What is the usual Oncology follow-up

mudd

After surgery for a BMX I finished Chemo (4TC) in March and just had my three month check-up. What is the normal oncology follow-up like? I don't know what to expect in the future. I feel fine, my labs were fine and was told to just enjoy myself. How often does everyone go to the oncology doctor and do you need to go back to your regular physician as well. Thanks for any input.

moth

You might want to have a look at the survivorship guidelines - esp the first table for an idea of what recommended schedules and tests are. I think whether your MO does it or your primary doctor depends on your geographic location & how integrated your healthcare system is. But regardless of who does it, you can look through the guidelines and make sure someone is staying on top of your health (including cardiac health & normal population screening for other cancers)

American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline:
https://onlinelibrary.wiley.com/doi/full/10.3322/c...

gb2115

I see my MO every 6 months. My survivorship care plan says for me to see someone on my team every 3-4 months (mostly for a clinical breast exam). So they alternate amongst themselves. I end up seeing the MO every 6, the surgeon every 6, the RO every 6, and then my GYN is thrown in there once. So I get a LOT of breast exams--7 a year?! :-)

Meow13

After year 5, I see mo once a year.

ChiSandy

For me (and I didn't have chemo, just lumpectomy & radiation), my followup is: no RO followup, as he has discharged me; BS/mammo every 6 mo. for the first two years and now annually; MO every 6 mo., along with Prolia shot to prevent letrozole from turning pre-existing osteopenia into osteoporosis. Medicare wellness visit with PCP annually, with visits in between as needed for management of other matters. Derm. every 6 mo. to screen for skin cancer. My MO handles only matters related to my cancer care--she leaves the rest to my PCP and other specialists (ophthalmologist, orthopedist, etc.) for other medical matters, including immunizations.

mudd

Thanks so much for all your responses. My Oncologists pretty much said the same thing. He is in charge of all cancer follow-up but my pcp and any appropriate specialist should be my regular doctors. I prefer the MO to my PCP but he said he does not replace them.

mnsotamom74

bumping this as I was just about to write a similar post. I’ll have my final chemo March 8 and I’m starting to wonder what it’s going to be like after. I’ve seen my oncologist every other week for months and have found that reassuring, it scares me to think I could go from seeing him so often to ( good luck, see you in six months) that sounds so scary. How do they monitor to make sure it’s not back? It’s all so overwhelming to me

gb2115

To monitor if it's back, all they do for me is a breast exam every 3-4 months, mammogram yearly, and gave me instructions to let someone know if I have weird symptoms (unrelenting) that last for more than 3 weeks.

edwards750

Once I hit the 5 year milestone my MO said I could continue to see her? Or not. Frankly all she did was run blood tests to see how Tamoxifen was affecting me via bloodwork. No tumor marker tests because she said too many false positives and I was early stage anyway. I had radiation not chemo. So frankly it was pointless to continue seeing her. I do have an internist.

Several ladies in my church group do have tumor marker tests done. When the numbers are elevated they usually retest in a few weeks because there are other multiple reasons that could spike the numbers. A friend at church had that happen to her. She was retested and the numbers were even higher. Unfortunately her BC had metastasized to her hip. She started out with an aggressive BC. She was 2 years out when this happened. She takes a chemo pill and recent scans are very encouraging.

It was scary to me not to have someone monitoring my BC after 5 years but that's what a mammogram is for. Btw I'm 7 years out last August. My MO also told me to stop taking Tamoxifen so no 10 years for me. That's good but it was still an extra insurance policy or so I thought. She said the side effects from the drug could manifest themselves if I continued taking it plus since I had a low Oncotype score and a small tumor she figured my odds were good. Also, having 33 radiation treatments certainly helped to ward off a recurrence.

Unfortunately for us we are branded with the C word and the fear factor stays with us forever but time does help. I am not so consumed with my BC as I once was.

Good luck!

Diane

NotVeryBrave

Two plus years from diagnosis, I'm seeing the MO every three months. He really isn't doing much. I saw a new NP at the last appt and she just talked to me - never even touched me. My BS said that she only needs to see me once a year now. I see my PCP as needed.

