12 years 2 months ago - 12 years 2 months ago#19440by SavvyPRpro
Forgot to mention that my "tumor" is white, looks like a ping pong ball - and is symmetrical -- as I saw a photo from my laparoscopic procedure. I believe and my GYN believes it's a menopausal-related fibroid - rare in its location but common for my age, family history and my being in mid-menopuase.... I got the full report and that's all there is... I signed a document that the hospital can talk to my siter, Shragae here. Clearly, patients who are involved in life-threatening dilemmas should take precedence, but then this is a very very large practice of top docs -- so why not offer me the option of another surgeon to do the surgery if mine is too busy with his workload? Why not have someone call me to explain what my path means? If you "threaten" to "rule out cancer" in the docs I signed, then any patient would be on pins and needles waiting to hear the results -- in ENGLISH, laymans terms. I called patient advocate's office anonymously to ask "what is a reasonable time frame to get a path results to rule out cancer" and "how should results be disclosed" and other such questions to assess what is reasonable and such. All she did was say, "each doctor is different"... which led me to believe it's merely a front to field complaints vs. actually advocate for patients. In the hospital's "PLEDGE", they tell us to ask questions and advise when pain is an issue but I now feel that I have done that and have been ignored. No one even reached out to me after my TURBT (tho they asked if they could in post op), to see how I was doing -- or to offer advice, meds for my post op symptoms. I plan to talk with my primary physician, who is a sweetheart and knows me well. He's very calm and may be willing to talk to my surgeon. I'll keep you posted.
It sure does seem like something is "missing" from the path report -- but I've seen the fax. There is only item #1 before the closing part of the report. In other words the gross description is the only one given.
I have no idea.
Bottom line is someone needs to explain the report to us -- perhaps we can request a phone appointment with the doctor and I can be on the call with my sister?? Just a thought. . .
Sorry to hear of the many distresses you are dealing with, but I noticed something as I read the entire thread..... On the post where you disclose the path report from the TURB - it seems to only be the gross description and that the microscopic findings are missing. Is it possible to either get another copy or ask it to be resent? Maybe there is a missing section that would clear up alot of this confusion. This is just a thought and I hope your situation improves, God Bless, Holly
My next bit of advise would be to find a Hospital Liason person. The Doctor said not to bother HIS staff. Still, you may be treading on thin ice even by doing this bit of reaching out. It seems that the Top Doc was being pretty clear in his meaning....
Actually, the more I think of this, it might not be a good idea to go over the Doc's head...
Hmmmmm, does she have a local Urologist that she can voice her concerns with???
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
12 years 2 months ago - 12 years 2 months ago#19431by shragae
Rosemary, great post. I agree with everything you say.
BUT there is one correction: top doc has never said the tumor is NOT cancer. Top doc suspects that it IS cancer. That is why he insisted on doing his own biopsy. . .
It was the OB / Gyn back in March who said it wasn't cancer.
At this point no one at top doc's office has explained the biopsy results to DS, but odds are it is benign or they would have moved her "up" in the queue. The complaint here is that we don't know and the not knowing (lack of communications) is exhausting.
Unfortunately the only person near DS to act as her advocate is her son, 21 and simply not mature enough. It is too much to put on his shoulders. There is no one else.
It has been my intention to travel the 1000 miles to stay with her during her surgery and post-op, but it keeps being postponed. I suppose I could reach out to top doc from 1000 miles away but given HIPAA don't know if they'd even talk to me. . .
We have faith in top doc or we wouldn't be with him, but you have no idea how many things have been done to DS without any explanation.
12 years 2 months ago - 12 years 2 months ago#19425by Rosemary
I am starting to get some clues here.
First of all, the "egg shaped" tumor...I've never heard a bladder tumor described this way....broccoli shaped, I've heard of...in trying to make sense of this, along with the clue that this famous Doctor wanted to take this case because of it's rarity, then there is something here that we are not familiar with...
Also, the Doctor says it's not Cancer, and obviously he isn't so concerned about getting it out...maybe there are people under his care who do have cancer and need the surgery room and surgery skills in a more timely manner than your sister does...
Or, maybe all of this is wrong and your Sister needs to go for a Second Opinion...but, where do you go for a second opinion when you are already at the top..
If the Doctor has told your sister to go home and to deal with her feelings the best that she can until it is her turn in the surgery, then he has said what he wants to say to her.
If she wants something faster, then she is going to have to take the bull by the horns and go someplace else...
Remind your sister that APPROACH and TIMING is everything. I know this from being a public servant. When one of the public comes at us with impatience and attitude looking for answers and help, then I have seen many time when myself or my co worker become less and less willing to give the help that they need....human nature, I think...
Telling you this with the best of intentions...
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006