What questions to ask after the 3rd chemo?

Posted by charlotte12 @charlotte12, Jul 16 4:02pm

I last saw my oncologist who is also the surgeon after my hysterectomy. I can post questions for the nurse in the clinic's patient portal, the answer is not always satisfactory, either too technical or I feel it is evasive. I
see the oncology nurse every 3 weeks and get monitored by weekly blood draws. I will see the oncologist before
the 4th chemo. What questions should I bring up? I'm stage 3B, 3 more treatments to go.

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lathomasmd | @lathomasmd | Jul 17 12:10pm

What is my prognosis? How likely am I to survive five years?
What kind of symptoms do I need to watch out for?
When do I get the next imaging? How often? What kind (CT, PET, MRI)?
Has my CA-125 come down? How often do you check it?
Will I be on maintenance therapy? If so, what kind? If not, why not?
When asked about survival odds, some doctors suddenly get very vague, and say things like, “Everyone is different,” or “I don’t like to put a number on it.” I had to pin mine down by saying, “I need to know in order to make arrangements if necessary.” I would spend my time very differently if I knew I only had a couple of years to live.
Some patients don’t want to know their odds of survival. I certainly understand and respect that. But if you do want to know, I recommend asking.

charlotte12 | @charlotte12 | Jul 17 1:19pm

In reply to @lathomasmd "What is my prognosis? How likely am I to survive five years? What kind of symptoms..." + (show)

thank you for your helpful response, I will use your questions, I can let you know how
he reacted when asked about survival rate. I did not ask this question after my surgery, instead
kept looking for answers on the web.

Helen, Volunteer Mentor | @naturegirl5 | Jul 17 4:07pm

In reply to @lathomasmd "What is my prognosis? How likely am I to survive five years? What kind of symptoms..." + (show)

@lathomasmd Thank you for coming up with these questions for @charlotte12. I will also add:

1. How often will I see you (the oncologist) during my course of chemotherapy?

2. What will be my active surveillance schedule after my chemotherapy is completed? How often will I be seen?

3. I'd rephrase the survival question this way - what is the 5-year survival rate for my type of cancer and now going into my third chemotherapy treatment? In this way you are asking not only about yourself but rather asking the question about what your oncologist knows from the research literature about 5 year survival rate. (What we often see in our own searches is very out-of-date).

charlotte12 | @charlotte12 | Jul 18 7:48am

thank you - i will add your response to my list for the meeting

ccwill | @ccwill | Jul 19 6:55am

Dear @charlotte12

I trust your treatment is going well. Symptoms after my second chemo cycle were so bad, the taxol was lowered 20% to make it more tolerable by the oncologist who was sitting in for my regular oncologist. If your treatment is going well, meaning your CA 125 is within normal ranges, etc., you could ask for this help. May God continue to be with you and give you peace because whether your OS is one day, five years, or 30 years, He's the ultimate decision maker. Still, advocate for yourself. All the best!

charlotte12 | @charlotte12 | Jul 19 8:58am

In reply to @ccwill "Dear @charlotte12 I trust your treatment is going well. Symptoms after my second chemo cycle were..." + (show)

thank you for taking time to respond, I was wondering too, if some of the chemo could be adjusted, I will ask about it. I have many unnerving side effects, but maybe they can be expected, a new one is high blood pressure. My blood pressure was normal before my diagnosis. I have an appointment with a cardiologist in a week. After the first chemo, my CA125 'was in normal range, it has not been tested after that.

charlotte12 | @charlotte12 | Jul 28 6:30am

In reply to @lathomasmd "What is my prognosis? How likely am I to survive five years? What kind of symptoms..." + (show)

the question on survival odds for my cancer was not answered and as you suggested he was
evasive- I will reuse the questions when I finish my 6th treatment. He did say my prognosis is excellent.

Helen, Volunteer Mentor | @naturegirl5 | Jul 28 8:52am

In reply to @charlotte12 "the question on survival odds for my cancer was not answered and as you suggested he..." + (show)

@charlotte12 Thank you for coming back and telling me what your doctor said about survival. I agree with you that you can pull up those questions again after your 6th (and final) treatment. Since your doctor said that your prognosis is excellent I hope that helped.

Do you know about the publication called "Cure"? I subscribe and the issues come to me via email and on occasion I get hard copies in snail mail. It's at no cost and has research but especially articles written by cancer survivors. "Cure" is where I found that so many survivors have the same worries that I do. Here is the link:

Cure:

-- https://www.curetoday.com/

Will you let me know what you think of the publication once you've looked through it?

lathomasmd | @lathomasmd | Jul 29 9:52am

In reply to @charlotte12 "the question on survival odds for my cancer was not answered and as you suggested he..." + (show)

It’s frustrating when the docs insist on being vague. But to say your prognosis is excellent is fantastic! So happy for you!

charlotte12 | @charlotte12 | Aug 3 9:03am

In reply to @naturegirl5 "@charlotte12 Thank you for coming back and telling me what your doctor said about survival. I..." + (show)

I have an old magazine at home, a cancer clinic
had them as hand-outs, I have not had time to refresh 'memory, still dealing with side effects from the last
chemo treatment -

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