You know, I HATE IT when Doctors don't give you the WHOLE story! This is WHY I research so much, and get copies of my actual records so I KNOW EXACTLY what is going on with ME! I told you that the surgeon who did the surgery on my head had not given me the ENTIRE story. Well he was what I would call a "Sugar Coater" not giving ALL the information! He was the Doctor who had ordered my CHEST CT scan cause "something" showed up in my Pre-op x-ray. Well I went and had the CT done, and when I returned to him all he told me was " you have a little spot on you lung", and "they recomend follow-up CT in three months". Well I TRUSTED him, and didnt get the copy of the CT scan. Well, the more I thought about it, I called over there (300 miles away from home) and asked them to SEND me a copy of the report. Well after SEVERAL calls, weeks went by, and FINALLY AFTER I had surgery, I got a copy of the CT. And found I had 2 nodules on both lungs, emphysema, scattered larger bullae(blisters) on my lungs! I was ANGRY to say the least, because I WOULDNT have had surgery on my head, until THAT was addressed! So that was a lesson learned. That NOT all Doctors will disclose EVERYTHING!
Do you "Want" to know what the report said? If so, I highly recomend you go and get a copy of the actual report, that way you CAN be your OWN ADVOCATE! You cant be an advocate unless you have ALL the facts.
I'm So sorry your going through this!
I want to add something to maybe give you some sort of peace of mind...
I had a renal ultrasound last year for kidney pain I had been having. In that ultrasound there was a "3cm complex cyst" found on my right ovary. My primary care freaked, and said I would have to have it removed. I got an appt with the Top GYN/ONC at Mayo clinic for a second opinion. He did a "internal ultra sound" and found that it was a "funcitional cyst" being that it was several harmless cysts that come and go with ovulation but had "appeared" like a complex cyst on the renal ultra sound. Also even with the inturnal ultrasound they could NOT find my Left ovary, and he thought that perhaps they had removed it when I had my hysterectomy. I told him I KNOW they DIDNT remove it, I had my records. Well long story short, he recomended a repeat ultrasound in 6 months just to be sure. And low and behold, the cysts on my right ovary were just about gone, BUT my previously "missing" LEFT ovary, had shown back up, with 2 "functional cysts" on that one as well. Inturnal ultrasounds are more accurate in that case.
"TRY" not to read TOO much into this, until you have ALL the facts. I know its hard, but theres a saying I like to refer to..."Just because you Hear Hoof beats, dosent necessarly mean its a "Horse", It just MAY be a "ZEBRA"! I have learned that I appear to be a ZEBRA with SPOTS on MANY occations!
Take care my friend, try not to worry, and please if you need to vent, by ALL MEANS Im here! Prayers continuing!
Annette, thank you for replying so quickly...yeah, this hasn't been a "fun" couple of days for me.....and thank you for telling me that I can obtain my Dr.'s report on all of this ... I never would of thought of it myself...
I am going in there tomorrow as I said, for the internal ultrasound and I will definitely request it ...
whew! I can't believe what you have been through already!! wow!!...thank you though, for your knowledge in all of this...it does help me, it really does...
I guess what I don't understand, is back in January, when he first felt this "thickening" and what must be down on the report as a "mass", why wouldn't he have urged me to have an ultrasound immediatley?? wouldn't that have made sense?? wish I would of thought of that question when I spoke with him the other day, but of course I didn't think of it until that night...
I did ask him the other day when the scheduling nurse called me at work to let me know about the cancelling of appts. and surgery for different days, etc..(I said I needed to talk to the Dr. regarding this)
why it's being called a "mass" now?? he said well, he likes to think of it as more of a "swelling"...most of the times it isn't anything, he sees this alot, but then again there could be a malignancy...oh swell, that made me feel sooo much better!!!...anyway, I called this morning to the office and spoke with the nurse again, and asked when I could expect the Dr. to look over this ultrasound, and she said by Tuesday of next week...so I will call and ask to speak with him before I go through any more appointments and tests...
I feels as I kind of found a "friend" in you...thank you so much for your support...appreciate all your input and prayers!!
