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samdah

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Well, my level is up again. It was 9 last year and 11.2 this year. I have had two rounds of radioactive iodine and in both cases, the only uptake was in my left (and only remaining) ovary.

 

My doctor doesn't believe it to be a problem of cancer, but merely remaining thyroid tissue that is, for some reason, being produced in my ovary.

 

I feel I should just have it removed at this point. I am having it suppressed anyway because of my breast cancer so why not just take it out instead of worrying about lupron every few months.

 

Obviously, I am freaked out about it. Nothing showed on any PET scans I have had in the last two years so I hope that means it is not cancerous tissue.

 

Thoughts?


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samdah

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Well, oncologist has a different plan.

1-my white cells were back up today which was good so I got my herceptin.
2-he wants to run a PET to make sure things are still clear, if they are, may consider taking me off herceptin.
3-running a bone density to see where things are at. Gave me some information on aromasin since I am coming up on 5 years of tamoxifen.
4-he doesn't want to go right to taking my ovary out since down the line, ovaries protect women from heart disease, stroke, and bone loss.

So, I guess that is where things are at for now. He said that my thyroid levels were 9.1 and .7 last year and now they are 11.2 and .8 so not much change. And, since that is very low when compared with numbers in the 100s (that usually indicates lung recurrence) and in the 1000s (that usually indicates bone recurrence), he feels that it is not a huge concern right now.

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nosurrender

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Reply with quote  #3 
Samantha! I am so sorry you are going through this crap again!

I am going to go out on a limb and say just get the ovary out if that is causing you this grief. If you are going to switch to aromasin you have to be post meno so they will give you Lupron to turn off that ovary anyway. So why not just get it out so it won't produce anymore thyroid hormone?

And why Aromasin and not Femara? 

I am going to get an ooph soon. I am so done with these Lupron shots.

Let me know what happens girl. Hopefully Constantine will see this.

Love you sis
g


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Calico

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Reply with quote  #4 
I second Gina's opinion with all my heart!!!!

The onc says the ovary protects the heart, from stroke etc. but why????
It is estrogen that protects your heart. If the ovary makes enough for that, it makes enough for cancer cells to grow. You can't be only a little bit pregnant if you know what I mean.....

Take them out Take Fish Oil omega 3, Turmeric, Melatonin, Vit. D (Edge's Cam) and live healthy.
I wish Oncologists would be more proactive, they are afraid to advise 'agressively' I come to think....

No need to wait around with 'sub species' growing on ovaries and taking over the mother ship

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edge

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Reply with quote  #5 

Samantha (Samdah):

You have once again received excellent advice here, and I am in substantial agreement with Gina's and Calico's recommendation above and  with I should add, your own instincts, and I will make a powerful argument for this below momentarily.   

 

The Myth of High Tg Levels for Metastatic, Recurrent or Persistent Disease

Furthermore, I would certainly not agree with the casualness attached to the Tg levels observed:  the robust findings of Richard Robbins and colleagues at MSK (Memorial Sloan-Kettering Cancer Center) from their analysis of serum Tg levels (both unstimulated and stimulated) with respect to sites of metastases found patients with lung metastases who had a median suppressed Tg of just 15 ng/mL, and patients with mediastinal disease with an even lower median suppressed Tg of just 5 ng/mL; there can be residual / persistent or recurrent distal disease therefore, as this proves, with values as low as 5 - 15 ng/ml, not just numbers in the hundreds. 

 

Guidelines, and the Scan-Negative, Tg-Positive Patient

Indeed, the unconcerned attitude expressed re your Tg levels  flies against all official guidelines: the latest NCCN guidelines actually give consideration of additional nonradioiodine imaging if the RAI (radioiodine) scan is negative and the stimulated Tg is just > 2 to 5 ng/mL, while the guidelines go on to support the use of therapeutic RAI if the stimulated Tg is > 10 ng/mL (as yours is) and imaging studies are negative - this phenomenon is called  scan-negative, Tg-positive and given your diagnostic presentation that you reported, you would constitute a scan-negative Tg-positive patient.  And I should add that the recent management guidelines from the ATA (American Thyroid Association) are similar and suggest consideration of  therapeutic RAI (that is, additional 131-I treatment) if the stimulated Tg level is >10 ng/mL after withdrawal, or 5 ng/mL after rhTSH, and all imaging studies, including noncontrast chest CT, are negative.

