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Good News / Bad News. --- Thyroid Ultrasound, BRCA Gene.

Thursday, December 05, 2013

Well, this morning I got some good news, and some bad news. I am thrilled about the good news. Not so much about the bad news.
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I had barely crawled out of bed this morning when the nurse from the clinic called wanting me to see a surgeon at the hospital TODAY. WTH? I thought everything was fine. But, they wanted me to see the surgeon because my lone thyroid nodule had grown.

So, while on the phone with the nurse, I ever so politely said, “Well, this happened because of the reduction in my thyroid meds. Cause every time they are reduced, this thing grows.” {I didn’t say, “This is YOUR fault it grew, cause YOU demanded I cut my thyroid meds, even though I discussed with you on TWO occasions WHY I have to keep my TSH at suppression level!} No. I was polite and tactful, while plainly getting the message across that this WAS their fault. And she only responded, “Well, I will tell the surgeon about the issues with thyroid medication.”

And, so I seen the surgeon. He looked over my 7 year history of thyroid ultrasounds. And, we discussed how the endo had insisted in January of 2007 on completely removing my thyroid - insisting it ‘would‘ turn cancerous. I wouldn’t allow it. So, he did ‘fine needle biopsy’ TWICE, cause he couldn’t get enough tissue for them to make a determination. So, again the endo had insisted, “You need to have your thyroid removed. The only thing that will stop this from turning into cancer is ‘suppression of TSH’ and you cannot have that because of your heart failure.” TO WHICH, my response to him was, “Well, since even having the ‘fine needle biopsy’ landed me in the E.R. with arrythmia, surely having you do a major surgery in that area will be disastrous for my heart, so I will take my chances on TSH suppression.” The endo threw a tantrum (very short fuse, that man), refused to give me enough thyroid meds to suppress TSH, and fired me as a patient. And, so for the past 7 years G.P.’s have done yearly thyroid ultrasounds to keep tabs on the nodule.

Now it is a fact that when there is a single nodule - especially if it is dense and not cystic - that the risk for it being cancer is much higher. But, my instincts (or denial) has always said, “It’s not cancer.”

Well, what really has driven my refusal to have surgery is doctors attitudes around here, and bluntly their incompetence. That endo had done a thyroid removal on a lady here in town, and had ‘messed up’ her parathyroid’s, and the lady has had nothing but trouble since with health issues, fainting, calcium levels etc. So, I figured, “No thank you!” to that crap!

So, when discussing this stuff with the surgeon today, he said, “I’m glad you advocated for yourself in 2007. Cause plainly you did not need to have your thyroid removed. And if you do, I can do that surgery without ever messing with the parathyroid’s. But, I see no reason why you should have been pushed to have the surgery. Plainly having a higher amount of thyroid meds and keeping your TSH suppressed has been the right thing for you. Your nodule IS a hard nodule, which typically indicates a higher risk for cancer, but it has remained pretty stable all these years. I think it is just some old scar tissue or some necrotic tissue, cause you do seem to develop necrotic tissue. After this long doing thyroid ultrasounds you have proven that endo wrong, and we don’t need to worry any more about cancer. You don’t even need to do the ultrasounds any more, and I will tell your G.P. to keep you at suppression level thyroid meds, cause it is keeping this under control. You will know if it becomes a problem, cause you will feel it against your windpipe as you did before, so if that ever happens contact me and I will do a clean surgery.”

Great news huh!?

Now for what else he said…


He noted that I am late for my yearly mammogram, and encouraged me to get on that. Then we discussed where I fall in the ‘risk’ catagories. And, I fall (just) the level below actually having cancer. I fall in the risk category of someone who has already at some point had breast cancer and been ‘cured’ of it, or someone who has the BRCA gene, or changes in the breasts indicating cancer may be on the horizon. Yep, not a very pleasant category to be in… But, I have known I was in that category for the past 13 years (when I got copies of my medical records - not because they ever had the decency to tell me…

But, then he told me, “I know you went for BRCA testing but didn’t follow through on it due to the costs. But, from your family history I feel sure the BRCA gene is in your family, but maybe getting less dominant in this last generation. So, you really need to keep up on your mammograms.”

Well, years ago I was thinking that too (long before getting copies of my medical records), but then I and the clinic I had gone to for BRCA testing, convinced myself I probably didn’t have the BRCA gene - and I certainly could not afford to pay for the test.

And, geez! I had asked this surgeon in about 1995 to do a ‘preventative double mastectomy', and HE WOULDN’T DO IT. Back then there weren’t these cases all over the news of women getting 'preventative mastectomies’, and so this doctors mind just couldn’t wrap his mind around it. He told me, “No. I won’t do it. I don’t see it as a currently necessary surgery, and I just cannot imagine any woman choosing not to have breasts. I mean, a woman has to have breasts.”

So, now all these years later he is telling me he is almost sure I have the BRCA gene. Now I am in too ill of health to have a double mastectomy. Now I just gotta continue to live with wondering WHEN this disease is going to hit me. And, if it hits me I am too ill to have chemo and all that.

