PET

[Suzanne333]

Had a PET scan on Tuesday , only 5 days ago.

Anyone have any idea as to when I might get the results.

Hoping all you lovely ladies are doing ok. Xxx

[Jessica-DianeB]

Good luck with the results Suzanne, hoping it's clear despite your rising CA125, you never know! Xxx

[Suzanne333 in reply to Jessica-DianeB]

Hi Jessica.

Aww thank you. It's horrible waiting. I'm guessing they will see something on the PET. Scan. I had a blood test last week so if my CA125 is still going up and there's nothing on the scan then I don't know what the next steps will be.

I hope everything is ok with you. Xxx

[Jessica-DianeB in reply to Suzanne333]

Possibly watch & wait scenario if you feel well enough and nothing is seen?!My markers are 130, nothing on CT ( in may ) not offered PET. But told they wouldn't offer chemo until there was something to see on CT. ( burdensome scenario! )

Are you on Avastin? I recall you are BRAC positive? If so perhaps there is something more suitable for you. Thinking about you, keep us posted xxx

[Suzanne333 in reply to Jessica-DianeB]

I was in avastin. I had 13 out of the 18 but they stopped it as my kidneys were being affected. Had too much protein in my urine too many times. My CA125 was rising whilst on avastin. Xxx

[Kryssy]

Hi Suzanne. Don't know about UK as I'm in France but had my PET and saw the onc two days later. I was given the scan to keep as we all keep our medical papers here. Sometimes not a good thing as I couldn't resist looking at it and the report and found out that I have stage 4B. I didn't really want to know. Still, come to terms with it now and moving forward.

Hope you get a good result soon xx

[Suzanne333 in reply to Kryssy]

Hi

Thank you. I'm hoping to get the results this week. Just hate waiting.

Xxxx

[Maxjor]

Suzanne--any chance you could call your main oncologist and ask if he/she would be so kind as to ring you when they get the results? I have to wait about a week if I don't do anything but if I call/plead in person to please please call me as the waiting is hard, mine did call me on two occasions. Much sooner than I would have known otherwise. Wish they knew what the waiting was like!!!!

[Suzanne333 in reply to Maxjor]

Hello.

Yes I will phone them maybe Tuesday as it would have been a week by then.

Could they tell me over the phone or do you think I will probably have to have an appointment to discuss it all. Xxx

[Maxjor in reply to Suzanne333]

The doctor, I believe, CAN tell you over the phone. The rest of the team I don't believe is allowed as they may not know all they need to from the scan (or its just not allowed). My oncologists (I have had two) both told me results over the phone. I'm in the states though and not sure if there are different rules per country or even hospital.

[Suzanne333 in reply to Maxjor]

I can ask. They can only say no.

I'm very nervous about the results. I keep thinking they might tell me I've only got a few months to live. I know that's silly as the CT scan didn't show anything but I'm

Thinking the worst xx

[Maxjor in reply to Suzanne333]

Oh how I wish we didn't have those fears and of course, your common sense is doing a good job of countering the other thoughts. I think we all have them Suzanne---you have the "only a few months to live" one and mine is "you aren't responding to any more treatments". We know it can't be but this is anxiety getting the best of us. Do something tonight that takes your mind off of it---whatever you do that you know gives you a nice mental break--I find even a TV show/series can give my anxiety a break and then I usually can stop the stressful thoughts during and after. Or give yourself 15 minutes a day to think the worst--the other hours in your day think with positives, hope, and your (obvious) common sense (which we all lose from time to time with OC!!!). oxoxoxoxoxox

[Suzanne333 in reply to Maxjor]

I guess we all have those horrible thoughts. It is mental torture.

My oncologist said that they have many treatment options for the future and if they run out then they'd send me to the royal marsden in London to see if they can do anything. I just wanted to have longer then seven months remission until my first recurrence.

It's a spiteful disease.

I hope you are doing ok xxxxx

[Maxjor in reply to Suzanne333]

I had seven months too--my oncologist (wrongly) told me she felt I would have at least two years, if it came back at all. What a blow! Virtual hand holding with you!!! ox

[Suzanne333 in reply to Maxjor]

Thank you so much. It's horrible isn't it. You go through all that for just a few months reprieve and then back on the treatment again.

Thinking of you. Xxxxx