How often do you check in with oncologist?

LaurainNY

For those of you who are over 5 years beyond Breast cancer treatment, how often do you check in with your physicians? What kind of scanning or tests are you offered?

I was Stage II in 2011, and had mastectomy, chemo, radiation, and then Arimidex for 3 years. Meanwhile my oncologist retired from Sloan Kettering and I have not checked in with them since 2012. I am thinking I should call and see if there are any recommended follow up visits.

ohio4me

I saw my ONC every 6 months for five years, then started annually until insurance changed and she wasn't in network. I have an appt tomorrow for a 10 yr checkup. I plan to see her annually . I'm high risk of recurrence and don't wanna be in a situation where I wish I'd taken the time. Gives me peace of mind.

wrenn

My oncologist sees people for 2 years after treatment ends and then you go back to family practice doc. The family doctor is then supposed to do follow up with exams every 6 months or a year and order scans if they think it is necessary and the oncologist is always available if the family doctor thinks it is called for. My doc has been in touch with my oncologist when she wasn't sure about a chest xray I had a few years out and he checked it and said it was fine.

HersheyKiss

I saw my surgeon every six months for the first three years (now annually for the next two). I see my ONC every six months for the first five years (then annually after that). My PCP sees me for an annual well-woman exam (it's a bit more thorough for her cancer patients). Other than my annual mammogram and routine bloodwork, no other tests or scans have been ordered.

DutchieGirl

After treatment, I saw my MO every 6 months. I’m now on a yearly schedule and will continue on a yearly basis until I’m 5 years post-diagnosis. I’ll then be released (because of my hormone-negative status, I will be out of the woods at 5 years. He does not do any tests of any kind unless warranted by symptoms. He is fully aware of the “scanxiety” these tests cause and would rather do tests as needed.

moth

There is a set of evidence based survivorship guidelines which have recommendations about frequency of visits with physician & testing

American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline

https://acsjournals.onlinelibrary.wiley.com/doi/fu...

Table 1 is the summary of the recommendations if you don't want to read the whole thng.

I think honestly the most important thing from a breast cancer perspective is for the patient to be aware of signs & symptoms which should be reported to a physician. There is a set of really good inforgraphics from the UK for both IDC and ILC. (btw, they call metastatic "secondary" cancer, just a different terminology) https://www.abcdiagnosis.co.uk/resources/infograph...

The second important thing to know is that having had cancer once puts you at higher risk for all other cancers, so make sure you do your screenings for colon cancer, get your skin moles checked etc. Stay extra vigilant.

wrenn

Hopeful82014

Hi, Moth - that info graphic is spiffy. Thanks for posting it.

As to the statement that having once had cancer puts one at higher risk for all other cancers; I’ve read that a number of times but have never seen a citation. Do you have one?

My first gastroenterologist said something to the effect that my ‘body had demonstrated it’s ability to grow cancer’ but on the whole many (by no means all) providers seem pretty casual about such things.

By the way, I’m definitely not questioning your statement, just curious. 🙂

Thanks, from a fellow west-coastie.

moth

Hi Hopeful, I have this one:

"cumulative incidence of second cancers at 30 years from primary cancer diagnosis was 21.2% (21.0%–21.4%) for survivors of breast cancer"

https://ascopubs.org/doi/10.14694/EdBook_AM.2014.3...

A lot of it probably just sheer aging which is the biggest risk factor, kwim? But possible other factors are the treatments received for the first cancer and the genetics of the individual.

Hopeful82014

Thanks, Moth. I found it interesting yet leaving a lot unknown, teasingly so... You summed it up pretty succinctly.

Katonah10536

I had Phase 1 breast cancer diagnosed in Aug 2007. Underwent 3 surgeries (Oct, Dec) 2 follow ups to clean margins. I had 2 lumps removed from same quadrant. The 1st lump was found with Ultra sound, the 2nd with MRI. I would never discourage anyone from getting an annual mammo, but in my case have little confidence that it will pick up early breast cancer  

I always had a mammo and ultrasound annually and continue to do so. I also have an annual MRI and continued to do so since one of my lumps was only detected through MRI.

I continue to see my Breast Surgeon, Oncologist and Radiation Oncologist annually. I saw them more frequently after my surgery but over time worked up to an annual schedule (probably after 5 years). I space out the appointments throughout the year. I also go to my original Radiologist for annual Mammo and Ultrasound. I go to a hospital for MRI as their machine is newer and more comfortable but have my original Radiologist look at the disk to confirm the hospital’s radiologist’s observation.

My original oncologist retired while I was still taking Arimidex. The one I switched to only want to see me until I finished my Arimidex treatment and urged me to stop before my 10 year goal. I stayed on the Arimidex and changed Oncologist. I still see the new one annually 2 years after I completed Arimidex and 14 years since my diagnosis. 

bcincolorado

I still see mine and now on once a year after the last "virtual appointment". The last 2 were virtual because of COVID and they were only seeing chemo patients in the office to get chemo. She still is the one who orders my mamos. Not my primary and runs labs including the cancer markers to make sure everything is ok.

I did not have mx on both sides and just one side had to be done (tried first with lump and had to get mx). Escaped chemo and rads. Apparently I had "nice cancer" as my breast surgeon told me. Still seeing MO though all these years later.............................

Best wishes.

LaurainNY

Thank you everyone for responding. I know the oncologists' follow up protocols will be different for each of us, based on a variety of factors unique to each of us, but I appreciate hearing what protocols all of you are following. Since I had a double MX (right side was preventative), there are no annual mammos and without detecting any symptoms of secondary or recurrence of cancer, there have been no scans, which does not give me complete peace of mind.

Moth- that infographic is very helpful so that we can watch out for red flags. I downloaded the article too and will save it for bedtime reading. It looks like it has useful information about screening tests (such as every 2 year DEXA scan in certain situations) that I might need to bring to the attention of my PCP.

Mavericksmom

It hasn't been over 5 years for me, so perhaps I shouldn't be posting this, but I am over two years with second breast cancer diagnosis and I ended my oncology visits last month.

I don't take any hormone therapy so all I do is have mammograms on my one remaining breast. I wanted both breasts removed after my second diagnosis but was refused because my surgeon lied to me. He told me that hospital didn't remove healthy breasts unless BRCA positive. I am BRCA negative. I actually had an extensive genetic work up and no defective genes were found. I only found out via the radiologist last month, that my surgeon lied to me. Too late now, what's done is done and he is no longer practicing medicine.

It was too stressful going to the cancer hospital to see the oncology NP and it took me about an hour to get there. I would stress out months prior and never left feeling any better than I did before the visit. I really like the NP a lot, but I didn't need her any more and there are so many women who do need to see her. Sadly, breast cancer provides a revolving door of patients.

My cancer was not found via mammogram anyway, so they weren't doing anything my PCP and local hospital couldn't do. I am fine with that.

I think moving on is so much easier the second time!