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recurrance

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi,
Just a quick question. I have a recurrance of my ca. This is the third time round for me. It was discovered by my elevated TG. I cannot have a WBS until mid Nov. so Now I just have to wait. I am finding it hard to wait and not know where in my body the ca had returned to. Anybody have a long wait to find a recurrance location. The Dr is making me wait 3 months for the WBS because I had to have a contrast ct.My last occurance was 14 years ago and I was treated with RAI for mets. Thanks all..

lynn2318
Posts: 41
Joined: Jan 2010

What type of thyroid cancer do you have? Why are they waiting so long for the WBS? I had Stage IV papillary. I am 2 years post surgery and have had 2 RAI treatments. My tg is currently 2.4. Thanks for sharing.

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi,
I have pap/foll type. I was first dx in 1977 and had recurrance with mets in 1995. Now, based on my elevated tg I have another recurrance. I have had an ultrasound of my neck, pet/ct and ct scans. The Drs are still trying to figure out where the recurrance is. One of the ct scans showed a small mass in my medistinum area. Unsure what it is. It did not light up on the pet scan.
The reason that I have to wait till mid Nov, for the WBS is that with the ct scans I was given iodine contrast. The Drs said it takes at least 3 months for the large amount of iodine to leave the body.
I had to have the pet/ct because the Drs are thinking that I may also have lymphoma. They felt that it was really important to have the pet and contrast ct and wait till Nov for the WBS.
I am having such a hard time with all the waiting and all the tests.Not knowing is the hardest part.

lynn2318
Posts: 41
Joined: Jan 2010

Thanks for sharing. I am sure waiting is awful. I try not to dwell on my cancer but it is hard not to. Before every doctors appointment I am scared. I wish your doctors would not wait so long. Take care and I wish you all the best.

alapah's picture
alapah
Posts: 255
Joined: Oct 2009

I had to wait three months as well, for the same reasons. I know how that feels and it can do a number on emotional well being.But the waiting is necessary and increases the likelihood of success. I did the low iodine diet in overkill mode - for about 4 wks prior - figuring anything I could possibly do to increase the effectiveness was good for me. My advice would be to try remain active and focused on the here and now and on positive vibe things as much as possible. Know that others like me are thinking good thoughts for you and you can make it through.

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi alapah,
Thanks for the kind words. I am doing okay with the waiting till Nov. It's all the other stuff that is really hard. Lymphoma and needing a knee replacement. Of course the knee is the last on my "to do" list. I also found out from one of the ct and the pet scan that there is something on my ovary. So, that is also keeping me busy with tests etc. I am positive about life right now, it's just really hard at times. fatigue and pain are a bad mix. I have a great husband and that really helps...
Have a great weekend..

MLG
Posts: 52
Joined: Mar 2010

I'm also waiting for a confirmation of recurrance.
The testing has been going on since March and like you said, the hardest part is not knowing and the waiting.

I am now due to have a biopsy (after 2 body scans, bloodwork and sonogram), which they said they have to pass it by my insurance first, then make the appt. And then you have to wait a week or so for the drs appt for the report.

Very frustrating!

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