Third Endocronologist Consultation


On 20th May, I was hoping to meet one of the best thyroid-endos in Brussels, at University Hospital St. Luc... but was finally faced with her assistant's assistant... or student, to start with. It was too weird... so I'll rather skip it. Bottom line, nothing new was said & I have a witness this time - Berry was with me (I've got a copy of their written report on 18th June - 1st and 2nd page):

• less then 10 % of nodules are benign
• as your goiter and nodule are already so big, hormonal treatment would be of no use
• operation is not urgent but it's the only way to annul nodule
• neck scar surgery would opt to remove only the right lobe of your thyroid, where the nodule is,
but final decision would be taken during it (you might also wake up without thyroid)
• if only half of thyroid removed, you might not need hormonal treatment afterwards but it's not sure
• if entire thyroid removed, you'll need hormonal treatment "forever"
• make an appointment with our thyroid-surgeon who'll explain surgery and anesthesia options to you

Well, as you might figured it out already, as of this day, I'm postponing ALL concerning hospital(s).
No consultations, no ultrasounds, no scintigraphy... Temporarily, nada mas!
I'll let my physician to weekly check up my vital functions and order me to lab - but that's all. Let's go Breuss at once!

Other cyber replies

I've also got some replies on my postings & raising my health issue on relevant forums...

• Tom Coghill replies on his "fasting" site on 6 May:
I have not had any treatments of goiter yet. To me you have nothing to lose by doing a 30 day juice fast even as a perpetration to surgery. I believe that the treatment protocol that we are now developing that is already effective against cancer will be effective for goiter which is use raw pig pancreas 14 times per day with juice or raw food. It was developed by Dr Kelly. The first treatment success at the hospital convinced me that this treatment will have a very high success rate.

• Two suggestions on Thyroid Disorders Community (6 May). Thanks, guys!
• Although interesting, I won't translate a "thyroid-gland-removal-survivor" reply on Slovenian "thyroid association" forum (7 May). Hvala, Daisy.
• Another "thyroid-gland-removal-survivor" reply, on Cancer Compass forum (8 May). Zillion thanks for sharing, Rosesbud!
• Darja shared her story of a similar diagnosis and removal of one thyroid lobe (for which she is happy & positive) & wished me all the best luck (on Slovenian "thyroid association" forum; 14 July). Ful hvala, Darja! Tudi tebi vse najboljše!

Endocrinologists' cyber replies

I was almost sure I wouldn't get any replies on my e-mails to some endocrinologist. Well, I was wrong.
I'll briefly summarize the most important out of them.

Slovenian thyroid specialist (e-mail reply on 7 May):
• removal of your thyroid gland is a wise decision
• only 7 % chance you're nodule is not cancerous
• I'm not familiar with any alternative treatment

Another Slovenian thyroid specialist (forum reply on 10 May):
• as you're nodule is of a considerable size (and grew quite a lot since 2008), there's indication
for at least partial strumectomy during which it would be possible to decide what to remove indeed
• hormonal therapy wouldn't be a promising choice

3rd Slovenian thyroid specialist (forum reply on 12 May):
• majority of nodules are benign; probability they're cancerous is relatively small
• I don't recommend a hormonal treatment (no use in your case)
• surgery is not urgent but it's the only way to annul goiter
• second option would be regular ultrasound check-ups
• genetic factors are the most important ones in development of a goiter and its growth
• you can't do anything concerning it by yourself, not even with a diet
• I don't recommend Breuss cure (he doesn't say more)
• hormonal post-goiter-removal treatment (Thyroxine) has no side effects if its apportion is adequate 

4th Slovenian thyroid specialist (e-mail reply on 23 May):
• in your case, I recommend surgery
• you don't need medications, as it's clear now that they do not stop nodule's growth
• no matter your test results, there's 8 % chance your nodule is cancerous
• overall, prevalently it's a papillary thyroid cancer which is 100 % curable with surgery
• this surgery isn't dangerous; one night in the hospital
• the only possible side effect is laryngeal nerve injury (less than 1 % when I operate)

4th Slovenian thyroid specialist (sent me another e-mail reply on 29 June):
• I recommend the removal of your thyroid gland
• you can't cure this illness nor stop its growth with medications
• probability of cancer is 8 %, although this cancer is 100 % curable
• I can't suggest any alternative treatment as I don't know any

Alternative Plan

Yeah, right! More replies and comments I got, and more I read about thyroid removal, about people's experiences after it, more reluctant I became. And among all that thoughts, concerns, emotions, questions... there was a persistent pop-up line in my head "try Breuss".

Breuss? Briefly, many years ago, when my friend had her first breast removed, I was much into "cancer healing" research and read tons about it. Among others, I came across Rudolf Breuss Total Cancer Cure which was the only thing it seemed common sense to me to try/follow prior any kind of cancer treatment (or any other aggressive one).

"Breuss maintained that cancer, whenever it occurs in the body, feeds and grows from protein. He therefore deduced that if one fasted for what has now been confirmed as an ideal period of 42 days, during which various herbal teas and juices are taken to detoxify, cleanse and eliminate, the cancer would starve, be absorbed and subsequently pass out of the body one way or another. Radical thinking that flew in the face of the accepted medical wisdom, but is now used all over the world and known as the Breuss Total Cancer Treatment." (one of the web sources)

Well, I decided to give it a try. As there's no extreme urgency to be operated, I have at least that much time... 42 days. It won't be easy, especially with a regular colon hydrotherapy on top of all, but with a dedicated support of my hubby and determination one gets from that kind of health issue... I might just get through it. And who knows, as it was apparently extremely efficient and cancer eliminating for many, it might work for me too.

