Follow up Post Chemo & Surgery?

mye · December 2015

Hi,

I have finished TCHP back in August, had surgery in September and am currently half way through radiation. My question is regarding the type of follow up you are and will be getting from your oncologist. As Her2+ patients, I am thinking we should be monitored closely as recurrence happens sooner rather than later with this type. I am wondering if my oncologist is too relaxed with his follow up. The only thing he is planning on doing so far is checking blood every 6 months for tumor markers. How are your oncologists planning your follow up care? Are you getting any scans and at what intervals?

Thanks

BarredOwl · December 2015

Hi mye:

Hopefully, other HER2+ ladies will weigh in with their personal experiences.

Meanwhile, here is a interesting article comparing follow-up recommendations from various organizations. (ASCO has since issued a 2015 update). See the full text tab and comparison of follow-up recommendations in Table 1:

http://dx.doi.org/10.1016/j.critrevonc.2014.03.001

The American Cancer Society and American Society of Clinical Oncologists (ASCO) have just published a new Breast Cancer Survivorship Care Guideline. It is quite comprehensive regarding many of the issues we may face.

"The purpose of the American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline is to provide recommendations to assist primary care and other clinicians in the care of female adult survivors of breast cancer."

ASCO 2015 Full text: http://jco.ascopubs.org/content/early/2015/12/07/J...

There is a link to pdf at upper right.

BarredOwl

SpecialK · December 2015

mye - I saw my MO every three months for the first two years following the end of treatment, with blood work prior to each of those appointments, including tumor markers. When I finished chemo my CA27/29 was three times the high normal range (but had been in the range prior to chemo), so he followed me closely and it turned out that it was inflammation from chemo driving the numbers higher, and it took several months for the number to come down. I had a post-chemo PET scan and a post-Herceptin PET, but now no routine scanning without symptoms. I moved to appts. every six months two years ago, and at the one last Dec. I discussed hip pain that had been constant for a month. He ordered lumbar and bi-lat hip MRI and a DEXA with no hesitation, and those scans showed worsening of pre-existing lumbar disk issues, new thoracic bone spurs, trochanteric bursitis, stress tears of the gluteus medius muscle, and fluid in the joint - but no mets, thank goodness. I have addressed these issues with physical therapy. My MO did ask that I keep my port for at least two years due to being Her2+, and I still have it due to other surgical distractions, but he has now said it should come out. I do receive Prolia injections every six months from my MO due to density issues related to chemo and Femara/Arimidex, and he suggested that we would do the Breast Cancer Index test at the five year mark to help determine if I should stay on anti-hormonal therapy or go off. I don't believe that I will move to once a year appts. with my MO as long as I am on any meds he is prescribing, I will be seen every six months for at least the next year. I have had an abundance of surgery due to reconstruction issues so am seen routinely by the plastic surgeon and also have an annual appt. with the breast surgeon - mostly due to so much surgical intervention.

Anonymous · December 2015

I was in a clinical trial where I got Kadcyla after neoadjuvant and surgery, so for nine months I was seen every three weeks for blood work and for a physical exam. I finished my trial, did follow up bloodwork and my onc told me he'd see me in six months. I was surprised that it wasn't three months, but fairly happy about it. I see my BS or her nurse every six months. Haven't had recon yet, but a PS will eventually be in the mix. Saw my RO a few times after rads but not since spring or so. Saw PT for the first time in a year recently due to LE symptoms. Also, see my gyn and derm every six months to monitor for secondary cancers (my choice). Port still in, but I am too paranoid to get it out. I get it flushed when I get my Zoladex (every four weeks).

No full body scans since DX. Echoes every 12 weeks during treatment. Alternate mammo and MRI every six months

mye · December 2015

Barredowl, many thanks for the links. I found them useful.

SpecialK, thanks for your always thorough responses. I don't think my Onc is planning to do full body scan or MRI after last herceptin. I think I will press him to do order one though. I had a full body PET scan prior to chemo but no scans since expect an MRI or the chest midway through chemo. It is interesting that your Onc wanted to keep the port in 2 years after herceptin. I haven't had that talk with mine yet, but I know he wanted me to keep it during herceptin.

Kbee, thanks for chiming as well. I think I will not be able to do a brain MRI until the TE's are out. It is something that is preoccupying me quite a bit. Congrats at making it through 5+ years!

Bad_at_Username, it must have been quite a readjustment from being seen every 3 weeks to every 6 months. I'm glad it was a relief for you. I can imagine having mixed feelings about it, like I am starting to have as my last radiation treatment is coming up and I feel I need to gather some courage (or beg for more radiation :-

Anonymous · December 2015

I have my onc's email address and I live close enough to my big cancer hospital that if anything bad happens symptom-wise, I can get care. I've actually been emailing my onc lately about the SABCS reports on Neritnab. If there's new research to discuss, I stay on top of it, but if it's just general monitoring, I prefer not to have to go in.

I am glad that my Onc and BS are on a different schedule though. I will see my BS after the new year and might ask for a scan then (a few mild but concerning symptoms recently)

Follow up Post Chemo & Surgery?

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