# ?



## oceanmist (Apr 30, 2007)

Why is there a thread for RAI and not for people who had surgery? Did I miss it somewhere?

Ocean


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## lavender (Jul 13, 2010)

Nope, no surgery thread, but lots of us have had surgery and would be more than willing to share our experiences. Me included. I have seen a lot posted about surgery in this thread.


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## oceanmist (Apr 30, 2007)

I've seen only three of you...the rest seems to have taken RAI or still getting diagnosed.
Why is that? That there is no thread..... I would like to know the out come on both sides to make sure hubby is making the right choice for him. 
Ocean


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## Andros (Aug 26, 2009)

oceanmist said:


> Why is there a thread for RAI and not for people who had surgery? Did I miss it somewhere?
> 
> Ocean


You will find a lot of surgeries in the Cancer Folder.


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## lavender (Jul 13, 2010)

I have seen a lot of people on these boards who have opted for surgery for one reason or another: Graves, Hashi's, nodules, cancer.

RAI is still the more highly recommended procedure for Graves and tends to be required for Cancer, even after surgery has been done. I think it is more common in the general population but not necessarily on these boards, at least not from what I have seen.

I don't know why there isn't a surgery board since I did not set this up. Perhaps it can be added.

As far as your hubby, I think he needs to make the decision he is most comfortable with. Other people could hear my options and weigh with their thoughts, but no one else could tell me what was right for me.

I couldn't stand the anti-thyroid meds and felt like my system would not respond well to RAI. It felt like I had this diseased thyroid that just needed to come out. I know surgery may have been more risky than RAI in certain respects, but I have healed just fine. I knew things would get better the second I woke up from surgery, and I am glad I stuck by my decision. The hard part has been dealing with hypothyroid. I have been told it can take a year or more to balance out after surgery and am trying to be patient.


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## oceanmist (Apr 30, 2007)

I don't want to go into the cancer folder unless I have too...
Who do we contact for a surgery board? Those are the stories I want to hear. There is nothing to compare the two choices too and I want to make sure my husband understands both. I know he is chosing surgery because I saids thats what I would do. I don't want that over my head if something goes wrong.


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## CA-Lynn (Apr 29, 2010)

The sooner people get over the big fear of cancer and get educated, the better off. Too many people live in dread of cancer. The days of it being an automatic death sentence are over. Modern progressive treatments have extended the lives of so many people.

Knowledge is power.


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## Andros (Aug 26, 2009)

oceanmist said:


> I don't want to go into the cancer folder unless I have too...
> Who do we contact for a surgery board? Those are the stories I want to hear. There is nothing to compare the two choices too and I want to make sure my husband understands both. I know he is chosing surgery because I saids thats what I would do. I don't want that over my head if something goes wrong.


All you have to do is start a post asking for surgery patients to report in.

We have too many folders as it is.


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## lavender (Jul 13, 2010)

Or click on the search button at the top and type in surgery, thyroidectomy, or TT.


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## McKenna (Jun 23, 2010)

FWIW, I did not have Graves', but had Hashi's, large cold nodule and high TSI. I opted for surgery and have no regrets. I had an endoscopic TT and do not have the "traditional" scar, didn't have a drain and didn't have to stay overnight in the hospital. I highly recommend finding a surgeon who specializes in this type of surgery if he decides to go this route.

I never felt the full effects of hypo since I was on Armour and my belief is the T3 in it is keeping me from crashing hard into hypo-land. It may be something for him to consider when weighing thyroid meds for after surgery.

Dr. Ridha Arem, author of The Thyroid Solution, writes in his book that he prescribes T3 in the form of cytomel for people post TT to prevent them from crashing hard into hypo.

Good luck with the decision!


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## oceanmist (Apr 30, 2007)

REALLY? Just wanted to state that I am very educated with cancer we lost 8 people to it this year. They went quickly and didn't have the modern tec to prolong their lives and for them it became a death sentence apparently. We found out in the last 3 months that there are another 4 friends with cancer. 
My husband is diagnosed with Graves not cancer yet so I am not going to take him to those posts right now which he doesn't belong. When he hears different from the doctor then we will deal with it at that time. 
I appreciate your posts lavender and Mckenna this is what he has to see right now.
He is hitting hypo land hard...and is very sick. I'm surprised it hit him so quickly. He has to get his thyroid out....he is so up and down.
A surgery post next to RAI would be very interesting not only to me but to others who are going through only Graves right now. 
Ocean


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## lavender (Jul 13, 2010)

I too have seen several friends die of cancer in the past two years, but that was BREAST cancer. Thyroid cancer is a much different disease with much better outcomes. I think it is important no to lump all cancers into one big pile of a death sentence because they are all different with different cure rates. Thyroid cancer is one of the highest.

