#96478 06-01-2009 07:39 PM | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Has anyone been diagnosed with Toxic Multinodular Goiter? Dan's blood test came back showing hyperthyroidism. After some testing it was determined that there are several nodules on his thyroid that are causing the hyperthyroidism.
His endocrinologist said these are likely from the RT treatments. The bottom line is that there is a choice of treatments. One option is radioactive iodine treatments and the other is to have the entire thyroid glands surgically removed.
Just curious if anyone has experienced this and which option they selected.
Margaret
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C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Margaret, Im sorry to hear of Dan's diagnosis. Its good news that you have finally found out whats wrong so it can be corrected. Hope someone here can help with info as to your options. Best of luck to both you and Dan that this is something that is easily fixed.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Margaret,
Sorry about Dan. I have never heard of that as most of us that have thyroid problems post radiation is HYPO not HYPER and to discover this almost 2 years out is just unusual I guess.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | I would just get rid margaret,as long as his neck skin is up to more surgery that is.
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Hi Liz,
Why would you get rid...the doctor tried to explain these options to me but it was a little confusing...too much new terminology. Have you heard of this condition before?
Margaret
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C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Oct 2008 Posts: 40 "OCF Canuck" Contributing Member (25+ posts) | | "OCF Canuck" Contributing Member (25+ posts)
Joined: Oct 2008 Posts: 40 | [quote=mhupe]Hi Liz, Why would you get rid...the doctor tried to explain these options to me but it was a little confusing...too much new terminology. Have you heard of this condition before? [/quote] I'm not Liz but I do have something to offer on this topic. My late sister had her thyroid treated with radioactive iodine back in 1989 and developed leukemia a year or so later. There is some suggestion that secondary cancers can be caused by too high of a level of radioactive iodine. Here is a link that you may wish to read: http://www.mythyroid.com/radioactiveiodinecancer.html | | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Mike,
Thank you for the reply and the link. It's frustrating to weigh the pros and cons when there are options...especially in an area you know little about.
The surgery didn't seem all that straight forward and the doctor mentioned possible long term nerve or muscle damage as a potential side effect. However, he did not mention the link to radioactive iodine and cancer. I will revisit this with him.
I am sorry about your sister.
Margaret
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C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Oct 2008 Posts: 40 "OCF Canuck" Contributing Member (25+ posts) | | "OCF Canuck" Contributing Member (25+ posts)
Joined: Oct 2008 Posts: 40 | [quote=mhupe]Mike,
Thank you for the reply and the link. It's frustrating to weigh the pros and cons when there are options...especially in an area you know little about.
The surgery didn't seem all that straight forward and the doctor mentioned possible long term nerve or muscle damage as a potential side effect. However, he did not mention the link to radioactive iodine and cancer. I will revisit this with him.
I am sorry about your sister. [/quote]
In the end it's a decision you have to be comfortable with however your decision should be an informed one. My sister's treatment was 20 years ago and I would guess that they would be more careful at this point in time.
Good luck with your decision. | | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | It's hard. Doctors study this stuff their whole lives and yet they leave the final decisions to us lay people...and we are left worrying that we might make the wrong choice.
I couldn't get through to Dan's doctor today but am hoping to talk to him tomorrow. Again, thanks for the link and the information.
And, I am so sorry your sister's life was cut so short.
Margaret
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C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Margaret, Any chance you could ask your husband's oncologist his/her take on the situation? It wouldn't hurt to get a few opinions on the different treatments. The thyroid is a crazy gland and he will probably need to be on meds for the rest of his life if and when they remove it. My daughter has been on meds for 3 years now due to hypothyroidism. It's just a tiny pill but it must be taken everyday without fail. Good luck with your info hunting!
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
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