MIDDLE-AGED WOMEN 40-60ish

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  • luvmygoats
    luvmygoats Member Posts: 2,942
    edited June 2016

    Have a nice sleep Diana. Guess the iodine treated you OK today. We'll be here when you wake up.


  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2016

    Barsco - thanks for bring back the drinks. I had forgotten all the lovely party foods. Oh - and the Cheetos. Luv - good to see you. I guess we're on different threads now.

    DinahRose - hope the test results are good news.

    Eli - I agree. They can tell you much with genetic testing now and it's not invasive like a biopsy.

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited June 2016

    I'm back to having question marks pictured at the top. Perennial favorites of appropriateness.

  • Dianarose
    Dianarose Member Posts: 2,407
    edited June 2016

    came home to company. Love you but please leave now!!! I am tired and getting cranky.

    During the scan theykept waiting for the dye to get to the blockage but it wasn't working. Had to flip me on my belly side twice and it finally went. I am not feeling warm and fuzzy about this

  • TAB55
    TAB55 Member Posts: 198
    edited June 2016

    Dianarose, Sorry I logged on too late to join the pocket party. I hope your company is gone and that you're getting some sleep.

    image

  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited June 2016

    Dianarose--how'd the CT go?I brought a jug of homemade summer Sangria!

    Libby--LIKE!

    El--good for you making your own decision and sticking to it!

    Diana--flipping during the scan?Sound scary to me.Praying for you.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited June 2016

    Barsco!! Baby!! so good to see you again!

    Elimar, I just can't friggin' believe it! Buy a lottery ticket, quick!! I've had my thyroid taken out in two stages and am now on Synthroid for life. No biggie for me, really - just add another pill to my cocktail. Thyroid cancer is one of the very few cancers that will only grow in the place it started. I see the logic of them waiting. If it's been that size all these years.... I just kept growing tumours so they finally took it out so I can function properly.

    Dianarose, when do you get the results??? What a long haul with waiting! I need to let my breath out for you.

  • Dianarose
    Dianarose Member Posts: 2,407
    edited June 2016

    I get results on Friday. Waiting is stressful. 😖 Did get some much needed sleep. There is another weird thing. Since the beginning of the month when I got the Zometa my mouth has hurt. Felt like I had a bunch of sores. After taking the Benadryl it is better. I didn't want to do the Zometa this time yet MO convinced me. No more for me

  • barsco1963
    barsco1963 Member Posts: 2,119
    edited June 2016

    Eli - quite a task to try and decipher something that even the doctors have a hard time with. You seem to have your thoughts gathered and know what you want though.

    Waiting with you Dianarose. Hope that the warm fuzzies come back with your test results.


  • Dianarose
    Dianarose Member Posts: 2,407
    edited June 2016

    called my doctors office Monday to ask results of one of my test. The girl who answered didn't know where they were and was going to check into it. Called back today and talked to the nurse and she had no idea either. It has been ten days😖 Feeling totally frustrated today. I feel fine so maybe I will just stop going to the dam doctors

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited June 2016

    Call from my doctor's office Tuesday and I asked results of one test. The woman who called back said they were not back (from being sent out to hospital) and the dr. was going to call and check on them. Did not hear back yesterday & nothing so far today either. I'll call later today, if no one calls me first. It has been eight days. Feeling about as frustrated as always. I feel fine so, once I get my results, I doubt I'll return to the endocrinologist that I hate. (TETIH.)

    ---------------------

    This actually happened:

    Weds.: Doctor calls, sez: Thyroid nodule suspicious of papillary cancer. Get a surgery, etc. Any questions, call me.

    Friday: Guy calls, sez: Doctor wants to know if you have questions? (Well, since it's suspected cancer...I had about eight.)

    Friday: Girl calls, sez: Doctor wants you to come in. I say, Why, too many questions? Girl sez, yes. I say, he told me I could call. I am not doing another co-pay. How may questions will he answer for free? Two? Three? Maybe he can call me back and answer up to his limit of questions that he can answer for free, how 'bout that? (Tone of mixed sarcasm and outrage.)

