1. < Thyroid Cancer

Tall Cell Subtype, maybe RAI avid, TG levels are extremely high

Posted by achatterjee @achatterjee, Apr 29 8:27am

Hi!
My mother (58 years old) had a total thyroidectomy in January 2023. We didn't know it was cancer before the surgery, and we only went in because the lump in her neck got really big. On the operating table, they had to scrape the thyroid gland off the windpipe because it has invaded its walls. That's what the doctor told us. We later find out that she has the Tall Cell subtype DTC, Stage 3. We went for a round of radioactive iodine treatment but doctors suspected she may be avid to RAI. After the surgery and before the first RAI treatment, the TG levels was 1800. After the treatment, there was partial RAI uptake, so doctors suggested for a second round. However this time when she did blood work after having stopped taking levothyroxine for a month, her Tg levels came around 1200. Should I be worried? Is this indicative of distant metastases? The doctors have told me that if her lymph nodes (1.7×0.8 cm) do not take RAI in this round of 100mci, they will put my mum on Lenvatinib. I am scared about its side effects, and my mum has hypertension and anxiety and depressive disorders. Is there anybody else who have been in such a situation? What should I do?

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

Lynne Marie | @lbrockme | Apr 30 5:33pm

Hi! While I don't have the same cell type I have been through much of what you are describing.
I am sure this is very unsettling for you and your mother. It's hard to know what is the best course to take. Fortunately most of the doctors are familiar with all of the different factors. If ypu are concerned you could always request a 2nd opinion . I understand your concerns with side effects for medication. Thyroid cancer is somewhat unique in that are body is designed to make those cells and they impact so many of our body systems. I have lived with this for over 30 years. It's always been a balance of surgery, treatment and lab tests . Sometimes we have to weigh the possible side effects with the other factors if we don't treat . Remember they are possible side effects and not everyone is affected the same way.
I would suggest writing all your questions down and take to the doctor.
Hoping your mother continues to feel better. May you have positive times with her as well, away from all this cancer questions and testing.

REPLY
1 reply
achatterjee | @achatterjee | May 2 2:57pm
In reply to @lbrockme "Hi! While I don't have the same cell type I have been through much of what..." + (show)
@lbrockme

Hi! While I don't have the same cell type I have been through much of what you are describing.
I am sure this is very unsettling for you and your mother. It's hard to know what is the best course to take. Fortunately most of the doctors are familiar with all of the different factors. If ypu are concerned you could always request a 2nd opinion . I understand your concerns with side effects for medication. Thyroid cancer is somewhat unique in that are body is designed to make those cells and they impact so many of our body systems. I have lived with this for over 30 years. It's always been a balance of surgery, treatment and lab tests . Sometimes we have to weigh the possible side effects with the other factors if we don't treat . Remember they are possible side effects and not everyone is affected the same way.
I would suggest writing all your questions down and take to the doctor.
Hoping your mother continues to feel better. May you have positive times with her as well, away from all this cancer questions and testing.

Jump to this post

Thank you so much for your reply! Since the surgery, my mother is doing well, but she is traumatised by the whole surgery experience (she had be tracheostomised and couldn't speak for 20 days before the doctors roved the tracheostomy tube from her neck) and has black outs every single time we visit a doctor's clinic, even if it's for a simple flu. She cannot and does not take fear amd anxiety well, her body immediately reacts. This is what is concerning me the most, because more than the physical effects, my mother will be mentally affected by the side effects. Otherwise, she has no other symptoms. We are due for a check up on 10th May, and the doctors may suggest Lenvima or another round of RAI. I am just praying that whatever happens, it happens for the best for her interests.

REPLY
1 reply
Lynne Marie | @lbrockme | May 2 4:13pm

I am so very sorry she was so traumatized. I think you are an amazing advocate for her , especially in recognizing that it is the trauma that may be causing her black outs. That is a very significant
response to her stress, and it could show that she has not
been able process all she has gone through. Sometimes this can happen if there is other or prior trauma as well.
I would encourage you to discuss with her the helpfulness to find a someone who is experienced with trauma responses for her to speak with. A therapist could help her find ways to process the events and prepare for more doctors appointments. You might also have the hospital Chaplain or someone from her faith foundation to help you speak with her about seeing someone experienced with suffering like she is. My hope is she will agree and she won't have to struggle so much. No one should hurt that much.
Is her doctor aware of this reaction?
I am praying for you both.

