Sign up Calendar Latest Topics
 
 
 


Reply
  Author   Comment  
samdah

Avatar / Picture

Goddess Forever
Registered:
Posts: 316
Reply with quote  #1 
I saw my oncologist today for my usual 3 week appointment to get my herceptin.

Apparently, no one told him what was going on with my thyroid. He was not happy.

He said that had he known, he would not have allowed them to give me the latest round of iodine therapy. He said that he would have recommended that they do another test in 6 months to see if there had been any change. He said that the level of thyroid in my blood after I got the 2 thyrogen shots was 9.1. He said he would have preferred that they checked it again in a few months to see if there had been any increase before going ahead with any treatment.

I told him that my ob/gyn and my breast surgeon agreed that I should have my ovary out since that is the only place that had any iodine uptake. He said no. He said that not only do they not know a reason for the uptake there, but that even if there had been thyroid cells there, the iodine would have zapped them.  He said that although I am doing well, I have bigger things to be concerned with than my thyroid. He said that my thyroid cancer was caught so early that it would not have recurred in the ovary.

He hopes I won't have to do chemo down the line, but he would want to preserve my bone marrow as much as possible in case I would have to do any in the future. He said that he will do another PET sometime in the future to double check how my nodes are doing since I had that show up before, but then nothing was found in the ones they removed.

He said he is getting everyone together in the same room and taking care of this. He does not recommend me getting surgery on my ovary right now. I was very glad I talked to him before I called to book the surgery!




__________________
Cancer is a word, not a sentence
nosurrender

Avatar / Picture

Moderator
Registered:
Posts: 7,476
Reply with quote  #2 
Sam, are you sure you aren't going to my docs?????
They sound like mine! The right hand doesn't know what the left hand is doing and when they do know they disagree!

I can understand him not wanting you to have had another iodine treatment without him knowing. But as far as that ovary, why do all our oncs want us to keep our ovaries? Especially when we have problems with them? Don't you have another one of those cysts on yours?

Constantine will be back  soon, he is busy on another project, but I am sure he will help you with this and be shaking his head in disbelief at the way we get treated by the medical community!!

hugs to you,
g


__________________


WE WILL PREVAIL





samdah

Avatar / Picture

Goddess Forever
Registered:
Posts: 316
Reply with quote  #3 
It is just nuts!

I go back in 3 weeks for my herceptin again and they said he will followup with me on the whole issue. He is bringing it up at their tumor board I guess.

It is weird though. He ordered an EKG for me in May. I just had a MUGA which he said was fine so that is confusing.

I don't know if I have a cyst or not. I had a PET done in March and November of last year and nothing showed up there.  All I know is that there was uptake of the iodine in my ovary. 

So, it is hard to know what is really up with any of it. I had to ask him twice if I was doing okay because he kind of scared me when he said I have more serious things to be concerned with versus a score of 9.1 on a thyroid test. I assume he meant just big picture-wise that it is more important that my system is okay to receive my herceptin on schedule. He said everything looked fine so I am trying to remember that.



__________________
Cancer is a word, not a sentence
edge

Chief of Research
Registered:
Posts: 1,129
Reply with quote  #4 

Samdah:

I have to agree with Gina's take on this, and it is not clear to me why your oncologist views the thyroid carcinoma as something of a clinical sidelight, nor why treatment cannot proceed sanely in a parallel but certainly coordinated track, and it is opaque to me how potential surgical intervention would dislodge the deployment of trastuzumab (Herceptin) for any clinically significant time.

Of course, I have no issue with the convening of a tumor board for coordinated analysis, although I must say I am not a fan of tumor boards that do not include the major player, and ultimate decider, for most if not all of the key discussion - the patient should be privy to, and able to query, all aspects of the deliberations and how fundamental components of her care are being weighed and decided.