I will not be here tomorrow, but will be here all next week, except for Friday, on......God Bless....J.T.
Yes I would have thought he would have urged you to have an inturnal ultrasound at that point. What kind of Doctor is he, cant remember if you had told me. Uro/GYN, GYN, or URO?
I hope you get a copy of your record tomorrow, and I would make sure when getting a copy, ask specificly for a copy of the actual ultra sound also, that way you will know EXACTLY what the radiologist has seen , Not your Doctors impression OF THE radiology report.
Try to have a good weekend. Will be checking up on you Next week to see how things went.
I'm glad I can help at least listen. Having someone to vent to, can mean the world when facing something you havent before. I have found myself in your situation many times for various medical woo's and have found MANY terrific friends (online friends) that have been my sole support. I talk with people from Scotland, Canada, and MANY states in the United states, so I DO understand what you mean. You sound like a wonderful person as well, and just want you to know your NOT alone!
Annette, he is a Uro-Gyn...and I will ask for a copy of the actual ultrasound...I wonder if they will give me a hard time about this?? Do you think they can give it to me right away, or is it something that I will have to wait for??
That's awesome you have met so many people all around the world...that's awesome....Thank you again for your concern and support...
You have a good weekend also......J.T.
They shouldnt give you a hard time at all after all they are YOUR records, and they should be able to give it to you right then. Although they may feed you a line about once you sign a release, it MAY take 48 hours to obtain.
My primary cares office will give them to me right there, and my neuro's office IF I DONT have an appt where I can actually ask the Doctor for copies(because she will give them to me right there) will have me come in and sign a release, then call me when they are ready.
Either way if he was the Doctor that ordered the ultra sound to begin with they HAVE TO give them to you.
It's become a bit more difficult getting records because of the new "HYYPA laws" you have to get the records from the doctors that ordered the tests or their personal reports. GOne are the days when you could go to your primary care and get any records, and gone are the days that your doctor can send another doctor YOUR records without YOU FIRST signing a release allowing them to do so. Just takes a bit more work.
Wish you the best,
God bless and take care,
Annette, didn't have a very good weekend....oh, in answer to your question, they said they would mail it to me...
anyway, the radiologist said he was "very concerned" for me... You shouldn't even be able to see my ovaries since I have been post menopausal for quite some time...he couldn't even see my left one at all, but the right one is very large, very large with some smaller tumors or cysts below it...he said this needs to come out NOW...well, I told him Monday I would be going into surgery (17th)..he also asked me if I had had a "biopsy" a short while ago, and I said no, I never had..well, he sees some fluid leaking also, so that can't be good either...my let side is clear as well as the uterus though....meanwhile, I am trying to get in to see an ocologist for a second opinion, that specializes in this field to see me, or review this ultrasound also, so we can see what order things need to be done here...which priority is first here...they didn't say malignant, but I pretty much think so...I should be hearing from the Clinic in about 24 hours, which would make it later today or in the morning...I will be talking to my Dr. also, (who also is from the clinic) as I was told to talk to him on Tuesday, but will try for today I think...that's all I know for now, will let you know more as I find out....J.T.
I'm glad to hear your going for a second opinion to a GYN/ONC. I did that same thing with the cysts I had. Begnin cysts on the ovaries can rupture or leak also. I'm not going to say try not to worry, because I know thats near to impossible in your situation. BUT remember one thing I had told you before, "Not everything is what is seems" all the time, My case in point.
I learned a lesson being told I had lung cancer, then finding out it wasnt cancer after all, So "TRY" not to worry, until you have ALL the facts. Wait and see what the Oncologist has to say. You mentioned "clinic" is this a major medical facility your going to?
I will continue prayers for you, just know Im thinking about you, and giving you hugs from afar.
Hope you can get into oncologist soon, please let me know how you make out. I'm here for you if you need to vent.
Annette, sorry it has taken me so long to reply...I had to leave early after being here for just an hour or so, just couldn't stay...am okay now....
