take" Livestrong of cancer treatment prevents you from finishing the first course. Also, if you are diagnosed with cancer again, then you can take it again. It may be because we are in a large, heavily populated area so there is a lot of demand.

I still haven't figured out whether I want to go w/ Kelsey or w/ MD Anderson for med onc. Waiting to see if breast re-fills. If it does, will try to get PT through MD Anderson which may mean med onc at MD Anderson, but not sure. Kelsey has called to set up appt w/ their med onc, but I wasn't able to answer their call. Will call them tomorrow or Monday.

bcincolorado

After the first part of treatment my MO ordered all mamos. GYN did other testing. MO ordered all the CA testing as part of my lab work she requests each time I see her. Due to SE from meds she has also ordered PET scans and DEXA scans as well. Primary doc gets copies of all and chimes in during my annual check up with him as well. Best wishes for you.

MinusTwo

Dorothy - Houston thoughts - Where are you taking your LiveStrong?

I interviewed oncologists at Methodist, Baylor & MD Anderson. My surgeon (at Methodist) had a fellowship at MDA when she was younger & kept up with the people & the procedures. Her comment was she thought my cancer was "garden variety" (although none of us likes to believe our cancers are "easy"). She said she would be the first person to send me to MDA if she saw anything that required more specialization.

So I went with an MO at Baylor who I adored & who everyone believed "hung the moon". Unfortunately he has since retired & Baylor is no longer the "real" Baylor anymore. Both my BS and my PS were at Methodist. I did my radiation at MD Anderson /Katy because it was the most convenient, but really liked the RO at Methodist too.

My suggestion would be to meet both MO's - at Kelsey & at MDA. Take a list of questions and see how the relationships gel. Because we are such a huge city, it makes some sense to consider the distances if everything else is equal.

DorothyB

MinusTwo - Doing LiveStrong on the YMCA at Cypresswood and 249.

I did meet w/ MO's at both locations at the beginning of all of this. The Kelsey one was probably good, but I was so freaked about maybe needing chemo. They are calling to make me an appt w/ the same MO at Kelsey. Not sure if there is one at the closer MD Anderson location yet. I'm a bit hesitant to see her before I try to get a refill of my tamoxifen in a few weeks.

I went to MD Anderson West Houston (which is not the same as Katy, but is actually along I10) for radiation.