But on the central question, although stemming I hope from good intentions rather than territorial turf establishment, your oncologist may perhaps - no fault of his own given his breast carcinoma specialization - be insufficiently aware of the real concerns and issues on the thyroid side. The concern is obviously - at least to me - of a very rare papillary carcinoma arising in a struma ovarii of the complex teratoma, and I'd be astonished if any serious proportion of thyroid carcinoma experts would disagree. So let me explain this:

Struma ovarii is a very rare disease; it's considered a (complex) ovarian teratoma - a type of germ cell tumor that may contain several different types of tissue, but in which thyroid tissue is usually the predominant or sometimes exclusive element - that can be malignant in a low, indeterminate percentage of cases, and struma ovarii can mimic other malignancies, but it typically occurs as a part of a benign cystic teratoma. Its etiology, natural history, and optimal treatment regimen are not wholly determined because of the small number of published cases, so its precise pathogenesis remains somewhat controversial. But as to what the best evidence says about such pathogenesis, since estrogens can regulate thyrotropin (TSH) release, hormone replacement therapy (HRT) is thought to play a role in the growth of struma ovarii. So in essence, as Gina shrewdly considers, there may very well be an important estrogen component.

As to diagnosis, cystic type strumas are quite challenging to diagnose, and non-malignant proliferative changes within struma can be misdiagnosed as cancer. In general, positive IHC staining for thyroglobulin, T3 and T4 is taken to confirm the diagnosis of struma ovarii. However, because of its rarity, there is no complete consensus on struma ovarii treatment, although there has emerged some considerable agreement due to recent research data. Certainly, each case must be managed individually and definitive therapy would depend on the extent of the disease or involvement.

The most important complications of struma ovarii - although again, quite rare - are malignant transformation and thyrotoxicosis, but especially the former, so the fear would be of a rare papillary carcinoma arising in a struma ovarii of a mature cystic teratoma, since although extremely rare, malignant transformation is known to occur, usually as classical papillary thyroid carcinoma (PTC), and so raises the possibility of malignancy arising in these struma ovarii. Given that, surgical removal of any ovarian neoplasm is a prudent recommendation.

Although papillary carcinoma is the most commonly occurring thyroid-type carcinoma in ovarian struma, it's been decisively established by my compatriot, Christos Papanikolaou at Hippokration General Hospital that histological malignancy in struma does not necessarily equate with biological malignancy - a rather subtle point - so the majority of thyroid-type carcinomas do not spread beyond the ovary. For this reason of localization to the ovary, simple oophororectomy is indeed the therapy of choice for the vast majority of patients, as agreed upon by leading thyroid experts Lawrence Roth at Indiana University and Aleksander Talerman at Thomas Jefferson University, and Mehrangiz Hatamia and colleagues Albert Einstein College of Medicine, among innumerable others.

I uncovered a telling case of this whole scenario in the literature much like yours. French researcher Ghander and colleagues described the case of as woman who presented with a papillary thyroid carcinoma. After 131I administration for thyroid remnant ablation, a whole-body scan showed a thyroid bed uptake and a pelvic uptake corresponding to an ovarian cyst on ultrasonography, with normal PET scan and with preablation thyroglobulin more elevated than usually found after total thyroidectomy, and in which the histopathological analysis revealed a benign struma ovarii. In this case, serum-stimulated Tg returned to undetectable value and diagnostic WBS was negative at 6 months after oophorectomy. This treatment procedure follows the consensus that surgery should be scheduled as soon as safely possible because of the concern of malignant transformation. Of course, every case is individual but this suggests how mainstream the agreement would be to proceed to oophorectomy as a prophylactic maneuver, something perhaps your oncologist is not folding into the broader perspective of joint carcinomas, if of course he is at all aware of these somewhat arcane considerations and findings.

So in any integrated treatment plan coming out of tumor board considerations, the thyroid "voice" or perspective must be weighed and given ful respect, preferably during such proceedings, but afterwards if necessary, before final settlement of your plan of care, and there should be an avenue in which anti-HER2 therapy can be timed in coordination with any surgical intervention to not impose any excessive delay in the initiation of Herceptin therapy. And of course, even low levels of hormone positivity as in your case still represent potential beneficial therapeutic targets of an endocrine therapy like an unilateral oophorectomy, and may confer some extra measure of anti-estrogen protection that is not generally trivial.


Constantine Kaniklidis
Breast Cancer Watch
edge@evidencewatch.com

samdah

Avatar / Picture

Goddess Forever
Registered:
Posts: 316
Reply with quote  #5 
My oncologist met with my breast surgeon and my OB/GYN. My ENT was unavailable. They decided to have me keep my ovary.

Since most people with struma ovarii present with a mass or tumor, and I don't have one, they decided to keep things in tact for the time being




__________________
Cancer is a word, not a sentence
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.