 

The clinical implications here are critical because a leading TC expert Richard Kloos at OSU found that a single Tg greater than 2 ng/ml predicts persistent tumor and it is the widespread consensus based on the evidence that recurrent (differentiated) thyroid cancer is marked by a gradual rise in Tg levels,  a pattern that is more useful and has a higher positive predictive value (>80%) than an isolated Tg measurement (with only a 50% predictive value).

 

So I, based on the evidence (and in agreement with leading TC experts including Richard Kloos at OSU, Ernest Mazzaferri at University of Florida, and Elizabeth Mittendorf and Douglas Evans' team at MD Anderson, among many others) view (1) a gradually rising Tg, with (2) either a modest range of > 2 and below 10 mg/ml or more significantly an elevated range of > 10 ng/ml, as a clinical alert to the significant risk of persistent or recurrent thyroid carcinoma.  

 

A Preview of Lessons Learned

Given this, coupled with the fact that the only uptake is in the ovaries suggesting ovarian thyroid tissue with the potential for malignant transformation, and finally coupled also with the unambiguous survival and recurrence risk-reductive benefits of oophorectomy (OO) for endocrine-positive breast cancer, the perspective of your oncologist in resisting OO is difficult to discern and defend. 

 

The Mythology of Estrogen's Cardiovascular Benefit

I have no doubt that your oncologist's stance is well-intentioned but ultimately here misguided:

 

  1. First, estrogen’s known effects on the cardiovascular system include a mix of positive and negative, not clearly positive, as witness the fact that NIH stopped the estrogen-only study arm of the seminal WHI (Women's Health Initiative) trial in 2004, with the data showing that estrogen actually increased the risk of blood clots as well as stroke, and did not in fact reduce the risk of heart attack, and although some women with hysterectomies in their 50's may receive some benefit from lower risk of coronary artery calcification, the higher risk of both clots and strokes has been repeatedly and compellingly confirmed in other studies so that the belief in the heart protective effects of estrogen is, if not wholly mythical, at best a dangerous and seductive half-truth that fails to balance any small or modest but still questionable benefit on calcification against the substantial negative impact and risk from clots and stroke.
  2. Second, heart-healthy interventions such as diet and exercise (as I have outlined in my postings), high-dose vitamin D3 (which has clear cardioprotective benefits) plus CAM interventions with CoQ10 and especially high-dose hawthorn, can compensate for whatever not wholly established benefit there may be from estrogen. 
  3. Third, bone loss is effectively and positively addressed via bisphosphonate therapy which provides an added bonus of antitumor activity. 

 

In Conclusion, Final Lessons Learned

So the argument for retention of ovarian estrogen activity is wholly unconvincing although again I have no doubt at all of it's well-intentioned motivation.  Too many oncologists lose sight of the fact that one of the most powerful anti-breast cancer strategies we have is to render a women postmenopausal via ovarian suppression, whether medical (via LHRH/GnRH agents like Zoladex and Lupron) or surgical (via oophorectomy) or both, and here we have the added potential of benefit to removal of ovarian thyroid tissue with potential for malignant transformation in papillary thyroid cancer (PTC).

 

A Win-Win Strategy

In sum, one strategy therefore is ovarian ablation via oophorectomy and retesting Tg levels after that.  If Tg levels return to near-zero (below 1 ng/ml) then you will have accrued both a benefit to thyroid cancer as well as breast cancer.  Should Tg levels remain elevated - a scenario that is not impossible but I find unlikely - there is no harm in any event as you will still be accruing the benefit for breast cancer, and you would still be a candidate for additional 131-I ablation, and the front-line oophorectomy may obviate the need to rush to such additional thyroid therapy.  It is hard to see a significant downside to the oophorectomy, and certainly the risk-benefit ratio would appear to convincingly be in its favor. 