    Monday: Girl calls me, sez: Doctor wants to get you in a.s.a.p. to answer your questions. I say, since he left me hanging over the weekend, I went online and got all my info. from Dr. Google. (Now working toward my Dual Associates Degree in Papillary Thyroid Cancer and Parathyroid Disease.) I say, all I want now are my test results. She sez she will have someone call me back.

    Tuesday: Girl calls me as stated in first paragraph. I tell her I want the test results; also have one question about further testing in order to get a more definitive idea of what the thyroid nodule actually is.

    Tuesday: I get passive aggressive letter saying to call the Doctor's Office because they had tried and failed to reach me on Friday. WTF? Could they be that disorganized? Who o.k.'d that letter to go out? The doctor? One of the two people I spoke to on that day? Somebody is a bit freaky.

    Wednesday: Waiting to hear...Feeling like these TacoBell workers shorted me a taco again!

    image (It's my metaphor for sub-standard health care treatment.)

    Wednesday: Call in to assistant at dr's office. Supposedly the doctor called the hospital path. lab., but the results were not in. Wait some more.

  • biscuits
    biscuits Member Posts: 3,304
    edited June 2016

    elimar...how frustrating! Have you checked out thyca.org? It is a very reputable site for anything dealing with the thyroid. When I was diagnosed with BC, last year, I was sent for a Pet Scan. Thank goodness, for something large "lit up" around the thyroid, larynx and esophagus. BC was put on hold until they could find out what was going on. It was thyroid papillary cancer and I had a total thyroidectomy with extended central neck dissection. I can truly say that it was quite the bumpy road for a few months! I am sending good thoughts your way...

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited June 2016

    Yes, biscuits, I did. That and so much more. There IS a lot to know.

    You really got both barrels last year with two cancers at once. I guess the good news is that both of the cancers you had do have a "good" prognosis. Not trying to downplay anything, but the stats are favorable for you. I bet it was a surprise to get that Oncotype score, wasn't it? Having that additional info. helped with the decision to do chemo. Sometimes additional testing is well worth it. Maybe I can get some.

    It's one thing to know that you have a thyroid cancer and deal with that fact, but it's another to have "question mark" like I now do. Very hard for me to sacrifice an important functioning glad for something so uncertain (such as mine could very well be a parathyroid tumor, and not necessarily cancerous; and that is actually what the results might tell me on this test I am waiting to hear about today.)

  • Dianarose
    Dianarose Member Posts: 2,407
    edited June 2016

    Elimar- I totally feel your frustration ! My DH said let's stop at the lab and see what's going on. She said the report was in and she would fax it again to the doctor. As we were leaving she came out and said if we went upstairs to medical records I could sign a waver and get the report , so I did. This is what the report says- Nor a kidney stone. The sample does not have the appearance of a kidney stone; it appears to be foreign material.

    That's it. What the hell does that mean? This was done at the Mayo Clinic too.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited June 2016

    Holy crap!!! Dianarose, your mind must be spinning! How would foreign material get into your kidneys? My kidney stones are uric acid which is very rare and they were identifiable. Calcium stones are the norm and they are very identifiable. So what the heck? Doesn't even say needs a biopsy or further investigation?

  • Dianarose
    Dianarose Member Posts: 2,407
    edited June 2016

    Barbe- that's all it says. Personally I think it is something from all the Zometa.

    Can't they break it down to find out what the hell it is? I just don't get it

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited June 2016

    I've had stones lasered, so they could do that...still holding my breath for you, sweetie.


  • Dianarose
    Dianarose Member Posts: 2,407
    edited June 2016

    Barbe- what I meant was they had the dam sample so they could have figured out what it was instead of say foreign material. Pisses me off that I have to pay for what I already knew

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited June 2016

    Thanks for the idea, Dianarose, to go directly to the hospital lab. Mine is as close as my doctor's office anyway. The mystery of the delay is solved...my biopsy samples were sent out to Quest. Unfortunately, I still have not heard when they are expected back. It has been 10 days now.

    I've had it with vague results too.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited June 2016

    Dianarose, they actually had a sample to biopsy???? WTH??

