> I wish I found this group a month ago. Just last month I was diagnosed with
> papillary thyroid cancer. Since then I have had a thyroidectomy and am
[quoted text clipped - 5 lines]
> for preparation when I am finally home.
> If anyone can point me in the right direction I would appreciate it.
Hello Jacqui and welcome to alt.support.cancer
We usually have two thyroid cancer patients here.
Perhaps Jill will peek in soon and see your post.
I'm not an expert; there's so many types of cancers on this newsgroup, that it's
hard to keep track of each and their treatments.
As best I can recall, the biggest problem with RAI is going without thyroid
hormone, in preparation for and during the RAI treatment. Then waiting for the
thyroid hormone to kick in, once restarting the medication, which can take a few
weeks to a month before hyper or hypothyroid symptoms to improve. But since
you've not been on thyroid hormone yet, you'll not notice.
Here's what the BC Cancer agency says
http://www.bccancer.bc.ca/PPI/TypesofCancer/Thyroid/default.htm
Radioactive Iodine Therapy
May be used to destroy any remaining thyroid tissue or to treat recurrent
disease or metastases.
Only papillary and follicular cancers will take up iodine and only 50% or less
of these tumours will take up iodine in sufficient quantities to be
therapeutically useful.
Patient has to be off thyroxine for at least 4 weeks and T3 for at least 2 weeks
before an iodine scan or treatment will work.
Radioactive iodine is given as a drink, patients have to stay in hospital for a
few days after a therapeutic dose to allow the radioactivity to fall to safe
levels. Scans are done as outpatients.
Side effects include possible temporary bone marrow suppression, inflammation of
salivary glands, nausea and vomiting.<end copied text - there's more there about
radiation therapy and thyroxine replacement>
I sometimes take a peek at the thyroid newsgroup. I wondered what took you so
long to get here. :-)
But then I thought maybe you'd joined the list that some, on that newsgroup,
referred you to.
Seems to me that Canada does radiation therapy to prevent local recurrence, in
circumstances such as yours.
Steph just posted this, earlier this week.
His quote starts here..
"Our policy here is external beam radiation after surgery and radioiodine if:
1) Multiple nodes are involved, especially with extra capsular extension
2) If the primary has extended outside the thyroid and invades the surrounding
tissues
3) If there is residual disease after surgery
Local control is an important issue in well diff thyroid cancer.
There is little evidence that external beam improves survival, but it certainly
improves local control.
Steph's quote ends here..
I want you to ask about external beam radiation therapy.
Having multiple surgeries, is no fun.
Jill and anita would be able to tell you that, so I'd want the best possible
treatment in order to maximize the chance of getting it all, first try.
Ask questions, vent, keep in touch,
when's the date?
Hugs to you,
J
MissJacqui - 27 Feb 2005 22:36 GMT
Thanks for the reply J,
I see you have seen me on the thyroid newsgroup, it just took a while for me
to come to this group because until now, I could easily ignore the fact I
had cancer. They thyroid group although not having much info about cancer
patients, did get me to someone with Thyca and my questions were answered
today.
Thanks.
>> I wish I found this group a month ago. Just last month I was diagnosed
>> with
[quoted text clipped - 87 lines]
> Hugs to you,
> J
J - 28 Feb 2005 23:49 GMT
> I see you have seen me on the thyroid newsgroup, it just took a while for me
> to come to this group because until now, I could easily ignore the fact I
> had cancer. They thyroid group although not having much info about cancer
> patients, did get me to someone with Thyca and my questions were answered
> today.
Glad you got answers.
Best wishes,
J
anita - 25 Mar 2005 08:48 GMT
Hello Jacqueline
I just checked in today and saw your post. I suppose its too late to talk
about your RAI. I hope I went OK. Please let me know if there is any info
you would like. One thing that did help with the RAI thing was chewing on
lots of ginger candy - apparently keeps salivary glands churning out saliva
so they dont retain too much RAI to damage them. Apparently worked, apart
from a little loss of taste which I experienced about 8-9 months after the
RAI, my salivary glands seem to be fine.
J, as I said I may not be checking into the group that often till I'm back
on track with life/work etc., (getting there slowly :) ), but if anyone
needs to talk about thyca, I would not mind at all if they wrote to me by
email. I'll post followups to the newsgroup, but reading all the posts
still makes a little shaky and reminds me of stuff...
Anita
J - 05 Apr 2005 11:26 GMT
> J, as I said I may not be checking into the group that often till I'm back
> on track with life/work etc., (getting there slowly :) ), but if anyone
> needs to talk about thyca, I would not mind at all if they wrote to me by
> email. I'll post followups to the newsgroup, but reading all the posts
> still makes a little shaky and reminds me of stuff...
Hi Anita, sorry I'm so late replying.
Thank you for the offer. I just checked and saved your email, so if someone
asks about thyroid, your offer is very generous.
There's also BJ and her list, but I will definitely keep your offer in mind.
Thank you, luv
Stay well..
Hugs
J