MIDDLE-AGED WOMEN 40-60ish
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The fucking question marks at the top are highly accurate!
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el, I owe you a pm with deepest apologies for taking so long
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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.
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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!
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she's my regular family doctor. Is it me or does her explanation sound crazy
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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.
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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
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Amen to that Eli. Methinks the good doc may not have a clue.
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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😜.
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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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native Mainer- I totally agree with you. Doctors never want to admit that something they prescribe is causing the problem. See the urologist at 10:30 today for ct results.
If I was going to be a super hero I wanted to be elasta girl not vagina girl lol
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Geez Eli and Dianarose - you are both having some challenges to say the least.
Not sure how many Canadians are on the thread but wishing you all a Happy Canada Day!
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Not a good day. Will post later when I get through my melt down. F'n lobular!!!
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Hugs Diana. Meltdowns can be good. We'll be here with the light on as that old commercial used to say.
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Sorry Diana - as Luv says, we'll be here. hugs
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{{{{{Diana}}}}}
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Sweetie......♡♡♡♡♡♡♡♡
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Well 1st-Happy 4th of July to all and Happy 62 to me!!!!
I am alive and well and my only explanation for my long absence is chemo brain!!!!!! Working graveyard has it's challenges; I love it, but it has totally whacked my schedule. So although I check Facebook multiple times per day, BCO fell off my radar. I'm stunned about it actually.
So, in a nutshell, E-I am SO sorry to hear of the newest news! suCks!!!!!!
Dianarose-holding you close in my heart!
To everyone else--good to see you again. I will try to remember to check in at least once a week. I had 6 or 7 pages to catch up on. I think that's the longest I have fallen off the radar since post # 1!
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Eph- Happy Birthday and Happy 4th!!!!
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ok, I am very confused. Well, worse than normal lol. Went to the urologist and he asked us to come down the hall and he wanted to show us the ct pictures. First visit he told us he didn't know how to read them, hmmm. He showed us the blockage in the right ureter. A section about 7 mm. Could not tell if it was being compressed or on the inside. A small bit of fat stranding. So he talks like he knows this is the breast cancer. Tells me I need to have a stent put in a a study done with dye. I asked if this would tell if it was cancer and if it would tells us what exactly is the foreign matter passing they my urine. His answer to both was no. Do what the hell is the purpose. When we got home the oncologist called and talking about the stent only lasts 4-5 weeks then I have to keep going back or possibly coming home with a bag😖. Then he is talking about more chemo and trials etc... Then at the end of the conversation he says he hasn't seen the report yet.y hubby went and got a copy. It says there are No renal masses. Two renal cortical cysts are noted. High grade but incomplete obstruction of the mid right ureter. There was no clear-cut abnormal FDG uptake in this area on the PET scan. This would be an unusual presentation for metastasis from breast. Wtf!!! The only that was not normal on my bloodwork was my white count was 13. No one but me wants to know what foreign matter I am passing . The report says my urine is passing on the right but at a slightly lower rate then the left. I had severe pain for 2 days then it suddenly stopped . I don't think if ur was cancer it just moved. There is no more blood in my urine and I am going just fine now a d no pain. We have been doing our own research and we feel there is a good chance it is from the Zometa. This happened exactly like this 2 years ago after I started Zometa infusions. Had Zometa on 6/2 and quote from the MO was that my blood work was cold stone perfect. Had Zometa and within 2 weeks all these problems. I think it has been building up and the markers were slowly going up due to inflammation . MO said the reason nothing lit up was it is a slow growing cancer. There is no proof it is cancer. I am so besides myself ! Any opinions?
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Diana-Sorry, but I think I would go to a different Dr. not affiliated with the hospital you have been dealing with....Good Luck, this is terrible for you...