I have had issues with these boobs every since I first ‘developed‘. From first bud I had fibrocystic breast disease so bad I was in agony. So bad that for the first year of having them I felt like crying from the pain. And, of course my ‘evil’ brothers got great pleasure out of hitting me there. That's probably what caused a necrostic mass the size of a softball that had to be removed. (I did joke with the surgeon today, "Well, at least that surgery equaled out the 2 sides. Ha! Ha! Really it WAS nice to be equal...) (Oh, back then when he did the surgery, I advocated for myself then too. I told him, "There is no need to put me under anesthesia. Just give me a lot of local deadening, and do it with me sitting in a chair." He did! Well, at least he started with me in the chair, then moved me to the lounge table...) I was really 'loopy' and really couldn't keep my head up, but I was NOT UNDER. LOL! And, a couple of hours later I went home. Oh, geez when the pain hit!!!

Well, all I can do now is set up the appointments for my GYN and my mammogram…

Oh, one of the biggest reasons I (now) hate going for my mammograms is because the last few years - every other year - she scr*ws up one of the ex-rays (not in focus) and has to do an (extra) image! That means an INCREASE in my RISKS!!! Dang it!!!






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  Member Comments About This Blog Post:

CAROLFAITHWALKR 12/7/2013 11:07AM

    The necrotic tissue may even be a tumor that shrunk and died when you were in your healthy phases of eating right, as you were probably well alkalized then at 7.36 or more pH, which causes cancer to die.

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CAROLFAITHWALKR 12/7/2013 10:54AM

    There are so many other intricate, sophisticated intereactions between food, halogens, leptin dancing with thyroid, etc, 8,000 + hormones, that that is probably another reason you have been able to remain okay, because of practicing a healthy lifestyle, even in the face of your multiple medical challenges and their medical incompetence.

Have you watched the leptin "diet" video lately? It's only 10 mins, and pay particular attention to the references (I believe in 3 or 4 places throughout it) to thyroid.

I watch this video again whenever I need a reminder of why to eat right, and why not to be the hard-wired night owl that I am. SUGAR KILLS THYROID. Because of sugar, night owl, and thyroid challenges we share, I mention the leptin video. Oldie but oh so goody (ignore the selling protein powder part).

Thread: The Science of Leptin & the No S Diet
http://www.sparkpeople.com/
myspark/team_messageboard_threa
d.asp?board=20918x33739x4363981
3
Remove line breaks in the URL before pasting it into your browser. When it opens, see link in original posting.

I know you've written about slips and backslides with food and sugar etc., but it's also true you have tried really really hard to live healthy, and that effort is what I think has helped you over these last 7 years. (Kudos to you, and put that in the reminder category on the billboard of your mind of "why you should eat right" when you are tempted.)

As for all the rest,
Ai yi yi. I wouldn't do the surgery either. You are right about so many things you said . . . effect of surgery on your heart, avoiding general anesthesia because of the complications, side effects, and not being able to come out of recovery well (if at all), using local instead of general, etc. I did the local instead of general when I had metal hardware removed from my ankle. Anyway, you probably would have already been dead 20X over, if you had listened to your doctors!! (Makes you wonder, doesn't it.) And as Dr. Coldwell says, it's not a side effect! It's a direct cause and effect! It's an EFFECT, not a "side" effect!! SOME doctors are BEGINNING to get a least a PARTIAL clue, like the one who validated you. But even then, all the American medical system ALLOWS them to do, is surgery and pharmaceuticals, or in the case of cancer, cut/burn/poison. That's why they immediately leap to the surgical solution. And prescriptions.

I listen, and I know you listen, to your doctors; but we ALSO have an independent, THINKING mind, in addition. We listen, but then WE decide. Which infuriates the ego of SOME of them. Thank God, we are starting to seem at least SOME good docs who are beginning to get a PARTIAL clue at least.

I do not believe in diagnostic surgery, 99% of the time, for me in my own life. I can't tell you how many women I know who had half their thyroid removed "to see if it was cancerous". (Re, in the comment above: "BUT the definitive diagnosis would be surgery.") For ME, ONLY, PERSONALLY, that is BS I would never, never do.

"Well, let's not talk about the past. We just need to deal with today.", is a beautiful and extremely unfortunate example of condescension and stupidity. See, we could be worse off: we could be like them.

Don't forget to stay alkalized, re disease prevention and cancer prevention. Remember Otto Warburg, Ph.D, MD, won Nobel Prizes in 1933 for scientifically proving, PROVING, cancer cells cannot grow nor continue living in humans with pH of 7.36+ at the cellular level. Do you like cucumber, fresh lemon, watermelon, and dark greens? If not there are inexpensive supplements you can take that also alkalize (real food is always best, of course). Get a list of highly alkaline foods, and choose off the list the ones that you like & like you (not allergic to), and incorporate them in your diet. I keep a cucumber in my car a peeler in my purse, so I can eat cuke dipped in hummus (or just plain) anywhere I am, and I drink fresh squeezed lemon in hot water, with or without a tea bag. In summer, I drink lemonade made with stevia or xylitol. Both stevia & xylitol are also alkalizers, and xylitol kills fungus overgrowth, a bonus effect for women. Also take a moment for a pH strip saliva test in the morning - it's not the same as cellular level pH but it's a very very good indication - and if I'm eating right and taking my vitamins, my test strip is always good pH, 7.36 or more. When I go off my vitamins and supplements (I hate hate HATE swallowing them), then my test strip is always in cancer territory, under 7.36.

