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why changes in doc visits after a year from last chemo

Heidels profile image
8 Replies

For the past year, I have blood work done and scans and so far, so good. I see my doctor every month to go over the findings from these tests. I was now told I can come every 3 months now instead of monthly but I still need labs done every month. WHY 3 months now? Do they think recurrences are less likely to happen now since a year has passed with good results? I was also asked if I wanted my port removed now as well. This all sounds great but why, after a year do they change things? Not sure if port should go now but if I keep it in and they stop flushes/treatments because of lockdowns again, a risk of infection could happen by not having it flushed.

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Heidels profile image
Heidels
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GwenHP profile image
GwenHP

It seems that every practice has its own protocol for how when and how often to see patients that are NED (no evidence of disease). The most common scenario that I hear is after someone reaches remission, they see their doctor every 3 months for the next 1-3 years. They progress to seeing their doctor once every 6 months. And somewhere between 5 and 10 years out they start seeing their doctor 1x year. But you can find all sorts of variations to that schedule. I would talk with your doctor about it if you feel you are seeing him too frequently or not often enough. It does seem to me a little unusual that they are still doing monthly labs. But then I don't know anything about your particular situation - what kind of ovarian cancer you had, what your CA125 numbers were/are, what other mitigating factors might make you a candidate to be monitor more closely. Like wise with the port. I've heard of women who can't wait to get it taken out, and others who keep it in for "good luck" fearing that they will jinx themselves and fall out of remission. Doctors also have differences of opinions as to when ports should be taken out. In the end, it's something to have a discussion with your doctor about and ask why he proposes one choice over another.

Best wishes and stay safe,

Gwen

delia2 profile image
delia2

Hi. I agree with Gwen about normal practice. I would keep the port if I were you. I think recurrence is most common within two years. But your doctor presumably knows best. I hope you stay ned forever.

Catcher910 profile image
Catcher910

I haven't had anyone suggest I could/should have my port removed, and I am fine with keeping it forever. I've been fortunate in that it still works like a charm even though it's accessed only every 3 months with no interim flushes. On the other hand, a friend who underwent treatment for breast cancer couldn't wait to have her port removed. But since every procedure has risks, and I say why take any risk you don't absolutely have to? Just my 2 cents. Btw, I'm 2-1/2 years out from my diagnosis of Stage III ovarian cancer. I still get labs and CTs every 3 months because of having been a part of a clinical trial (which I failed due to severe side effects.) The trial protocol is a continuation of every 3 month testing even though I'm no longer an active participant in the trial.

Archeveritas profile image
Archeveritas

I think a good protocol is to get your ca125 when you get port flushed every 3 months. I’ve had mine for 3 years. My doc will not remove it yet. My friend had hers removed after 5 years. My insurance won’t cover any scans because I show no symptoms. So much for maintenance. I see my gyneonc every 5 months. Like Gwen said, there are variations in every situation. Work with your Doc on a schedule you are both comfortable with and what insurance will cover. Stay well!

Heidels profile image
Heidels

Hi, thanks for your reply. I get my port flushed monthly. I have mentioned to my doc that I read some are now flushing ports every 3 months, but she says 3 months is what they do.Not sure if it would be ok to wait 3 months and sometimes I think they want to do every 1 month because they can charge each time. I still have my labs done monthly but my visits with doc are now every 3 months instead of one. I am unsure as to whether to keep port in or remove it now. I fear another covid shutdown and then I may not be able to go and get it flushed at all. It's been a year since my last chemo and so far, scans are good. I suppose if things remain stable with me, eventually they will extend the time for labs and maybe even flushes. Who knows. Just got to do what they say, I suppose.

lovemy3dogs profile image
lovemy3dogs

I go for blood work every month because I am taking Lynparza which can affect your blood counts. I see the PA each month and the oncologist every three months. I finished chemo 9/2019. I am in a vaccine clinical trial so they check my CA125 monthly to make sure it hasn't gone up. CT scans every three months as well. I've kept my port in because I'm superstitious. They use it to draw blood on a monthly basis so it gets flushed but I have, on occasion skipped the port and went with IV. The vaccine will be used if anything shows up. Till then, it is there if I need it. (Hopefully I won't.)

Heidels profile image
Heidels in reply tolovemy3dogs

what is the vaccine trial all about?

lovemy3dogs profile image
lovemy3dogs

It's going on at Mayo. They make a vaccine based on your tumor, made just for you. There is certain criteria and tests required. I'm BRCA1+ but I'm not sure if that matters. Should anything show up indicating your cancer has returned, they start the vaccine. If it doesn't seem to be slowing the progression, they discontinue and resort to chemo therapy.

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