In this blog, I'll continue with "medical stuff"...
In another blog, I'll cover my "travel with Breuss":  Aida's Breuss Cure Diary

Welcome to witness my journey!

Research

Ugh... I'm not that frightened of operation (although, this would be the second one with a total anesthesia in a year), but I'm really not confident with all that comes afterward, after they remove a thyroid gland... Pills till the end of my life, at least! C'mon, I'm "only" 45!

I briefly shared both endo-consultations with Berry, and shut down... I needed some digestion time, or better, not to think about it for a while... And then, few days later, when I was briefly phone-discussing the matter with my dear friend, it struck me:

"Operation is not urgent. Although, if I don't get my thyroid gland removed soon, my goiter might cause more problems within my lower neck, compressing my trachea (breathing tube) even more, as well as lungs, blood vessels... and thyroid nodule inside of it might develop into cancerous one (if it's not already the case). Therefore, I better get a date for operation soon..."

I was wetting Berry's shoulder afterward... Thank you, Precious, you're exactly who I need next to me. (Not only when crying!)

You can bet, I started browsing web sites the very next day, posting & raising my issue on relevant forums, emailing some endocrinologists directly... in order to comprehend better what's really inside of me, to find out more about my options, as well as about operation & life after it, to eventually find an alternative treatment...

Bottom line? No alternative treatment available. Total thyroidectomy seems to be the only wise option.

Yeah, right! More replies and comments I get, and more I am reading  about it, about people's experiences after it, more reluctant I am.

Well, I have another endo scheduled on 20th (apparently with the best for thyroid abnormalities in Brussels, at university hospital)... and until then, I intend to get all my additional questions & concerns on paper.

• How soon do I need to get my thyroid gland removed?
• Does nodule's biopsy makes any sense in my case?
• Probability that my nodule is not cancerous?
• What kind of procedure you practice for total thyroidectomy?
• Is there anyone in Brussels who already practice removing a thyroid by endoscopic surgery (no neck scar surgery)?

And if feeling like it, I will make another appointment further on...

Clueless... almost

Ugh... Medical reports leave one more or less clueless; and quite lost with all that technical medical language. Well, me; at least.

After consulting my physician (end of April), it became clear I'd need to consult an endocrinologist as soon as possible. In Brussels, one usually doesn't wait for a consultation with a specialist for more than few weeks, if at all. Endocrinologist, specialized in thyroid pathologies, that's another story. I've got a RDV with one of apparently the best ones in September... Obviously, my fighter attitude stepped in. I started calling & emailing around. I had my first two endo-consultations on 3 May. Not the one I was hoping for, but one needs to start somewhere; at that point I didn't really care any longer whether a particular "endo" will be a thyroid specialist or not - I just wanted to know what's going on and what can/needs to be done.

1st endocrinologist (I've got his written report on 17 June; one page)

• you have a substrenal goiter ("goitre plongeant" in FR), a thyroid gland which grows into the chest,
and a huge thyroid nodule for which one can't be sure whether it's cancerous or not
• there's no treatment available, you need to undergo an operation to remove your thyroid (total thyroidectomy)      
• if you don't wish to be operated soon, I recommend a biopsy to determine what kind of nodule this really is

2nd endocrinologist

• he suggested operation &  removal of my thyroid gland
(not urgently (e.g. tomorrow) but as soon as possible as my thyroid nodule can transform into cancerous one)
• basically, there's no other option, even more as goiter is already compressing my trachea (breathing tube)...
• eventual hormonal therapy might stop thyroid and nodule's growth and shrink them,
but as nodule is already so huge, it will certainly not disappear  (where were you in 2008?)
• he prescribes me L-Thyroxine (50 g), if I really want to give it a try, and recommends 
lab test of TSH in 6 weeks, ultrasound in 3 months, and scintigraphy in 6 months (I've put hormones on hold)

Well... I  don't want to be operated!  

I DON'T WANT MY THYROID GLAND TO BE REMOVED! 

I don't want to be on drugs for the rest of my life!

PS regarding "where were you in 2008":
In early 2008, after all exams, my that time physician told me not to worry as blood results are OK,
as well as that there's no need to consult a specialist. I completely trusted him. Well, he's not my physician any longer!

Medical Results & Reports

• Lab • 23 March 2010 vs. 1 Sept. 2009 (2 pages):  1st & 2nd 

• Scintigraphy with Technetium • 31 March 2010 (5 pages):  1st, 2nd, 3rd, 4th & 5th 

• Comment: "goiter of considerable size (right lobe 6,4 cm, left lobe 7,2 cm) with a large palpable nodule (markedly hypo capturing, almost cold) in the lower isthmus region and the right lobe; there is a discrete compression and discharge of the trachea by the nodule"

• Scintigraphy with MIBI • 1 April 2010 (1 page):  1st

• Comment: "very cellular tissue nodule; a considerable size of goiter with a nodule hypo-active in the lower right lobe and normal activity in the left lobe and right; no abnormal activity in the cold nodule, so no argument for an abnormal cellularity" 

• Ultrasound/Echography • 1 April 2010 (1 page):  1st 
• Comment: "cold nodule; mixed - partly fleshy, with liquid interior that measures 2 x 3,5 x 3,8 cm; ultrasound is compatible with a partially cystic and necrotic adenoma"

• Nuclear medicine reports • April 2010 (3 pages):  1st, 2nd & 3rd

Exams in 2008:

• Ultrasound/Echography • 17 Jan. 2008 (1 page):  1st

• Scintigraphy • 11 march 2008 (2 pages):  1st & 2nd