 


Constantine Kaniklidis

Brest Cancer Watch

edge@evidencewatch.com

Calico

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Reply with quote  #6 
I love to read your posts and learn, very happy to read that the lack of estrogen won't affect my heart health

Thank you for your explanation, thorough and calming as usual

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samdah

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Reply with quote  #7 
Thanks Edge!

I know what my oncologist is saying, but I also think that it is ultimately my decision. To me, the ovary removal has the two benefits that you described. Why continue Lupron shots when I could just have it removed and kill the perverbial 2 birds with one stone??



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samdah

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Reply with quote  #8 
Well, that ovary is now out and there was nothing but normal ovarian tissue in it.

What might be causing the increase in the thryoglobulin?

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edge

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Reply with quote  #9 

Samantha:

  

A Question

First, let me just clarify: the 11.2  Tg reading you cited was prior to the left oophorectomy, and pathology only found benign ovarian tissue?  Do we have a post-oophorectomy Tg reading?  Typically  we'd be looking for a downturn at the 3 or 6 month follow-up scan.

 

The Possibility of False-Positive Tg

Second, let me  note as I have done before  that there may be tumors benign or malignant, including strumi ovarii and teratoma, containing thyroid tissue, which  may be inducing the progressive Tg readings, and in addition there are other tumors (again, benign or malignant)  that also can take up  131-I, and  all these are potential sources of false positive 131-I  readings  (along with still others like endemic and multinodular goiter, Grave's disease, congenital TBG deficiency, benign adenomas, and acute thyroiditis, and 131I uptake in a benign serous cystadenoma of the ovary). So uptake does  not automatically signal residual thyroid tissue, but very effort needs to be made to determine the source of uptake.  

 

The Controversy of Scan-Negative / Tg-Positive Patients

Third, the big issue and controversy: for scan-negative Tg-positive (designated by convention, Tg+/WBS-) patients, finding the location(s) of disease, if any, remains challenging, and the optimal evaluation and treatment of this class of patient remains controversial, partly because of the low mortality from thyroid cancer of other  than high-risk patients, and also because there are no randomized trials to demonstrate that intervention could have prevented the deaths that do occur.  And as Leonard Wartofsky at Washington Hospital Center has argued, absent evidence of progressive disease, the risks of aggressive radioiodine therapy may not be warranted given ill-defined goals, in agreement with the conclusions of the recent University of Pittsburgh Johnson and Tublin review that notes that  the benefit of treating imaging-occult thyroglobulin-positive disease in low-risk patients has been called into question. 

 

Guidance: Further Detection Imaging

I  side with the great Richard Kloos at OSU and Leonard Wartofsky at Washington who  suggest alternative imaging procedures when given clearly measurable Tg levels, and for papillary thyroid carcinoma with a propensity to regional recurrence, that could include ultrasound (especially neck ultrasound), CT, MRI (with neck MRI for a negative or indeterminate neck ultrasound), or combined FDG-PET/CT. With respect to the latter (FDG-PET/CT) which can be highly effective  at  locating occult (below the  radar of other scanning techniques) disease, Amer Shammas at the University of Pittsburgh and Norbert Avril at the University of London, and  independently, Steven Finklestein at Washington University, found that FDG-PET/CT can provide precise anatomic localization of recurrent or metastatic thyroid carcinoma, leading to improved diagnostic accuracy, and is especially useful for what's called non–iodine-concentrating tumors (aka, non-iodine-avid tumors).  I am essentially in agreement  since tumor recurrence is usually - but it should be remembered, not always - associated with a progressive rise in serum Tg,  so in the  interests of  favorable patient outcome, the detective work  is recommended.  And before such high-detection imaging like FDG-PET/CT, it's currently recommended that antithyroglobulin antibodies be measured each time a thyroglobulin measurement is obtained, because the appropriate interpretation of thyroglobulin levels depends on the antibody status.   

 

The Bottom-line

So the guidance I propose is to:

 

  1. obtain a  post-oophorectomy Tg reading if you haven't already (at either the 3 or  6 month point);
  2. if  that reading does not show a decline, then additional  imaging, especially FDG-PET/CT, to assure no residual disease, should be conducted.

 


Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

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