What tests do you do after treatment is over?

not · June 2015

Hi Ladies,

I had Her2 +++ that spread into nodes under my arm in 2011, and I did 2 chemos and Herceptin. After that there was NED. I was getting cancer markers checked every month while I had a port flushed, but I had it removed and now there's no testing. Feeling insecure.

I take curcumin, resveratrol, and some other supplements, but no drugs. (Search PubMed and see how many cancers curcumin heals.)

Recently, a young beautiful doctor I worked with found out her HER2 +++ cancer came back, was immediately put into hospice, and died a week later!
She had found her cancer early, a year or so ago, and did all the treatments.

I don't want to die without any warning.
I want to know ahead of time so I can quit working and travel. I can't afford to do that now, but if I was dying, I'm sure work and family would help me enjoy the last few months I had left.

Are there tests you know of that can detect it before it's too late? I had a mastectomy on one side.
How often do you get tested, and what kind of tests? We don't want too much radiation.
What kind of symptoms should I look out for?

Thank You.

Gina

Moderators · June 2015

Hi Gina!

We don't have much advice for you, but we're "bumping" this thread so that others can see it and weigh in.

We hope this helps!

--The Mods

NeverForsaken · June 2015

First of all let me say how sorry I am for the loss of your friend, Gina.

I'm probably not the best one to answer your question completely, as I am only now (Monday) having my first post treatment MO checkup' but what I have learned thus far, is there does not seem to be any one standard of treatment for this disease, there are simply too many variables, not only in the individual diagnosis, and treatment plans, but also it seems to differ according to who your MO and/or other doctors on your care team. We are very much individuals on the cancer front!

My Mo never did scans post chemo (I had adjuvant therapy and Herceptin) except for a brain MRI because of certain symptoms...which ended up being attributed to a BENIGN brain lesion. Now, after six months past my last Herceptin infusion I am getting my first (base-line) CA27.29 blood marker test, whilst many have already had that test ahead of treatment.

Also, new studies are always producing new information regarding whether or not some treatments, considered standard in the recent past, are actually beneficial in improving overall survival rates; such as sentinel vs axillary node dissection/removal. My MO and surgeon consulted with the board regarding my case as that study was changing treatment plans around the same time as my mastectomy surgery, and I did not have the axillary nodes removed even though most of the others who had similar dx as I did had them removed. (I am still a bit nervous as to whether they made the right call on that one).

Unfortunately we cannot always know the hour of our death, but I totally understand what you are saying...I too, want time to plan out how I will live out those last months...Just think of all the folks who die suddenly from heart attack, or stroke, or car accidents. Personally I just try to do the best with what I have one day at a time and am thankful for each day I wake up, because there are no guarantees...not even our next breath is guaranteed.

I hoped I helped, and did not add more confusion, lol!

Loopy

Sorry, if I did...I feel like the poster child for chemo-brain some days.

Spookiesmom · June 2015

I have regular blood draws, and that's it. But a few months ago my lumbar went wonky. I waited 2 weeks, then went to my PCP, who ordered a MRI with no hesitation. Thankfully, turned out to be an old problem getting worse, no ca.

It seems to be normal not to have further tests unless you have symptoms. You do feel like you're drifting after the intensity of treatment

What tests do you do after treatment is over?

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