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Don’t Understand
I appreciate everything that I have read on this forum. I really don’t understand how some of you handle this. The reason I am posting is I have a question. I am a 38 yr. old female. I have been having some slight stomach pain but I am having bad back pain. (Especially if I do any kind of work that I have to put the ole back into, Like vacuuming or cleaning the tub or shower)I am alos having leakage to the point of getting up and down causes me to leak.I though the pain was caused from a dropped bladder, after having 2 nice sized babies and a Hysto.(sp)I made a doctors appointment to see what could be done for the baldder problem. To my surprise I found out after a couple of test that I had a polyp in/on my bladder. Come Monday I go to the hospital to have a byo. The doctor said “there was a 50/50 chance it could be cancer”. He said “I had a mushroom shape polypon my bladder”. He said “He can’t do anything for the bladder dropping until he sees what the byo. report says. What do I think? What are the chances it is cancer? How do I prepair myself, for whatever it may be?One thing that bothers me is why do I have to go to the hospital for this, why could he not do it in the office? The doctor said” not to worry an gave me comfort,then left to get some paper work. Then the nurse come in and I’m tearing up(HATE TO CRY)and she said”don’t worry we have caught it early”. That hit me after I had left his office and took about 3 wrong turns on the way home. Any info or advice would be helpful.I really don’t know what to do or think. ???
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27 Replies
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I wanted to take the time and thank everone that e-mailed or sent e-cards to me after my surgery. You are all so nice, and I’m glad to have meet each and everyone of you if only on this forum. Thanks to this forum for allowing me to meet each of you.THANK YOU, THANK YOU, THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!! I will close with a big ROLL TIDE sense this is Saturday in the south and football in on, baby.
Love you all,
Jennifer -
Jenz,
Wendy is so right. This just isn’t time to panic yet and your statement of “what if” is the gold standard statement of classic panic attack.
My understanding of medical protocol is that you must wait until the doctor explains and interprets the results of your pathology before they will make a report available to you. This only makes sense from a layman’s point of view because most people do not understand the medical terminology that is couched in the report. Having a copy now might serve to only make your panic worse.
Interpretation and diagnosis is what your doctor is there for and that is what you are paying him for. Relax a little and let him be your doctor. When he has discussed your diagnosis and treatment then that will be the time to ask for a copy of your pathology.
This is just my two cents.
Your new bud,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Dear Jenz,
I’m sorry to see that posting and the replies has only added to your confusion. And calling the assistant being told your condition was ‘just congestion’ is not very helpful either…!
Ideally someone comes on after they know their pathology, there are so many types and grades of bladder cancer it can be mind boggling for a newcomer who isn’t sure of the exact type. It all depends on that, but from what you’re describing your uro thought it was of the most common, least threatening type, papillary tumors are mushroom-y looking.
Path reports can take a week, even ten days sometimes. The best thing to do ( I thnk) is not to go reading to many things on the web or the forum because it might hurt and not help at this point in time. That’s why we have these little sections, so newcomers don’t get too scared of the unknown. When the pathology is known, you are more able to focus on the area of the forum best for you and ask questions to those who have been through similar things.
Please try not to panic. Bring up your concern about the 6 vs. 3 month follow up. Since the guidelines are 3 months (in the USA- maybe it differs other places, under certain circumstances- but 3 months is very common and playing it safe, too), you could talk your uro into that if you push, I”m pretty sure. Just say “guidelines from the AUA”.
Ask if there was muscle present in the specimen as that is a requirement from a good reliable biopsy.
Take care,
Wendy
you think your confused????
No, I have not gone back to the doctor yet. I go back Thursday,for results in detail an a peek.
The doctors assistant called me Wednesday, Nov. 7th (2 days after my surgery, Monday Nov.5) when he called he told me everything was fine, all clear, no cancer.He called because my doctor is out of town and I ask to be contacted when they found something out. I think he actually called it “just congestion”??? I have no idea what that means and will ask Thursday.I do remember the Uro doctor telling me,when he first found it , that it looked like a mushroom. I just ask my husband and the doctor did tell him that he sent a/the biopsy to pathology. It seems that 2 days is not long enough for a pathology report. I have no idea. I will get a copy Thursday (if the doctor will give it to me) I have recently moved to this area and I had called and spoke with my family doctor in my old home town and he ask for me to bring a copy for him to see. I go see him while home for Thanksgiving. I am staying pretty calm right now. What will stay on my mind is what if??? I don’t want to do anything if is nothing, but… what if it does show a low grade cancer and he wants to just keep an eye on things. I want to be prepaired with questions so he knows that I have been researhing this myself and he can’t just forget about me for another 6 months. He told my husband he would want to check me every 6 months. From everthing that I have read 3 months would be more cautious.I know this is more of a reply than you expected, but my heading “Don’t understand” still hits the mark.
