Refusing surgery: Vanessa's fight to save her thyroid with RFA
VloĆŸit
- Äas pĆidĂĄn 6. 08. 2024
- Vanessa had an ever growing, benign thyroid nodule, but normal thyroid function. Multiple doctors pressured her to have surgery. After a diagnosis of Multiple Sclerosis, she knew surgery was a mistake for her. Vanessa did her homework and discovered thyroid radiofrequency ablation.
Timestamps:
00:00 Introduction
00:50 Vanessa's diagnosis of a thyroid nodule
03:37 Vanessa's diagnosis of Multiple Sclerosis
04:39 Vanessa's discovery of thyroid RFA
Disclaimer: None of the statements made in this or any other video by "Its me Jen again" should be considered medical advice.
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This was wonderful! My experiences are very similar. First 4 doctors I talked to, only mentioned surgery and radioactive iodine. As my nodule kept on growing, I agreed on surgery as I saw no other options. Then came across RFA and your Facebook group. Soon after, I talked with a 5th doctor about RFA, who said he's aware of it, but that it can't be done on nodules as big as mine (6cm). I was again, left with surgery. Only the last doctor I talked to about this, the doctor who was supposed to operate me, recommended me another hospital where they do RFA's. Currently I'm waiting to get a referral there. Let's keep spreading the information so it won't be so difficult for people in the future!
Wow thank you for this explanation...you really save more patients with thyroid
Am glad I saw this just a few days ago because my friend was going to take hers out I sent her your videos we are going to make call tomorrow to see if we can get this done thx a million đâ€ïžâ€ïž
Thank you for this interview, Jen. Thank you Vanessa for being so candid about your story. My surgeon (who was willing to delay surgery since I was having no negative effects from the large nodule - yet) when I asked about RFA, also said he knew all about it but it isnât done in Canada. I felt quite betrayed as he knew I had the resources to be able to travel to the US or Europe for the procedure. Anyway, so glad you found the right doctor and wish you all the best in the future.
Will you be traveling to have RFA?
@@ItsmeJenagain Yes I am considering Dr. Dupuy in Cape Cod or Dr. J. In NYC although I would prefer to be treated by Dr. Hands. San Antonio is a long way from Montreal, however. Have to get my act together now that traveling is possible and since I am now feeling more pressure on my esophagus. Other health issues make travel challenging, but I will have to bite the bullet and set up some zoom consultations. Any suggestions?
@@bonniezieman3424send them your records and get opinions from them all. Then you can make the best decision for you personally.
@@ItsmeJenagain Yes! My project for next week. Have a great weekend and know how much your work is appreciated.
@@bonniezieman3424 ! Iâm new , i just found out this week that I gave a 5 cm nodule abd yes they suggested I get my tryout out ⊠seriously, what the hell , my thyroid is working find .. I really want the get RFA But But , im canadian montreal. Hell I canât believe we donât do this in canada ! Well this will be my new mission !
I was thinking of Boston dr Randolph
Do you have the cost if the procedure in the us ?
Im so happy yo have found this group ! God bless you all Jen i donât know you but I love you ! Hugs đ€
WOW! I hadn't heard about RFA until I found your CZcams video. I watched Cyrus's story too. I'm also from Toronto.Thank you for sharing your story. I'm a 67 year old retired nurse diagnosed with 2 aggressive uterine cancers May 2020. Treated with chemo and radiation. While on a follow up visit with the oncologist I mentioned that I had developed a small lump near my Adams apple which I thought may be a lymph node. He dismissed it. A year later the lump was bigger and on another follow up visit I again mentioned the lump to the oncologist who again dismissed it saying uterine cancer does not go to your neck. Because the oncologist wasn't concerned I wasn't overly concern either. Shortly after that I had a dental check up. I mentioned the lump to the dentist while she was doing an oral exam. I have to thank her because she said you really should have that checked. I made appointment with family doctor who ordered an ultra sound of my neck which was done Nov 2022. It came back as a complex cyst. I got booked with an ENT doctor in March 2023 and had a FNA in April 2023 which was inconclusive and had to be repeated. Results in June 2023 were suspicious for papillary thyroid cancer. I was referred to a head and neck oncologist. after a CT scan and another ultra sound. I'm waiting to be booked for surgery to remove the right thyroid lobe. NOW I'M GOING TO CHECK OUT RFA BEFORE I GET BOOKED FOR SURGERY! It's be over 2 years since I found the lump. JEN YOU ARE ABSOLUTELY RIGHT - YOU HAVE TO ADVOCATE FOR YOURSELF. I kind of kick myself for not getting a second opinion sooner. I joined your Facebook Group. Thanks again.
I'm sorry you received another cancer diagnosis, but I'm so glad you found out about it. RFA is now available at Sunnybrook Hospital and Toronto General, but it is pretty new there. They may not be treating cancer yet. If you need more information, please join the Save Your Thyroid fb community or visit our website saveyourthyroid.org.
@ItsmeJenagain
Hi Jen,
There are 4 Canadian RFA sites. Women's College in Toronto, also part of the University Health Network and one in Montreal. I asked the Head and Neck oncologist and family doctor to refer me to Toronto General (TGH)for RFA. H&N oncologist said TGH wanted a repeat Ultrasound, which he personally did and said he was videoing the Ultrasound from the screen with his cell and sending it to Dr. Pasternak at TGH. Kind of strange re medical privacy. About 3 weeks later the H&N oncologist said that they decided I needed surgery to remove the isthmus, (previously told they want to remove Right Thyroid). The story keeps changing. Also said that there is a haze surrounding the tumor ( what ever that means. ) Oncologist said he would have Dr. Pasternak call me to discuss. Still waiting , no call. When I emailed the RFA Centre at TGH they responded that this was the first she has heard of this and would follow up with Dr. Pasternak. I have not heard anything further. My family doctor did not receive the ultrasound report or had any response from TGH. I find this highly suspicious and wonder if they are trying to push me into surgery. I feel perfectly normal and labs are all normal for thyroid. I'll keep trying for RFA even if I have to go to Germany.
Rose
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My daughter has a goiter with nodules and one is hot making her hyperthyroid. She told her doctor she wasnât interested in
having her thyroid out and she laughed at her. Jen you have such great information for people who want to save their thyroid. Thanks for all you do đ
Hi and thank you so much for the awareness that you're spreading †My thyroid journey is like your guest Vanessa's, for years it was there unnoticeable and then growing over the years, now 4.4cm. My doctor wants me to remove it. I'm not going to do that, obviously. But in her case and mine the size continued to grow so my fear is that will happen after the RFA, from your interview she didn't mention whether hers grew afterwards. Could you throw a light on that? Thanks
Iâm going through the same thing now!! Heading to join the Facebook group. Thank you for putting out all this information for those of us going through this
Same here. I could have dealt with mine when it was much smaller. This should be considered medical negligence if as you ask me.
hi maam Jen is it possible to have RFA if diagnosed malignant please reply
Yes. In the US, some papillary thyroid cancers up to about 2 cm in size (with some other important considerations) can be treated.
What Dr did Vanessa go to?
Dr. Jennifer Kuo
This is so infuriating that Vanessa's doctor did not inform her of RFA! She's an excellent role model for advocating for ourselves. Neither my endo or surgeon or GP told me about RFA. I had to join FB groups to learn about everything related to thyroid issues, negative consequences of hormone pills, and treatments. This is much too common and I have to wonder if it's mostly female patients who encounter this from our drs. :/