REPLY
achatterjee | @achatterjee | May 10 12:31pm

Update: We will be going in for a PET CT Scan on Monday to figure out the level of metastates, and if there is local mets, they have suggested neck dissection. Or Lenvima, but Lenvima will be long drawn and difficult treatment, so they have asked us to consider surgery first.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 18 2:50pm
In reply to @achatterjee "Update: We will be going in for a PET CT Scan on Monday to figure out..." + (show)
@achatterjee

Update: We will be going in for a PET CT Scan on Monday to figure out the level of metastates, and if there is local mets, they have suggested neck dissection. Or Lenvima, but Lenvima will be long drawn and difficult treatment, so they have asked us to consider surgery first.

Jump to this post

@achatterjee, how did the appointment go? What did you learn? Next steps?

REPLY
1 reply
koh | @koh | May 19 8:45am
In reply to @achatterjee "Thank you so much for your reply! Since the surgery, my mother is doing well, but..." + (show)
@achatterjee

Thank you so much for your reply! Since the surgery, my mother is doing well, but she is traumatised by the whole surgery experience (she had be tracheostomised and couldn't speak for 20 days before the doctors roved the tracheostomy tube from her neck) and has black outs every single time we visit a doctor's clinic, even if it's for a simple flu. She cannot and does not take fear amd anxiety well, her body immediately reacts. This is what is concerning me the most, because more than the physical effects, my mother will be mentally affected by the side effects. Otherwise, she has no other symptoms. We are due for a check up on 10th May, and the doctors may suggest Lenvima or another round of RAI. I am just praying that whatever happens, it happens for the best for her interests.

Jump to this post

I am sorry to hear about your mother’s reaction to this traumatic experience. Did you ever hear of Gilda’s Club? It was named after Gilda Radner, the SNL comedian who was dealing with cancer. It’s a place where people who were diagnosed with cancer can meet and do things to heal their minds while healing their body. They have a website and now have several locations; they offer assistance and support for people dealing with cancer. They have yoga and healing programs and people to talk to about dealing with cancer! I have directed a few people to them and they said they were great! It might be a good resource for your mother to consider; it sounds like they take the focus off cancer and put it back on living and doing things. Even if you do not live in the area of one of their locations, it might be worth calling them for information. Good luck!

REPLY
1 reply
achatterjee | @achatterjee | May 20 10:30am
In reply to @colleenyoung "@achatterjee, how did the appointment go? What did you learn? Next steps?" + (show)
@colleenyoung

@achatterjee, how did the appointment go? What did you learn? Next steps?

Jump to this post

Hello. The PET CT Scan revealed two tiny metastatic spots on my mother's ileus bone, in her hip, so she is put on Lenvima 12 mg. With God's grace, she is fine except for really high bp. She is put on two different medications for it. We are worried but I am hopeful Lenvima will work

REPLY
achatterjee | @achatterjee | May 20 10:32am
In reply to @koh "I am sorry to hear about your mother’s reaction to this traumatic experience. Did you ever..." + (show)
@koh

I am sorry to hear about your mother’s reaction to this traumatic experience. Did you ever hear of Gilda’s Club? It was named after Gilda Radner, the SNL comedian who was dealing with cancer. It’s a place where people who were diagnosed with cancer can meet and do things to heal their minds while healing their body. They have a website and now have several locations; they offer assistance and support for people dealing with cancer. They have yoga and healing programs and people to talk to about dealing with cancer! I have directed a few people to them and they said they were great! It might be a good resource for your mother to consider; it sounds like they take the focus off cancer and put it back on living and doing things. Even if you do not live in the area of one of their locations, it might be worth calling them for information. Good luck!

Jump to this post

Hi! Thank you so much!! Unfortunately, India doesn't have a Gilda's club. I wish we had more such centres here where people can talk about their fears of cancer.

REPLY
1 reply
koh | @koh | May 20 2:01pm
In reply to @achatterjee "Hi! Thank you so much!! Unfortunately, India doesn't have a Gilda's club. I wish we had..." + (show)
@achatterjee

Hi! Thank you so much!! Unfortunately, India doesn't have a Gilda's club. I wish we had more such centres here where people can talk about their fears of cancer.

Jump to this post

I checked the website and you are right, they do not have a club in India. However if you put India in, a message on the side comes up with a phone number to call for resources for you particular need. I don’t any details about it, but figure any information might lead to some help. I hope it helps.
https://www.cancersupportcommunity.org/find-location-near-you

REPLY
Please sign in or register to post a reply.