Confusing Voicemail Message from Onc
 

I had an MRI of the liver and pelvis region done last Tuesday. Message from oncologist last night - "nothing horrible, but maybe a little growth". I have an appointment tomorrow to discuss plan of action. (She's had me on xeloda and herceptin so that if it fails, I can qualify for the TDM1 trial). My husband feels that maybe she thinks it may have grown between the time of diagnosis and start of treatment and that they're not sure if it's stable or truly growing.

Anyway, just wanted to vent. How can growth be NOT horrible? THIS STINKS!

Re: Confusing Voicemail Message from Onc
 

Hi Penny,
I'm glad you have an appt tomorrow, so you won't have to bear the worrying much longer! It sounds like your once is not panicking, so try not to hit that button either. You need more information.

I've found that I view information differently than my oncologists. To me, anything short of NED, shrinking or stable stinks. To them, I think they take a wider view: is the disease basically under control? Is there an imminent crisis? Is the change significant, or even real - or a function of a difference in measurement because scans are not clear?

Someone once told me if your oncologist is happy, you should be happy. I guess I've also learned to scale that down to if my oncologist is not too worried, I shouldn't be either. Most of the time, anyway:) Not always easy to do, for sure. And of course even though they care, nobody cares as much as you do!

Try not to worry, write down all your questions for tomorrow and go on ready to take on whatever.

Please let's know what you find out - were all pulling for you!

Re: Confusing Voicemail Message from Onc
 

HI Penny,
I think that Chrisy's advice is very wise- it always is ! ! !
If you prefer more detailed messages from your oncologist (you might want to think about whether you really do or would always prefer to talk to her first about more details) talk to her about that.

Re: Confusing Voicemail Message from Onc
 

Penny,

Telephone message is always confusing. My first 'horror' experience was the phone call from my neurologist's office concerning my CT scan in summer, 1990. He wanted to see me the next afternoon, according to the receptionist.

I thought nothing about it until my boss pushed me to find out what it was about. "They must have found something if he wants to see you right after your scan. Call his office and demand an answer!" I followed her 'instruction' but couldn't get any more information as the doctor was not available and his nurse was not allowed to give any information.

When we saw the doctor the next day, he started out by saying: "Good news and bad news - bad news is that you have a brain tumor and it's very big; good news is that it is operable and most likely is benigh because the center is calcified..."

So I fully understand the torture you are going through after that confusing voicemail message from your oncologist. I think she understands the situation and that's why she revealed a little bit information. Even though it's a 'positive' add-on, to us patients it's still like "No news is good news!"

Take a couple of deep breath whenever you feel the anxiety. Dr. Gopal Guttikonda saved my life by advising me to seek out a new neurosurgeon in town. "I would not recommend anyone but Dr. Charles S. C. Chang..." I believe you've got a dedicated doctor on your side as well.

Re: Confusing Voicemail Message from Onc
 

The oncologist is now looking into 2 different clinical trials. Either a PARP trial or the T-DM1 trial. Since herceptin failed me she's thinking of attacking it with a parp inhibitor, which destroys DNA. (AC completely obliterated the large tumor in the breast, and AC target DNA). If I do the T-DM1 trial first, I can never do the PARP trial. On the other hand, with the PARP trial, I wouldn't be taking any HER2-targeting meds. We should know more within the week.

I pray that the Lord continues to guide all involved with this new decision we face.

Hey, at least we still have options! Praise God for that!

"Do you not know that your body is a temple of the Holy Spirit within you, which you have from God? You are not your own; you were bought with a price. So glorify God in your body." 1 Corinthians 6:19-20

"Fiddle dee dee. I'll think about that tomorrow" - Scarlett O'Hara

Re: Confusing Voicemail Message from Onc
 

Penny,
Hope you get an answer soon. Yes, there are always options. Thinking of you.