I am sure you have noticed that Nikki has not posted this week. For those of you who have not read her last post (It's in the "help with pictures" discussion) - she is having some medical problems and will not post until they are cleared up. This is what she wrote - "I am in severe pain with my neurological disabilities... I won't be able to post for a bit until I get the levels back to a more manageable roar.I will be more than happy to help anyone when I feel better."
Her e-mail is private, so I cannot give it out to anyone, but I wanted you to know that I sent her a get well message from all of us.
Thank you Joan for taking the time again for all of us. Yes nikki is sorely missed and we are all hoping for her awaited for contribution to be very soon. Lee
Nikki - You are in such a difficult situation needing to care for your DH and needing so much for your own needs. All of your cyber friends do what we can - just thinking of you and wanting you to be well!
Awww how sweet are all of you?!! Thank you so much ((hugs)) I thought this would be the best place to update you on my test results.
I have to admit this is all new to me so not sure if this is normal or not. I was told I have 3 complex masses on and around my ovaries, so when they did the biopsies, I assumed it was the masses they were testing. Not so. They biopsied the cervix etc. Good news, no cancer there. I am delighted by that of course! But, confused, as it is the ovarian cancer I am concerned with.
The nurse who called today with the results, said it is normal procedure not to test the tumors as if it is cancer, it could spread. Ok, I guess that makes sense. But what doesn't, at least to me... Is because the other test came back negative, they are not going to remove the masses right away. Instead they are going to wait 2 to 3 months, and give me another ultra sound to see if they have changed. If they have changed, I am told that is good. If they haven't they would go ahead with the surgery. Hmmmm am I the only one that sounds wrong to?
I am sure they deal with this kind of thing so often it is old hat to them. But to me, I would like to know like yesterday! I have a call into my primary doctor to see if this is "standard procedure". Going to be a long couple of months I'm thinking. Anyone else have an experience similar to this?
Nikki - At least you don't have to immediately go for surgery, but these waiting games can surely wear on a person. I have called 1-800-4CANCER many times. They will answer your questions. You can also request written material on your particular concern. They have information for patients or for the doctors. I always requested that for the doctors since I figured that would be more details. Maybe this is all on line now. Another book I found helpful is CHOICES. It's been a while since I've needed any of this, but I imagine it has been updated. Hope this helps.
Nikki, i hope you dont mind, i had a call from my ob/gyn son a bit ago and i just read your post to him for input. everyone here is worried for you and its enough having a spouse with AD on top of anything else. here is what he said- if you are within the parameter of still having periods whichh i said you probably are as you are younger, he says its standard NOt to biopsy an ovarian mass cause it can cause it to expand into another mor aggressive type -if you were menopause like my age it would be different. the 2-3mo waiting period is usual too. what he did suggest you may ask your dr about is getting done ASAP if not done already, 2 blood tests, CEA and CA125. which he explains is like testing for elevations that will happen if these tests show elevated levels =he says if it showed elevation HE (his opinion) would not wait and would opt to operate to remove mass asap. these 2 tests are like the PSA the men to for prostate cancer testing. hope this explains this. i know if i had questions and anyone here could offer any input i would want that info, so hope i havent overstepped your post by asking but i have it on very good opinion he is a 'super doc'...:) i would do whatever he said if i needed anything for sure. anyway, i hope you can ask your dr about those 2 tests soon, maybe they have already been done and showed nothing inportant so thats why they chose to wait??? we all want you to be ok! divvi
divvi, I want to thank you for talking to your son regarding Nikki. I was concerned about the delay as well. I'll feel better when she knows the results of those tests. Nikki, take care!
Those of us here that can profit from info here from ANY source is a good thing:) we have professionals here that offer lots of free input -lets not forget, dear Jane who helped so many with her invaluable medicare help, dr marsh, our nurses, dentists, scientists, and all the professionals and non professionals who have the benevolence and kind nature to want to offer help to anyone in times of need. I dont feel one bit concerned picking my dear sons brain for info and forwarding it on any matter:) on more than one occasion he has been right with regards to getting medical help asap for my husband when i didnt see a condition arising, ie UTI- ps, i paid for his education so now we can all benefit when possible..HA! he agrees. divvi
Divvi, I wish I could reach right threw this computer and give you a big ol hug!! I can't thank you enough for talking to your son. I FEEL so much better now! I wish your son had been the one to call me. NOW it is much clearer. I will call the doctor tomorrow to see about the blood work. I know they did draw blood, but i assumed it was for another kidney function test, we will see.
I haven't been sleeping well. But today Lynn is looking and acting so much better. And now you cleared up my worries! I think I will feed Lynn and take my weary butt to bed lol. Again, thank you so much ((Divvi)) And thank all of you for your thoughts concern and support.
Nikki, yes by all means get to bed early and some much needed rest! it does help to get some answers upfront and not let our minds run amouk needlessly. if your dr is good -which i am hoping and assuming he is:)he has already run those tests and thats why he is waiting to see about how to proceed.
wont it be good to hear 2 specialists in different states who say the same thing on a diagnosis?? i hope this is the case for you now- haha..but you know how drs can be overly cautious about giving out advice without actually 'seeing' the patient.. at any cost, i am very glad you feel more confident and will check with your own drs. nittynite and sweet dreams friend, divvi
I slept like a pup with no worries :) Thank you again Divvi!! Thank you all ((hugs)) I'll keep you posted after the next round of test in 10 weeks or so.