My Uro-Gyn called me while he was on the road yesterday, and said he looked at the ultrasounds and prompt action needs to be taken...well, I already knew that...anyway, he is trying to get an oncologist to be there with him during surgery, a specialist in this field....so, now, looks like appointments are being changed again, I will know by today, as I already talked to the scheduling nurse this morning, and she should be calling me back sometime today, most likely early....
Yes, the Cleveland Clinic is a major health facility in Cleveland, the hospital I was supposed to go to originally, was Hillcrest, which is an affiliate of Cleveland Clinic.....
Thank you for your kind words of support, it helps me drastically...I'm much better today....will let you know what I hear....Your friend, J.T.
So GLAD to hear your going to Cleveland Clinic! Your in GOOD HANDS! I go to a Mayo clinic here in Florida, its SO important to be in the BEST hands, what a relief!
They have come such a long way today in the medical field treating difficult , Rare, and what seem impossible diseases, your at a place where they are at the top of the field, your going to be ok my friend.
Please let me know if you can when they are scheduling you for surgery.
Take care, stay strong, and of course continued prayers going out to you!
I've got most of the scoop right now...Surgery is next Wed. March 19th, at Cleveland Clinic...what time I won't know until the day before...they changed
oncologists because the one they wanted originally would not be available...I now have the Head Chairman of oncology in this field, at Cleveland Clinic to assist him, which I am pretty glad of...
I meet with him this Friday, but have to run over to the other hospital way over on the other side of town same day, for the urodynamic testing, they did the best they could as far as appointments go, so that's what I will have to do that's all...they want to do blood work also to see if there is an elevation of blood cells which tells them there is a problem right there...
I meet with my Dr. on Tuesday, the day before my surgery, back at Cleveland Clinic, and that will be it.....
THANK YOU so much for your support and on going prayers....I probably will be working 1/2 day on Tuesday, day before surgery, when I meet with my own Dr., as Cleveland Clinic is somewhat in downtown Cleveland, and I work downtown, so I can just scoot over there....hopefully...if appointments stay the same....God Bless and appreciate so much all of your prayers....J.T.
Well you cant get better than that, Head Chairman of Oncology thats fantastic! This is awesome news!
Thats one thing I LOVE about Mayo clinic, is that I TRUST them with my life. When I was headed in for surgery on my lungs and brain surgery for that matter, people kept asking me if I was scared, I answered them truthfully, "absolutly NOT"! I have such a peace about me, and I believe that in the end, its in Gods hands, and being in GODS hands COMBINED with AWESOME DOCTORS, your doing ALL you can, at having the best chances. No one can do better than that!~
Thank you so much for the update, this is great news with the doctors, I'll be here if you need to chat, Take care, and stay strong my friend!
Thanks for responding. I do understand what your going through and its scarey but remember one thing, your NEVER truely alone, God is with you, people are praying for you, and dont be afraid to pray for YOURSELF you are as deserving as anyone. He walks with us ALL my friend.
I will look forward for your return to work, to get an update. Stay strong, be safe, speedy recovery, and of course, GOd bless!
Last edited by Momof2sons; 03-14-2008 at 07:21 AM.
Annette, thank you for your continued prayers...was a long day at the clinic on Friday, the Primary Physician, the oncologist Gyn, had an emergency, which was fine, I would like to think that other people would be as understanding if it were me., so I was there over 5 hours..He had to examine me also, and said he really couldn't feel anything, which doesn't mean much other than he would find out what is going on once I am opened up, he said he couldn't honestly say until then, and that would be the only way.......
that blood work test they took, what's it called, the CS125, came up normal also, an 18, but that doesn't rule out things...in his eyes is only 25% accurate, and they, meaning research, are trying to come up with something that can detect early ovarian cancer in women by the blood work, other than that other test, since that test is not all that reliable in early cancer..this is something they are just "working" on now, they have not come up with anything definite yet.....they descend on you there like a hawk, wanting you to participate in things...I agreed to a number of things, but after awhile I had to back out...that was enough for me....they actually made me late for my other appointment at the other hospital...Went to Urodynamics at the other hospital then, that was lots of fun, ugh...glad that is over....again, Annette, thank you so very much for your support and prayers, I will take all the prayers I can get.....
