Nervous about CT and Bone yes, but no PET Scan

[Odette]

Hello Friends,

I've been sitting on this problem for a week and would like to hear your opinion about it:
When last week I saw my oncologist he ordered the Bone and CT scan to be done early July, and when I asked him why no PET he said: 'It does not give me any extra information'. And that was that.

Background: January 2007 when my lump showed up in my neck (cervical lymph node) my radiation oncologist ordered the Pet scan which showed two uptake areas. Then this was radiated and I was considered NED. It was planned that I'll have scans every 3 months.

I had my second set of CT, Bone and PET scans in early April, which all came back at large negative except the other side of my neck lit up now on the PET scan. Had to go see an endocrinologist had thyroid ultrasound, thyroid biopsy which came back inconclusive - which means surgery :( . (The possible thyroid cancer is most likely unrelated to the BC.) Anyways, they recommend me to have thyroid surgery, which I'm postponing so I can do the Xeloda and Tykerb first.
I really counted on having the PET scan in July just in case ... If there is possible progression it would be good to know. If the thyroid area cleared up that would be even better. Maybe I won't need the surgery then :)
I just don't know how to approach it with my oncologist. He probably thinks fewer tests less anxiety. I feel on the contrary.
What would you do?
Would you insist on the PET or just try not worry?
Should I call my radiation oncologist? She would probably order the PET scan...
I could call my second opinion MSKCC oncologist ask her about it, but hate to go against my local doctor's advice. I guess I don't want him to feel like I don't trust him. Hmmm.

Please let me know what would you do?
What is your testing schedule? (Especially if your situation is similar to mine.)

Thank you friends,

Odette

[mamacze]

Odette,
Why do we second guess ourselves?
If you are feeling you need another PET scan, than you ask for it again. It is certainly logical...the last one showed a change...you need another to compare to the changes and to your baseline. If I were you, I would call my onc back and say just that. If he still digs in his heels, just thank him and call your radiation onc for another opinion. If they still say no, go for another opinion at MSKK and if they agree with you; re PET scan, than it is time for a new oncologist...(and get the PET) and remember; you are paying them...dialogue with them!
Good luck Odette and let us know how you make out.
Love Kim from CT

[SoCalGal]

Hi,
I am scheduled for a PET july3rd - it will be 3 mos since starting on ty/xe. My onc said that I should wait the 3 months - he said that if I went at 2 months it could be non-definitive. (I thought that women were scanned at the 2 month mark in the clinical trial but he said it would be better to wait the extra month. Also, my markers were dropping so he felt that was a good sign, and a reason to stay the course and wait for the scan.)

I think you should just call you ONC and tell him that you would feel a lot better having the complete PET scan. I'm sure he won't care. I doubt he'll take it personally.

I have met so many stage 4 woman lately - we are all pushy and that's why we're still here!

xoxo Flori

[Odette]

Thank you Kim, thank you Flori for your quick response!
It would be easier not to ruffle the waters but when is the right thing easier?
I'll make those calls on Monday.

Flori, I've been on the T/X only for two months, but the scans would be 3 months from my last ones in April.

Hope yours are PERFECT on July 3rd.

Let you know what happened,

Fondly,

Odette

[Carolyns]

Odette,

I recently had a time when I was uncertain with the conclusions my doctor decided upon. Basically, I was told that we were going a certain route and I asked a couple of questions went home and began second guessing the choice made for me. I am a person that must buy into and understand the process and path that I am taking...whether it testing or meds. So, as a result I requested to see my doctor again, I told the doc that I did not understand the methodology and that going down a path without understanding the thought process was giving me anxiety. I said, "Please walk me through your thought process on selecting this...next step and not some of the others we could have taken...whatever the other next step would have been."

My doctor sat down and fully explained the thought process. I asked the "why's and why not and what about ...". I went well prepared with a list. Every question was answered and I felt empowered and confident when I left.

I hope that you can find the same peace of mind.

Best wishes, Carolyn

[Odette]

Hi,

Your note was very helpful. I did ask my onc about the Pet scan and he explained that every three months the CT and only every 6 months the Pet would be sufficient as long as I remain in remission. Also he said that he really did not expect it to show anything. Now this is the past.

The CT showed lesions in my lungs and quite extensive lymphadenopathy. I'm not crying I'm not angry not depressed I just really want to figure out what to do to put me into remission.
I have not seen him, only talked to him since this news, but he said he will have me scanned again in 4 weeks giving Tykerb /Xeloda another month to work. I think I'm going to ask him to at least add Herceptin to it.
Carolyn, you are on Tykerb and Herceptin, right?

Best,

Odette