Thanks,
Jennifer/Jenz
Okay,
Bear with me, because I’m a little confused here…
Have you already had the post TUR consult with your Doctor, Jenz?
It is my vague understanding that the Doctor will not release the path reports until he has discussed the results with you first.
At least that has been my own experience.
Regards,
Ro
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006hmmmmm….wonder if anyone else has had a problem picking up their pathology report?
try calling back and be specific and ask if “so and so’s” pathology report is ready yet? At least make them look and then refuse you……….Pat
to be honest I called and ask for the results and the person on the phone just in general said they only released results to the doctor.
Jennifer
Jenz..you told me you called the medical imaging dept and they said you had to get the results from your doctor…..i’m assuming then that they did indeed have some results. The grading system now is just low or high grade…no middle ground anymore…i think they were getting into trouble with understaging so they eliminated the middle…who knows? They will have the staging however.
Don’t worry until you talk with your doctor and request a copy of the pathologists report.
We’ll go from there.
Pat
what if by some chance I find out he did not send for biopsy? What if he felt there was no need… What should I do? Also, if they don’t grade biopsies any more what am I looking for?
Well that and if he got enough of the specimen. As you know on my second opinion the pathologist said there was not enough of a specimen thus a second TURB. Like I said referring back to my initial end of the spectrum it doesn’t hurt to get the second opinion if only to confirm non-invasive blc and if insurance allows not a bad idea to get it from a major cancer center with great pathologists. Pat
Pat, I think you were under the impression the electric loop used on Jenz would wreck the pathology specimen, but it is the laser that is only used when a biopsy specimen isn’t needed because they are obviously ta,G1[modified to fix typo from before when I wrote g2] recurs. First TURs are always biopsied, and if not that is something to worry about as it’s not following guidelines. I doubt a uro would compromise himself by doing that.
WendySorry Wendy..and Jenz…you’re right…i was just having flashbacks to my own initial TURB……i apologize and hope all is well. Pat
Jenz and all, the labs are no longer stating grades on their pathology report. It now only states the type like Papillary or TIS, etc. low grade or high grade. No where near as detailed as the pathology reports were a few years ago. I am one who has dealt with papillary superficial non-invasive transitional cell carcinoma for 7 years and plouged through all the warnings, cautions and over treatments that were not necessary with my particular spectrum and type of bladder cancer. Whenever you receive advice or recommendations from anyone on this forum it would be wise to consider at what end of the spectrum that person is themselves. Rosie
Hi Pat and Jenz,
pat….don’t jump to conclusions. The path report could not come back within 2 days anyway right?, Jenz will speak about it next week with the doctor…. Jenz, might be that the tumor was so obviously a low grade papillary that they didn’t grade it.
That is what happened to my sister when she went to Sloane, the doctor said her tumor was “too low to grade”, and said it’s a Ta, non aggressive tumor. He did not say polyp, as they are actually quite rare, but many times doctors do use this term (instead of the WHO term “papillary of low malignant potential PLMP). TaG1 papillary tumors are the most common tumors in bladder cancer-land and are often described as mushrooms, so I’m pretty confident that Jenz’ path will be friendly (all things being relative in cancer land!).
My sister did not get a second opinion…she’s 8-9 yrs down the road and cancer free. But Sloane was her second opinion and where she went for the TUR after her dx.
If there is any doubt, sometimes the next best step is a second opinion on the pathology rather than necessarily getting a second doctor involved. Just my opinion, though.
Best to all,
WendyJennifer…honestly i don’t want to rain on your parade…..but did he even send anything to pathology? If you had this done in the hospital just call the medical imaging dept and ask for a copy of it..give them the date it was done..and they have to give it to you. Something doesn’t sound quite right here. I sure hope i’m wrong.
Let us know. I’m always one for second opinions.
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