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MicheleS

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Reply with quote  #1 
Hi everyone~

I met with my oncologist last week and he wants to do a PET and brain MRI as soon as chemo is done.  Then, he wants to continue with them every 3 months for 3 yrs.  (Then 2X a yr for yrs 3-5.) Isn't that a lot? Should I be concerned that there's something brewing (like bad tumor markers) that I don't know about?? 

Jeez... I can't stop worrying this week (well this YEAR!)...

Gina, Edge~ Any insight on the frequency of scans?? Should I be worried??

Michele


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Reply with quote  #2 
Well Hot Damn! Michele you have an onc with a clue!
YES YES YES!!!!
This is the ONLY way to go.
I can't tell you how many girls have to fight for scans.
You have a proactive, protective good onc there!
Nothing to worry about- you are in GOOD HANDS!!


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MicheleS

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Thanks Gina.  I literally had an anxiety attack worrying about this yesterday.  I *know* that he wouldn't keep anything from me but I couldn't help but wonder if he had done tumor markers and they had gone up or something...  I'm having such a terrible week with the crying/stressing/anxiety.  It is really, really bad for some reason...

Michele
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Reply with quote  #4 
((Michele)) you have a good onc. That alone should give you reassurance... but I understand what you are feeling so much...
I was just talking to another sister about this....
I will share what I wrote to her

The best reassurance I can give you is myself. I thought I would not survive the first year after tx. I even gave away a ton of my stuff. I was so afraid of recurrence that it consumed me. But then one day I realized I was living in a state of fear and not living in the world, day to day, enjoying each moment I had. It took a long time to get there, because we have to heal inside. Our spirits have fought too, and it takes a while to recoup your inner resolve. But I forced myself to look forward, not back. To do whatever I could do to help myself stay healthy, and the years passed, cancer free. I am almost 8 years NED from TNBC. My second BC was a new primary that had nothing to do with the first one and was most likely caused by the birth control pill I was on to prevent ovarian cysts.
I have days where I feel just like you and then I remember, if I spend my time doing that I am robbing myself of happiness.

I was first dx'd a couple of days before 9/11 and I was in NYC that morning, the first plane flew over my head and I saw it happen. All the people in those buildings and on those planes didn't have a chance to fight - and I realized I did. That is what gave me my strength. We have had a glimpse of our own mortality because of our dx's and we can use that to live the best lives we can.

Let yourself heal... and then give yourself permission to survive. SOMEONE has to make up the positive percentage points of those crazy stats- Why shouldn't it be YOU????

I really believe in this - Michele, you have done everything you can so no regrets.... just move forward- head up, looking forward to a full and beautiful life ahead of you!

Love
g


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mommaj

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Reply with quote  #5 
gina,

so well put. you write what all of us feel in our hearts but cannot express...
thanks for getting me out of the "waiting room"


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"And which of you by being anxious can add a single hour to his span of life?...Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble." Matthew 6:27,34
Jennine

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Reply with quote  #6 
Michele,

I have the same dx as you. I know how you feel and I too have the fear of recurrence. It's not consuming me though, not today anyway,only because I won't let it. If I thought about mets all the time it would take on a life of it's own. I would have myself buried already. Now..I don't know it's going to come back, in fact there is a VERY GOOD chance it WON'T, far better then a very good chance it will. So knowing that calms me down and allows me to put it OUT of my mind for a time. It then creeps back in and when it does, I do the same thing...good chance it won't, good chance it won't. Gina is right.. we know worrying does no good, none at all, it does rob our lives. It takes away our joy. When the fear creeps in try and shift your focus on something that brings you happiness.
When my kids were small and would get upset about something I used to tell them to think "happy" thoughts..they still remember me telling them that and from time to time bring it up and laugh..but they forget, it used to work and they would stop crying.

When I was a little girl, all by my little self, I would take my wagon and go up the street to another block where there were so many huge oak trees. They looked so gigantic to me then...I used to look for the empty locust shells attached to the trees. I would pull them off and put them in my wagon and take them home. I don't remember why I did that but I do remember how I felt then, carefree, happy, full of energy and adventure (I'm still like that today)
I love the pic Gina posted of herself as a little girl. She wrote, "still feeling like this" under the pic. I do understand..because I still feel like that little girl pulling the wagon. When I am feeling anxious and fearful of the unknown, I pull out those memories and they comfort me and calm me. Lately, more then ever, I've been thinking a lot about my childhood. I think it's because I miss that innocence, everything seemed so simple then and if a problem did arise, mommie and daddy took care of it. No wonder I'm going back to those memories a lot lately, no wonder.
It's only a suggestion Michele to get to another place, a place that is free from fear and worry about the unknown.
My dog Jack, he lives in the moment, why can't we? We can learn a lot from our pets...they don't judge, they love unconditional, and they don't hold a grudge, but mostly, they live in the moment..so no anticipatory anxiety, ahhh the freedom. 
My onc is giving me the same treatment yours is giving you. You are in good hands indeed.  I am going to have the Avastin too..with my AC treatment. I think they give it right after that first infusion. I agreed to it because I felt it was the best I could do to give me the best chance.
Never lose the faith,
xoxo Jen

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MicheleS

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Reply with quote  #7 
Gina and Jen,
Thanks.    You are both so right!!  Today has been better.  I was just having a rough spell.  I think it had to do with *almost* being DONE.  I never would have guessed that I would feel worried about that.  It is almost like when chemo is over, I was worried that I'd be done fighting.  So not true!!

So, like a good little control-freak, I placed a HUGE vitacost order as per Edge's CAM guidelines.  I feel better already.

Michele

PS. I think he needs to add CoQ10 to his list.  There have been several NCI-supported studies that not only incidate cardiac protection from the effects of Adriamycin, but also protection from recurrance.  I'll do a pubmed search later today or tomorrow and post a link to the biggest non-animal study.  The human dose is somewhere between 100-300 mg per day. 
MsBliss

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Reply with quote  #8 
Do you know the dose recommended for the boswellia supplement re Edge's CAM guidelines?  Also for the whole grape extract?  I am taking one capsule twice a day, but don't know what we should be taking as a "boost".

Quote:
Originally Posted by MicheleS
Gina and Jen,
Thanks.    You are both so right!!  Today has been better.  I was just having a rough spell.  I think it had to do with *almost* being DONE.  I never would have guessed that I would feel worried about that.  It is almost like when chemo is over, I was worried that I'd be done fighting.  So not true!!

So, like a good little control-freak, I placed a HUGE vitacost order as per Edge's CAM guidelines.  I feel better already.

Michele

PS. I think he needs to add CoQ10 to his list.  There have been several NCI-supported studies that not only incidate cardiac protection from the effects of Adriamycin, but also protection from recurrance.  I'll do a pubmed search later today or tomorrow and post a link to the biggest non-animal study.  The human dose is somewhere between 100-300 mg per day. 
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