I have Graves, and my doc never uttered a word about cancer to me until after my surgery when he told me the pathology report was all clear, but I knew in the back of my mind that it was always a possibility. It took me a long time to be willing to look at the cancer boards, but I have learned that once our thyorids are gone, we are dealing with many of the same issues. Granted, I don't have to go through RAI, but I do have to learn to manage to live my life without a thyroid. When it all boils down to it, once the offensive glad is gone, we are all in the same hypo boat and can learn from each other.

Oceanmist, I hope all goes well with your husband's surgery. I found that once I made a decision, I could read and obsess all I wanted, but it just really drove me crazy. There are always horror stories, there is always some new piece of information out there, but hearing all that did not change my gut reaction, which was similar to yours, that sick gland needs to come out! Trust your husband to make this decision, and good or bad, he will be able to deal with the consequences as they come.

The best advice I can give you is to find the most experienced surgeon you can. One who does several thyroidectomies a week, around 100 a year. Thyroidectomy is very fine microsurgery, and nothing can substitute for the hand of experience.

The main complications have to do with the vocal chords and parathyroids. While permanent damage is pretty rare, I think it is common to have short term issues in both areas. I know that my voice took a couple months to fully recover. I sing, so I was pretty sensitive to what my vocal range was before and after surgery. I was able to talk just fine from the moment I woke up after surgery, but singing was more challenging for a while.

We each have 4 parathyroid which are tine little glands the size of a grain of rick that are attached to the back of the thyroid. Parathyroid damage can result in difficulty maintaining blood calcium levels after surgery, which can be pretty miserable. My surgeon downplayed this risk before surgery and I think it spoke to his lack of an ability to deal with it after my surgery. One parathyroid was removed, and the other 3 were "stunned," and low functioning for a few months. Thankfully, they are healing now, I take calcium, magnesium and vitamin D daily, and low calcium issues are a memory to me now.

Different surgeons do the surgery a bit differently, some more invasive than others. I have about a 2 inch scar, had one long stitch that had to be removed a week after surgery, and my incision was covered in a piece of clear tape that sealed out germs (and kept me from bleeding when I pushed myself too hard to clean up the kitchen one day). I have read that some people had staples (ouch), a drain, and/or steri strips that caused allergic reactions. Someone on the board has talked of having a minimally invasive endoscopic surgery that she was happy with. I also read that some hospitals are starting to do endoscopic surgery where the incision is not even on your neck. They go in through the chest or armpit to avoid a scar on the neck. I would not be comfortable with that type of surgery unless my surgeon was very experienced with it, but that's just me.


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## oceanmist (Apr 30, 2007)

Now thats what I'm talking about! Learning about thyroid surgery...very interesting lavender!!!

My hubbies uncle died of thyroid cancer...so its in the back of our minds I guess that's why I'm going with my gut.....its coming out! Until we hear anything different from the doctor were concentrating on the surgery only and what to expect. His other Uncle also struggled with Graves but passed as well.
Thank you for the informative post...
Ocean


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## lavender (Jul 13, 2010)

So sorry to hear of your hubby's uncle. I can understand you must be afraid. Perhaps surgery and the follow up pathology report will help give you peace of mind.


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## Andros (Aug 26, 2009)

oceanmist said:


> REALLY? Just wanted to state that I am very educated with cancer we lost 8 people to it this year. They went quickly and didn't have the modern tec to prolong their lives and for them it became a death sentence apparently. We found out in the last 3 months that there are another 4 friends with cancer.
> My husband is diagnosed with Graves not cancer yet so I am not going to take him to those posts right now which he doesn't belong. When he hears different from the doctor then we will deal with it at that time.
> I appreciate your posts lavender and Mckenna this is what he has to see right now.
> He is hitting hypo land hard...and is very sick. I'm surprised it hit him so quickly. He has to get his thyroid out....he is so up and down.
> ...


It just so happens that Graves' and cancer are often bedfellows. Hashi's and cancer too!