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Eph- happy birthday 🎉🎈🎉🎈🎉
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Lorall- I feel like I am in the Twilight Zone😜. The MO is talking about doing the chemo that has the big lawsuits for permanent baldness, no thanks. I scored a 6 on the Onco DX. Doesn't matter where the cancer goes it is still a dam 6! something had to change because on the pet scan it showed a pool of urine that couldn't pass and no it has. Some women had perfect blood work and went into renal failure from Zometa. It's all wearing me down
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Dianarose, do you HAVE to have Zometa???? I'd rather keep my kidney function and it seems that you have a pretty good idea that it's the Zometa causing all this and the docs just don't want to admit it. Why don't you start a thread about it? Perhaps someone has done all the research for you. I can't imagine how you are dealing with this. What a crock!
An elimar, what's up with your diagnosis? Anything locked down, yet?
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Barbe- the Zometa was to help prevent bone mets. I am so done with it! How do I start a new thread??
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I'm not sure how to start a thread as it's all changed since I've done one years ago. I believe you do it from the Dashboard. Pick the topic where you start your thread carefully so it gets good exposure.
I'm worried about bone mets but wouldn't compromise my kidneys for a "maybe" it will help....
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Diana, not sure who gave you an oncotype dx, or when. I felt stupid at the beginning of my stupid adventure, my onc said not for me, only for node negative gals, also that it is only giving chances about recurring, and only if you are doing tamox or AI's. Any way, I am sorry to know you are having to deal with all this incompetency. I would do as Loral suggested.
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Barbe this is how...
- How do I start a new Topic or add a Post to an existing Topic?
- First, ensure you are logged in to the Discussion Boards. Once you are logged in, you can start a new Topic by navigating to an appropriate Forum. For example, if you are concerned and have a question about breast cancer, you would navigate to the "Not Diagnosed but Worried" Forum. Once there, click the "Start a new Topic" button to begin writing. When you are ready to post your new Topic, click "Submit".
- To add a Post to an existing Topic, navigate to the Topic to which you would like to add the Post. Then, click one of the "Post a Reply" links. When you have finished writing your Post, click "Submit"
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Dianarose, Although I have absolutely no knowledge of kidneys or Zometa, and very little about bone mets, but going on what you have written, I think that if I were in your shoes, I would cut out the Zometa. What is the actual percentage of risk for bone mets anyway? If it is super high, maybe there would be an alternative. If the risk is not high, maybe you would be comfortable not taking anything. I am relating to all the question marks you have in this situation. Too many unknowns. I feel like doctors ask an awful lot of us for Question Mark.
No, Barbe, I don't have a Dx 100% conclusive for cancer. The doctor feels like when this particular pathologist writes "suspicious" that 95% of the time it is cancer, but I cannot help think that it is just one person looking at a slide and so it all comes down to that one person. I feel like I would like a second pathologist opinion and maybe I can get that, I don't know. My situation is complicated, because the standard of care for "suspicious" is removal of one lobe of the thyroid. I am not inclined to get a surgery for Question Mark, and I think I would feel comfortable with just more watching, as it is not suspicious for an aggressive type of cancer.
However, I have a diseased parathyroid in there. That IS known, and I have some minor symptoms of that condition, but more importantly it will continue to cause trouble and worsen until it is taken out. (That is not necessarily the case with the thyroid which, even if cancerous, could be indolent and just sit there doing nothing for the next 20 years. Maybe.) I have not talked to the surgeon yet. My list of questions will be long, and I believe that I will not be left with ANY decision to my liking and yet I will have to make one. This has me crying.
I will do whatever I can to avoid going on Synthroid for life. That is a new normal that I would wish to avoid.
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I have also been finding that, like hyperparathyroidism, there is a suspected link between thyroid disease and breast cancer, so maybe my latest findings are not so off-topic after all.
http://www.webmd.com/breast-cancer/news/20150306/breast-cancer-survivors-may-have-higher-thyroid-cancer-risk?page=2
http://www.health.harvard.edu/blog/is-there-a-link-between-thyroid-disease-and-breast-cancer-risk-201604079407
There are many more articles where those came from. Is it radiation? Is it hormones? Question mark, question, mark, question mark???
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Eph, Congrats! Both on the birthday (many happy returns!) and for being able to live a life beyond cancer (may it never return!) BC--may it just keep slipping your mind.
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