  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2016

    The fucking question marks at the top are highly accurate!

  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2016

    el, I owe you a pm with deepest apologies for taking so long

  • Dianarose
    Dianarose Member Posts: 2,407
    edited June 2016

    so my doctor called and told me about the results I already knew. I didn't tell her I picked them up yesterday. She said the foreign matter is not part of or being produced by my body. She suggested that maybe something got up there vaginally. Really! I don't think so! My kidneys filtered something that blocked my ureter. When I asked about Zometa she said probably not. I don't have a vagina issue and I am not buying what she is selling. I had a similar issue after my first few Zometa infusions. Same white stuff in my urine. Then I was off of Zometa due to major infection in my jaw, loose tooth, bone loss and major dental work. Now I have had a few infusions of Zometa and kidney issues again. She asked if I used lubricant for sex. No, and what the hell does one have to do with the other. Lubricant wouldn't go to my kidney. Just want to scream😖. I see the urologist tomorrow . Can't wait to see what crazy thing he comes up with.

  • luvmygoats
    luvmygoats Member Posts: 2,942
    edited June 2016

    Diana - hopefully the urologist has a bit more stuff up in the brain region than this doc. What was this doc's specialty? They have a specimen and still can't give you a concrete answer - unbeeeleevable!

  • Dianarose
    Dianarose Member Posts: 2,407
    edited June 2016

    she's my regular family doctor. Is it me or does her explanation sound crazy

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited July 2016

    The endocrinologist that I hate (TETIH) did call and it looks like the wonky parathyroid has been found. That was tiny and on the left, just pumping out excessive PTH like mad.

    Unfortunately, the nodule on the right did not have any parathyroid hormone in it, so it remain suspicious for papillary thyroid cancer. The TETIH told me that when his in-house pathologist reports "suspicious," then it is cancer about 95% of the time. That goes against what is called the Bethedsa Scale, where "suspicious" means cancer 65%-75% of the time. I guess this clinic has it's own scale apart from the rest of the world. Nevertheless, I very well might be on my third cancer. Incredible!

    So, now I will talk to a surgeon next week. (I did not say that I would have surgery.) The paradigm is shifting for these early low-risk thyroid cancers. Surgery is still standard of care, but there is evidence that "active surveillance" may be a better option. TETIH was fear-mongering me toward surgery. I feel that the surgeon will present a strong case for surgery as well, given that that is what he does. Stay turned people, to see if I cave and go for the big carve up or if I really go maverick this time. At this point, I don't even know myself.

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited June 2016

    Dianarose, Let me get this straight. So, at an earlier time around when you had the first Zometa, you did something weird with your vagina and some foreign material got shoved up your urethra? Then, it went away by itself. Then the next time you got a Zometa infusion, you did the same weird thing with your vagina (and who can remember all the weird things we do with our vaginas!) so that the very same thing happened again? All the way up to your kidneys. Oh, o.k.!

    "When you hear hoofbeats, think of horses not zebras." ~~Dr. Theodore Woodward

    imageimage


  • luvmygoats
    luvmygoats Member Posts: 2,942
    edited June 2016

    Amen to that Eli. Methinks the good doc may not have a clue.

  • Dianarose
    Dianarose Member Posts: 2,407
    edited July 2016

    elimar-lmao !!! Thank you I needed that😘

    I don't blame you for not wanting to jump at again another surgery. Between we have donated enough body parts😜.

  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited July 2016

    Diana--I just scimmed over some prescribing info for Zometa, and kidney damage IS a known (classified as rare) side effect. Some cases have required dialysis treatment. More likely if the patient is on or has had chemotherapy for cancer. I'm betting the "foreign material" is chemicals the body breaks the Zometa down to interacting with each other or other chemicals in the urine and creating crystals, which can be soft in this setting. Nothing from your vagina is going to get into your kidneys unless you have a very abnormal connection between the vagina and kidneys, and chances of having that happen with BOTH kidneys is almost impossibly huge. I hope the lab sent the material for further analysis to find out what it is made up of.

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