No one does bloodwork on any particular schedule. I don't have any scans.

I have a number of problems that are varying levels of concerning - tailbone pain, shoulder pain, ringing in my ear, fatigue, now flashes of light and a new floater in my eye (currently at eye doctor). Nothing ever seems to have an answer so I'm not sure that it's worth pursuing most any further. I guess they're all a combination of treatment after effects, menopause, and aging.

Edited to add that I often feel like a hypochondriac!

Runrcrb

i saw my oncologist quarterly for the first two years. I’m now on a semi annual cycle with her. We discuss how I’m feeling, any side effects I’m experiencing, etc. she reviews my blood work (typically gathered by my PCP as i see her annually). If my oncologist wants more frequent she sends me off for more. She does a breast exam. I get a mammogram annually. She ordered my baseline DEXA. I expect i will continue on this cycle until the 5 year mark or later depending on how long i stay on aromasin

My PCP is very familiar with my case and between the two i feel that i have excellent coverage. I haven’t seen my breast surgeon since he removed my portacath; i will see my plastic surgeon one more time (12 months after my last surgery).

ctmbsikia

I was also told BS/MO every 6 months.  BS does alternating mammo/mri.  MO does her thing.  Only did 1-3 month follow up with RO.  I released myself! I am just over a year out and I've told my MO I have appointment fatigue.  It's too much to be seeing someone every 3 months.  Strange as it sounds, worrying about appointments IS affecting my quality of life.   I get anxious before, during and after. That's about 3 weeks that I'm not living my life, and only 9 weeks that I can.  I was never one for regular Dr. appts.  I only went when something was wrong.  Lately I've been really anxious almost to the point of utilizing the therapist that is available to me thru the survivorship.  I hope to not need that (it's another appt! LOL).  It's just a lot trying to stay well.  I'm also working on dental health right now, and my GP (also every 6 mos. at the moment) is due in Apr.  Must have colonoscopy 1st and bloodwork-if I can pass these tests I trust they switch me back to annually.  I just recently cancelled an MO appt due to my dental issues and asked that I not come back until Dec.  Not sure how BS will take it when I see her in June and ask to see her in a year? But if I have to do the 3 months I will.  I feel silly complaining about it. Just being honest.  

Murfy

Interesting how our follow-up schedules are so different! There doesn't appear to be a standard protocol. After lots of reading and research, I will see my MO every 6 mos for AI script, bloodwork and cancer marker for 2 years. Then will switch to every year until year 5 when can go off AI. Have already fired my BS; mastectomy scar looks fine. Internist orders mammogram and does palpation every year.

edwards750

Murfy - just curious why did you fire your BS?

Diane

Texas357

Just seeing this thread. I'm 10 years out, and my MO still orders annual chest x-ray and blood test. I've got a close friend, same diagnosis at same time but different MO, who gets annual blood tests but no chest x-ray. When I asked my MO about it, she said that the chest x-ray is a quick way for her to find a new cancer. But now I'm wondering if it's overkill?

edwards750

Good question Texas. I’ve read articles that say chest X-rays aren’t all that conclusive anyway. I’m 7 years out last August and I just have mammograms annually. I don’t even have blood tests except the blood profile my internist orders at my annual checkup. I haven’t heard of anyone who had BC having routine chest X-rays. You might be right about the overkill plus you are 10 years out.

Being overly cautious is not a bad thing but I would probably ask her if that’s her standard protocol. All MOs don’t agree on tests and treatmentsso maybe it’s just her way. You might ask your friend to ask her doctor why he/she doesn’t do the same.

Diane

Texas357

Overall, I like my MO and I know if I push back on the tests, she'll fire me as a patient. I'm just frustrated because going to the hospital for the x-ray, then to her office for blood work is a PIA especially knowing it's not standard protocol. I may consider switching doctors at some point.

Murfy

Hi Diane: After mastectomy surgery had healed, I found a BS to be superfluous. He agreed that my MO and internist should be able to handle my medical needs.

edwards750

Murfy - that makes sense. After all his/her job is done. The aftermath with treatments is on the MO. I didn't see my BS except for mammograms and after 5 years I saw his associate.

Diane