Esophagus Pressure

pressure
Hi Linda,
First of all, hang in there, it is normal, but very uncomfortable. I had a total thyroidectomy in 2005 and I remember that pressure, it does go away eventually. My lymph nodes are swollen so I am experiencing some pressure now, but am hoping that when the swelling goes away so will the pressure. Once your body "calms" down from everything you have been through it should subside. If it doesn't I would stay on top of my Dr. until they can get you some relief. One thing I have learned is that you have to be your own advocate and only you know your body. If you find anything that helps please share your findings with all of us.
Best wishes,
Lynne

Linda Jo said:

Hope rings eternal
Thank you for your positive comments and suggestions. The Doctors never seem to be able to give a straight answer. That's why these discussion boards are good tools for help to all of us. Had to have a biopsy yesterday on another area of my neck before I go ahead with the second RAI treatment. The Dr. thought it was a lymph node back in January, but now thinks it may be scar tissue. Will get results next week, but I think it will come back negative.

I agree with you about the necessity of being your own advocate and will share any new news with the group.

I was wondering why your lymph nodes are swollen -- is that something that comes and goes? I notice more pressure when I am under stress. I will keep you in prayer, Lynne.

lymph nodes
I don't know. I had laryngitis in November and my family Dr. noticed it then and said it wasn't due to the laryngitis. I am six years out but I was never put on a low iodine diet before my scans and was eating foods high in iodine which could have affected the scan results. The type I have is hurthle cell cancer, which is rare, but very aggressive. I am hoping that it isn't a recurrance since my previous scans came back clear, but am very nervous about it. I went to my family Dr. again a month ago, he commented that my neck was still swollen. I am in Florida (taking care of my elderly parents) my husband and endo are in SC. So I guess I will see on the 18th when I get my first "accurate" scan back..... Thanks for your prayers, I will keep you in prayer also and with the support we have on this discussion board, we will all get through this nightmare....

bkane101 said:

I just completed my RAI and
I just completed my RAI and a week following the 1st day I took the pill I had my body scan. The doctor told me I only had to continue the LID for the 1st 24 hours of my RAI so I was SO glad to stop it, but then I had my scan 7 days later and was eating normal. They never told me that I should be on the LID for my scan. They just told me no cancer showed up so that makes me happy but now I'm wondering if the results are accurate. Not sure if I should've stayed on the LID the entire time of my RAI treatment.

scan
That has me curious.....My Dr. told me not to worry about it, so I am going by what everyone else has said and the way I understand it is that you stay on the LID for the week prior to the scan and then the week of (when they are doing the thyrogen injections and giving you the RAI) then after the WBS you can eat normal. Maybe I mis-interrpreted. I have done it for two days now and I feel pretty lousy. My stomach is so upset. I guess I'm not use to eating so much fruit....

Baldy said:

RAI & LID
Mine was the same. I was on the LID right up until I took the ablation dose of I-131. As soon as I took the pill, I was told to wait an hour and then I could eat whatever I wanted. I was then scanned 7 days later. I was also scanned the day before the I-131 dose, one day after a small 2 mCi I-123 dose just for the scan. The first scan was used to determine the size of the I-131 dose.

Alan

Scan Dose vs Treatment Dose
This is the way I have been told by many of my doctors. It's a standard here in Tucson but I don't know about anywhere else.

Scan Dose: LID for two weeks, Scan Dose, Forty-eight hours later the scan. You can be around people without precautions. Go eat whatever you want after the scan UNLESS you are also having a treatment to follow the scan. Some scan doses are not only to scan but to determine what dose will be used for treatment right after your scan. They will measure the amount of Radioactive particles being emitted from your stomach and knee area after your scan. If no treatment is to follow the scan you are done, eat whatever you want, no more LID.