Nikki, I've had a thyroid issue and was told to just 'wait' and check again in 3 or 6 months..duhh can't remember but at the time I thought, what the heck, WAIT?.. I was frantic..and Bluedaze I think told me to 'calm down'.. and then offered much needed practical advice. The frustration of having doctors who appear to be complacent or unaware just how this is HUGE to us even if routine to them, makes things more difficult especially now. My main thought was, if I'm out of commission with any of this, how and who is going to look after DH.
I can't tell him whats going on because until I know if this is cancer, I don't want him to get 'stuck' on that idea.
ANYWAY, Divvi, I'm so thankful that you've got that well educated son and he has been able to help us all! Thank you too for such helpful insights along this journey. I appreciate you and everyone here so much.
Frand, tomorow I go for another ultrasound on this stupid thyroid. I chickened out a second needle probing. Just couldn't do it.. it helps to have that number to call for cancer information.
Nikki, thank you for posting and know that you have a literal ARMY of well-wishes in this place.
Judy, I have gone thru lots with my thyroid, including the needle biopsy. I know a little about all the different procedures if you need someone to talk to about it. I did end up having surgery and it was very successful.
Good morning to all- I am glad there is some sunshine today:) Nikki, so glad you got some much needed rest. I know you will be calling your own dr today and just wanted to add one more thing- you should consult one on one with him, not the nurse on what follows. because you said you had prior brain issues, surgeries, radiation i think you said, its urgent you should get his pros/cons about WHY he thinks waiting is optimum in your particular case with regards to your past 'history'? not sure exactly what your brain surgery entailed or the results but discuss this with him in full and then you will have a better idea if the waiting 2mos+ is still the best choice?? I am sure you already informed him of your past health issues, but depending on each case and facts, what is 'normal procedure' in some instances, would not be in others. just to be frank with you because we care, if it were me, i would want to know if my past brain surgery issues should warrant not waiting the 3 mos and just to go in and get this done just to be on the safe side? just put us all at peace here, and let us know you have done a thorough consultation with your dr with regards to all these concerns, please?? everyone here is holding you iin their well wishes for the best -divvi
On the thyroid thing, they HAVE to wait unless they have multiple tests on hand. That is why I tell everyone I know to go out and get a baseline test NOW. I made my daughter get one at 25. When she was in her middle 30s, and her thyroid went wonky the doctor didn't have to wait. Because she had family history with thyroid (me and my mother) her doctors not only did the baseline test, they tested every year for a decade. He took one look at the progression and got busy getting her healthy NOW.
But if you don't have at least TWO tests, they don't have enough to go on if you are sub-clinical. That means if you are testing healthier than your symptoms say you should be.
Anyway, this is why some of the time they need to see two or more tests over a range of time. Is whatever it is progressing?
Hi Nikki, After reading about your situation I too have a little to throw at you, I am an ultrasonographer and what your doctor has suggested is very common. The "complex masses" may only be cysts that may go away with a cycle or two (depending on your age). I see this happen all the time. I hope this helps a little. Denille
Thank you all so much. I sit here in awe …it is amazing isn't it, we come here with one thing in common... a loved one with AD, but we form a connection a type community or family and we come to care so much.
I thank you all for your help, Fran I called that 800 # early this morning! Thanks Denille, thank you too. It would be so much better if the doctors said possible harmless cyst, instead of complex mass! lol
Divvi, I did take your advice and did call him. I said I truly wouldn't feel better until I spoke with him in person. He called me back within 15 minutes! He hasn't done the blood tests your son suggested, but he has valid reasons. I have kidney issues.. nothing major, but have a history of stones, infection and inflammation. I also have a 3 year history of gross hematuria (blood in my urine always) He explain due to all these factors there was a high chance the test would come back positive, even if there is no cancer, a false positive. I asked the folks at the 800# and they agreed. So, that makes me feel better too!
As for my brain surgeries, they first went looking for a cause of my Trigeminal neuralgia I have since had 3 more surgeries to try to relieve the TN.. sadly they failed. This OB-GYN, is very familiar with this as he is the doctor I have seen since then. He was wonderful today, and even apologized for not calling in person. He said it was standard practice to have the nurses call. I told him- he might want to rethink that policy! I feel much better now. Thank you all so much!! This will still be in the back of my mind, but it wont upset me as I was .. thank you for letting me share and for offering your support ((hug))
Thats good that you spoke directly with your dr and got to hear things directly from the horses mouth!:) I am sure you are in good hands and your trust is warranted now, and we will all be relieved when your next round of tests is over. crossing our fingers for you and others who have their own health issues on top of AD. like this isnt enough-double sigh! divvi
Nikki, you are very precious to us and we care deeply for you. Please keep us posted, and more espcially once he does perform the tests. You are in my thoughts and prayers!
i have read the messages on this thread and think you all are so precious and wonderful to your fellow members of this forum!! I have very little wealth of knowledge and/or source of knowledge that I can't really give pertinent advice on much of anything but I am learning so much from the various topics discussed. I do admire you Nikki for your indcomitable courage and spirit. With an attitude like yours, I know you will be okay. And to you Divvi and others, you are the ideal friend.
Awww how sweet ((hugs)) I am ok. Resolved that I have to wait 10 weeks. I figured this would be as good a place as any to let you all know I will be away this week. My sis is coming home for a visit! I can't wait to see her. We go tomorrow to say good-bye to Lynns sister who is heading back to CA. Was hard for her to see his decline, but she is still glad she came. Best of everything! See you next week :)
Mary, you are so sweet. I have just been in a bit of a funk of late. Missing my Dad...... seems it should be getting easier by now. But, it isn't. If anything I am doing worse. *sigh
Lynn is doing really well all things concidered!! I am enjoying our time together and thankful for each smile. Yesterday was a really on day for him. He knew there were 52 cards in a deck! Amazing how something so simple, can mean so much to us :)