MIDDLE-AGED WOMEN 40-60ish
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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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Hello ladies, It's been forever since I posted. Deborah2012 here.
Happy b-day, Eph!
Dianarose, sorry to learn of your mets. It's especially disheartening knowing you followed through on treatments and this is your "reward". For what is worth, as we age, some of the ladies from a thread I was on when I was first dx'd have developed other cancers that may (or likely may not) be mets. Melanoma for example. There is a link between BRAF tumor gene for BC and melanoma. Hard to consider that we could develop cancers like anyone else who never had BC and are completely unrelated to our BC history because we are living longer.
Elimar, I was dx'd with hypothyroidism with the birth of my second child 25 years ago. I've been on Synthroid daily since then. I love my Synthroid! It's a tiny little pill/tablet. You could swallow it with spit alone! I also think that it may have given me a slight boost in terms of feeling/looking more youthful. Since thyroid disease runs in the female line of my family, and onset is common with pregnancy/birth, I was told it was likely the genetic Hashimoto's hypothyroidism. Apparently, it's one of, if not the most common auto immune disorder worldwide. Synthyroid made a great positive quality of life improvement for me. However, I still have my limp-a-long thyroid glad. She just gets medicated. Good luck with your decision. You have a different case. However, I'm a walking testimonial to 25 years of Synthroid (with my thyroid intact). I love how you break your decisions into camps- the known and the unknown. Very logical and a good strategy to get through the medical decision making. I'll remember that.
My husband got re-org'd out of his high paying high management job and I went back to teaching second grade FT at 59 years old. It was super fun! It was also extremely demanding. I literally worked 6 days a week and would only have a few hours (like 3) each weekend that I wasn't working on school items. It was creative, too. I had 24 "grand kid/students" because I haven't any grandkids yet. They were wonderful! I could barely feed myself and get sleep so that is why I dropped off of the boards. However, I still get the email alerts and have been following them this summer. I'm rested, now.
Glad to hear there's no "carding" here on this thread as I turned 60 in May.
Oh, I go in for a 6 mos. mammo in a couple of weeks. In January, they thought they saw something potentially different at my annual appt. from my previous mammos. I had a repeat mammo and an US. They couldn't even find anything to biopsy. But they wanted to see me in 6 mos. instead of the usual 1 year. I had zero node involvement, and an Oncotype score of the hated mid-range (21). Both first and second onc opinions for my original BC said they thought chemo was likely unnecessary- unless I wanted to throw every potential thing at a Stage 1 with zero nodes. I did AI's but my onc and I decided I should quit after 1.5 years on it, because the SE's were bad for me. I was developing new diseases and the risk of recurrence didn't warrant it in my case. Kinda the known vs. the unknown equation. SE's were bone loss, and Glaucoma. I had an IV of Reclast for the bone loss at the time and have been fine ever since. I am aware of Zometa and jaw necrosis and other SE's. I haven't heard anything about Reclast.
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Deborah2012, It is great to get an update from you. Thanks for your opinion on Synthroid. I do value first hand accounts. You are right, however, that my case is different. My thyroid works just fine. Using the "if it ain't broke, don't fix it" model, I would hate to lose any part of it; but there's the cancer possibility (or probability, depending who you talk to) in the equation and what to do about all that? A Dx of Hashimoto's is pretty clear. If you need some thyroid hormone, Synthroid is the place to get it and it will make you feel better. I am not feeling bad AT ALL from whatever my thyroid nodule is.
My husband says I am giving new meaning to the term "'roid rage." This is making me so mad, so upset, so sad.
I feel guilty that I have to drag my family thru' something AGAIN. Before you all say "don't feel guilty," just hear me when I say I don't feel to blame or anything, I just feel bad that my family also has to go through the worry. Like me, they have been thru' enough.
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El, I had half my thyroid out years ago and didn't have to go onto Synthroid. It was only when the rest of it had to come out that I had to go on it. I take about 10 prescriptions a day and it's just another colour in my cocktail....
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Tomboy- when they did my Onco they did not know about all 17 positive nodes. Two scores were given. One on how well my cancer was to respond to chemo, scored a 6. The other was for recurrence, scored an 8. I still feel that a 6 is a 6 mo matter what. It is still the same cancer no matter if I had zero positive nodes or 17. Even the MO agreed I might be doing chemo for nothing.
Elimar- it is almost impossible to make choices when there are still too many unanswered questions and things that they are guessing at and assuming. Makes me crazy at times.
My MO had not seen the ct scan report so we scanned it and emailed it to him. He emailed back and said the concern is that the enlarged lymph nodes have cancer. We drove to his office today and dropped off the cd of the scan. He said he was going to review it and call the radiologist. Nothing is 100 percent clear😖. The urologist set up a date for surgery with a surgeon I have never met. That's not happening. I don't let them play on my fears anymore. I want more evidence.
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Sheila - thanks for the info. I started a new thread. Hope someone has some info
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Great suggestion, Sheila! Why didn't I think of that?
Dianarose, be sure and post back here what you find out. I am curious if the Zometa is the culprit.
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Good to see you Eph! Happy Birthday!
Dianarose--Wow, talk about confusing and inconclusive information!From my point of view there are 2 major issues going on here.One is the blockage of the right ureter.That's the tube between the kidney and bladder.If it gets blocked urine backs up into the kidney and causes physical damage to the kidney.The usual treatment is a stent, which is a small tube placed in the ureter at the level of the blockage and keeps the tube open and lets urine pass by.These are usually put in place for a few weeks to allow whatever is going on to clear up then taken out.The second major issue is to determine what is blocking the ureter.If it's pressure from outside then what is pressing on the ureter needs to be identified so it can be properly managed.If it's a tumor then a permanent stent may be needed.If it's a cyst than surgery may be the answer.If it's blocked from within, by the foreign matter (most likely cause) than identifying that foreign matter is key to fixing/preventing the problem.Totally aside from all of this, Zometa is known to have kidney damage as a side effect.I think you need to push to identify the foreign matter, and not agree to any treatment until a definitive diagnosis is made.You are really in a tough spot.Praying for you.
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NativeMainer- I can not find any information with details on how Zometa affects the kidneys. All I have found is that it can build up in your body and cause kidney problems or failure . I did read it usually only involves one kidney and and can not always be monitored by blood work . Going back to the oncologist tomorrow. So tired. It has been a month of uncertainty. No one has posted in the new thread I started. I was really hopi g someone had some input 😖
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I am finally used to having curly hair and MO is talking about taking my hair again. -
Wow! And long hair, too! Good luck, sweetie.
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