Treatment Dose: LID for two weeks, Treatment Dose, Seventy-two hours later you can eat whatever you want. After seventy-two hours (three days) the RAI has filled all the cells it's going to fill. Think about it like this. You fill a cup with pebbles. The pebbles being the RAI and the cup represents your cells. After filling the cup with pebbles, if you pour more pebbles on top, it will only run off. It won't replace the existing pebbles.
After four days you can be around healthy adults except for extended periods of time like sleeping together. After seven days you can be around children and pregnant women and sleep with your partner again.

I hope this helps. Again, I know standards are different from each Medical facility. This is how I was told her in Arizona and the University of Arizona Cancer Center, which is a leading cancer facility in the country. I have done two treatments and three scans since my diagnosis in November of 2009.

Blessings,
Julie-SunnyAZ

Linda Jo said:

Try to stay positive
My oncologist put me on the LID for two weeks after the TT and before the I131 in March 2010. Last month, I went through the body scan prep: Started LID on Apr. 1, received 1st thyrogen shot on Apr. 11, 2nd shot on Apr. 12, took 4 mc I131 pill on Apr. 13, had scan on Apr. 15 along with blood test. There was some uptake in the remaining thyroid tissue which throws off my blood results (there are antibodies). Had a biopsy last Friday on a lymph node and it came back clean. Thank you, Lord!

I, too, have been caring for my parents for the last 3 months, especially my father. Was able to spend much time with him until he passed away on Apr. 8. I don't know how I would've managed if it weren't for the thyrogen shots (didn't have to go off my synthroid). It is very stressful, isn't it? I have many financial matters to take care of, now. I take one day at a time and I know the Lord is walking this path with me.

I still need another dose of I131. Managed to squeeze it in between my daugher's university graduation and my nieces wedding:
May 27 - Begin LID
June 6 - Thyrogen shot
June 7 - Thyrogen shot
June 8 - I131 (50 mc)isolation for 4 days (plus 2 extra days from my grandchildren)
June 9 - resume regular diet
June 15 - Body scan

My oncologist is very adamant about the low iodine diet. The first time I had to do it, I didn't have the cookbook from thyca.org. Cooking from that made the diet go much easier last month. Maybe you should check with your endo for a referral to an oncologist.

Blessings on you and your family. Please share your news on the 18th.

I tried
I can't do it. I did the LID for two days and my stomach was so upset. I am going to travel to SC and start the LID when they start my thyrogen injections. My Dr. said not to even worry about the LID, but I really feel like something is very wrong, espescially with my neck being swollen for no reason for the past six months. I will be able to tolerate the LID if I could stay home, but with having to finish this week at work, I don't see how I can do it. I feel nauseated and have an upset stomach. Back on a regular diet today and will resume LID Monday. I don't know if it will work, but I don't know what else to do....

amorriso said:

Diet
Hi. Sorry to hear you're having such problems with the diet and swollen neck. I'm set for another round of RAI on Monday May 9 so have been on the diet as well. However, I live in Muscat, Oman, and the only rules for the diet are no salt and no seafood. During my first RAI I asked the doctors about the diet, showed them the one from North America, and they simple said it wasnt necessary to be that strict. So this time I'm watching what I eat, but not as strictly as before. I'm avoiding salt, seafood, eating fresh vegies, and limiting my dairy to milk in my coffee or just enough to wet my cereal. And no processed foods.

I feel a whole lot better this time round - despite having a neck dissection 2 months ago. The right side of my neck is still swollen and tender - the doc says it normal and things will sort themselves out in about 6 months. But I still feel like I have the mumps on one side. A physiotherapist showed me how to massage the area to increase drainage - it has helped.

I'll be getting my thyrogen shots on saturday and sunday, then in for the treatment dose on Monday. I'll have a scan wednesday to see how things are going. I'll let you know what the uptake is like.

Best of luck
Andree

diet
Thanks, that is pretty much what I am going to do. My Dr. didn't recommend any restrictions and never has with my past scans. I use to eat alot of salty foods and seafood so we decided my scans may not have been accurate. I am not going to use salt or eat seafood, but eat sensibly this time. I hope things go well for you and wish you the best Andree!
Lynne