For the mammogram - there's probably nowhere near you that has one since you're in a sparsely populated and rural state (I grew up in SoDak so I know how it is up there), but if it were my boobs I'd try to find a thermography machine instead of regular mammogram. And if it's covered on medicare/caid, I don't know. But no needle biopsies for me, and no smashing and xraying of the breasts for me.

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MADEIT3 12/6/2013 9:15AM

    Good news on your thyroid - maybe the surgeon was one of the competent ones? Sounds like. So sad about your mammograms. I just hate them and since I don't have any risk factors, refuse to go but every two years, soon to be every three.

Doctors just don't know what they think they know. I had a neurologist who insisted that my vertigo and fainting stemmed from some little known inner ear disorder, about which all the research said doctors could do nothing. She wanted me to have this invasive and very expensive test. I asked her what would change as a result of the test and she threw my chart at me (I was in a hospital bed at the time), then she stormed out of the room.

So I can relate a bit to what you're going through!!

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SLIMMERJESSE 12/6/2013 6:58AM

    Good for you for being a proactive advocate for your own health. I totally do the same thing.

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DSJB9999 12/6/2013 4:58AM

    Great job advocating for yourselfr - you strong lady!

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PHOENIX1949 12/6/2013 2:27AM

    Reference the medical community (and I have several close family members in the field), it seems no one is interested in considering the WHOLE patient and only concentrate on their PART of specialty which is why we have to advocate for ourselves. Much of their amount of patient time & prescribed treatments are dictated by the accountants at the insurance companies.

Mom used to say she knew why we were called patients -- we had to exercise patience when dealing with the medical community. She also would say they had medical practices 'cuz there were practicing on the patients.

I seem to get the most helpful information from the PA's and RN's.

On a medical visit last week to get some test results, I questioned a few items and the doctor stepped out for a few minutes and later sheepishly admitted it was to 'Google' what I was saying since it was not in the doc's area of expertise. Confirmed that I was correct in my interpretation of several items as they related to me and advised me to 'stick to my guns' when seeing the follow-up specialist.

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THE_SHAKESHAFT 12/6/2013 1:16AM

    emoticon

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LIVE_AMAZINGLY 12/5/2013 11:31PM

    Mine is less than 1/16th of an inch from my carotid artery, so if it is cancer it goes straight to my brain. So, I either would have had to get it removed BEFORE it turns to cancer, or once it's cancer, forget it... I'm a goner.

Since I really cannot risk having my thyroid gland removed due to my heart failure, I too wish I had never known about it. Nah, I take that back... If I hadn't known about it I would have been kept on extremely inadequate levels of thyroid meds (kept at a very hypothyroid level of about 5 TSH), and my heart would have been finished off by such inadequate levels of thyroid medication. So, well, there's good thing I know, and could 'take control of my own health'.

For the last year the nurse has been on me about having my TSH so suppressed, and the risk that causes my heart. Finally about 2 months ago I told her, "Well, before that you guys kept my TSH so high that I was seriously undertreated for my thyroid condition, and that was far more damaging to my heart than having my TSH suppressed". Her response to that, "Well, let's not talk about the past. We just need to deal with today." What else can you expect from medical people!
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(I really have no respect for the medical profession any more...)

Comment edited on: 12/5/2013 11:37:12 PM

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PHOENIX1949 12/5/2013 11:10PM

    Thyroid nodule comment, personal family experience (last section of my comment may interest you, but you may be aware of this already).

In 2001 my 83-year-old mom was found to have a solid, suspicious nodule (incidental to another test, unrelated to the thyroid). She had a very long list of medical conditions and had been told no more surgeries several years earlier (but survived several emergency surgeries after being told this). The needle biopsy almost did her in -- said she felt like a practice guinea pig & lost count of the number of sticks (she was very mentally alert and stayed on top of things). Nuclear testing followed showing the nodule to appear 'hot' which would indicate cancer BUT the definitive diagnosis would be surgery. At the initial consultation with the thyroid doctor, he was informed of the no more surgery recommendation (heart patient, insulin-dependent diabetic, broken back vertebrae from a car accident, etc., etc.).

I did my research to prepare for the consult appointment with the surgeon she was referred to. Toward the end of our conversation he confirmed that if it was cancer it was slow-growing and usually went directly to the lungs, sometimes taking as long as 20 years to make the journey. One more exercise in futility. Bless her heart, every so often Mom would comment she wished she didn't know about the nodule.

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1CRAZYDOG 12/5/2013 10:07PM

  Good job advocating for yourself! HUGS

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