My surgery is for Wednesday of this week, the 19th...will not be in tomorrow as I have to go through some more things at the clinic...admitting, etc....thank you again...God Bless....Janet
YEs the Urodynamic testing is such a joy! NOT! But the way I think of it is at least there are tests to try to determine the cause. I've had approx 5-6 over the last 10 years, in 4 different states, and they all have their own little unique way of doing them, but the end means are basicly the same.
Yes, I've had the CA125 done at MY request, and my primary Doc was reluctant to do it because she said as you mentioned, it has little meaning because it wasnt very accurate. Wonder if the one you had CS125 is new?
Yes they DO descend on you at Major medical facilities, Mayo did that to me also. But I was a willing party. I can understand with you, you can only DO SO MANY! Totaly understand that! I had become part of a study for lung cancer, before they did the "staging" procedure, lots of paper work to sign, with extra biopsies taken. With mine all being begnine, they STILL were'nt sure. Biopsies are so small that even a negative results isnt 100%. Cells can be missed, so in my opinion, Im glad they went in and took it out, that really IS the only 100% way they can tell. I'm so praying for a negative results for YOU as well!
I will certiantly continue to pray for that! Take care, and GOd bless my friend! Will look forward to your return.
Annette, no, the blood test I had done was the CA125, yikes, I called it the CS125, well, I was close....
No, that is what they are working on, developing a test that can define EARLY cancer, but they have a way to go on that yet....
If it is benign, they throw everything out....
You have been through so much...I can hardly believe it all...
Take care Annette...and my deepest thank you for the support and prayers....
LOL...Yes, you were close, One KEY OVER<<<<<..haha..too funny! The delete key is MY friend..haha
Believe it or not, going through things like this makes us stronger, and it will make you stronger as well. And someday, YOU will be helping someone like yourself who is going through something similar.
I was on your end myself at one point not too long ago when going through all the testing for the muscle disease. As I had mentioned it was online, that I had my best support system. To interact with someone who's going through something similar, lets you see the light somehow.
You will look back at all this someday, and see the strength it gave you. What is it they say..."This TOO shall pass"...
Hi Annette, well, I'm finally back, and it's good to be back....
Well, during surgery they did find cancer...it was in my fallopian tube, right hand side only, all self contained..plus one lymph node, very small also., had cancer..he did a compete resection there ...so, all cancer is gone except for microscopic cells which showed up in the peritoneal washings, which also showed up malignant, which is what the chemotherapy will take care of...I am in the third stage because it had spread the way it did to the lymph node, had it not, it would of been in a different stage...Dr. was surprised, did not expect to find any cancer...he told me the chemo was for precautionary reasons, and that I would be going through 6 rounds of it, in about a 5 month period...well, when I went in for my 4 week check up with him, he was on the computer and hands me a sheet that tells me women in my stage have about a 3 year survival rate...was stunned...he is very analytical, looks at averages, good surgeon, but not the best bed side manner....well, I flew to Houston Texas for a second opinion, whcih I am entitled to, and someway (God's help, that's how) I got in with the top Oncologist in this file of Ovarian and Fallopian tube cancer (Fallopian tube cancer is treated the same as ovarian cancer)...this hospital is M.D. Anderson, by the way, anyway, he examined me, also ran some tests, and goes before a board of doctors who go over your test results and findings (they had the results sent to them from the clinic from my surgery etc.)...and he said if even one Dr. seems to differ on the treatment plan, he lets you know..well, it seems they all agree with the Cleveland Clinic, the standard procedure of 6 rounds...He feels very optimistic for me, as he said, I am not the typical average patient that they take these percentages from...he said I was different, they caought the cancer, I had a resection, and it is all in my favor...so, with prayers and God's blessings, I will make it through this I am sure...I have had one chemo treatment already, go every 21 days, as long as the blood cell count etc. is at the level it should be...it's rough, but life isn't always easy, you just take it as it comes...they are glad they caught it when they did, had it not been for my bladder, who knows how far things could have gotten?? please keep praying for me...thank you so much...love, J.