Hyperthyroidism occurs when the thyroid makes too much thyroid hormone. There are several types of hyperthyroidism, each associated with a different cause. Graves' disease (also known as diffuse toxic goiter) is the most common. Other causes of hyperthyroidism include toxic multinodular goiter, thyroid adenoma, and thyroiditis. Other rare causes include consuming too much dietary iodine, overactive metastatic cancer, or rare diseases of the ovary or testicles that can cause the thyroid to be over-stimulated.

http://www.cumc.columbia.edu/dept/thyroid/hyperthyroidism.html

http://www.medpagetoday.com/Meeting...ailyHeadlines&utm_source=mSpoke&userid=194646

Many reports on Graves' disease stress a normal or low coincidence of cancer, but several series have reported a significant association between Graves' disease and thyroid cancer, ranging from 3 to 10% (185-189). However, most of these series were surgical, and the patients were selected for surgery on the basis of suspicious nodules or large goiters. In Graves' patients treated by radioiodine, no subsequent increase in the discovery of thyroid cancer has been reported. In our review, 4 of 50 patients with thyroid cancer had coincident Graves' disease (190). Belfiore et al found the risk of thyroid cancer in Graves' disease to be increased 2-3 fold (191). Valenta and co-workers (192) reported that patients with thyroid cancer may have a LATS-like substance in the blood. A TSH-like component that cross-reacted with bovine TSH was also found in cancer patients and was not suppressed by thyroid hormone (193). This phenomenon was explained on the basis of anti-bovine TSH antibodies present in these sera, induced by prior testing or treatment with bovine TSH (194). However, TSAb can stimulate thyroid cancers when Graves' disease coexists, so the idea that TSAb might induce malignant change is tenable, but not proven. It also is possible, but unproven, that continued stimulation of a tumor may make it behave in a more aggressive manner (195, 196). Patients with Graves' disease and thyroid cancer who underwent total thyroidectomy and 131I ablation fared as well in follow-up as did patients without Graves' disease.

http://www.thyroidmanager.org/Chapter18/18-cancothr.htm


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## oceanmist (Apr 30, 2007)

Andros said:


> It just so happens that Graves' and cancer are often bedfellows. Hashi's and cancer too!
> 
> Hyperthyroidism occurs when the thyroid makes too much thyroid hormone. There are several types of hyperthyroidism, each associated with a different cause. Graves' disease (also known as diffuse toxic goiter) is the most common. Other causes of hyperthyroidism include toxic multinodular goiter, thyroid adenoma, and thyroiditis. Other rare causes include consuming too much dietary iodine, overactive metastatic cancer, or rare diseases of the ovary or testicles that can cause the thyroid to be over-stimulated.
> 
> ...


I'm well aware that Cancer and all Thyroid disease are bed fellows, sleeping buddies, share the sack ....this is all old news to me. This post is about post surgery and recovery as has been mentioned.

Thank you


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## lavender (Jul 13, 2010)

I personally have a feeling that the reason my endo would not definitively say I had Graves was because of the affinity with cancer that Andros mentions above. He just kept saying that it was most likely Graves, which was not very reassuring to me, although I was never told there was a nodule. Pathology report confirmed Graves. My understanding that the only way to really know if there is cancer or not is to have thyroidectomy and have a pathologist examine the tissue. Regardless, I am glad that nasty gland is gone!


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## McKenna (Jun 23, 2010)

In my case, RAI was never an option for me. I had Hashi's, hashitoxicosis, swinging hypo to hyper, labs all over the place and a large, cold nodule. I had a FNA and the results were inconclusive with "rare fibrous fragments" found. Surgery or watching it for a while were my options, and I chose surgery for several reasons. My surgeon was very upfront about the very real possibility of cancer and I would not have been surprised if my final path report showed it. Thankfully, I didn't have cancer and my Hashi's was confirmed by the path report.

I have two friends who have had their thyroids removed. One had cancer and one has Hashi's. They both are doing very well and you can't see their scars at all. They were very helpful in my decision to have mine removed. I also have a friend who had RAI for Graves' and she is doing well now too. It took her longer to get regulated on replacement meds I think b/c of the dumping. ??? But she is doing well. One thing she has is a permanent red mark on her throat, which she said was a "burn" of some sort from the RAI. I don't know exactly what it is.

I know a lot of us have started threads right after our TT's on this board. You might want to search for "total thyroidectomy" or "TT". And if your hubby has any specific questions you can start a new thread about it.

When will he have it done?


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## oceanmist (Apr 30, 2007)

Thanks guys appreciate all info and am going to look for TT form... If the Doctor would have found anything she would have told him he had to have surgery. Hubby said there is no nodules nor does he have a goiter. There is no reason to jump the gun until we hear different after surgery. Were trying to be positive here........ Like I said interested on the out come of surgery only.

Ocean


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